60 pippa.io Invisible Not Broken http://invisiblenotbroken.com/home/ en Monica Michelle Invisible Not Broken- Invisible Illness and Chronic Illness Podcast yes Monica Michelle info+5b6ba27ab39d904e57d877bb@mg.pippa.io episodic https://assets.pippa.io/shows/5b6ba27ab39d904e57d877bb/show-cover.jpg http://invisiblenotbroken.com/home/ Invisible Not Broken https://feed.pippa.io/public/shows/5b6ba27ab39d904e57d877bb Interview with Lisa Sniderman on her book: A LIGHT IN THE DARKNESS: TRANSCENDING CHRONIC ILLNESS THROUGH THE POWER OF ART DERMATOMYOSITIS Interview with Lisa Sniderman on her book: A LIGHT IN THE DARKNESS: TRANSCENDING CHRONIC ILLNESS THROUGH THE POWER OF ART DERMATOMYOSITIS Fri, 21 Sep 2018 13:30:00 GMT 58:01 5ba150a173bdd68c59440894 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/interview-with-lisa-sniderman-on-her-book-a-light-in-the-dar A Chronic Illness Podcast full Buy A Light in the Darkness: Transcending Chronic Illness Through the Power of Art

I got an up close look at an amazing woman, Lisa Sniderman, Aoede, with an interview about her upcoming book A Light in the Darkness: Transcending Chronic Illness Through the Power of Art and her chronic illness Dermatomyositis. She is full of fairy sparkle and creativity. Just listening to her made me feel so inspired. We talk a lot about what it means to be chronically ill and disabled as an artist. In many ways, it is a tremendous escape to use art as a therapy when dealing with chronic pain. We go over some real ways, tools, and apps that can help you explore new art forms.

Name *

Lisa Sniderman

What is your disorder? *

Dermatomyositis (DM)-a rare autoimmune progressive muscle weakness disease, which attacks and weakens my immune system, muscles and skin as well as my mind and spirit, and if left untreated, could result in complete muscle wasting and long-term disability, as well as other complications.

At what age did your disorder become a daily issue? *

36

Who were you before your illness became debilitating? *

An Environmental Scientist and Singer-Songwriter-and ME-someone on go go go like that energizer bunny-hopping from activity to activity and never stopping until my body forced me to! Like when I was diagnosed: I was getting married in 6 weeks, I was prepping for a Northwest Tour and releasing my first full-length album, and planning a huge environmental workshop, and taking lapidary and songwriting classes, all at the same time.

What would you do if you were not dealing with your invisible illness? *

Still be on my path to fostering healing and doing expressive and teaching arts-just wouldn't have to do it WHILE battling my DM-and maybe I would be packing more into my days..

What would you like people to know about your daily life? *

I am NOT my disease. I spend my days in my place of joy-creating, expressing, or sharing my art and music-mostly from home so that I do not have to focus on the illness, the disease, the darkness, the doctor appointments, the things I can no longer do. It doesn't mean I don't struggle daily with weakness, get tired easily, have little stamina and energy when out in the world. It means I must choose my specific activities each day so I can make sure I have the energy for those things that DO bring me or others joy, and rest if I am going to do a big activity. I feel blessed to choose how to spend my days. I feel grateful that I am able to rest when I need to. Some days, I feel isolated from the world, but when I am out, I don't take my surroundings or my activities for granted. I treasure and try to be aware of living in each moment. I am so fortunate to have an amazing husband and supportive family and friends, and the sweetest fox terrier Alice, (I feel like I'm HER support animal!) so I don't go it alone.

What would make living and moving in the world easier for you? *

If I had more stamina and strength! Otherwise, I use my cane when I am out, and bring my walker if it is a longer distance. I use uber or lyft to get around, so I don't constantly have to rely on my husband and can feel more independent. Also, MORE CHAIRS when I am in stores! OMG I feel like I have to walk and walk and if I only have my cane, I tire easily-but no chair!

Do you have any life hacks? *

Sure! https://ourheartspeaks.org/wp-content/uploads/2018/07/Life-Lessons.pdf

What kind of support do you get from family or friends? *

I am blessed! I have surrounded myself with loving supportive family and friends during the hardest darkest moments, I learned that not everyone deals with sickness or caring for a sick person the same. I learned who stuck by me. Now that I have been living with chronic illness for 10 years, I find that most of friends get that I have limitations but don't really need to know the details of what it is like for me to go through my day to day dealing with DM. My husband is a saint and a rock. I swear I wouldn't be here let alone the person I am today without him as a true partner by my side. I love that he believes me, wants me to rest, gets that I have limitations and wants to care for me. I know how rare that is.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Not believe-but more like, WOW you look great! I'm so glad to see you feeling well! Or you look amazing-therefore you must feel well!

How has your invisible illness affected your relationships? *

Yes in that I no longer drive (I haven't since 2010) nor do I have a lot of stamina for being out in the world. That means that people who want to stay in my life often do it on my terms-e.g., come to me rather than me going to them. I am able to do more now, but that has been the case for many years. People who are close to me accommodate. Same with my crazy restricted diet-I've been gluten, sugar, and dairy free for 10 years! Another example, my Producer and I were working on a full-length fantasy musical audiobook. He lives in LA, but drove up to my house in SF Bay Area so we could work together because he knew it would be less taxing on me. Also, with my husband! I was diagnosed 6 weeks before we got married! So for all of our married life, it has been caretaker-patient relationship-especially when I flared in 2010 and had to spend a month in the hospital due to complete muscle weakness and then months of grueling rehab to regain my strength, relearn to sit up, stand, walk, sing and play. It has affected every relationship I have I suppose!

Is there anything you are afraid to tell people in your life? *

At times, especially because I’m almost always home, I feel like I’m hiding from the world, playing it safe indoors. Maybe that’s why I create light characters, focus on fantasy, and want to connect with my inner child. As I’ve taken on my artist-Aoede the Muse’s identity, inspiring others, I’m disinclined to share the scary, icky, fearful, sad, negative feelings—the secret spaces where I’ve stuffed my skeletons. I tell myself I have to put on a smile and be upbeat, not show weakness or have self-doubt. It’s much easier to tell the world that all is beautiful than to admit that living with a chronic illness is harder than anything I’ve ever faced; that some days it’s exhausting to get out of bed, despite my positive attitude and optimism; that I get tired of thinking and talking about being sick, and just plain being sick; that the endless therapies, drug cocktails, and unwanted side effects keep me on a roller coaster; that I resent having precious moments of my life replaced with 156 doctors’ appointments; that I wish I had more stamina for being in the world; that I wonder where David’s and my relationship would be had I never gotten sick—if he didn’t have to do all the shopping, cleaning, cooking, and driving, and we had an equal partnership instead of a caretaker- patient relationship.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

I have had the same rheumatologist up until Oct 2017-so I felt fortunate and listened to...

What is your best coping mechanism? *

creating arts and music! (e.g., expressive arts-creating, recording, performing songs; creating and recording full-length musicals on audiobooks and adapting them to musical theater stage plays; sharing my story, writing and releasing my memoir; collaborating with 50 artists who use creativity to heal to share their stories; helping others navigate their personal darkness; being a teaching artist

What are you the most concerned about and the hopeful for in the future? *

Concern-that I will stay here at this place and this will be my best quality of life that I won't be able to get off the treatment-that there is no remission or cure-only manage and get the best quality of life I can; that I will flare and have setbacks and revert to the shell of a person I was in 2010 in the hospital and not have the enthusiasm and physical ability to sing, to play, to create; that I never know when I am doing too much until it is too late. I fear the unknown, particularly loss or change in security, support, and safety. In a worst-case scenario, being forced to work to maintain financial security could further stress my body, make my DM flare up, and land me back in the hospital, undoing years of recovery. I imagine losing my support, my gift of time, and my ability to live in my place of joy and focus on my art each day. I worry that I could change as a person— that I could lose my drive, my passions, my heart, and my spirit and have no room or interest to chase or follow my dreams if I were constantly stressed and concerned about making ends meet or getting sicker. I think of the negative impact such losses could have on my relationships with David and other family members, friends, and even fans. I can’t help but wonder if I even fear success because of what it might cost me. Hopes: I am managing for now! I am living in my place of joy so that is the best place I could be. I am hopeful I will continue to have the best quality of life I can. I am hopeful my energy, strength and stamina will improve over time. I am hopeful I will be able to travel, stay out in the world for longer, do activities that make me feel a sense of normalcy. I know I will continue to create to help me and others heal. Also, that there is a CURE for myositis in the future and better diagnosing so others (especially the kids juvenile myositis) don't have to suffer!

What is your favorite swear word?

HA! probably ass

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

Love to make sure we talk about: my upcoming memoir: "A Light in the Darkness-Transcending Chronic Illness through the Power of Art and Attitude" Sep 21 publish date-and Myositis Awareness Day; and Lights in the Darkness-my collaboration with more than 50 artists who are using creativity to help heal to share stories of art and healing-live/streaming event in December 2018. Perhaps also success-what does it mean how has it changed etc. bc there are so many ways to think about success besides financial it is important to attract abundance into your life.

What is the hardest and/or best lesson your condition has taught you?

When life throws us curveballs; when we’ve lost our inspiration because of a significant change in health status, and when we live day in and day out with a chronic disease or disability, it’s tempting to want to give up our dreams, to play the victim. It’s easy to succumb to discouragement, self-pity, or even despair. But dreams and significant health challenges aren’t mutually exclusive. I’m a living example. We can live with hope, passion, and joy, even if the shape and substance of our dreams have changed. We can live well with chronic illness!

What is the best purchase under $100 that helped your life

My unique cane! It is twisted wood and multi-colored and so fits my bright, quirky brand and personality!

]]>
Buy A Light in the Darkness: Transcending Chronic Illness Through the Power of Art

I got an up close look at an amazing woman, Lisa Sniderman, Aoede, with an interview about her upcoming book A Light in the Darkness: Transcending Chronic Illness Through the Power of Art and her chronic illness Dermatomyositis. She is full of fairy sparkle and creativity. Just listening to her made me feel so inspired. We talk a lot about what it means to be chronically ill and disabled as an artist. In many ways, it is a tremendous escape to use art as a therapy when dealing with chronic pain. We go over some real ways, tools, and apps that can help you explore new art forms.

Name *

Lisa Sniderman

What is your disorder? *

Dermatomyositis (DM)-a rare autoimmune progressive muscle weakness disease, which attacks and weakens my immune system, muscles and skin as well as my mind and spirit, and if left untreated, could result in complete muscle wasting and long-term disability, as well as other complications.

At what age did your disorder become a daily issue? *

36

Who were you before your illness became debilitating? *

An Environmental Scientist and Singer-Songwriter-and ME-someone on go go go like that energizer bunny-hopping from activity to activity and never stopping until my body forced me to! Like when I was diagnosed: I was getting married in 6 weeks, I was prepping for a Northwest Tour and releasing my first full-length album, and planning a huge environmental workshop, and taking lapidary and songwriting classes, all at the same time.

What would you do if you were not dealing with your invisible illness? *

Still be on my path to fostering healing and doing expressive and teaching arts-just wouldn't have to do it WHILE battling my DM-and maybe I would be packing more into my days..

What would you like people to know about your daily life? *

I am NOT my disease. I spend my days in my place of joy-creating, expressing, or sharing my art and music-mostly from home so that I do not have to focus on the illness, the disease, the darkness, the doctor appointments, the things I can no longer do. It doesn't mean I don't struggle daily with weakness, get tired easily, have little stamina and energy when out in the world. It means I must choose my specific activities each day so I can make sure I have the energy for those things that DO bring me or others joy, and rest if I am going to do a big activity. I feel blessed to choose how to spend my days. I feel grateful that I am able to rest when I need to. Some days, I feel isolated from the world, but when I am out, I don't take my surroundings or my activities for granted. I treasure and try to be aware of living in each moment. I am so fortunate to have an amazing husband and supportive family and friends, and the sweetest fox terrier Alice, (I feel like I'm HER support animal!) so I don't go it alone.

What would make living and moving in the world easier for you? *

If I had more stamina and strength! Otherwise, I use my cane when I am out, and bring my walker if it is a longer distance. I use uber or lyft to get around, so I don't constantly have to rely on my husband and can feel more independent. Also, MORE CHAIRS when I am in stores! OMG I feel like I have to walk and walk and if I only have my cane, I tire easily-but no chair!

Do you have any life hacks? *

Sure! https://ourheartspeaks.org/wp-content/uploads/2018/07/Life-Lessons.pdf

What kind of support do you get from family or friends? *

I am blessed! I have surrounded myself with loving supportive family and friends during the hardest darkest moments, I learned that not everyone deals with sickness or caring for a sick person the same. I learned who stuck by me. Now that I have been living with chronic illness for 10 years, I find that most of friends get that I have limitations but don't really need to know the details of what it is like for me to go through my day to day dealing with DM. My husband is a saint and a rock. I swear I wouldn't be here let alone the person I am today without him as a true partner by my side. I love that he believes me, wants me to rest, gets that I have limitations and wants to care for me. I know how rare that is.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Not believe-but more like, WOW you look great! I'm so glad to see you feeling well! Or you look amazing-therefore you must feel well!

How has your invisible illness affected your relationships? *

Yes in that I no longer drive (I haven't since 2010) nor do I have a lot of stamina for being out in the world. That means that people who want to stay in my life often do it on my terms-e.g., come to me rather than me going to them. I am able to do more now, but that has been the case for many years. People who are close to me accommodate. Same with my crazy restricted diet-I've been gluten, sugar, and dairy free for 10 years! Another example, my Producer and I were working on a full-length fantasy musical audiobook. He lives in LA, but drove up to my house in SF Bay Area so we could work together because he knew it would be less taxing on me. Also, with my husband! I was diagnosed 6 weeks before we got married! So for all of our married life, it has been caretaker-patient relationship-especially when I flared in 2010 and had to spend a month in the hospital due to complete muscle weakness and then months of grueling rehab to regain my strength, relearn to sit up, stand, walk, sing and play. It has affected every relationship I have I suppose!

Is there anything you are afraid to tell people in your life? *

At times, especially because I’m almost always home, I feel like I’m hiding from the world, playing it safe indoors. Maybe that’s why I create light characters, focus on fantasy, and want to connect with my inner child. As I’ve taken on my artist-Aoede the Muse’s identity, inspiring others, I’m disinclined to share the scary, icky, fearful, sad, negative feelings—the secret spaces where I’ve stuffed my skeletons. I tell myself I have to put on a smile and be upbeat, not show weakness or have self-doubt. It’s much easier to tell the world that all is beautiful than to admit that living with a chronic illness is harder than anything I’ve ever faced; that some days it’s exhausting to get out of bed, despite my positive attitude and optimism; that I get tired of thinking and talking about being sick, and just plain being sick; that the endless therapies, drug cocktails, and unwanted side effects keep me on a roller coaster; that I resent having precious moments of my life replaced with 156 doctors’ appointments; that I wish I had more stamina for being in the world; that I wonder where David’s and my relationship would be had I never gotten sick—if he didn’t have to do all the shopping, cleaning, cooking, and driving, and we had an equal partnership instead of a caretaker- patient relationship.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

I have had the same rheumatologist up until Oct 2017-so I felt fortunate and listened to...

What is your best coping mechanism? *

creating arts and music! (e.g., expressive arts-creating, recording, performing songs; creating and recording full-length musicals on audiobooks and adapting them to musical theater stage plays; sharing my story, writing and releasing my memoir; collaborating with 50 artists who use creativity to heal to share their stories; helping others navigate their personal darkness; being a teaching artist

What are you the most concerned about and the hopeful for in the future? *

Concern-that I will stay here at this place and this will be my best quality of life that I won't be able to get off the treatment-that there is no remission or cure-only manage and get the best quality of life I can; that I will flare and have setbacks and revert to the shell of a person I was in 2010 in the hospital and not have the enthusiasm and physical ability to sing, to play, to create; that I never know when I am doing too much until it is too late. I fear the unknown, particularly loss or change in security, support, and safety. In a worst-case scenario, being forced to work to maintain financial security could further stress my body, make my DM flare up, and land me back in the hospital, undoing years of recovery. I imagine losing my support, my gift of time, and my ability to live in my place of joy and focus on my art each day. I worry that I could change as a person— that I could lose my drive, my passions, my heart, and my spirit and have no room or interest to chase or follow my dreams if I were constantly stressed and concerned about making ends meet or getting sicker. I think of the negative impact such losses could have on my relationships with David and other family members, friends, and even fans. I can’t help but wonder if I even fear success because of what it might cost me. Hopes: I am managing for now! I am living in my place of joy so that is the best place I could be. I am hopeful I will continue to have the best quality of life I can. I am hopeful my energy, strength and stamina will improve over time. I am hopeful I will be able to travel, stay out in the world for longer, do activities that make me feel a sense of normalcy. I know I will continue to create to help me and others heal. Also, that there is a CURE for myositis in the future and better diagnosing so others (especially the kids juvenile myositis) don't have to suffer!

What is your favorite swear word?

HA! probably ass

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

Love to make sure we talk about: my upcoming memoir: "A Light in the Darkness-Transcending Chronic Illness through the Power of Art and Attitude" Sep 21 publish date-and Myositis Awareness Day; and Lights in the Darkness-my collaboration with more than 50 artists who are using creativity to help heal to share stories of art and healing-live/streaming event in December 2018. Perhaps also success-what does it mean how has it changed etc. bc there are so many ways to think about success besides financial it is important to attract abundance into your life.

What is the hardest and/or best lesson your condition has taught you?

When life throws us curveballs; when we’ve lost our inspiration because of a significant change in health status, and when we live day in and day out with a chronic disease or disability, it’s tempting to want to give up our dreams, to play the victim. It’s easy to succumb to discouragement, self-pity, or even despair. But dreams and significant health challenges aren’t mutually exclusive. I’m a living example. We can live with hope, passion, and joy, even if the shape and substance of our dreams have changed. We can live well with chronic illness!

What is the best purchase under $100 that helped your life

My unique cane! It is twisted wood and multi-colored and so fits my bright, quirky brand and personality!

]]>
CSF Leak and Ehlers Danlos Pain Management Physicians Assistant Helps A Zebra Out With Chronic Pain Management Questions and Life on Disability With A Chronic Illness CSF Leak and Ehlers Danlos Pain Management Physicians Assistant Helps A Zebra Out With Chronic Pain Management Questions and Life on Disability With A Chronic Illness Wed, 12 Sep 2018 00:00:09 GMT 1:09:01 5b982be97f20a7554d7124c2 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/cfs-leak-and-ehlers-danlos-pain-management-physicians-assist A Chronic Illness Podcast full Life can be full of kismet. I just started doing live recording on ZubiaLive about chronic illness and trying to live a life and the site wanted to connect with LinkdIn. I have not been active on LinkdIn since I was a photographer. So I did my best to create a decent profile for Invisible Not Broken Podcast. In less than an hour I had gotten a lovely email from a Pain Management Doctors PA. who also has Ehlers Danlos Syndrome. A fellow zebra who knows things from the other side of the stethoscope? I grabbed her for an interview the very next day!

I had some other things to post but this is far too important. If you want to skip right to the point on pain management lists and what to do or say to have a better emergency room experience go to minute 26 and keep listening. We meander a bit but you will get what you need. If you have the time listen all the way through. This woman has a way of breaking things down and doctor PTSD might be my new favorite phrase.

Links

Ehlers Danlos Syndrome

CSF Leak

Krantom I wish I had a better source for this but getting information on Krantom for pain management is not easy. We are in no way endorsing any particular pain management I think we would all just like unbiased pain management information.

California Taxes on Medical Marijuana (call your congressperson or Senator)

VA Opioid Restrictions

CURE

Regan Era Mental Health Policies and California

Links

Ehlers Danlos Syndrome

CFS Leak

Krantom I wish I had a better source for this but getting information on Krantom for pain management is not easy. We are in no way endorsing any particular pain management I think we would all just like unbiased pain management information.

California Taxes on Medical Marijuana (call your congressperson or Senator)

VA Opioid Restrictions

Website/Blog, Twitter, & Instagram Handle

MypainIQ.com (in progress), twitter: @brianna3207, IG:@Brianna_pa.c

What is your disorder? *

hEDS, spinal CSF leak, POTS, dysautonomia

At what age did your disorder become a daily issue? *

26

Who were you before your illness became debilitating? *

13

What would you do if you were not dealing with your invisible illness? *

Probably would still be chasing happiness and continuing my negative self- talk

What would you like people to know about your daily life? *

It's hard! The suff most people take for granted is often a really big deal if I can accomplish it that day! Also my degree of functionality is not by accident. I literally spend hours a day doing PT, meditation, organic, GF, non dairy meal prep, etc.

What would make living and moving in the world easier for you? *

If more people were kind to each other! And if healthcare providers werent held hostage by insurance, treatment would be so much more timely and competent

Do you have any life hacks? *

Lots of pain hacks (a whole other interview's worth!), kindness, medical form for the ER (I'll send the word doc), meditation

What kind of support do you get from family or friends? *

Amaaaazing support from my hubby. My brother is awesome and so are my parents/ inlaws. I have a great employer and solid group of friends

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

All the time! The time the ER doc said I didn't have EDS bc my skin wasn't stretchy enough. And my patients dont believe how sick I am

How has your invisible illness affected your relationships? *

Yes, but for the better. I am kinder to myself, surrounded by more genuine and accepting humans, and the toxic/superficial people have sashayed away!

Is there anything you are afraid to tell people in your life? *

I think I'm afraid that people can't handle deep convos about morality and disability.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes! I essentially have to prove how sick I am

What is your best coping mechanism? *

Meditation for the mind, cannabis and exercise for the body

What are you the most concerned about and thehopeful for in the future? *

I'm concerned about the lack of treatment for my fellow zebras, but I'm hopeful that I can help change that!

What is your favorite swear word?

Fuck!

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

Gender bias in medicine, opioid hysteria negatively affecting pain patients, cannabis as a viable alternative

What is the hardest and/or best lesson your condition has taught you?

I've learned to view each day as a gift!

What is the best purchase under $100 that helped your life

My journal!

CURE

Regan Era Mental Health Policies and California

]]>
Life can be full of kismet. I just started doing live recording on ZubiaLive about chronic illness and trying to live a life and the site wanted to connect with LinkdIn. I have not been active on LinkdIn since I was a photographer. So I did my best to create a decent profile for Invisible Not Broken Podcast. In less than an hour I had gotten a lovely email from a Pain Management Doctors PA. who also has Ehlers Danlos Syndrome. A fellow zebra who knows things from the other side of the stethoscope? I grabbed her for an interview the very next day!

I had some other things to post but this is far too important. If you want to skip right to the point on pain management lists and what to do or say to have a better emergency room experience go to minute 26 and keep listening. We meander a bit but you will get what you need. If you have the time listen all the way through. This woman has a way of breaking things down and doctor PTSD might be my new favorite phrase.

Links

Ehlers Danlos Syndrome

CSF Leak

Krantom I wish I had a better source for this but getting information on Krantom for pain management is not easy. We are in no way endorsing any particular pain management I think we would all just like unbiased pain management information.

California Taxes on Medical Marijuana (call your congressperson or Senator)

VA Opioid Restrictions

CURE

Regan Era Mental Health Policies and California

Links

Ehlers Danlos Syndrome

CFS Leak

Krantom I wish I had a better source for this but getting information on Krantom for pain management is not easy. We are in no way endorsing any particular pain management I think we would all just like unbiased pain management information.

California Taxes on Medical Marijuana (call your congressperson or Senator)

VA Opioid Restrictions

Website/Blog, Twitter, & Instagram Handle

MypainIQ.com (in progress), twitter: @brianna3207, IG:@Brianna_pa.c

What is your disorder? *

hEDS, spinal CSF leak, POTS, dysautonomia

At what age did your disorder become a daily issue? *

26

Who were you before your illness became debilitating? *

13

What would you do if you were not dealing with your invisible illness? *

Probably would still be chasing happiness and continuing my negative self- talk

What would you like people to know about your daily life? *

It's hard! The suff most people take for granted is often a really big deal if I can accomplish it that day! Also my degree of functionality is not by accident. I literally spend hours a day doing PT, meditation, organic, GF, non dairy meal prep, etc.

What would make living and moving in the world easier for you? *

If more people were kind to each other! And if healthcare providers werent held hostage by insurance, treatment would be so much more timely and competent

Do you have any life hacks? *

Lots of pain hacks (a whole other interview's worth!), kindness, medical form for the ER (I'll send the word doc), meditation

What kind of support do you get from family or friends? *

Amaaaazing support from my hubby. My brother is awesome and so are my parents/ inlaws. I have a great employer and solid group of friends

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

All the time! The time the ER doc said I didn't have EDS bc my skin wasn't stretchy enough. And my patients dont believe how sick I am

How has your invisible illness affected your relationships? *

Yes, but for the better. I am kinder to myself, surrounded by more genuine and accepting humans, and the toxic/superficial people have sashayed away!

Is there anything you are afraid to tell people in your life? *

I think I'm afraid that people can't handle deep convos about morality and disability.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes! I essentially have to prove how sick I am

What is your best coping mechanism? *

Meditation for the mind, cannabis and exercise for the body

What are you the most concerned about and thehopeful for in the future? *

I'm concerned about the lack of treatment for my fellow zebras, but I'm hopeful that I can help change that!

What is your favorite swear word?

Fuck!

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

Gender bias in medicine, opioid hysteria negatively affecting pain patients, cannabis as a viable alternative

What is the hardest and/or best lesson your condition has taught you?

I've learned to view each day as a gift!

What is the best purchase under $100 that helped your life

My journal!

CURE

Regan Era Mental Health Policies and California

]]>
Fibromyalgia, Chronic Illness and School, Target Should Do Better, Thank you ACA, and a Kinder Gentler World for Spoonies Fibromyalgia, Chronic Illness and School, Target Should Do Better, Thank you ACA, and a Kinder Gentler World for Spoonies Thu, 06 Sep 2018 00:00:24 GMT 58:24 5b90462dccdae177435e145d no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/fibromyalgia-chronic-illness-and-school-target-should-do-bet A Chronic Illness Podcast full Links From Fibromyalgia Interview :

Fibromyalgia

Frock Flicks

Bored Panda

Good Witch

Savella Fibromyalgia Medication

Sleep Number Bed

Cost of Chronic Illness (Past Episode)

ACA

What is your disorder? *

Fibromyalgia

At what age did your disorder become a daily issue? *

12

Who were you before your illness became debilitating? *

I hadn’t really figured out who I was for sure. I was a week away from my 16th birthday when I was diagnosed and by that time I was in pain every day and had been for 3 years so I don’t really have a time I can point to in that I didn’t have pain when I was old enough to really have a firm identity. However, I loved to golf before my pain got worse and before I was diagnosed and figured out why I always felt worse after an hour at the driving range so I miss that and also I had a whole plan for college and what I would do as a freshman which got turned completely upside down. (I went to a private Christian college prep school and because of that all 4 high school grades were made to go to college day and I had a whole plan after that first years)

What would you do if you were not dealing with your invisible illness? *

Oh gosh, what a hard question to come up with an answer for. I think I would probably either be in the movie industry or coding but I honestly don’t know.

What would you like people to know about your daily life? *

Everything I do takes so much more energy than you think. I take a nap every day at lunch or at least lay down because otherwise, I won’t make it through the day. I may be smiling and laughing but my back is still hurting constantly. If I say I’m tired it is completely different then your tired. Sometimes my brain just doesn’t work right.

What would make living and moving in the world easier for you? *

Less craziness to get my pain meds🤪 no but really just more understanding and better research to bring about better medication so we can stop treating the symptoms and start treating the cause

Do you have any life hacks? *

Oh ,lots I have an ac adapter in my car so I can plug both of my heat pads in and have heated seats in my car when my back is not behaving. Putting things where I know I will see them so they hopefully don’t get forgotten. Lots and lots of reminders on my phone. Notes app on my phone. Hug the puppy when you get down!

What kind of support do you get from family or friends? *

My mom is great super supportive and my go-to insurance guru as she is an hr person for her job! My brother and dad have a hard time understanding my choices we are working on it. My friends are great! My small group girls let me come and barely say anything at all on bad Fibro fog days and just let me be there. I also have two friends who I go to the movies with most weeks and they are great they are always ok if I have to cancel last minute and will also just come to hang out with me if I’m not feeling like going anywhere

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Oh, so many times. My favorite has always been being told (yelled at) I should not be using my grandma's handicap placard in the target parking lot

How has your invisible illness affected your relationships? *

I lost most of my friends in high school because people either didn’t believe me or because they just didn't want to put in the effort to stay friends when I wasn’t there every day. It has been a big factor in my relationship with my dad and brother

Is there anything you are afraid to tell people in your life? *

I’m pretty open about everything but I haven’t ever really told my mom or anyone in my family how close I got to suicide when I was severely depressed in my failed year at college (that is a whole crazy story)

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Ones who aren’t my normal doctors yes!

What is your best coping mechanism? *

Soaking in a Hot tub or bath and Great Dane Cuddles

What are you the most concerned about and the hopeful for in the future? *

I’m most concerned about finding a guy who is willing and able to handle all of this. I’m most hopeful for my changing family relationships

What is your favorite swear word?

Oh gosh I don’t swear that much but when I do it’s usually fuck

What is the hardest and/or best lesson your condition has taught you?

It has taught me to live in the present and only plan so far in the future

What is the best purchase under $100 that helped your life

My U-shaped body pillow (my current one my mom made for me and cost more but my original was about 75)

]]>
Links From Fibromyalgia Interview :

Fibromyalgia

Frock Flicks

Bored Panda

Good Witch

Savella Fibromyalgia Medication

Sleep Number Bed

Cost of Chronic Illness (Past Episode)

ACA

What is your disorder? *

Fibromyalgia

At what age did your disorder become a daily issue? *

12

Who were you before your illness became debilitating? *

I hadn’t really figured out who I was for sure. I was a week away from my 16th birthday when I was diagnosed and by that time I was in pain every day and had been for 3 years so I don’t really have a time I can point to in that I didn’t have pain when I was old enough to really have a firm identity. However, I loved to golf before my pain got worse and before I was diagnosed and figured out why I always felt worse after an hour at the driving range so I miss that and also I had a whole plan for college and what I would do as a freshman which got turned completely upside down. (I went to a private Christian college prep school and because of that all 4 high school grades were made to go to college day and I had a whole plan after that first years)

What would you do if you were not dealing with your invisible illness? *

Oh gosh, what a hard question to come up with an answer for. I think I would probably either be in the movie industry or coding but I honestly don’t know.

What would you like people to know about your daily life? *

Everything I do takes so much more energy than you think. I take a nap every day at lunch or at least lay down because otherwise, I won’t make it through the day. I may be smiling and laughing but my back is still hurting constantly. If I say I’m tired it is completely different then your tired. Sometimes my brain just doesn’t work right.

What would make living and moving in the world easier for you? *

Less craziness to get my pain meds🤪 no but really just more understanding and better research to bring about better medication so we can stop treating the symptoms and start treating the cause

Do you have any life hacks? *

Oh ,lots I have an ac adapter in my car so I can plug both of my heat pads in and have heated seats in my car when my back is not behaving. Putting things where I know I will see them so they hopefully don’t get forgotten. Lots and lots of reminders on my phone. Notes app on my phone. Hug the puppy when you get down!

What kind of support do you get from family or friends? *

My mom is great super supportive and my go-to insurance guru as she is an hr person for her job! My brother and dad have a hard time understanding my choices we are working on it. My friends are great! My small group girls let me come and barely say anything at all on bad Fibro fog days and just let me be there. I also have two friends who I go to the movies with most weeks and they are great they are always ok if I have to cancel last minute and will also just come to hang out with me if I’m not feeling like going anywhere

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Oh, so many times. My favorite has always been being told (yelled at) I should not be using my grandma's handicap placard in the target parking lot

How has your invisible illness affected your relationships? *

I lost most of my friends in high school because people either didn’t believe me or because they just didn't want to put in the effort to stay friends when I wasn’t there every day. It has been a big factor in my relationship with my dad and brother

Is there anything you are afraid to tell people in your life? *

I’m pretty open about everything but I haven’t ever really told my mom or anyone in my family how close I got to suicide when I was severely depressed in my failed year at college (that is a whole crazy story)

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Ones who aren’t my normal doctors yes!

What is your best coping mechanism? *

Soaking in a Hot tub or bath and Great Dane Cuddles

What are you the most concerned about and the hopeful for in the future? *

I’m most concerned about finding a guy who is willing and able to handle all of this. I’m most hopeful for my changing family relationships

What is your favorite swear word?

Oh gosh I don’t swear that much but when I do it’s usually fuck

What is the hardest and/or best lesson your condition has taught you?

It has taught me to live in the present and only plan so far in the future

What is the best purchase under $100 that helped your life

My U-shaped body pillow (my current one my mom made for me and cost more but my original was about 75)

]]>
<![CDATA[Writing Through Lupus, Fibromyalgia, Hepatitis B, Neurological Functional Disorder, & Stroke: The Indomitable Georgiana]]> Fri, 31 Aug 2018 00:53:15 GMT 39:12 5b7f3844b4fc4497744761cb no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b7f3844b4fc4497744761cb A Chronic Illness Podcast full https://georgiana3026.wixsite.com/mybeautifultr: website

https://twitter.com/mybeautifulTr

/https://www.facebook.com/mybeautifulTr/

https://www.facebook.com/groups/mybeautifultrauma/

What is your disorder? *

SLE Lupus, Fibromyalgia, Hepatitis B, Neurological Functional Disorder, Stroke

At what age did your disorder become a daily issue? *

12

Who were you before your illness became debilitating? *

Youth Worker

What would you do if you were not dealing with your invisible illness? *

An active member of the community Urban Vision, while being a Youth Worker

What would you like people to know about your daily life? *

My health is not reliable (i have good days but bad, I get sick easily and fatigue levels can come and go without warning)

What would make living and moving in the world easier for you? *

Being able to work from home (Which I started this year) Also not having illnesses

Do you have any life hacks? *

Stay Positive, even when it's hard too

What kind of support do you get from family or friends? *

Emotional, Love and travel

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

I've had strangers who want me to move so they can sit, (when I don't take my walking stick, which I only use when I'm tired and Lupus is flaring up).

How has your invisible illness affected your relationships? *

I can't commit to doing everything and anything

Is there anything you are afraid to tell people in your life? *

Nope, I try to be honest about my life as it's been filled up with challenges

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes, my careers hours has been dramatically decreased, and travel costs are no longer part of my career taking me to appointments and regular blood tests when I am sore and tired we have to walk.

What is your best coping mechanism? *

laughter and surrounding myself with loved ones

What are you the most concerned about and the hopeful for in the future? *

That I get seriously sick

What is your favorite swear word?

Fucking Hell

What is the hardest and/or best lesson your condition has taught you?

It's ok to put yourself first, so you can be there for others

What is the best purchase under $100 that helped your life

meds

]]>
https://georgiana3026.wixsite.com/mybeautifultr: website

https://twitter.com/mybeautifulTr

/https://www.facebook.com/mybeautifulTr/

https://www.facebook.com/groups/mybeautifultrauma/

What is your disorder? *

SLE Lupus, Fibromyalgia, Hepatitis B, Neurological Functional Disorder, Stroke

At what age did your disorder become a daily issue? *

12

Who were you before your illness became debilitating? *

Youth Worker

What would you do if you were not dealing with your invisible illness? *

An active member of the community Urban Vision, while being a Youth Worker

What would you like people to know about your daily life? *

My health is not reliable (i have good days but bad, I get sick easily and fatigue levels can come and go without warning)

What would make living and moving in the world easier for you? *

Being able to work from home (Which I started this year) Also not having illnesses

Do you have any life hacks? *

Stay Positive, even when it's hard too

What kind of support do you get from family or friends? *

Emotional, Love and travel

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

I've had strangers who want me to move so they can sit, (when I don't take my walking stick, which I only use when I'm tired and Lupus is flaring up).

How has your invisible illness affected your relationships? *

I can't commit to doing everything and anything

Is there anything you are afraid to tell people in your life? *

Nope, I try to be honest about my life as it's been filled up with challenges

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes, my careers hours has been dramatically decreased, and travel costs are no longer part of my career taking me to appointments and regular blood tests when I am sore and tired we have to walk.

What is your best coping mechanism? *

laughter and surrounding myself with loved ones

What are you the most concerned about and the hopeful for in the future? *

That I get seriously sick

What is your favorite swear word?

Fucking Hell

What is the hardest and/or best lesson your condition has taught you?

It's ok to put yourself first, so you can be there for others

What is the best purchase under $100 that helped your life

meds

]]>
Chronic Illness and Remaining Politically Active When Disabled Chronic Illness and Remaining Politically Active When Disabled Sun, 26 Aug 2018 02:36:09 GMT 1:10:13 5b8212192205edb71deead1e yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/chronic-illness-and-remaining-politically-active-when-disabl A Chronic Illness Podcast full Trigger warning rape and discussions about chronic pain depression and suicide (click if you need help this link will take you to a hotline)

I am doing trigger warnings not because I think you should not listen but I don’t want to sideline you

I promise even though we do meander down some trails we do discuss a way to remain politically active no matter your mental or physical disability.

 

 

Jen Toal Link and her businesses

Women’s March

Guide I wish I had when I was looking into Golden Gate Bride Accessibility

women festivals and the start of accessibility

We need Silicon Valley To Start a mentorship matchup from ex-black panthers and social disturbers from the 60’s and 70’s to teach us all how to shape the world. WE NEED YOU!

My plan to fix politic. All politicians must pass a high school civics test before getting on the ballot

My Opioid Video

CDC Opioid Guidelines

Orange is The New Black

Ehlers Danlos

New Pain Scales

Game of Thrones Feminism problems

Handmaids Tale Rape

Beauty is NOT the rent you pay in the world

That old inspiration low bar

PTSD and depression and issues with protests and phone calls

Emma Sulkowicz with mattress after rape

Daryl Davis How One Man Convinced 200 Ku Klux Klan Members To Give Up Their Robes

Emma Gonzales

Ani Difranco

Tori Amos Me and A Gun

Thinx period underwear Cant you guys do a buy one donate one?

Responsibility belongs to the corporations, not on the person

Adam Ruins Everything

HOW to have a discussion with someone you REALLY politically disagree with

What Would Mr. Rogers Do?

NO dehumanizing ANYONE.

Empathy and Compassion are badass

Ever wonder what kind of mom I am here is my sex ed talk for kids

The UnSlut Project

ADA recommendations

]]>
Trigger warning rape and discussions about chronic pain depression and suicide (click if you need help this link will take you to a hotline)

I am doing trigger warnings not because I think you should not listen but I don’t want to sideline you

I promise even though we do meander down some trails we do discuss a way to remain politically active no matter your mental or physical disability.

 

 

Jen Toal Link and her businesses

Women’s March

Guide I wish I had when I was looking into Golden Gate Bride Accessibility

women festivals and the start of accessibility

We need Silicon Valley To Start a mentorship matchup from ex-black panthers and social disturbers from the 60’s and 70’s to teach us all how to shape the world. WE NEED YOU!

My plan to fix politic. All politicians must pass a high school civics test before getting on the ballot

My Opioid Video

CDC Opioid Guidelines

Orange is The New Black

Ehlers Danlos

New Pain Scales

Game of Thrones Feminism problems

Handmaids Tale Rape

Beauty is NOT the rent you pay in the world

That old inspiration low bar

PTSD and depression and issues with protests and phone calls

Emma Sulkowicz with mattress after rape

Daryl Davis How One Man Convinced 200 Ku Klux Klan Members To Give Up Their Robes

Emma Gonzales

Ani Difranco

Tori Amos Me and A Gun

Thinx period underwear Cant you guys do a buy one donate one?

Responsibility belongs to the corporations, not on the person

Adam Ruins Everything

HOW to have a discussion with someone you REALLY politically disagree with

What Would Mr. Rogers Do?

NO dehumanizing ANYONE.

Empathy and Compassion are badass

Ever wonder what kind of mom I am here is my sex ed talk for kids

The UnSlut Project

ADA recommendations

]]>
Epilepsy, Philosophy, Creative Writing, and Rose Colored Glasses Epilepsy, Philosophy, Creative Writing, and Rose Colored Glasses Tue, 14 Aug 2018 22:36:47 GMT 1:11:39 5b73597f0a8b023c06cdec30 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/epilepsy-philosophy-creative-writing-and-rose-colored-glasse A Chronic Illness Podcast full Creative writing and memoir writing

What it's like to come out of a seizure 

Vulnerability of seizures

Secret Super Power of Invisible Disability

Dating and Epilepsy

Not Drinking Socially

My Cat Tries To Crash The Interview

Medical Marijuana and Epilepsy (Charlotte's Web)

Medical Marijuana California Laws

Financial Realities of Those of Us On Disability 

Pixar Incredibles 2 Epilepsy Warnings

Triggers for Epilepsy You Might Not Expect




What To Do If You See Someone Have A Seizure

Service dogs and epilepsy

What Could Change To Keep Epileptics Safe (Pieology please change your bulbs!)

Rose Colored Glasses for Epileptics

Ketogenic Diet For Pediatric Epilepsy

MCT Oil For Epilepsy

Paleoish is my New Favorite Word

Wheat Belly Book

Different Types Of Epilepsy 

Absence Seizures

An Incredible Description of What A Seizure Feels Like

Monica Actually Becomes Speechless 

Serious Talk About Fear of Death

RuPaul's Drag Race Miz Cracker

Vulnerability and Privilege When Coming Out of Disorientation

The Process of Diagnosis

Pregnancy and Life Decisions With Epilepsy Medication Questions

]]>
Creative writing and memoir writing

What it's like to come out of a seizure 

Vulnerability of seizures

Secret Super Power of Invisible Disability

Dating and Epilepsy

Not Drinking Socially

My Cat Tries To Crash The Interview

Medical Marijuana and Epilepsy (Charlotte's Web)

Medical Marijuana California Laws

Financial Realities of Those of Us On Disability 

Pixar Incredibles 2 Epilepsy Warnings

Triggers for Epilepsy You Might Not Expect




What To Do If You See Someone Have A Seizure

Service dogs and epilepsy

What Could Change To Keep Epileptics Safe (Pieology please change your bulbs!)

Rose Colored Glasses for Epileptics

Ketogenic Diet For Pediatric Epilepsy

MCT Oil For Epilepsy

Paleoish is my New Favorite Word

Wheat Belly Book

Different Types Of Epilepsy 

Absence Seizures

An Incredible Description of What A Seizure Feels Like

Monica Actually Becomes Speechless 

Serious Talk About Fear of Death

RuPaul's Drag Race Miz Cracker

Vulnerability and Privilege When Coming Out of Disorientation

The Process of Diagnosis

Pregnancy and Life Decisions With Epilepsy Medication Questions

]]>
Being A Teenager With Chronic Illness, NMO, Depression, ME, Homeschool , and Chronic Pain Being A Teenager With Chronic Illness, NMO, Depression, ME, Homeschool , and Chronic Pain Wed, 08 Aug 2018 17:00:00 GMT 1:04:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b58be3d1ae6cfc82b9e5777 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877bc A Chronic Illness Podcast

Links

More Than A Spoonie Blog

Young People With Chronic Illness

Audible

Adam Ruins Everything

Uniqlo Bras and Bra Tops

Victoria Jackson

Favorite Podcasts

SickBoy

Stuff You Missed in History Class

Lore

Joe Rogan

Deal With It

Myths and History

 

What is your disorder? *

Neuromyelitis optica, depression, adrenal insufficiency. Nmo is similar to MS

At what age did your disorder become a daily issue? *

4

Who were you before your illness became debilitating? *

A funny sarcastic independent little girl

What would you do if you were not dealing with your invisible illness? *

I would’ve been finishing high school

What would you like people to know about your daily life? *

Everything is exhausting.

What would make living and moving in the world easier for you? *

Better options to help relieve symptoms

Do you have any life hacks? *

Yes! 1. water bottles 2. towels dressing gown 3. homeschooling

What kind of support do you get from family or friends? *

I Need a full-time carer...to make me food and everything because I’m in bed all the time. My friends also help by treating me normally but also getting it.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

I can’t remember an example. But people are always very impressed thanks blind because I manage well

How has your invisible illness affected your relationships? *

I don’t get to spend very much time with my family. But it makes the time we do more valuable, the dynamics of my relationship with my parents and brother are very interesting. They each go above and beyond for me. But don’t see me as broken. They see me as me.

Is there anything you are afraid to tell people in your life? *

That I often blame/doubt myself. Sometimes I worry I’m not trying hard enough. I compare myself.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

No. I’m very lucky to have had the same team since I was 4, when they didn't doubt me. But I imagine if I were to be newly diagnosed now they would suspect it’s for attention and stuff.

What is your best coping mechanism? *

PODCASTS! I love them sooooo much n it’s an effortless distraction. I listen to so many that I can’t catch up 😂

What are you the most concerned about and the hopeful for in the future? *

I’m scared I’ll be this way forever. That there will not be improvements. I have so many new and adapted plans in my head. But everything is “when I’m better”. I have hope at the same time that I can improve. I’m currently looking into more holistic options.

What is your favorite swear word?

Shit

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

How this affects my mental health, and of course my work as a patient advocate.

What is the hardest and/or best lesson your condition has taught you?

The hardest AND best lesson is that things change. Like things changed in a bad way when I got sicker. But they have also changed in good ways when I’ve overcome rough times. I like to tell my peers that this won’t last forever. Because this exact moment won’t. Your perspective changes all of the time. More experiences mean more wisdom more strength. They may get worse, so this crap time is actually a good one but they also could get better.

What is the best purchase under $100 that helped your life

My heated blanket! It’s like a full body heating pad. Only about £25 amazon.

 

]]>

Links

More Than A Spoonie Blog

Young People With Chronic Illness

Audible

Adam Ruins Everything

Uniqlo Bras and Bra Tops

Victoria Jackson

Favorite Podcasts

SickBoy

Stuff You Missed in History Class

Lore

Joe Rogan

Deal With It

Myths and History

 

What is your disorder? *

Neuromyelitis optica, depression, adrenal insufficiency. Nmo is similar to MS

At what age did your disorder become a daily issue? *

4

Who were you before your illness became debilitating? *

A funny sarcastic independent little girl

What would you do if you were not dealing with your invisible illness? *

I would’ve been finishing high school

What would you like people to know about your daily life? *

Everything is exhausting.

What would make living and moving in the world easier for you? *

Better options to help relieve symptoms

Do you have any life hacks? *

Yes! 1. water bottles 2. towels dressing gown 3. homeschooling

What kind of support do you get from family or friends? *

I Need a full-time carer...to make me food and everything because I’m in bed all the time. My friends also help by treating me normally but also getting it.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

I can’t remember an example. But people are always very impressed thanks blind because I manage well

How has your invisible illness affected your relationships? *

I don’t get to spend very much time with my family. But it makes the time we do more valuable, the dynamics of my relationship with my parents and brother are very interesting. They each go above and beyond for me. But don’t see me as broken. They see me as me.

Is there anything you are afraid to tell people in your life? *

That I often blame/doubt myself. Sometimes I worry I’m not trying hard enough. I compare myself.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

No. I’m very lucky to have had the same team since I was 4, when they didn't doubt me. But I imagine if I were to be newly diagnosed now they would suspect it’s for attention and stuff.

What is your best coping mechanism? *

PODCASTS! I love them sooooo much n it’s an effortless distraction. I listen to so many that I can’t catch up 😂

What are you the most concerned about and the hopeful for in the future? *

I’m scared I’ll be this way forever. That there will not be improvements. I have so many new and adapted plans in my head. But everything is “when I’m better”. I have hope at the same time that I can improve. I’m currently looking into more holistic options.

What is your favorite swear word?

Shit

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

How this affects my mental health, and of course my work as a patient advocate.

What is the hardest and/or best lesson your condition has taught you?

The hardest AND best lesson is that things change. Like things changed in a bad way when I got sicker. But they have also changed in good ways when I’ve overcome rough times. I like to tell my peers that this won’t last forever. Because this exact moment won’t. Your perspective changes all of the time. More experiences mean more wisdom more strength. They may get worse, so this crap time is actually a good one but they also could get better.

What is the best purchase under $100 that helped your life

My heated blanket! It’s like a full body heating pad. Only about £25 amazon.

 

]]>
Part 2 Ehlers Danlos Pirate Service Dog CDIF CRPS Part 2 {A chronic illness podcast} Part 2 Ehlers Danlos Pirate Service Dog CDIF CRPS Part 2 {A chronic illness podcast} Tue, 31 Jul 2018 04:27:00 GMT 0 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b5b9c5c575d1fa8d6fd679f no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877bd A Chronic Illness Podcast

Follow Desiree 

Instagram Follow

Sirius @sirius.service.dog

Desiree @desireejaykins

What is your disorder? *

Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome, Ehlers Danlo’s Syndrome, other GI issues

At what age did your disorder become a daily issue? *

19

Who were you before your illness became debilitating? *

A runner, softball player, and marching band lover who had to give that all up.

What would you do if you were not dealing with your invisible illness? *

I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.

What would you like people to know about your daily life? *

Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.

What would make living and moving in the world easier for you? *

Pain management and understanding of my condition as a whole.

Do you have any life hacks? *

Almond milk helps a sour stomach lol

What kind of support do you get from family or friends? *

I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha

How has your invisible illness affected your relationships? *

It has destroyed them and ruined my mental state.

Is there anything you are afraid to tell people in your life? *

I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

No, it makes them more understanding once I got my diagnoses and how to treat me.

What is your best coping mechanism? *

Sharing myself with others.

What are you the most concerned about and the hopeful for in the future? *

Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.

What is your favorite swear word?

FAQQQQQ(fuck) in all varieties haha

What is the hardest and/or best lesson your condition has taught you?

I need to learn self-love and self-coping mechanisms

What is the best purchase under $100 that helped your life

My yellow heavy duty portable wheelchair ramp haha

]]>


Follow Desiree 

Instagram Follow

Sirius @sirius.service.dog

Desiree @desireejaykins

What is your disorder? *

Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome, Ehlers Danlo’s Syndrome, other GI issues

At what age did your disorder become a daily issue? *

19

Who were you before your illness became debilitating? *

A runner, softball player, and marching band lover who had to give that all up.

What would you do if you were not dealing with your invisible illness? *

I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.

What would you like people to know about your daily life? *

Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.

What would make living and moving in the world easier for you? *

Pain management and understanding of my condition as a whole.

Do you have any life hacks? *

Almond milk helps a sour stomach lol

What kind of support do you get from family or friends? *

I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha

How has your invisible illness affected your relationships? *

It has destroyed them and ruined my mental state.

Is there anything you are afraid to tell people in your life? *

I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

No, it makes them more understanding once I got my diagnoses and how to treat me.

What is your best coping mechanism? *

Sharing myself with others.

What are you the most concerned about and the hopeful for in the future? *

Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.

What is your favorite swear word?

FAQQQQQ(fuck) in all varieties haha

What is the hardest and/or best lesson your condition has taught you?

I need to learn self-love and self-coping mechanisms

What is the best purchase under $100 that helped your life

My yellow heavy duty portable wheelchair ramp haha

]]>
30 Day in the Spoonie Life Video Challenge From Your Chronic Illness Podcast Invisible Not Broken 30 Day in the Spoonie Life Video Challenge From Your Chronic Illness Podcast Invisible Not Broken Mon, 23 Jul 2018 19:10:00 GMT 3:30 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b55f6b1758d46c198b6f692 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877be A Chronic Illness Podcast #30dayspooniechallenge.

 So this is stupid simple and all you need to do is just post a video or a picture of what your life is like with a chronic illness. Can be as long or short as you like. Just add a not or say where you are from.

We have been so lucky and I am so honored that Invisible Not Broken has listeners from Africa, India, China, Russia, South Korea, Australia, the United Kingdom, South America, and Mexico basically every continent but Antarctica!

I just have to admit I’m super curious what life is like for all of you in other countries if you have chronic pain, chronic illness, or invisible illness. I'm in the United States and all I know about life with a disability from other states and countries is what I’ve heard from people interviewed for the podcast.

So my challenge is to take a video or photo every day for 30 days to show the world what life is like for you and just tag us @invisiblenotbrk And don’t forget to #30dayspooniechallenge  and make sure you share this with the friends get everyone in on it.

Don’t forget to hit that subscribe button and make sure you share us with your friends family support groups Facebook groups we really need your help!

]]>
#30dayspooniechallenge.

 So this is stupid simple and all you need to do is just post a video or a picture of what your life is like with a chronic illness. Can be as long or short as you like. Just add a not or say where you are from.

We have been so lucky and I am so honored that Invisible Not Broken has listeners from Africa, India, China, Russia, South Korea, Australia, the United Kingdom, South America, and Mexico basically every continent but Antarctica!

I just have to admit I’m super curious what life is like for all of you in other countries if you have chronic pain, chronic illness, or invisible illness. I'm in the United States and all I know about life with a disability from other states and countries is what I’ve heard from people interviewed for the podcast.

So my challenge is to take a video or photo every day for 30 days to show the world what life is like for you and just tag us @invisiblenotbrk And don’t forget to #30dayspooniechallenge  and make sure you share this with the friends get everyone in on it.

Don’t forget to hit that subscribe button and make sure you share us with your friends family support groups Facebook groups we really need your help!

]]>
Ehlers Danlos Pirate Service Dog CDIF CRPS {A chronic illness podcast} Ehlers Danlos Pirate Service Dog CDIF CRPS {A chronic illness podcast} Mon, 16 Jul 2018 12:56:00 GMT 0 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b3432422b6a28b9ba3ed50f no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877bf A Chronic Illness Podcast

Follow Desiree 

Instagram Follow

Sirius @sirius.service.dog

Desiree @desireejaykins

What is your disorder? *

Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome, Ehlers Danlo’s Syndrome, other GI issues

At what age did your disorder become a daily issue? *

19

Who were you before your illness became debilitating? *

A runner, softball player, and marching band lover who had to give that all up.

What would you do if you were not dealing with your invisible illness? *

I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.

What would you like people to know about your daily life? *

Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.

What would make living and moving in the world easier for you? *

Pain management and understanding of my condition as a whole.

Do you have any life hacks? *

Almond milk helps a sour stomach lol

What kind of support do you get from family or friends? *

I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha

How has your invisible illness affected your relationships? *

It has destroyed them and ruined my mental state.

Is there anything you are afraid to tell people in your life? *

I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

No, it makes them more understanding once I got my diagnoses and how to treat me.

What is your best coping mechanism? *

Sharing myself with others.

What are you the most concerned about and the hopeful for in the future? *

Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.

What is your favorite swear word?

FAQQQQQ(fuck) in all varieties haha

What is the hardest and/or best lesson your condition has taught you?

I need to learn self-love and self-coping mechanisms

What is the best purchase under $100 that helped your life

My yellow heavy duty portable wheelchair ramp haha

]]>

Follow Desiree 

Instagram Follow

Sirius @sirius.service.dog

Desiree @desireejaykins

What is your disorder? *

Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome, Ehlers Danlo’s Syndrome, other GI issues

At what age did your disorder become a daily issue? *

19

Who were you before your illness became debilitating? *

A runner, softball player, and marching band lover who had to give that all up.

What would you do if you were not dealing with your invisible illness? *

I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.

What would you like people to know about your daily life? *

Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.

What would make living and moving in the world easier for you? *

Pain management and understanding of my condition as a whole.

Do you have any life hacks? *

Almond milk helps a sour stomach lol

What kind of support do you get from family or friends? *

I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha

How has your invisible illness affected your relationships? *

It has destroyed them and ruined my mental state.

Is there anything you are afraid to tell people in your life? *

I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

No, it makes them more understanding once I got my diagnoses and how to treat me.

What is your best coping mechanism? *

Sharing myself with others.

What are you the most concerned about and the hopeful for in the future? *

Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.

What is your favorite swear word?

FAQQQQQ(fuck) in all varieties haha

What is the hardest and/or best lesson your condition has taught you?

I need to learn self-love and self-coping mechanisms

What is the best purchase under $100 that helped your life

My yellow heavy duty portable wheelchair ramp haha

]]>
Travel and Disability: Tips, Tricks, for Roadtrips, Planes, and Family Reunions When You Have A Chronic Illness Travel and Disability: Tips, Tricks, for Roadtrips, Planes, and Family Reunions When You Have A Chronic Illness Mon, 09 Jul 2018 13:30:00 GMT 54:06 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b2b2ab10e2e72f37d56485d no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877c0 Chronic Illness Podcast

We respect your privacy.

Thank you!

 

Before you travel

  1. Make sure you have more than enough meds to get you through the trip. (My rule of thumb is to always make sure I have enough for 3-5 extra days in case I get stuck somewhere due to weather or other problems)

  2. If you use a daily pill sorter,

    1. Take it empty along with your bottles of pills

    2. Fill it but take pictures of each pill next to its bottle in case you need to show someone what the pills are for. (I have traveled all over the world and never had a problem taking my pills in a pill sorter.

  3. Always keep your pills on your person, never put them in checked luggage!

  4. Make sure that you inform your travel provider of any accommodations you need WHEN you purchase your tickets

    1. Dietary restrictions

    2. Assistance needed with transport

    3. Transportation of assistive devices (Wheelchairs, etc)

  5. You will probably be sitting still for a long time, make sure you plan accordingly

    1. Warm socks

    2. Sweats

    3. Compression socks

    4. Wear comfortable clothes

  6. Find out about resources near where you are staying for things like dialysis, oxygen rental, wheelchair rental, etc.

  7. If you have a condition that could impact your ability to travel, getting travel insurance might be a good idea.

  8. If you have a layover, there is an app, Gate Guru, that can show you the layout of various airports so you can plan food/resting if you have the time.

  9. Don’t be afraid to schedule in days to rest and recover. I know you want to see everything, but you’ll enjoy your trip more if you give yourself a break every so often. *Knowing I have a day to recover allows me to occasionally push myself to do something I otherwise would be too nervous to attempt.*

  10. Investigate physician availability where you will be traveling. Your doctor, health care provider, insurance company or local embassy can provide the names and contact numbers of physicians at your destination. For more information, see Health Care Abroad.

  11. Bring spare parts and tools. Wheelchairs can take tremendous abuse while traveling; assemble a small kit of spare parts and tools for emergency repairs. You may also be required to dismantle a wheelchair for certain flights or activities; make sure you and your traveling companions know how to do this.

  12. Research, Research, Research (your destination, the airline, etc)

 

Getting there (Airplanes / Trains / Cars) and home

  1. All means of transport

    1. Noise canceling headphones

    2. Comfortable clothes

    3. Shoes that are easy to take off / put back on

    4. Back up batteries and power cables for electronics

  2. Cars

    1. Pillows - so you can sleep/get comfortable

 

  1. Trains

    1. Earplugs (Trains can be very noisy)

 

  1. Planes

    1. A light jacket as the temperature can vary greatly.

    2. Snacks / Bottled water

    3. Travel neck pillow

 

Arriving at your destination

  1. Don’t be afraid to ask for assistance getting from wherever you are dropped (airline gate, train platform) to the exit. The worst they can do is say no, and it might just save you a lot of pain.

  2. Most airports have people whose only job is to push people around in wheelchairs (even people who can walk, but can’t walk long distances). Request them if you even think you’ll need it.

    1. *I didn’t think I would and almost turned it down once. I underestimated how far the walk was and if I had turned them down, would not have been able to get through security*

  3. If you have any kind of food allergies, plan ahead to have your own food until you reach your final destination as you cannot guarantee that there will be something safe along the way.

    1. I knew a particular airport had a place that was safe for me, and when I arrived, it was closed and under construction. I was very hungry by the time I got where I was going.

 

Dealing with Friends and Family -

  1. Friends and family are complicated. They have known you a long time and may not realize all the things you have to deal with and may be clueless about things you need for accomodation.

  2. Make sure if you are staying with friends or family that they know ahead of time any issues you might have. (They may expect to put you up on an air mattress, but you can’t get up from that close to the floor. Or they might not have any food that is safe for you.)

  3. Plan ahead in case they forget something that is going to affect you adversely

    1. Try to head off any potential problems by mentioning specific things you are worried about.

    2. If possible, plan alternatives in case they are unable to accomodate you. (For example, having already researched nearby hotels or places to get food)

  4. You may be the only person with a disability that they know, so be mentally prepared to play the role of educator.

  5. If friends and family are too complicated be up front or hell lie. Get a hotel room. A place to hide and runaway can save you jail time later.

 

Traveling to another country

  1. If you are travelling to a country with a different language than your own and need accommodations of any type, use Google Translate to compose phrases that you will most need to say.

    1. This might not be perfect, but it will at least allow you to get your point across in a pinch.

      1. I use this for my dairy allergy. I made up little cards with an explanation that I cannot have dairy (including examples) in the native language. I carry them with me everywhere. If I am going out to eat, I show the card to the server so they can help guide me to food that is safe for me.

    2. The EU mandates that restaurants carry “food allergen” menus for all their items so that people can make informed decisions.

  2. There are several good resources for disabled travel in other countries. Look up the country you plan to visit and see what other people found easy or difficult. I’ve found quite a few things that I would have rejected outright, but reading other people’s stories made me realize that it wasn’t as bad as I imagined.

    1. http://sath.org/disability-travel-websites

    2. https://www.mobility-advisor.com/disabled-friendly-travel.html

    3. https://www.washingtonpost.com/lifestyle/travel/disability-travel-resources-and-tips/2013/07/25/7e14d0aa-cd54-11e2-9f1a-1a7cdee20287_print.html?noredirect=on

    4. http://www.accessiblejourneys.com/accessible-travel-resources.htm

    5. https://www.smartertravel.com/2017/06/19/disabled-travel/

    6. http://www.travelguides.org/travelresources.html

    7. http://www.executiveclasstravelers.com/1/travel_resources.htm

    8. http://wheelchairtraveling.com/lonely-planets-list-of-accessible-travel-resources/

    9. https://www.makoa.org/travel.htm

    10. https://www.1800wheelchair.com/news/wheelchair-resources-disabled-travel-guide/

    11. http://www.accessiblejourneys.com/?gclid=CjwKCAjwpIjZBRBsEiwA0TN1ryf6ryI6SX3mqMDk-sfvPhW1YkqxMEeBz2j_8LHyZmRlrhaw__UGXxoCKFUQAvD_BwE

]]>

We respect your privacy.

Thank you!

 

Before you travel

  1. Make sure you have more than enough meds to get you through the trip. (My rule of thumb is to always make sure I have enough for 3-5 extra days in case I get stuck somewhere due to weather or other problems)

  2. If you use a daily pill sorter,

    1. Take it empty along with your bottles of pills

    2. Fill it but take pictures of each pill next to its bottle in case you need to show someone what the pills are for. (I have traveled all over the world and never had a problem taking my pills in a pill sorter.

  3. Always keep your pills on your person, never put them in checked luggage!

  4. Make sure that you inform your travel provider of any accommodations you need WHEN you purchase your tickets

    1. Dietary restrictions

    2. Assistance needed with transport

    3. Transportation of assistive devices (Wheelchairs, etc)

  5. You will probably be sitting still for a long time, make sure you plan accordingly

    1. Warm socks

    2. Sweats

    3. Compression socks

    4. Wear comfortable clothes

  6. Find out about resources near where you are staying for things like dialysis, oxygen rental, wheelchair rental, etc.

  7. If you have a condition that could impact your ability to travel, getting travel insurance might be a good idea.

  8. If you have a layover, there is an app, Gate Guru, that can show you the layout of various airports so you can plan food/resting if you have the time.

  9. Don’t be afraid to schedule in days to rest and recover. I know you want to see everything, but you’ll enjoy your trip more if you give yourself a break every so often. *Knowing I have a day to recover allows me to occasionally push myself to do something I otherwise would be too nervous to attempt.*

  10. Investigate physician availability where you will be traveling. Your doctor, health care provider, insurance company or local embassy can provide the names and contact numbers of physicians at your destination. For more information, see Health Care Abroad.

  11. Bring spare parts and tools. Wheelchairs can take tremendous abuse while traveling; assemble a small kit of spare parts and tools for emergency repairs. You may also be required to dismantle a wheelchair for certain flights or activities; make sure you and your traveling companions know how to do this.

  12. Research, Research, Research (your destination, the airline, etc)

 

Getting there (Airplanes / Trains / Cars) and home

  1. All means of transport

    1. Noise canceling headphones

    2. Comfortable clothes

    3. Shoes that are easy to take off / put back on

    4. Back up batteries and power cables for electronics

  2. Cars

    1. Pillows - so you can sleep/get comfortable

 

  1. Trains

    1. Earplugs (Trains can be very noisy)

 

  1. Planes

    1. A light jacket as the temperature can vary greatly.

    2. Snacks / Bottled water

    3. Travel neck pillow

 

Arriving at your destination

  1. Don’t be afraid to ask for assistance getting from wherever you are dropped (airline gate, train platform) to the exit. The worst they can do is say no, and it might just save you a lot of pain.

  2. Most airports have people whose only job is to push people around in wheelchairs (even people who can walk, but can’t walk long distances). Request them if you even think you’ll need it.

    1. *I didn’t think I would and almost turned it down once. I underestimated how far the walk was and if I had turned them down, would not have been able to get through security*

  3. If you have any kind of food allergies, plan ahead to have your own food until you reach your final destination as you cannot guarantee that there will be something safe along the way.

    1. I knew a particular airport had a place that was safe for me, and when I arrived, it was closed and under construction. I was very hungry by the time I got where I was going.

 

Dealing with Friends and Family -

  1. Friends and family are complicated. They have known you a long time and may not realize all the things you have to deal with and may be clueless about things you need for accomodation.

  2. Make sure if you are staying with friends or family that they know ahead of time any issues you might have. (They may expect to put you up on an air mattress, but you can’t get up from that close to the floor. Or they might not have any food that is safe for you.)

  3. Plan ahead in case they forget something that is going to affect you adversely

    1. Try to head off any potential problems by mentioning specific things you are worried about.

    2. If possible, plan alternatives in case they are unable to accomodate you. (For example, having already researched nearby hotels or places to get food)

  4. You may be the only person with a disability that they know, so be mentally prepared to play the role of educator.

  5. If friends and family are too complicated be up front or hell lie. Get a hotel room. A place to hide and runaway can save you jail time later.

 

Traveling to another country

  1. If you are travelling to a country with a different language than your own and need accommodations of any type, use Google Translate to compose phrases that you will most need to say.

    1. This might not be perfect, but it will at least allow you to get your point across in a pinch.

      1. I use this for my dairy allergy. I made up little cards with an explanation that I cannot have dairy (including examples) in the native language. I carry them with me everywhere. If I am going out to eat, I show the card to the server so they can help guide me to food that is safe for me.

    2. The EU mandates that restaurants carry “food allergen” menus for all their items so that people can make informed decisions.

  2. There are several good resources for disabled travel in other countries. Look up the country you plan to visit and see what other people found easy or difficult. I’ve found quite a few things that I would have rejected outright, but reading other people’s stories made me realize that it wasn’t as bad as I imagined.

    1. http://sath.org/disability-travel-websites

    2. https://www.mobility-advisor.com/disabled-friendly-travel.html

    3. https://www.washingtonpost.com/lifestyle/travel/disability-travel-resources-and-tips/2013/07/25/7e14d0aa-cd54-11e2-9f1a-1a7cdee20287_print.html?noredirect=on

    4. http://www.accessiblejourneys.com/accessible-travel-resources.htm

    5. https://www.smartertravel.com/2017/06/19/disabled-travel/

    6. http://www.travelguides.org/travelresources.html

    7. http://www.executiveclasstravelers.com/1/travel_resources.htm

    8. http://wheelchairtraveling.com/lonely-planets-list-of-accessible-travel-resources/

    9. https://www.makoa.org/travel.htm

    10. https://www.1800wheelchair.com/news/wheelchair-resources-disabled-travel-guide/

    11. http://www.accessiblejourneys.com/?gclid=CjwKCAjwpIjZBRBsEiwA0TN1ryf6ryI6SX3mqMDk-sfvPhW1YkqxMEeBz2j_8LHyZmRlrhaw__UGXxoCKFUQAvD_BwE

]]>
<![CDATA[Don't Try This At Home An Experiment In Pain Medication: Chronic Illness Blog]]> Mon, 02 Jul 2018 13:30:00 GMT 15:20 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b2b28078a922df7933cc856 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877c1 Invisible Illness Podcast

Alright maybe I have listened to too many Tim Ferris Podcast episodes (no really super motivating. Give it a try if you haven't). I decided to run a personal experiment as the US has yet again made it more difficult to get pain medication even when you go to a PAIN CLINIC and pharmacies have decided that they will supersede doctors n how much and when you may have your medicine.

Right now CVS which has teamed up with Target only allow for one week of an opioid prescription at a time. This is said to be only for acute conditions but I fear that there will be issues depending on who the pharmacist is. Just think of how possible it is to drive out EVERY week when in chronic pain. Walgreens allows for once a month from the time of pick up. This means if I can't wait for my prescription and I have to wait until I can drive again I can be up to a month behind on my prescriptions.

So among the fear mongering, I decided to run an experiment. How long can I go without my pain pills? Let me be clear I have ZERO addiction issues this was strictly about how long I could handle my daily level 8-9 pain without my medication.

Anyone who knows me will tell you optimism is how I will end up getting killed (or saying the wrong thing to the wrong person.) 

I REALLY thought I could make it the entire day. What else are super high pain thresholds for?

SPOILER NOPE NOT POSSIBLE NOT HAPPENING WITH A SIDE OF DEAR GOD WHY.

It did not go well. I am afraid. I am scared that an administration that cares nothing for people will force so many of us too tired and unable to fight into a darker place where even less is possible. If you want to share this to show others what it is like to be in chronic pain without medication please feel free to share.

For the record, I have Ehlers Danlos, POTS, and Fibromyalgia

]]>

Alright maybe I have listened to too many Tim Ferris Podcast episodes (no really super motivating. Give it a try if you haven't). I decided to run a personal experiment as the US has yet again made it more difficult to get pain medication even when you go to a PAIN CLINIC and pharmacies have decided that they will supersede doctors n how much and when you may have your medicine.

Right now CVS which has teamed up with Target only allow for one week of an opioid prescription at a time. This is said to be only for acute conditions but I fear that there will be issues depending on who the pharmacist is. Just think of how possible it is to drive out EVERY week when in chronic pain. Walgreens allows for once a month from the time of pick up. This means if I can't wait for my prescription and I have to wait until I can drive again I can be up to a month behind on my prescriptions.

So among the fear mongering, I decided to run an experiment. How long can I go without my pain pills? Let me be clear I have ZERO addiction issues this was strictly about how long I could handle my daily level 8-9 pain without my medication.

Anyone who knows me will tell you optimism is how I will end up getting killed (or saying the wrong thing to the wrong person.) 

I REALLY thought I could make it the entire day. What else are super high pain thresholds for?

SPOILER NOPE NOT POSSIBLE NOT HAPPENING WITH A SIDE OF DEAR GOD WHY.

It did not go well. I am afraid. I am scared that an administration that cares nothing for people will force so many of us too tired and unable to fight into a darker place where even less is possible. If you want to share this to show others what it is like to be in chronic pain without medication please feel free to share.

For the record, I have Ehlers Danlos, POTS, and Fibromyalgia

]]>
Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk Part 2 Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk Part 2 Mon, 18 Jun 2018 13:30:00 GMT 56:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b217c0c70a6addf5870485c no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877c2 An Invisible Illness Podcast

Warning: We really got into some intense issues from body issues, to disordered eating to suicide. If these are upsetting please look under recommendations for help and helplines.

First an apology on behalf of Skype on the frustrating audio! If any of you tech geniuses know another way to conduct interviews with everyone being able to see each other PLEASE reach out! Otherwise, I PROMISE you this interview is worth listening to even with the audio. Eliott has become one of my favorite people. I can not thank Eliott enough for VERY gently correcting my language to be more inclusive and for explaining trans and nonbinary in ways that I could really understand. Eliott also has some incredible coping issues for pain management which they learned from fibromyalgia, benign hyper-mobility, after effects of Lyme disease, depression, generalized anxiety. I hope you enjoy and please listen both weeks. This is our first 2 parter. 

Recommendations

Anyway, Here are some resources for the podcast notes!

-Trans lifeline (a trans-run hotline for trans people that also works with microgrants to help trans people change their IDs) : (+18775658860 US/ +18773306366 CANADA/ https://www.translifeline.org/)

-A basic definition & concept breakdown: http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/

-An article about understanding genderqueer, a term like nonbinary https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/

-alokvaid menon on instagram (alokvmenon—live videos especially) and their page on facebook, They’re a trans, gender non-conforming person of colour who is excellent at being honest and vulnerable in their daily experiences of cissexism and harassment

-comingoutasnonbinary.tumblr.com

-blog about chronic illness:   chronicill on wordpress or chronc-ill.tumblr.com

-collage instagram: eliottgennieve (touches on chronic physical and mental illness, being trans and nonbinary, and other various life things)

-nonbinary 101/meeting a nonbinary person: https://valprehension.com/genderqueer-101/

-an answer to common questions: 

https://everydayfeminism.com/2015/08/trans-questions-201/

-a video to explain the term nonbinary to kids:

https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380

-a basic trans healthcare breakdown: https://www.healthline.com/health/transgender-friendly-healthcare-language#4

-also a fellow podcast! How To Be a Girl

-a website with a lot of articles directed at parents of kids coming out as LGBTQ: http://mykidisgay.com/category/gender/

-Chronically Fully Sick in Facebook

-post on They pronouns in grammar: https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/

-article about talking to a trans person etiquette:

https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/

-PDFs of a book about gender:

 https://www.emofree.com/nl/eft-tutorial/tapping-basics/how-to-do-eft.html

What is the best purchase under $100 that helped your life

CBD Innescents Salvation Hot Freeze Skin Salve (they have various sizes, all under 100–I have a $14 one)

-Ice Face Mask/Cold Therapy mask, the brand I got was Perfecore from Amazon ($20)

-Electric Heating pad (I got this a long time ago but I believe it was $20-30)

What is your disorder? *

fibromyalgia, benign hypermobility, after effects of Lyme disease, depression, generalized anxiety

At what age did your disorder become a daily issue? *

8

Who were you before your illness became debilitating? *

Same person I am now? Maybe more confident in my ability to do multiple things in a day.

What would you do if you were not dealing with your invisible illness? *

Probably adventuring outside much more and seeing my friends more often. Running, swimming, or otherwise working out more. Riding my longboard.

What would you like people to know about your daily life? *

My capacity to do things can vary by the hour and even when I’m “fine” there’s at least a minimal base level of pain.

What would make living and moving in the world easier for you? *

Less fear of judgment from strangers about my age & appearance & use of a cane. Understanding from employers about the variability of my disabilities. Access to medical marijuana.

Do you have any life hacks? *

Have friends who encourage you but also understand your limits may fluctuate. Keep your car keys in the same place, like a basket by the front door esp if you have fibro fog. Keep water & a heating pad by the bed, along with art supplies and electronics & chargers.

What kind of support do you get from family or friends? *

I currently live with my parents and they help with buying groceries and sometimes cooking food I can eat (I’m vegan, they’re not). My friends support me with advice and their belief in me.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes

How has your invisible illness affected your relationships? *

I don’t get out much to meet people, so I don’t meet new people and miss hanging with the ones I know. Romantically, using a cane & having an unpredictable body seems too scary for other people.

Is there anything you are afraid to tell people in your life? *

How much pain I’m actually in and how long it actually lasts

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes, doctors don’t see my condition as urgent or believe how frustrating it can be. I feel like I’m also treated immaturely because of my age in combo.

What is your best coping mechanism? *

writing poetry or blog posts, cooking, and making art (also weed— but I can’t access that/mention it due to my job)

What are you the most concerned about and the hopeful for in the future? *

I’m most concerned that I won’t be able to complete my degree and I’ll have to move back home, and that I won’t be able to go on the road trips, travel, or hike how I want to. I’m most hopeful for all the really awesome experiences I’ll gain in graduate school and just in life because I love to do things like go skydiving and I want to do so much more.

What is your favorite swear word?

Fuck

What is the hardest and/or best lesson your condition has taught you?

Not to take days where I can do whatever I want in terms of physical activity for granted. That true friend will work to understand and be accommodating of your needs.

 

 

]]>

Warning: We really got into some intense issues from body issues, to disordered eating to suicide. If these are upsetting please look under recommendations for help and helplines.

First an apology on behalf of Skype on the frustrating audio! If any of you tech geniuses know another way to conduct interviews with everyone being able to see each other PLEASE reach out! Otherwise, I PROMISE you this interview is worth listening to even with the audio. Eliott has become one of my favorite people. I can not thank Eliott enough for VERY gently correcting my language to be more inclusive and for explaining trans and nonbinary in ways that I could really understand. Eliott also has some incredible coping issues for pain management which they learned from fibromyalgia, benign hyper-mobility, after effects of Lyme disease, depression, generalized anxiety. I hope you enjoy and please listen both weeks. This is our first 2 parter. 

Recommendations

Anyway, Here are some resources for the podcast notes!

-Trans lifeline (a trans-run hotline for trans people that also works with microgrants to help trans people change their IDs) : (+18775658860 US/ +18773306366 CANADA/ https://www.translifeline.org/)

-A basic definition & concept breakdown: http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/

-An article about understanding genderqueer, a term like nonbinary https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/

-alokvaid menon on instagram (alokvmenon—live videos especially) and their page on facebook, They’re a trans, gender non-conforming person of colour who is excellent at being honest and vulnerable in their daily experiences of cissexism and harassment

-comingoutasnonbinary.tumblr.com

-blog about chronic illness:   chronicill on wordpress or chronc-ill.tumblr.com

-collage instagram: eliottgennieve (touches on chronic physical and mental illness, being trans and nonbinary, and other various life things)

-nonbinary 101/meeting a nonbinary person: https://valprehension.com/genderqueer-101/

-an answer to common questions: 

https://everydayfeminism.com/2015/08/trans-questions-201/

-a video to explain the term nonbinary to kids:

https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380

-a basic trans healthcare breakdown: https://www.healthline.com/health/transgender-friendly-healthcare-language#4

-also a fellow podcast! How To Be a Girl

-a website with a lot of articles directed at parents of kids coming out as LGBTQ: http://mykidisgay.com/category/gender/

-Chronically Fully Sick in Facebook

-post on They pronouns in grammar: https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/

-article about talking to a trans person etiquette:

https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/

-PDFs of a book about gender:

 https://www.emofree.com/nl/eft-tutorial/tapping-basics/how-to-do-eft.html

What is the best purchase under $100 that helped your life

CBD Innescents Salvation Hot Freeze Skin Salve (they have various sizes, all under 100–I have a $14 one)

-Ice Face Mask/Cold Therapy mask, the brand I got was Perfecore from Amazon ($20)

-Electric Heating pad (I got this a long time ago but I believe it was $20-30)

What is your disorder? *

fibromyalgia, benign hypermobility, after effects of Lyme disease, depression, generalized anxiety

At what age did your disorder become a daily issue? *

8

Who were you before your illness became debilitating? *

Same person I am now? Maybe more confident in my ability to do multiple things in a day.

What would you do if you were not dealing with your invisible illness? *

Probably adventuring outside much more and seeing my friends more often. Running, swimming, or otherwise working out more. Riding my longboard.

What would you like people to know about your daily life? *

My capacity to do things can vary by the hour and even when I’m “fine” there’s at least a minimal base level of pain.

What would make living and moving in the world easier for you? *

Less fear of judgment from strangers about my age & appearance & use of a cane. Understanding from employers about the variability of my disabilities. Access to medical marijuana.

Do you have any life hacks? *

Have friends who encourage you but also understand your limits may fluctuate. Keep your car keys in the same place, like a basket by the front door esp if you have fibro fog. Keep water & a heating pad by the bed, along with art supplies and electronics & chargers.

What kind of support do you get from family or friends? *

I currently live with my parents and they help with buying groceries and sometimes cooking food I can eat (I’m vegan, they’re not). My friends support me with advice and their belief in me.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes

How has your invisible illness affected your relationships? *

I don’t get out much to meet people, so I don’t meet new people and miss hanging with the ones I know. Romantically, using a cane & having an unpredictable body seems too scary for other people.

Is there anything you are afraid to tell people in your life? *

How much pain I’m actually in and how long it actually lasts

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes, doctors don’t see my condition as urgent or believe how frustrating it can be. I feel like I’m also treated immaturely because of my age in combo.

What is your best coping mechanism? *

writing poetry or blog posts, cooking, and making art (also weed— but I can’t access that/mention it due to my job)

What are you the most concerned about and the hopeful for in the future? *

I’m most concerned that I won’t be able to complete my degree and I’ll have to move back home, and that I won’t be able to go on the road trips, travel, or hike how I want to. I’m most hopeful for all the really awesome experiences I’ll gain in graduate school and just in life because I love to do things like go skydiving and I want to do so much more.

What is your favorite swear word?

Fuck

What is the hardest and/or best lesson your condition has taught you?

Not to take days where I can do whatever I want in terms of physical activity for granted. That true friend will work to understand and be accommodating of your needs.

 

 

]]>
Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk on Invisible Not Broke Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk on Invisible Not Broke Mon, 11 Jun 2018 14:25:56 GMT 49:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5b0e030a352f5356912a1057 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877c3 An Invisible Illness Podcast

Warning: We really got into some intense issues from body issues, to disordered eating to suicide. If these are upsetting please look under recommendations for help and helplines.

First an apology on behalf of Skype on the frustrating audio! If any of you tech geniuses know another way to conduct interviews with everyone being able to see each other PLEASE reach out! Otherwise, I PROMISE you this interview is worth listening to even with the audio. Eliott has become one of my favorite people. I can not thank Eliott enough for VERY gently correcting my language to be more inclusive and for explaining trans and nonbinary in ways that I could really understand. Eliott also has some incredible coping issues for pain management which they learned from fibromyalgia, benign hyper-mobility, after effects of Lyme disease, depression, generalized anxiety. I hope you enjoy and please listen both weeks. This is our first 2 parter. 

Recommendations

Anyway, Here are some resources for the podcast notes!

-Trans lifeline (a trans-run hotline for trans people that also works with microgrants to help trans people change their IDs) : (+18775658860 US/ +18773306366 CANADA/ https://www.translifeline.org/)

-A basic definition & concept breakdown: http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/

-An article about understanding genderqueer, a term like nonbinary https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/

-alokvaid menon on instagram (alokvmenon—live videos especially) and their page on facebook, They’re a trans, gender non-conforming person of colour who is excellent at being honest and vulnerable in their daily experiences of cissexism and harassment

-comingoutasnonbinary.tumblr.com

-blog about chronic illness:   chronicill on wordpress or chronc-ill.tumblr.com

-collage instagram: eliottgennieve (touches on chronic physical and mental illness, being trans and nonbinary, and other various life things)

-nonbinary 101/meeting a nonbinary person: https://valprehension.com/genderqueer-101/

-an answer to common questions: 

https://everydayfeminism.com/2015/08/trans-questions-201/

-a video to explain the term nonbinary to kids:

https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380

-a basic trans healthcare breakdown: https://www.healthline.com/health/transgender-friendly-healthcare-language#4

-also a fellow podcast! How To Be a Girl

-a website with a lot of articles directed at parents of kids coming out as LGBTQ: http://mykidisgay.com/category/gender/

-Chronically Fully Sick in Facebook

-post on They pronouns in grammar: https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/

-article about talking to a trans person etiquette:

https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/

-PDFs of a book about gender:

 https://www.emofree.com/nl/eft-tutorial/tapping-basics/how-to-do-eft.html

What is the best purchase under $100 that helped your life

CBD Innescents Salvation Hot Freeze Skin Salve (they have various sizes, all under 100–I have a $14 one)

-Ice Face Mask/Cold Therapy mask, the brand I got was Perfecore from Amazon ($20)

-Electric Heating pad (I got this a long time ago but I believe it was $20-30)

What is your disorder? *

fibromyalgia, benign hypermobility, after effects of Lyme disease, depression, generalized anxiety

At what age did your disorder become a daily issue? *

8

Who were you before your illness became debilitating? *

Same person I am now? Maybe more confident in my ability to do multiple things in a day.

What would you do if you were not dealing with your invisible illness? *

Probably adventuring outside much more and seeing my friends more often. Running, swimming, or otherwise working out more. Riding my longboard.

What would you like people to know about your daily life? *

My capacity to do things can vary by the hour and even when I’m “fine” there’s at least a minimal base level of pain.

What would make living and moving in the world easier for you? *

Less fear of judgment from strangers about my age & appearance & use of a cane. Understanding from employers about the variability of my disabilities. Access to medical marijuana.

Do you have any life hacks? *

Have friends who encourage you but also understand your limits may fluctuate. Keep your car keys in the same place, like a basket by the front door esp if you have fibro fog. Keep water & a heating pad by the bed, along with art supplies and electronics & chargers.

What kind of support do you get from family or friends? *

I currently live with my parents and they help with buying groceries and sometimes cooking food I can eat (I’m vegan, they’re not). My friends support me with advice and their belief in me.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes

How has your invisible illness affected your relationships? *

I don’t get out much to meet people, so I don’t meet new people and miss hanging with the ones I know. Romantically, using a cane & having an unpredictable body seems too scary for other people.

Is there anything you are afraid to tell people in your life? *

How much pain I’m actually in and how long it actually lasts

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes, doctors don’t see my condition as urgent or believe how frustrating it can be. I feel like I’m also treated immaturely because of my age in combo.

What is your best coping mechanism? *

writing poetry or blog posts, cooking, and making art (also weed— but I can’t access that/mention it due to my job)

What are you the most concerned about and the hopeful for in the future? *

I’m most concerned that I won’t be able to complete my degree and I’ll have to move back home, and that I won’t be able to go on the road trips, travel, or hike how I want to. I’m most hopeful for all the really awesome experiences I’ll gain in graduate school and just in life because I love to do things like go skydiving and I want to do so much more.

What is your favorite swear word?

Fuck

What is the hardest and/or best lesson your condition has taught you?

Not to take days where I can do whatever I want in terms of physical activity for granted. That true friend will work to understand and be accommodating of your needs.

 

 

]]>

Warning: We really got into some intense issues from body issues, to disordered eating to suicide. If these are upsetting please look under recommendations for help and helplines.

First an apology on behalf of Skype on the frustrating audio! If any of you tech geniuses know another way to conduct interviews with everyone being able to see each other PLEASE reach out! Otherwise, I PROMISE you this interview is worth listening to even with the audio. Eliott has become one of my favorite people. I can not thank Eliott enough for VERY gently correcting my language to be more inclusive and for explaining trans and nonbinary in ways that I could really understand. Eliott also has some incredible coping issues for pain management which they learned from fibromyalgia, benign hyper-mobility, after effects of Lyme disease, depression, generalized anxiety. I hope you enjoy and please listen both weeks. This is our first 2 parter. 

Recommendations

Anyway, Here are some resources for the podcast notes!

-Trans lifeline (a trans-run hotline for trans people that also works with microgrants to help trans people change their IDs) : (+18775658860 US/ +18773306366 CANADA/ https://www.translifeline.org/)

-A basic definition & concept breakdown: http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/

-An article about understanding genderqueer, a term like nonbinary https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/

-alokvaid menon on instagram (alokvmenon—live videos especially) and their page on facebook, They’re a trans, gender non-conforming person of colour who is excellent at being honest and vulnerable in their daily experiences of cissexism and harassment

-comingoutasnonbinary.tumblr.com

-blog about chronic illness:   chronicill on wordpress or chronc-ill.tumblr.com

-collage instagram: eliottgennieve (touches on chronic physical and mental illness, being trans and nonbinary, and other various life things)

-nonbinary 101/meeting a nonbinary person: https://valprehension.com/genderqueer-101/

-an answer to common questions: 

https://everydayfeminism.com/2015/08/trans-questions-201/

-a video to explain the term nonbinary to kids:

https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380

-a basic trans healthcare breakdown: https://www.healthline.com/health/transgender-friendly-healthcare-language#4

-also a fellow podcast! How To Be a Girl

-a website with a lot of articles directed at parents of kids coming out as LGBTQ: http://mykidisgay.com/category/gender/

-Chronically Fully Sick in Facebook

-post on They pronouns in grammar: https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/

-article about talking to a trans person etiquette:

https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/

-PDFs of a book about gender:

 https://www.emofree.com/nl/eft-tutorial/tapping-basics/how-to-do-eft.html

What is the best purchase under $100 that helped your life

CBD Innescents Salvation Hot Freeze Skin Salve (they have various sizes, all under 100–I have a $14 one)

-Ice Face Mask/Cold Therapy mask, the brand I got was Perfecore from Amazon ($20)

-Electric Heating pad (I got this a long time ago but I believe it was $20-30)

What is your disorder? *

fibromyalgia, benign hypermobility, after effects of Lyme disease, depression, generalized anxiety

At what age did your disorder become a daily issue? *

8

Who were you before your illness became debilitating? *

Same person I am now? Maybe more confident in my ability to do multiple things in a day.

What would you do if you were not dealing with your invisible illness? *

Probably adventuring outside much more and seeing my friends more often. Running, swimming, or otherwise working out more. Riding my longboard.

What would you like people to know about your daily life? *

My capacity to do things can vary by the hour and even when I’m “fine” there’s at least a minimal base level of pain.

What would make living and moving in the world easier for you? *

Less fear of judgment from strangers about my age & appearance & use of a cane. Understanding from employers about the variability of my disabilities. Access to medical marijuana.

Do you have any life hacks? *

Have friends who encourage you but also understand your limits may fluctuate. Keep your car keys in the same place, like a basket by the front door esp if you have fibro fog. Keep water & a heating pad by the bed, along with art supplies and electronics & chargers.

What kind of support do you get from family or friends? *

I currently live with my parents and they help with buying groceries and sometimes cooking food I can eat (I’m vegan, they’re not). My friends support me with advice and their belief in me.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes

How has your invisible illness affected your relationships? *

I don’t get out much to meet people, so I don’t meet new people and miss hanging with the ones I know. Romantically, using a cane & having an unpredictable body seems too scary for other people.

Is there anything you are afraid to tell people in your life? *

How much pain I’m actually in and how long it actually lasts

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes, doctors don’t see my condition as urgent or believe how frustrating it can be. I feel like I’m also treated immaturely because of my age in combo.

What is your best coping mechanism? *

writing poetry or blog posts, cooking, and making art (also weed— but I can’t access that/mention it due to my job)

What are you the most concerned about and the hopeful for in the future? *

I’m most concerned that I won’t be able to complete my degree and I’ll have to move back home, and that I won’t be able to go on the road trips, travel, or hike how I want to. I’m most hopeful for all the really awesome experiences I’ll gain in graduate school and just in life because I love to do things like go skydiving and I want to do so much more.

What is your favorite swear word?

Fuck

What is the hardest and/or best lesson your condition has taught you?

Not to take days where I can do whatever I want in terms of physical activity for granted. That true friend will work to understand and be accommodating of your needs.

 

 

]]>
Cost of Chronic Illness A Chronic Illness Podcast Cost of Chronic Illness A Chronic Illness Podcast Mon, 04 Jun 2018 13:16:00 GMT 1:09:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5afe31fc352f530714dfb622 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877c4 A Chronic Illness Podcast

Panel Discussion: The Cost of Having an Invisible Illness

 

Important Note:

According to a 2017 RAND study, as of 2014, 60 percent of Americans had at least one chronic condition, and 42 percent had multiple chronic conditions. These proportions have held steady since 2008. 

 As used in the RAND study, it includes any physical or mental health condition that lasts more than one year and either limits ability or requires ongoing treatment. That means high cholesterol and high blood pressure, anxiety and arthritis, heart disease and diabetes.

RAND researchers used data from a national survey on health care expenditures to compile a chartbook with the most up-to-date numbers on the cost and prevalence of such chronic conditions. Their estimates suggest that nearly 150 million Americans are living with at least one chronic condition; around 100 million of them have more than one. And nearly 30 million are living, day in and day out, with five chronic conditions or more.

Those at the highest end of the scale, with five or more conditions, represent about 12 percent of the U.S. adult population, but account for more than 40 percent of U.S. health spending, the RAND study showed.

 

  1. Financial Cost:
    1. Repeated trips to the doctor each with its own co-pay.
    2. Seeing specialists, which in addition to copays, sometimes require travel to other parts of your state or even other states. 
    3. Tests after tests.
    4. Experimental procedures, not usually covered by insurance
    5. Second opinions
    6. Cost of prescriptions, even with insurance can be excessive. 
    7. Cost of medical supplies, over-the-counter meds, and medical equipment.
    8. Cost of special foods (I can speak from experience that trying to find foods that are dairy-free or buying dairy-free replacements are much more expensive.)
    9. Taking a lot of time off work for all of these doctor appointments.
    10. Loss of income if you cannot work / cannot keep a job.
    11. Cost of alternative treatments (like acupuncture, reflexology, chiropractic care because you are desperate to find something that helps with pain) that are typically not covered by regular health insurance.
    12. Therapy for self and family
    13. Cost of more expensive everything dyson v7, cars that fit wheelchairs, wheelchairs and canes, help, ready made meals, beds that adjust, disability lawyers,
  2. Physical Cost:
    1. Harder time accessing help because people don’t believe you need it.
    2. Not “officially” disabled, so unable to use assistive devices everywhere. (Disneyland and my walkstool)
    3. Limited job prospects (many employers don’t like to make accomodations for things that they cannot see.)
    4. Overdoing it because you are trying to hide your disability / trying to live a normal life for just a few hours and thus paying for it for days afterwards
    5. Harder time doing simple tasks that you feel you should be taking care of (cleaning house, cooking, etc)
    6. Lost time to getting and sorting meds every week, researching treatments, being your own advocate with medical system (How many hours have you spent on the phone talking with medical professionals, Monica?)
    7.  
  3. Emotional Cost:
    1. Conscious / unconscious need to act like nothing wrong, even on bad days.
    2. Embarrassment at asking for help or for special accommodations since your illness is not visible especially if they fear it affecting their job.
    3. Having to explain your illness to strangers because they don’t believe anything is wrong with you / think you are faking it.
    4. Strain on relationships when others have to do more because you cannot.
    5. Self loathing from needing someone to take care of you
    6. Being self-conscious because experience has taught you that people don’t believe you when you say you have an illness
    7. Isolation and loneliness from being home all day while friends and family are at work. 
    8. Missed moments with family and friends because you aren’t well enough to be there. (Look at how many times we’ve tried to arrange a trip to wine country or how many times Scott and David have gone out without me because I was sick and couldn’t go.
    9. Depression 

Links:

 

  1. https://www.rand.org/blog/rand-review/2017/07/chronic-conditions-in-america-price-and-prevalence.html
  2. https://themighty.com/2016/12/cost-expenses-having-chronic-disease/
  3. https://www.pinterest.com/pin/295267319303446311/
  4. http://www.mydiabeticheart.com/2017/05/16/the-costs-of-a-chronic-illness/
  5. https://www.sciencedaily.com/releases/2012/09/120911091100.htm
  6. http://thehill.com/opinion/healthcare/352032-fibromyalgia-an-invisible-disease-with-a-devastating-toll
  7. https://www.psychologytoday.com/us/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness
  8. POV about costs from a woman in England: https://www.youtube.com/watch?v=qhnZVjEQKSM
]]>

Panel Discussion: The Cost of Having an Invisible Illness

 

Important Note:

According to a 2017 RAND study, as of 2014, 60 percent of Americans had at least one chronic condition, and 42 percent had multiple chronic conditions. These proportions have held steady since 2008. 

 As used in the RAND study, it includes any physical or mental health condition that lasts more than one year and either limits ability or requires ongoing treatment. That means high cholesterol and high blood pressure, anxiety and arthritis, heart disease and diabetes.

RAND researchers used data from a national survey on health care expenditures to compile a chartbook with the most up-to-date numbers on the cost and prevalence of such chronic conditions. Their estimates suggest that nearly 150 million Americans are living with at least one chronic condition; around 100 million of them have more than one. And nearly 30 million are living, day in and day out, with five chronic conditions or more.

Those at the highest end of the scale, with five or more conditions, represent about 12 percent of the U.S. adult population, but account for more than 40 percent of U.S. health spending, the RAND study showed.

 

  1. Financial Cost:
    1. Repeated trips to the doctor each with its own co-pay.
    2. Seeing specialists, which in addition to copays, sometimes require travel to other parts of your state or even other states. 
    3. Tests after tests.
    4. Experimental procedures, not usually covered by insurance
    5. Second opinions
    6. Cost of prescriptions, even with insurance can be excessive. 
    7. Cost of medical supplies, over-the-counter meds, and medical equipment.
    8. Cost of special foods (I can speak from experience that trying to find foods that are dairy-free or buying dairy-free replacements are much more expensive.)
    9. Taking a lot of time off work for all of these doctor appointments.
    10. Loss of income if you cannot work / cannot keep a job.
    11. Cost of alternative treatments (like acupuncture, reflexology, chiropractic care because you are desperate to find something that helps with pain) that are typically not covered by regular health insurance.
    12. Therapy for self and family
    13. Cost of more expensive everything dyson v7, cars that fit wheelchairs, wheelchairs and canes, help, ready made meals, beds that adjust, disability lawyers,
  2. Physical Cost:
    1. Harder time accessing help because people don’t believe you need it.
    2. Not “officially” disabled, so unable to use assistive devices everywhere. (Disneyland and my walkstool)
    3. Limited job prospects (many employers don’t like to make accomodations for things that they cannot see.)
    4. Overdoing it because you are trying to hide your disability / trying to live a normal life for just a few hours and thus paying for it for days afterwards
    5. Harder time doing simple tasks that you feel you should be taking care of (cleaning house, cooking, etc)
    6. Lost time to getting and sorting meds every week, researching treatments, being your own advocate with medical system (How many hours have you spent on the phone talking with medical professionals, Monica?)
    7.  
  3. Emotional Cost:
    1. Conscious / unconscious need to act like nothing wrong, even on bad days.
    2. Embarrassment at asking for help or for special accommodations since your illness is not visible especially if they fear it affecting their job.
    3. Having to explain your illness to strangers because they don’t believe anything is wrong with you / think you are faking it.
    4. Strain on relationships when others have to do more because you cannot.
    5. Self loathing from needing someone to take care of you
    6. Being self-conscious because experience has taught you that people don’t believe you when you say you have an illness
    7. Isolation and loneliness from being home all day while friends and family are at work. 
    8. Missed moments with family and friends because you aren’t well enough to be there. (Look at how many times we’ve tried to arrange a trip to wine country or how many times Scott and David have gone out without me because I was sick and couldn’t go.
    9. Depression 

Links:

 

  1. https://www.rand.org/blog/rand-review/2017/07/chronic-conditions-in-america-price-and-prevalence.html
  2. https://themighty.com/2016/12/cost-expenses-having-chronic-disease/
  3. https://www.pinterest.com/pin/295267319303446311/
  4. http://www.mydiabeticheart.com/2017/05/16/the-costs-of-a-chronic-illness/
  5. https://www.sciencedaily.com/releases/2012/09/120911091100.htm
  6. http://thehill.com/opinion/healthcare/352032-fibromyalgia-an-invisible-disease-with-a-devastating-toll
  7. https://www.psychologytoday.com/us/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness
  8. POV about costs from a woman in England: https://www.youtube.com/watch?v=qhnZVjEQKSM
]]>
<![CDATA[Thoracic Outlet Syndrome, Spoonie Business Owners, Pain Management, & Relationships Chronic Illness Edition]]> Mon, 28 May 2018 13:30:00 GMT 1:12:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5aff2cc02b6a286d03fdce6b yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877c5 An invisible illness podcast

 This week we’re talking about the Thoracic Outlet Syndrome with Jen Hein and I have been waiting a long time for this episode because I really want to talk to another person who has a chronic illness and had to close of business that they built. Some of you know that I also had to shut down my Menlo Park photography studio when my Ehlers Danlos became too severe to continue. We talked about everything from pain management, medical marijuana in California, the opioid crisis has always been a big one here, and getting on drug seeking lists when accessing pain medication, and the kind of behavior you have to show to be a  "good" patient. Listen to the very end because we talk about what it’s like for spoonies to be in a relationship together, we talked about sex and disability (check out Kyros and my panel discussion about chronic illness and sex and relationships here), and we talk about some really good ideas for romantic low-stress spoony dates.

If you would like to contact Jen you can find her on Instagram at  rebel__lioness

Recommendations and Links

A Better Pain Scale Hyperbole and A Half

Golden Tiger Balm

Apple AirPods

Acupuncture and Thoracic Outlet Syndrome

The Magicians

Dr. Who


Spoonie & Spoonie Relationship Advice


1) This is probably the most important one: having massive patience, understanding, and flexibility with each other. Pain does not work on a timeline, and neither can we. These are all skills and practices that take time. 
2)Teamwork cooking. We decide what we want to eat for dinner based on our pain level and what we are able to do. Then we help each other make the dinner. Some nights it’s “tap out” style. Like, I can’t keep cutting/doing this anymore, you’re up! We also cook things that are easy to make, often even prepared foods. We use paper plates, and plastic cups (it kills me inside to make waste, but dishes aren’t a thing either of us can do anymore). 
3) Having a plan before we do anything. Cooking, going to the store, leaving the house for a doctors appointment, etc. Take the time to plan out what you will both realistically need before you start the activity/outing. 
4) Divide and conquer the chores. Decide what each of you can realistically do, what you cannot do, and what you can do together as a team. Despite the fact that both my partner and I have pain in our hands and arms, we manage to get most of the chores done around the house. Of course the deep cleaning is out of the question for us, but we are lucky enough to have friends and family that help us with that when we need it.
5)Take a day just to relax. This is really important to avoid complete burnout. We try to do this on Sundays. It doesn’t always work out, but at least try. To us, this means a day where neither one of us have to do anything physical to anger our pain. It also means a day where we don't talk too much about doctors appts/frustrations, etc. A true day off for your mind and body. A guided meditation is great way to start that off (I use a wonderful app called Insight Timer). 


What is your disorder? *

Thoracic outlet syndrome. I also have scoliosis, myofascial pain syndrome, and chronic pain (Love that one, such a blanket term)

Do you have any life hacks? *

Definitely yes. I use electric everything possible in the kitchen, can openers etc. I have a stool and every room so I can reach up to high places without having to lift my arm over my head. I have plastic cups and paper plates, which I hate because of the waste, but have to do because I am unable to do dishes. I keep things that I need on an accessible shelf instead of in a drawer or cabinet. I only use speak text is I cannot type. I have many pillows that I use for various things, for example, I have to use a pillow on each side of me while in the car to prop up my arms. I wear a scarf most of the time to keep my neck warm so it doesn’t flare up. I live in Yoga Pants and a tank top off my left shoulder, bras are never coming back into my life. Wireless headphones for my phone, so I don’t have to hold it. I’m sure there’s more. Meditation is high on the list for sure. I also use medical cannabis, which helps. I do therapy weekly. When I’m in a flare-up, I find my best coping mechanism is distraction. TV, podcasts, music, or taking a walk. In the rare days I’m not flared up, I’m usually OK with a set of tools that I have kind of created for myself.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

Basically just promoting awareness about TOS. I am a member of a few Facebook support groups that have really helped me, and I would like to spread the word about that if people don’t already know.

What is the hardest and/or best lesson your condition has taught you?

Patience

What is the best purchase under $100 that helped your life

It’s a tie between my wireless headphones and my golden tiger topical

 

]]>

 This week we’re talking about the Thoracic Outlet Syndrome with Jen Hein and I have been waiting a long time for this episode because I really want to talk to another person who has a chronic illness and had to close of business that they built. Some of you know that I also had to shut down my Menlo Park photography studio when my Ehlers Danlos became too severe to continue. We talked about everything from pain management, medical marijuana in California, the opioid crisis has always been a big one here, and getting on drug seeking lists when accessing pain medication, and the kind of behavior you have to show to be a  "good" patient. Listen to the very end because we talk about what it’s like for spoonies to be in a relationship together, we talked about sex and disability (check out Kyros and my panel discussion about chronic illness and sex and relationships here), and we talk about some really good ideas for romantic low-stress spoony dates.

If you would like to contact Jen you can find her on Instagram at  rebel__lioness

Recommendations and Links

A Better Pain Scale Hyperbole and A Half

Golden Tiger Balm

Apple AirPods

Acupuncture and Thoracic Outlet Syndrome

The Magicians

Dr. Who


Spoonie & Spoonie Relationship Advice


1) This is probably the most important one: having massive patience, understanding, and flexibility with each other. Pain does not work on a timeline, and neither can we. These are all skills and practices that take time. 
2)Teamwork cooking. We decide what we want to eat for dinner based on our pain level and what we are able to do. Then we help each other make the dinner. Some nights it’s “tap out” style. Like, I can’t keep cutting/doing this anymore, you’re up! We also cook things that are easy to make, often even prepared foods. We use paper plates, and plastic cups (it kills me inside to make waste, but dishes aren’t a thing either of us can do anymore). 
3) Having a plan before we do anything. Cooking, going to the store, leaving the house for a doctors appointment, etc. Take the time to plan out what you will both realistically need before you start the activity/outing. 
4) Divide and conquer the chores. Decide what each of you can realistically do, what you cannot do, and what you can do together as a team. Despite the fact that both my partner and I have pain in our hands and arms, we manage to get most of the chores done around the house. Of course the deep cleaning is out of the question for us, but we are lucky enough to have friends and family that help us with that when we need it.
5)Take a day just to relax. This is really important to avoid complete burnout. We try to do this on Sundays. It doesn’t always work out, but at least try. To us, this means a day where neither one of us have to do anything physical to anger our pain. It also means a day where we don't talk too much about doctors appts/frustrations, etc. A true day off for your mind and body. A guided meditation is great way to start that off (I use a wonderful app called Insight Timer). 


What is your disorder? *

Thoracic outlet syndrome. I also have scoliosis, myofascial pain syndrome, and chronic pain (Love that one, such a blanket term)

Do you have any life hacks? *

Definitely yes. I use electric everything possible in the kitchen, can openers etc. I have a stool and every room so I can reach up to high places without having to lift my arm over my head. I have plastic cups and paper plates, which I hate because of the waste, but have to do because I am unable to do dishes. I keep things that I need on an accessible shelf instead of in a drawer or cabinet. I only use speak text is I cannot type. I have many pillows that I use for various things, for example, I have to use a pillow on each side of me while in the car to prop up my arms. I wear a scarf most of the time to keep my neck warm so it doesn’t flare up. I live in Yoga Pants and a tank top off my left shoulder, bras are never coming back into my life. Wireless headphones for my phone, so I don’t have to hold it. I’m sure there’s more. Meditation is high on the list for sure. I also use medical cannabis, which helps. I do therapy weekly. When I’m in a flare-up, I find my best coping mechanism is distraction. TV, podcasts, music, or taking a walk. In the rare days I’m not flared up, I’m usually OK with a set of tools that I have kind of created for myself.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

Basically just promoting awareness about TOS. I am a member of a few Facebook support groups that have really helped me, and I would like to spread the word about that if people don’t already know.

What is the hardest and/or best lesson your condition has taught you?

Patience

What is the best purchase under $100 that helped your life

It’s a tie between my wireless headphones and my golden tiger topical

 

]]>
Secret Spoonie II A Chronic Illness Podcast Secret Spoonie II A Chronic Illness Podcast Mon, 21 May 2018 13:32:00 GMT 9:45 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5af09bd2758d46b85c11c372 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877c6

Hidden in Plain Sight

The Life of a Secret Spoonie: Part Two: Origins

 

Hello everyone and welcome back to Hidden in Plain Sight. For those of you just joining me, my intent is for this to be a monthly column about the trials and tribulations of living life with invisible illnesses that (most) people don’t know about. To recap: Over the last twenty-eight years, I have had numerous major surgeries, and a handful of minor ones, in addition to dozens of other (often invasive) medical procedures. I’ve had organs removed and a metal plate and cage implanted in my neck. I have been formally diagnosed with Spinal Stenosis, Fibromyalgia, Ankylosing Spondylitis, Peripheral Neuropathy, Raynaud’s Syndrome, and Stage Four Endometriosis. I am not entirely closeted, as some people do know about my medical conditions, but for the most part I live my life in a state of semi-secret. I hope that what I write here will resonate with some of you who might be in a similar position, and let you know that you are not alone.

 

By now some of you may be wondering why I choose to live like this. The question I get most from people, when they hear about my medical situation, is “Why don’t you talk about that?” Often, this sounds less like a question and more like an accusation: as in: “Why didn’t I know about that?” And herein lies one of the many dilemmas of being a closeted chronically ill person; if the idea is that I choose, willingly, willfully, not to openly disclose my situation to everyone I meet, then why is the response often indignant surprise with a veneer of anger when I do? While those who are also chronically ill usually seem concerned, I get the distinct impression that people who are not chronically ill themselves feel almost entitled to know everything about what’s going on with my medical life. I don’t know why this is the case, but I have some theories.

 

I believe that today, in the twenty-first century, the age of social media everywhere and all that it offers, many people have come to expect unfettered access to a stunning amount of readily available information. Sometimes this information is of a very personal nature. Anyone can follow a celebrity on Instagram and immediately know what she ate for breakfast that morning. In today’s media saturated world, we have access to almost unlimited data; much of it what would probably be considered private in nature. With the click of a key, or the swipe of a finger, we can peer into the most intimate details of people’s lives; sometimes figuratively, sometimes literally. We now live in an era where privacy is no longer the expectation. In fact, some seem to see it as a sort of privilege. This, however, was not always the case.

 

I realize that many people with chronic pain often long for a diagnosis, sometimes for (what must be brutal) decades at a time. It was the exact opposite for me. I was diagnosed at a relatively young age, in my early twenties, at a time when most young people (myself included) long to be seen as “normal” while simultaneously trying to forge a sense of self-identity from the bittersweet ravages of post-puberty. It was this internal struggle that ultimately led to my decision to hide my invisible illness from the world at large. Of course, those in my innermost circle had to know, because how else could I describe my reasons for staying home to rest rather than going out with my friends on a Saturday night? More often than not, as soon as I heard the car pull away, I was on the couch with a heating pad. I think that, more than anything else, it was my desire not to be seen as “sick” that made me do it. As a newly minted young adult, I didn’t want to be thought of as not fun, the one left behind, or even worse, not invited in the first place. It was also the early nineteen eighties, long before social media was a glint in someone’s eye. There were no understanding online communities, safely anonymous support groups, no way to quickly search for what each new symptom meant. My biggest fear was always that I would be ostracized from my own social community; one based largely on having fun and sharing experiences together.

 

Turns out that my fears were not completely unwarranted; I have lost some friends along the way. With each additional diagnosis, or another surgery, certain people in my life have faded into the background. Some slipped slowly from the friend slot into the acquaintance one. Others disappeared entirely. In some cases, it felt like a natural progression, while in others it was a devastating loss. I guess you learn who your real friends are when the chips are down. Maybe the best thing about being a secret spoonie is also the worst thing about it: If I’m able to effectively hide my invisible illness from people, I don’t get their condescending pity, but I also don’t get the sweet understanding. As many of you already know, being chronically ill is a challenge in many respects, both physical and mental, and sometimes we need a little help from our friends, even when (maybe especially when) we don’t want to ask for it. Having an invisible illness makes things both easier and harder; we can hide in plain sight, but we also risk not being seen when we want to be…when we need to be. Living in secret has served me well in some respects; in others, not so much. My choice to live like this has been both a liability and a form of protective armor: the paradox of being closeted and chronically ill.  

Thanks for reading. Until next time,

Secret Spoonie

 

If you have any comments or questions, or something you would like to see covered in a future column, please feel free to contact me at: secretspoonie@gmail.com

]]>

Hidden in Plain Sight

The Life of a Secret Spoonie: Part Two: Origins

 

Hello everyone and welcome back to Hidden in Plain Sight. For those of you just joining me, my intent is for this to be a monthly column about the trials and tribulations of living life with invisible illnesses that (most) people don’t know about. To recap: Over the last twenty-eight years, I have had numerous major surgeries, and a handful of minor ones, in addition to dozens of other (often invasive) medical procedures. I’ve had organs removed and a metal plate and cage implanted in my neck. I have been formally diagnosed with Spinal Stenosis, Fibromyalgia, Ankylosing Spondylitis, Peripheral Neuropathy, Raynaud’s Syndrome, and Stage Four Endometriosis. I am not entirely closeted, as some people do know about my medical conditions, but for the most part I live my life in a state of semi-secret. I hope that what I write here will resonate with some of you who might be in a similar position, and let you know that you are not alone.

 

By now some of you may be wondering why I choose to live like this. The question I get most from people, when they hear about my medical situation, is “Why don’t you talk about that?” Often, this sounds less like a question and more like an accusation: as in: “Why didn’t I know about that?” And herein lies one of the many dilemmas of being a closeted chronically ill person; if the idea is that I choose, willingly, willfully, not to openly disclose my situation to everyone I meet, then why is the response often indignant surprise with a veneer of anger when I do? While those who are also chronically ill usually seem concerned, I get the distinct impression that people who are not chronically ill themselves feel almost entitled to know everything about what’s going on with my medical life. I don’t know why this is the case, but I have some theories.

 

I believe that today, in the twenty-first century, the age of social media everywhere and all that it offers, many people have come to expect unfettered access to a stunning amount of readily available information. Sometimes this information is of a very personal nature. Anyone can follow a celebrity on Instagram and immediately know what she ate for breakfast that morning. In today’s media saturated world, we have access to almost unlimited data; much of it what would probably be considered private in nature. With the click of a key, or the swipe of a finger, we can peer into the most intimate details of people’s lives; sometimes figuratively, sometimes literally. We now live in an era where privacy is no longer the expectation. In fact, some seem to see it as a sort of privilege. This, however, was not always the case.

 

I realize that many people with chronic pain often long for a diagnosis, sometimes for (what must be brutal) decades at a time. It was the exact opposite for me. I was diagnosed at a relatively young age, in my early twenties, at a time when most young people (myself included) long to be seen as “normal” while simultaneously trying to forge a sense of self-identity from the bittersweet ravages of post-puberty. It was this internal struggle that ultimately led to my decision to hide my invisible illness from the world at large. Of course, those in my innermost circle had to know, because how else could I describe my reasons for staying home to rest rather than going out with my friends on a Saturday night? More often than not, as soon as I heard the car pull away, I was on the couch with a heating pad. I think that, more than anything else, it was my desire not to be seen as “sick” that made me do it. As a newly minted young adult, I didn’t want to be thought of as not fun, the one left behind, or even worse, not invited in the first place. It was also the early nineteen eighties, long before social media was a glint in someone’s eye. There were no understanding online communities, safely anonymous support groups, no way to quickly search for what each new symptom meant. My biggest fear was always that I would be ostracized from my own social community; one based largely on having fun and sharing experiences together.

 

Turns out that my fears were not completely unwarranted; I have lost some friends along the way. With each additional diagnosis, or another surgery, certain people in my life have faded into the background. Some slipped slowly from the friend slot into the acquaintance one. Others disappeared entirely. In some cases, it felt like a natural progression, while in others it was a devastating loss. I guess you learn who your real friends are when the chips are down. Maybe the best thing about being a secret spoonie is also the worst thing about it: If I’m able to effectively hide my invisible illness from people, I don’t get their condescending pity, but I also don’t get the sweet understanding. As many of you already know, being chronically ill is a challenge in many respects, both physical and mental, and sometimes we need a little help from our friends, even when (maybe especially when) we don’t want to ask for it. Having an invisible illness makes things both easier and harder; we can hide in plain sight, but we also risk not being seen when we want to be…when we need to be. Living in secret has served me well in some respects; in others, not so much. My choice to live like this has been both a liability and a form of protective armor: the paradox of being closeted and chronically ill.  

Thanks for reading. Until next time,

Secret Spoonie

 

If you have any comments or questions, or something you would like to see covered in a future column, please feel free to contact me at: secretspoonie@gmail.com

]]>
Hashimotos, Alopecia, Author Jenny Berk on Body Image, Chronic Illness Parenting, and Zombies A Chronic Illness Podcast Hashimotos, Alopecia, Author Jenny Berk on Body Image, Chronic Illness Parenting, and Zombies A Chronic Illness Podcast Mon, 14 May 2018 13:30:00 GMT 42:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5af089d56d2a73731f8256cd no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877c7 A Chronic Illness Podcast The Body Image Blueprint: Your Go-To Guide for Radical Self-Reverence By Jenny Eden Berk MSEd

Show Notes


What is your disorder? *

Hashimotos and Alopecia areata

At what age did your disorder become a daily issue? *

15

Who were you before your illness became debilitating? *

I was frustrated but managing.

What would you do if you were not dealing with your invisible illness? *

I'd have the energy to match what is in my head to do and I would not be self-conscious about my hair

What would you like people to know about your daily life? *

That you can thrive with chronic illnesses

What would make living and moving in the world easier for you? *

a cure for both of these ailments

Do you have any life hacks? *

trying to find them! Meditation

What kind of support do you get from family or friends? *

I get a lot of support from my community, my friends and my family.

What is your best coping mechanism? *

meditation

What are you the most concerned about and the hopeful for in the future? *

that there will be more effective treatments

What is your favorite swear word?

fuck

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

my business - Jenny Eden Coaching

What is the hardest and/or best lesson your condition has taught you?

that I am resilient - much more so than I thought.

What is the best purchase under $100 that helped your life

using the Purple Carrot in home meal delivery service ($78 a month)

]]>
The Body Image Blueprint: Your Go-To Guide for Radical Self-Reverence By Jenny Eden Berk MSEd

Show Notes


What is your disorder? *

Hashimotos and Alopecia areata

At what age did your disorder become a daily issue? *

15

Who were you before your illness became debilitating? *

I was frustrated but managing.

What would you do if you were not dealing with your invisible illness? *

I'd have the energy to match what is in my head to do and I would not be self-conscious about my hair

What would you like people to know about your daily life? *

That you can thrive with chronic illnesses

What would make living and moving in the world easier for you? *

a cure for both of these ailments

Do you have any life hacks? *

trying to find them! Meditation

What kind of support do you get from family or friends? *

I get a lot of support from my community, my friends and my family.

What is your best coping mechanism? *

meditation

What are you the most concerned about and the hopeful for in the future? *

that there will be more effective treatments

What is your favorite swear word?

fuck

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

my business - Jenny Eden Coaching

What is the hardest and/or best lesson your condition has taught you?

that I am resilient - much more so than I thought.

What is the best purchase under $100 that helped your life

using the Purple Carrot in home meal delivery service ($78 a month)

]]>
Ulcerative Colitis: Jackson Pollock, Life Hacks, Chronic Fatigue, and Questions To Never Ask Interview with Holly Fowler {Chronic Illness Podcast} Ulcerative Colitis: Jackson Pollock, Life Hacks, Chronic Fatigue, and Questions To Never Ask Interview with Holly Fowler {Chronic Illness Podcast} Tue, 08 May 2018 13:30:00 GMT 1:02:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ad8063303ce646d1a1ccb8c no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877c8 {Chronic Illness Podcast} Colitiscope-Horizontal-3.png Visit Colitiscope Nutrition

Holly Fowler's blog: www.colitiscopenutrition.com

Holly Fowler's Instagram: www.instagram.com/colitiscopenutrition

 

1. 11 Life Hacks for Minimizing Chronic Fatigue

2. Coffee Alternatives: When Coffee Isn't An Option

3. 5 Ways To Combat Brain Fog

4. Guide To Eating Gluten Free At A Restaurant (and enjoy it!)

5. Guide To Traveling With IBD


Name: Holly Fowler

Age: 29

Disorder: Ulcerative Colitis

What would make living and moving in the world easier for you?: I think it would be more awareness of invisible illnesses and Ulcerative Colitis, so that I don't feel like I have 3 heads when I try to explain it to people. Also, more access to bathrooms (!!!) so I don't feel ashamed when I make a scene in CVS begging to use their locked bathroom before an accident happens. (True story!)

Does the fact that your disease is invisible change how healthcare professionals treat you?: I definitely have to advocate for myself when I go to doctors other than my GI. I never assume they understand the correlation between my medications, my allergies, and my current symptoms. I once went to the infirmary on my college campus for strep throat. Without looking at my chart, they just handed me amoxicillin and, because I trusted them, I took it. Within a day, I was in a full flare-up and was sick for a month before being hospitalized.

]]>
Colitiscope-Horizontal-3.png Visit Colitiscope Nutrition

Holly Fowler's blog: www.colitiscopenutrition.com

Holly Fowler's Instagram: www.instagram.com/colitiscopenutrition

 

1. 11 Life Hacks for Minimizing Chronic Fatigue

2. Coffee Alternatives: When Coffee Isn't An Option

3. 5 Ways To Combat Brain Fog

4. Guide To Eating Gluten Free At A Restaurant (and enjoy it!)

5. Guide To Traveling With IBD


Name: Holly Fowler

Age: 29

Disorder: Ulcerative Colitis

What would make living and moving in the world easier for you?: I think it would be more awareness of invisible illnesses and Ulcerative Colitis, so that I don't feel like I have 3 heads when I try to explain it to people. Also, more access to bathrooms (!!!) so I don't feel ashamed when I make a scene in CVS begging to use their locked bathroom before an accident happens. (True story!)

Does the fact that your disease is invisible change how healthcare professionals treat you?: I definitely have to advocate for myself when I go to doctors other than my GI. I never assume they understand the correlation between my medications, my allergies, and my current symptoms. I once went to the infirmary on my college campus for strep throat. Without looking at my chart, they just handed me amoxicillin and, because I trusted them, I took it. Within a day, I was in a full flare-up and was sick for a month before being hospitalized.

]]>
Bipolar, PostPartum Depression, PTSD ,and Migraines : An Invisible Illness Podcast Bipolar, PostPartum Depression, PTSD ,and Migraines : An Invisible Illness Podcast Mon, 30 Apr 2018 13:30:00 GMT 59:30 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ae126bbaa4a9989a3356181 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877c9 A Chronic Illness Podcast

From the best way to support a spoonie to great ways to manage anxiety to the true story of postpartum depression with and without medication this episode is absolutely full of great spoonie life hacks and some real information about bipolar, anxiety, and migraines from high school to college to being a new mom. Make sure to share this episode with anyone who has or anyone you would like to know more about postpartum depression, migraines, or bipolar. Thank you and until next week Be kind. Be gentle, and be a bad ass.

Links

Daith piercing for migraines 

Text Anxiety Helpline

Follow Melissa On SOCIAL MEDIA:

BIO:

 

What is your disorder? *

bipolar disorder, postpartum depression, and post-traumatic stress disorder. Migraines

At what age did your disorder become a daily issue? *

15

Who were you before your illness became debilitating? *

An energetic teen that loved singing and acting.

What would you do if you were not dealing with your invisible illness? *

I once had dreams of being a Broadway star.

What would you like people to know about your daily life? *

Some days are harder than others but every day with my family is worth living for.

What would make living and moving in the world easier for you? *

Eliminate the stigma surrounding mental illness!

Do you have any life hacks? *

Just common sense ones. Always be prepared, order your medication, use a pill box, find your best coping mechanisms and stick to a routine.

What kind of support do you get from family or friends? *

My husband is my rock, and my sister in law is great too. Friends are helpful at times but only so much.

Would you care to relate the details of what happened when someone didn't believe you were disabled?

I went years without treatment.

How has your invisible illness affected your relationships? *

Yes. I have lost lots of friendships over time, and it can be difficult being part of a family where your every move effects someone else.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Sometimes doctors don't believe me.

What is your best coping mechanism? *

I love writing. It helps me to work through my emotions and put everything objectively.

What are you the most concerned about and the hopeful for in the future? *

I am most concerned that I might one day stop coping so well. I hope that better meds without side effects will be created.

What is your favorite swear word?

Fuck.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

My two picture book manuscripts I'm attempting to get published: Mommy's Little Monkeys- mom with bipolar and Tia's Tiny Turtle-aunt with PTSD. I'm trying to create books that will help families discuss mental illness and that will helpfully reduce the stigma.

What is the hardest and/or best lesson your condition has taught you?

It's okay to fall apart and depend on someone else. I always hated asking for help.

What is the best purchase under $100 that helped your life

Pen and paper. Zoloft. Stress candles and bath bombs.

Melissa Guida-Richards has a Bachelors of Arts in Psychology and Criminal Justice. Awards include The 2014 Rosa Parks scholarship and Michael A Garcia Award for her poem “Lo Siento, No Hablo Espanol” as a junior at Fredonia State University.

She has been published on several blog sites including The Mighty, Spoonie Author’s Network, and Adoptees Stories Connect. Her blog, Spoonie-Mama.com is a safe place for mothers to read about honest experiences with motherhood, adoption, and chronic illness. It is a small community so far, but she has had people reach out to her for advice with their adopted children. She will also appear on the podcast, Invisible Not Broken, in an interview discussing her battle with bipolar disorder, postpartum depression, and post-traumatic stress disorder.

Melissa is a stay at home mom, married to a stubborn redhead, and has two sons (2 years old and 9 months old.) Her family also includes two dogs, two cats, and two axolotls due to her husband’s avid love for animals. Chronic pain has been a big part of her life since the age of five-years-old but she has not let it stop her from being a frequent member of a mom group in Monroe County as well as an avid member of several online mom groups with over. When Melissa has some free time, she loves to write children’s picture books.

She is currently in the process of seeking an agent for the following picture books:

MOMMY’S LITTLE MONKEYS: Mommy has two mischievous monkeys, named Mania and Misery. Little CJ must work through his emotions and brave telling his parents how he really feels about his mother’s bipolar.

  • TIA’S TINY TURTLE: Tia has a snapping turtle named Shelly. She doesn’t think she needs help...until her nephew, Mateo, almost gets bitten. Now, Mateo must convince his Tia to get help for her PTSD and see a special zookeeper who is also a therapist.

  • THE GUARDIAN ANGEL: Sandra, feels like she doesn’t belong in her family-she is latina and her moms are white. She wants nothing more than to fit in with her family but keeps getting angry and breaking her toys. Can an unexpected visitor help guide her to her superpower and help her avoid timeout?

THE ODYSSEY OF A MILLENNIAL MAMA: After discovering a deep dark family secret, the author realizes she wants to become a mother, but there is one minor problem she needs to face first- infertility. At fifteen-years-old, she was diagnosed with Polycystic Ovarian Syndrome and decided she never wanted any of her own children anyway-thanks to her dysfunctional immigrant family. Now... things were different, she knew in her heart that she needed that biological connection. Baby fever took hold and so she and her fiance decided to try now, while her chronic pain was somewhat under control.


]]>

From the best way to support a spoonie to great ways to manage anxiety to the true story of postpartum depression with and without medication this episode is absolutely full of great spoonie life hacks and some real information about bipolar, anxiety, and migraines from high school to college to being a new mom. Make sure to share this episode with anyone who has or anyone you would like to know more about postpartum depression, migraines, or bipolar. Thank you and until next week Be kind. Be gentle, and be a bad ass.

Links

Daith piercing for migraines 

Text Anxiety Helpline

Follow Melissa On SOCIAL MEDIA:

BIO:

 

What is your disorder? *

bipolar disorder, postpartum depression, and post-traumatic stress disorder. Migraines

At what age did your disorder become a daily issue? *

15

Who were you before your illness became debilitating? *

An energetic teen that loved singing and acting.

What would you do if you were not dealing with your invisible illness? *

I once had dreams of being a Broadway star.

What would you like people to know about your daily life? *

Some days are harder than others but every day with my family is worth living for.

What would make living and moving in the world easier for you? *

Eliminate the stigma surrounding mental illness!

Do you have any life hacks? *

Just common sense ones. Always be prepared, order your medication, use a pill box, find your best coping mechanisms and stick to a routine.

What kind of support do you get from family or friends? *

My husband is my rock, and my sister in law is great too. Friends are helpful at times but only so much.

Would you care to relate the details of what happened when someone didn't believe you were disabled?

I went years without treatment.

How has your invisible illness affected your relationships? *

Yes. I have lost lots of friendships over time, and it can be difficult being part of a family where your every move effects someone else.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Sometimes doctors don't believe me.

What is your best coping mechanism? *

I love writing. It helps me to work through my emotions and put everything objectively.

What are you the most concerned about and the hopeful for in the future? *

I am most concerned that I might one day stop coping so well. I hope that better meds without side effects will be created.

What is your favorite swear word?

Fuck.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

My two picture book manuscripts I'm attempting to get published: Mommy's Little Monkeys- mom with bipolar and Tia's Tiny Turtle-aunt with PTSD. I'm trying to create books that will help families discuss mental illness and that will helpfully reduce the stigma.

What is the hardest and/or best lesson your condition has taught you?

It's okay to fall apart and depend on someone else. I always hated asking for help.

What is the best purchase under $100 that helped your life

Pen and paper. Zoloft. Stress candles and bath bombs.

Melissa Guida-Richards has a Bachelors of Arts in Psychology and Criminal Justice. Awards include The 2014 Rosa Parks scholarship and Michael A Garcia Award for her poem “Lo Siento, No Hablo Espanol” as a junior at Fredonia State University.

She has been published on several blog sites including The Mighty, Spoonie Author’s Network, and Adoptees Stories Connect. Her blog, Spoonie-Mama.com is a safe place for mothers to read about honest experiences with motherhood, adoption, and chronic illness. It is a small community so far, but she has had people reach out to her for advice with their adopted children. She will also appear on the podcast, Invisible Not Broken, in an interview discussing her battle with bipolar disorder, postpartum depression, and post-traumatic stress disorder.

Melissa is a stay at home mom, married to a stubborn redhead, and has two sons (2 years old and 9 months old.) Her family also includes two dogs, two cats, and two axolotls due to her husband’s avid love for animals. Chronic pain has been a big part of her life since the age of five-years-old but she has not let it stop her from being a frequent member of a mom group in Monroe County as well as an avid member of several online mom groups with over. When Melissa has some free time, she loves to write children’s picture books.

She is currently in the process of seeking an agent for the following picture books:

MOMMY’S LITTLE MONKEYS: Mommy has two mischievous monkeys, named Mania and Misery. Little CJ must work through his emotions and brave telling his parents how he really feels about his mother’s bipolar.

  • TIA’S TINY TURTLE: Tia has a snapping turtle named Shelly. She doesn’t think she needs help...until her nephew, Mateo, almost gets bitten. Now, Mateo must convince his Tia to get help for her PTSD and see a special zookeeper who is also a therapist.

  • THE GUARDIAN ANGEL: Sandra, feels like she doesn’t belong in her family-she is latina and her moms are white. She wants nothing more than to fit in with her family but keeps getting angry and breaking her toys. Can an unexpected visitor help guide her to her superpower and help her avoid timeout?

THE ODYSSEY OF A MILLENNIAL MAMA: After discovering a deep dark family secret, the author realizes she wants to become a mother, but there is one minor problem she needs to face first- infertility. At fifteen-years-old, she was diagnosed with Polycystic Ovarian Syndrome and decided she never wanted any of her own children anyway-thanks to her dysfunctional immigrant family. Now... things were different, she knew in her heart that she needed that biological connection. Baby fever took hold and so she and her fiance decided to try now, while her chronic pain was somewhat under control.


]]>
Faking it: From Disability Placards To Service Dogs: Chronic Illness Podcast Faking it: From Disability Placards To Service Dogs: Chronic Illness Podcast Mon, 23 Apr 2018 19:00:00 GMT 50:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ade02022b6a2820582178d1 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877ca An Invisible Illness Podcast

Kyros and I heavily debated doing this episode on Faking It All About Disability Placard and Service Animal Abuse of the System. Though we are not fans of calling people out this has become such an issue in our and others lives. The abuse of the system means life is so much more difficult for those who need these services. Take a listen and let us know what you think or if you have solutions we'd love to hear from you!

People who fake having a disability

 

  1. Reasons why people do it
    1. Want special treatment / to get around rules
    2. Jealous of what they perceive as benefits (taking dogs with them, easier access, line skipping at Disneyland)
    3. Feel entitled
    4. Dislike something (Food) so say they have an allergy
    5. Drug seeking
    6. Miracles on flights first to enter sudden recovery in air for a sprint off
    7.  
  2. How they do it
    1. “Borrow” disabled car tags
    2. Claim allergy when it is actually a preference
    3. Fake illness/ pain to get drugs
    4. Fake service animal vests
    5.  
  3. Service / Support / Therapy Animals, 
    1. https://therapetic.org/faq/ 
    2. https://www.petfinder.com/animal-shelters-and-rescues/volunteering-with-dogs/service-dog-vs-therapy-dogs/
    3. Fake certification certificates online
    4. Purchase fake service animal outfits online
    5. Gets around “No Pets Allowed” rules
      1. Landlords can't even charge extra fees or a pet deposit.
      2. So long as it was never documented being aggressive and required no unreasonable accommodations. (Link is to document for landlords in Iowa re: service animals)
    6. Instant VIP
      1. Support animals fly free instead of $125-300 charge
      2. Businesses don’t have to allow support animals, but most businesses aren’t aware of the differences.
    7. There are no papers, documents, certifications, vests, tags or special IDs required for Service Dogs in the United States. Under federal law, disabled individuals accompanied by Service Dogs are allowed access to places selling goods or services of any kind, including places offering entertainment, lodging and food.
  4. Transabled
    1. What is it?
      1. Been around since the early 20th century.
      2. Originally called abasiophilia, then amputee identity disorder, body integrity identity disorder, and now finally transableism.
      3.  
    2. Examples
      1. People who amputate arms or legs
      2. Poured bleach into her eyes to blind herself
      3.  
  5. Effects of fakes and transabled on people with disabilities 
    1. Creates atmosphere where people with invisible disabilities are assumed to be faking it
    2. Creates distrust of service animals legitimacy
    3. Backlash against legitimate service animals because so many people fake it that businesses assume everyone is cheating.
      1. Registered therapy dogs or emotional support animals increased 1000% between 2002 and 2012 in California
      2. To take your emotional support animal on an airplane, all you need is a letter from a licensed mental health professional that’s on letterhead, signed, and less than a year old. You can buy those online for a few bucks: news investigations have found psychologists offering to sell them to otherwise undiagnosed clients. Heck, most of us could probably counterfeit one using Photoshop.
      3. Bright side: California currently has a $1,000 fine and six months in jail lined up for faking a service dog. In Florida, it's $500 and two months in jail. Other states have measures too, and in case it sounds like a slap on the wrist, that's per count.
    4.  
    5. Transabled take limited resources away from people who do not have any other option.
    6.  

 

 

 

Links:

Service animals

 

Transabled

]]>

Kyros and I heavily debated doing this episode on Faking It All About Disability Placard and Service Animal Abuse of the System. Though we are not fans of calling people out this has become such an issue in our and others lives. The abuse of the system means life is so much more difficult for those who need these services. Take a listen and let us know what you think or if you have solutions we'd love to hear from you!

People who fake having a disability

 

  1. Reasons why people do it
    1. Want special treatment / to get around rules
    2. Jealous of what they perceive as benefits (taking dogs with them, easier access, line skipping at Disneyland)
    3. Feel entitled
    4. Dislike something (Food) so say they have an allergy
    5. Drug seeking
    6. Miracles on flights first to enter sudden recovery in air for a sprint off
    7.  
  2. How they do it
    1. “Borrow” disabled car tags
    2. Claim allergy when it is actually a preference
    3. Fake illness/ pain to get drugs
    4. Fake service animal vests
    5.  
  3. Service / Support / Therapy Animals, 
    1. https://therapetic.org/faq/ 
    2. https://www.petfinder.com/animal-shelters-and-rescues/volunteering-with-dogs/service-dog-vs-therapy-dogs/
    3. Fake certification certificates online
    4. Purchase fake service animal outfits online
    5. Gets around “No Pets Allowed” rules
      1. Landlords can't even charge extra fees or a pet deposit.
      2. So long as it was never documented being aggressive and required no unreasonable accommodations. (Link is to document for landlords in Iowa re: service animals)
    6. Instant VIP
      1. Support animals fly free instead of $125-300 charge
      2. Businesses don’t have to allow support animals, but most businesses aren’t aware of the differences.
    7. There are no papers, documents, certifications, vests, tags or special IDs required for Service Dogs in the United States. Under federal law, disabled individuals accompanied by Service Dogs are allowed access to places selling goods or services of any kind, including places offering entertainment, lodging and food.
  4. Transabled
    1. What is it?
      1. Been around since the early 20th century.
      2. Originally called abasiophilia, then amputee identity disorder, body integrity identity disorder, and now finally transableism.
      3.  
    2. Examples
      1. People who amputate arms or legs
      2. Poured bleach into her eyes to blind herself
      3.  
  5. Effects of fakes and transabled on people with disabilities 
    1. Creates atmosphere where people with invisible disabilities are assumed to be faking it
    2. Creates distrust of service animals legitimacy
    3. Backlash against legitimate service animals because so many people fake it that businesses assume everyone is cheating.
      1. Registered therapy dogs or emotional support animals increased 1000% between 2002 and 2012 in California
      2. To take your emotional support animal on an airplane, all you need is a letter from a licensed mental health professional that’s on letterhead, signed, and less than a year old. You can buy those online for a few bucks: news investigations have found psychologists offering to sell them to otherwise undiagnosed clients. Heck, most of us could probably counterfeit one using Photoshop.
      3. Bright side: California currently has a $1,000 fine and six months in jail lined up for faking a service dog. In Florida, it's $500 and two months in jail. Other states have measures too, and in case it sounds like a slap on the wrist, that's per count.
    4.  
    5. Transabled take limited resources away from people who do not have any other option.
    6.  

 

 

 

Links:

Service animals

 

Transabled

]]>
<![CDATA[Multiple Sclerosis Lab Rat Side Hustle Alternate Pain Management & A Healthy Dose of Controversy {A Chronic Illness Podcast}]]> Wed, 18 Apr 2018 13:25:00 GMT 1:01:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ad64a4c352f53a9c9b44d88 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877cb Chronic Illness Podcast This week Lucas Robak was kind enough to talk about his experiences with Multiple Sclerosis, time as a lab rat, and some interesting views (his please don't sue us) on the medical system, charity and research organizations, and medicine in the US.

Lucas Robak

The rule everything out diagnosis

Hypnotherapy for pain management (also concerned for how my kids would use this for non-pain management)

The unexpected symptoms and issues with MS or what happens when you have a disorder that affects the ENTIRE body

Teen experience with chronic illness

Symptoms the create a breakup in the MOST unexpected ways.

It's not just women who spend years waiting for a diagnosis

The chronic illness medical carousel

Lab Rats. It can be a lucrative side hustle

A unique perspective full of legal disclaimers on the health system, what happens in research for illnesses, and how to handle these. If you would like Luke to speak publicly you can reach him here.

FDA (Federal Drug Administration) what has been approved, their practices, and some laws around the FDA again these are opinions. Ideas on how chemicals affect our health. (mice MS and aspartame)

BTW this pill could cause suicide (new painkillers with strange side effects)

A special Sesame Street Reference (this does not make this episode child-friendly).

We discussed the Polio was one of the last diseases cured ( here are a few that have been). If you know of more please feel free to leave comments in the comment section. There have been a few and I will link, but I will say with advances and technology it surprises me with how few. Between nonprofits and organizations, it does beg the question of where the money goes? What is the carrot to find a cure? If there is a cure found does the organization have a dissolution plan? Basically, my rule for everything follow the money and ask good questions. Luke admits that he is HIGHLY controversial but the question he asks I would like to hear from heads of organizations. Please if you run an organization I would love to have you on the show. I have so many questions. If you are curious here is an interesting Snopes article about Komen Research CEO salary.

Lobbyists we talk so much about lobbyists. Also, ask how much the CEO of a non-profit makes.

Some of the pitfalls of have a capitalist based medical company.

Luke does prove that I absolutely interview someone I have VERY opposite views on.

Another Spoonie who runs their own business

I'm sorry is selfish, no really he makes an interesting case

His opening dating line is worth a listen

How and when to talk about your chronic illness in social and work situations. In the new social media world, it makes it all much easier than back when I was dating.

How personal accountability when there is a mistake can be a wonderful thing. I screwed up and this is how I'm going to fix it. This formula will make everyone's life so much better.

Spoon Theory

I will remind you all again that his opinions are his own. We definitely had a lively and respectful discussion even if we did not agree. I did have to point out that my disorder if made worse by living not activity.

Favorite Help Books (Money is what is easiest to marriage but Luke believes that these will help with life in general)

Think and Grow Rich

The Magic of Thinking Big

 

 

 

 

 

 

 

 

 

 

 

 

 

]]>
This week Lucas Robak was kind enough to talk about his experiences with Multiple Sclerosis, time as a lab rat, and some interesting views (his please don't sue us) on the medical system, charity and research organizations, and medicine in the US.

Lucas Robak

The rule everything out diagnosis

Hypnotherapy for pain management (also concerned for how my kids would use this for non-pain management)

The unexpected symptoms and issues with MS or what happens when you have a disorder that affects the ENTIRE body

Teen experience with chronic illness

Symptoms the create a breakup in the MOST unexpected ways.

It's not just women who spend years waiting for a diagnosis

The chronic illness medical carousel

Lab Rats. It can be a lucrative side hustle

A unique perspective full of legal disclaimers on the health system, what happens in research for illnesses, and how to handle these. If you would like Luke to speak publicly you can reach him here.

FDA (Federal Drug Administration) what has been approved, their practices, and some laws around the FDA again these are opinions. Ideas on how chemicals affect our health. (mice MS and aspartame)

BTW this pill could cause suicide (new painkillers with strange side effects)

A special Sesame Street Reference (this does not make this episode child-friendly).

We discussed the Polio was one of the last diseases cured ( here are a few that have been). If you know of more please feel free to leave comments in the comment section. There have been a few and I will link, but I will say with advances and technology it surprises me with how few. Between nonprofits and organizations, it does beg the question of where the money goes? What is the carrot to find a cure? If there is a cure found does the organization have a dissolution plan? Basically, my rule for everything follow the money and ask good questions. Luke admits that he is HIGHLY controversial but the question he asks I would like to hear from heads of organizations. Please if you run an organization I would love to have you on the show. I have so many questions. If you are curious here is an interesting Snopes article about Komen Research CEO salary.

Lobbyists we talk so much about lobbyists. Also, ask how much the CEO of a non-profit makes.

Some of the pitfalls of have a capitalist based medical company.

Luke does prove that I absolutely interview someone I have VERY opposite views on.

Another Spoonie who runs their own business

I'm sorry is selfish, no really he makes an interesting case

His opening dating line is worth a listen

How and when to talk about your chronic illness in social and work situations. In the new social media world, it makes it all much easier than back when I was dating.

How personal accountability when there is a mistake can be a wonderful thing. I screwed up and this is how I'm going to fix it. This formula will make everyone's life so much better.

Spoon Theory

I will remind you all again that his opinions are his own. We definitely had a lively and respectful discussion even if we did not agree. I did have to point out that my disorder if made worse by living not activity.

Favorite Help Books (Money is what is easiest to marriage but Luke believes that these will help with life in general)

Think and Grow Rich

The Magic of Thinking Big

 

 

 

 

 

 

 

 

 

 

 

 

 

]]>
Polycythemia Vera: Vampires Would Love Her {Chronic Illness Podcast} Polycythemia Vera: Vampires Would Love Her {Chronic Illness Podcast} Tue, 10 Apr 2018 17:49:44 GMT 41:20 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5acce87a8a922dc773216426 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877cc A Blood Disorder: Invisible Illness Illness Podcast
You Are Not Your Diagnosis Author Interview

You Are Not Your Diagnosis

What is your disorder? *

polycythemia vera

At what age did your disorder become a daily issue? *

25

Who were you before your illness became debilitating? *

I was a graduate student pursuing a career in academia but I was completely miserable on my path.

What would you do if you were not dealing with your invisible illness? *

I don't know that I'd be doing much different other than maybe having a bit more energy in general

What would you like people to know about your daily life? *

That through alternative healing methods, I'm able to live a normal life- one that I didn't think was possible back when I was diagnosed in 2004 (which was actually a misdiagnosis)

What would make living and moving in the world easier for you? *

If doctors would understand the power of their words and their attitudes in how people get better or stay sick. If alternative healing was more embraced by people, especially doctors

Do you have any life hacks? *

Tons. One of my favorites is self-care, especially something called BodyTalk Access. Others include focusing on my mindset/thoughts

What kind of support do you get from family or friends? *

I've always had pretty good support. Initially, the challenge was my diagnosis became the topic of EVERY conversation and I felt that was who I had become. But now many people don't see me that way. Close family knows some of my challenges.

Have you ever had someone not believe you have an invisible illness because of your appearance? *

I've never had someone say that to me but I don't tend to want people to know my health history

How has your invisible illness affected your relationships? *

At times it put me in the position of feeling dependent on my parents for help, support, etc. Living with a husband who was diagnosed with RA and Sjogren's last year (which isn't something he's yet told many people about) can be challenging on days when I feel tired and he's hurting.

What is your best coping mechanism? *

taking time to center myself, breathe, ground, do self-care

What are you the most concerned about and the hopeful for in the future? *

Fearful would be that things could get worse. Hopeful that the tools that have already given me so much of my health back and completely eliminate the disease

What is your favorite swear word?

I didn't use to feel this way but now it is fuck

Any questions you think we should add to this list?

What is the hardest and/or best lesson your condition has taught you?

The best lesson is that being scared of the unknown and stuffing down my feelings, fears, etc didn't help anything but made things worse. I learned my body has a lot of wisdom that I can tap into

You Are Not Your Diagnosis

Bio-Feedback

Body Talk

IOS Calm app

Apple Watch

Insight Timer

 

]]>

You Are Not Your Diagnosis Author Interview

You Are Not Your Diagnosis

What is your disorder? *

polycythemia vera

At what age did your disorder become a daily issue? *

25

Who were you before your illness became debilitating? *

I was a graduate student pursuing a career in academia but I was completely miserable on my path.

What would you do if you were not dealing with your invisible illness? *

I don't know that I'd be doing much different other than maybe having a bit more energy in general

What would you like people to know about your daily life? *

That through alternative healing methods, I'm able to live a normal life- one that I didn't think was possible back when I was diagnosed in 2004 (which was actually a misdiagnosis)

What would make living and moving in the world easier for you? *

If doctors would understand the power of their words and their attitudes in how people get better or stay sick. If alternative healing was more embraced by people, especially doctors

Do you have any life hacks? *

Tons. One of my favorites is self-care, especially something called BodyTalk Access. Others include focusing on my mindset/thoughts

What kind of support do you get from family or friends? *

I've always had pretty good support. Initially, the challenge was my diagnosis became the topic of EVERY conversation and I felt that was who I had become. But now many people don't see me that way. Close family knows some of my challenges.

Have you ever had someone not believe you have an invisible illness because of your appearance? *

I've never had someone say that to me but I don't tend to want people to know my health history

How has your invisible illness affected your relationships? *

At times it put me in the position of feeling dependent on my parents for help, support, etc. Living with a husband who was diagnosed with RA and Sjogren's last year (which isn't something he's yet told many people about) can be challenging on days when I feel tired and he's hurting.

What is your best coping mechanism? *

taking time to center myself, breathe, ground, do self-care

What are you the most concerned about and the hopeful for in the future? *

Fearful would be that things could get worse. Hopeful that the tools that have already given me so much of my health back and completely eliminate the disease

What is your favorite swear word?

I didn't use to feel this way but now it is fuck

Any questions you think we should add to this list?

What is the hardest and/or best lesson your condition has taught you?

The best lesson is that being scared of the unknown and stuffing down my feelings, fears, etc didn't help anything but made things worse. I learned my body has a lot of wisdom that I can tap into

You Are Not Your Diagnosis

Bio-Feedback

Body Talk

IOS Calm app

Apple Watch

Insight Timer

 

]]>
Secret Spoonie Our Newest Blogger About Life In The Chronic Illness Closet {Chronic Illness Podcast} Secret Spoonie Our Newest Blogger About Life In The Chronic Illness Closet {Chronic Illness Podcast} Mon, 02 Apr 2018 13:30:00 GMT 5:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ac0203c8a922d9f463d1c67 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877cd Life From Inside the Chronic Illness Closet Hidden in Plain Sight

 

The Life of a Secret Spoonie: Part One: Introduction

 

Hello everyone and welcome to Hidden in Plain Sight. This will be a monthly column about the trials and tribulations of living life with invisible illnesses that (most) people don’t know about. I am not entirely closeted, as some of my friends and family know about my medical conditions, but for the most part I live my life in a state of semi-secret. I have the utmost respect for those who live in the spotlight; who bravely wear their illness on their sleeves. There are times when I wish I could step into the light with them. But that’s just not me, not right now; maybe not ever. I hope that what I write here will resonate with some of you who might be in a similar position.

 

Let me introduce myself. I’m a secret spoonie: a (somewhat) closeted chronically ill person. I’ve been struggling with various invisible illnesses for the past thirty-five years, but only some people in my life know about what I’ve been though; what I still go through. I have been hiding in plain sight, for better or for worse, through sickness and in health, for more than three decades. Mostly: sickness. If anyone outright asks, in person, I will tell them the truth about my medical conditions, but I only discuss it in any depth with close friends and family. I will also (very occasionally) post something (very vague) on social media, but that is a rare, and often cryptic occurrence.

 

My story begins when I was a teenager. At the onset of puberty, I began to suffer severe cramping and abdominal pain, magnitudes greater than that of my peers. Thankfully, I had a mother who was both sensitive to my behavior and also highly aware of women’s health issues. She was also proactive, and took me to a Gynecologist who specialized in pain when I was fourteen. By that point, I had been suffering for about two years, mostly in silence. The doctor examined me and gave me two prescriptions: eight hundred milligram ibuprofen for pain, and chloral hydrate (otherwise known as “knockout drops”) to take during those nights when the pain prevented me from sleeping. I continued like this for another five years: suffer, medicate, suffer, medicate, rinse, repeat…

 

At nineteen, I started having more extreme symptoms, so I went to another doctor in the same practice who was also a surgeon. This time I lucked out: she happened to be one of the most prominent pelvic pain specialists in my area. She diagnosed me with “suspected endometriosis,” since a true diagnoses requires exploratory surgery. Two years later I had that surgery, a few days after my twenty-second birthday. The diagnosis: Stage Two Endometriosis. Photographs taken during my first surgery showed that the disease had been covering multiple organs in my abdomen. The excised what they could, sewed me up, and gave me some more, stronger prescriptions.

 

Thus began my journey of living life with invisible illness. Over the last twenty-eight years, I have had eleven major surgeries, and a handful of minor ones. I have had dozens of other (often invasive) medical procedures, and been hospitalized for weeks at time. I’ve had three organs removed, along with some of my spine. I have stitches in my skin and screws in my bones. There is a metal plate and cage implanted in my neck. I have been formally diagnosed with Spinal Stenosis, Fibromyalgia, Ankylosing Spondylitis, Peripheral Neuropathy, Raynaud’s Syndrome, and Stage Four Endometriosis. Throughout my life so far, I have done many things that a “normal” person does: I went to College, earned three degrees, bought a home, got a job, made some friends, lost some loved ones, got a career, got married, and discovered the meaning of life (just kidding on that last one), not necessarily in that order. I can only describe how I feel as like being naked and overdressed at the same time; always: both exposed and covered up. If there’s anything I’ve learned about dealing with my illnesses, it’s that there is no one way to deal with having a chronic illness (or six) and that, as sappy as it sounds, I’m still surprisingly grateful for everything I have and for everything I don’t. If you’re at all like me, you’ll probably understand the meaning of that last one.

 

Take care for now and hopefully I’ll see you again soon.

 

Secret Spoonie

 

If you have any comments or questions, or something you would like to see covered in a future column, please feel free to contact me at: secretspoonie@gmail.com

]]>
Hidden in Plain Sight

 

The Life of a Secret Spoonie: Part One: Introduction

 

Hello everyone and welcome to Hidden in Plain Sight. This will be a monthly column about the trials and tribulations of living life with invisible illnesses that (most) people don’t know about. I am not entirely closeted, as some of my friends and family know about my medical conditions, but for the most part I live my life in a state of semi-secret. I have the utmost respect for those who live in the spotlight; who bravely wear their illness on their sleeves. There are times when I wish I could step into the light with them. But that’s just not me, not right now; maybe not ever. I hope that what I write here will resonate with some of you who might be in a similar position.

 

Let me introduce myself. I’m a secret spoonie: a (somewhat) closeted chronically ill person. I’ve been struggling with various invisible illnesses for the past thirty-five years, but only some people in my life know about what I’ve been though; what I still go through. I have been hiding in plain sight, for better or for worse, through sickness and in health, for more than three decades. Mostly: sickness. If anyone outright asks, in person, I will tell them the truth about my medical conditions, but I only discuss it in any depth with close friends and family. I will also (very occasionally) post something (very vague) on social media, but that is a rare, and often cryptic occurrence.

 

My story begins when I was a teenager. At the onset of puberty, I began to suffer severe cramping and abdominal pain, magnitudes greater than that of my peers. Thankfully, I had a mother who was both sensitive to my behavior and also highly aware of women’s health issues. She was also proactive, and took me to a Gynecologist who specialized in pain when I was fourteen. By that point, I had been suffering for about two years, mostly in silence. The doctor examined me and gave me two prescriptions: eight hundred milligram ibuprofen for pain, and chloral hydrate (otherwise known as “knockout drops”) to take during those nights when the pain prevented me from sleeping. I continued like this for another five years: suffer, medicate, suffer, medicate, rinse, repeat…

 

At nineteen, I started having more extreme symptoms, so I went to another doctor in the same practice who was also a surgeon. This time I lucked out: she happened to be one of the most prominent pelvic pain specialists in my area. She diagnosed me with “suspected endometriosis,” since a true diagnoses requires exploratory surgery. Two years later I had that surgery, a few days after my twenty-second birthday. The diagnosis: Stage Two Endometriosis. Photographs taken during my first surgery showed that the disease had been covering multiple organs in my abdomen. The excised what they could, sewed me up, and gave me some more, stronger prescriptions.

 

Thus began my journey of living life with invisible illness. Over the last twenty-eight years, I have had eleven major surgeries, and a handful of minor ones. I have had dozens of other (often invasive) medical procedures, and been hospitalized for weeks at time. I’ve had three organs removed, along with some of my spine. I have stitches in my skin and screws in my bones. There is a metal plate and cage implanted in my neck. I have been formally diagnosed with Spinal Stenosis, Fibromyalgia, Ankylosing Spondylitis, Peripheral Neuropathy, Raynaud’s Syndrome, and Stage Four Endometriosis. Throughout my life so far, I have done many things that a “normal” person does: I went to College, earned three degrees, bought a home, got a job, made some friends, lost some loved ones, got a career, got married, and discovered the meaning of life (just kidding on that last one), not necessarily in that order. I can only describe how I feel as like being naked and overdressed at the same time; always: both exposed and covered up. If there’s anything I’ve learned about dealing with my illnesses, it’s that there is no one way to deal with having a chronic illness (or six) and that, as sappy as it sounds, I’m still surprisingly grateful for everything I have and for everything I don’t. If you’re at all like me, you’ll probably understand the meaning of that last one.

 

Take care for now and hopefully I’ll see you again soon.

 

Secret Spoonie

 

If you have any comments or questions, or something you would like to see covered in a future column, please feel free to contact me at: secretspoonie@gmail.com

]]>
Chronic Migraine Interview With Kevan From Made In California {Chronic Illness Podcast} Chronic Migraine Interview With Kevan From Made In California {Chronic Illness Podcast} Tue, 27 Mar 2018 13:07:00 GMT 1:05:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ab96f3f2b6a285ee7617b73 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877ce

We respect your privacy.

Thank you!
made-in-california-logo-chronic-migraine-invisible-illness-podcast.png

An interview with Kevan, the owner of Made In California who suffers from chronic migraines.This week is near and dear to my heart, chronic migraines are not unknown in my house.

We really went into the weeds on what it is like to being a student, female, and having an invisible and chronic illness. I really would love for more teachers and educators to listen there is a lot in here about things a child with chronic illness deal with. We also discussed isolation and chronic illness, technology and chronic illness, medical marijuana and migraines, pugs and other support and snorting animals, and the inspiration behind Kevan's business Made In California


 

Made In California

When your chronic illness really and literally is ALL in your head

Migraines from age 5

what it’s like to have head pain all day

Some of the things a migraine contains not including headaches

What Can Trigger a Migraine: Trigger: sensory overload, weather, chemicals, foods

When chemicals and chemical scents trigger migraines and you can’t have scented products….start a business and MAKE IT BETTER

I will be ordering sooo many of these how can you beat the name? Naked and Unlaid?

Entrepreneurs and chronic illness

Technology, chronic illness, and life opening benefits

Living your life finding out what is still possible in your life and in the boundaries of your illness and finding a purpose

Chronic illness and isolation (think Yellow Wallpaper English majors)

Social media and finding your chronic illness community

Schooling impact on chronically ill children

the life and mental saving benefits of pugs

Choosing other paths than western medicine (We are NOT doctors don’t sue us, ask your medical professional for advice)

Medical Medium (Link)

Medical Marijuana, other herbs, and nutrition (which can mean salty fries and milkshake) for migraines

Riki Lake documentary Weed The People

 

]]>

We respect your privacy.

Thank you!
made-in-california-logo-chronic-migraine-invisible-illness-podcast.png

An interview with Kevan, the owner of Made In California who suffers from chronic migraines.This week is near and dear to my heart, chronic migraines are not unknown in my house.

We really went into the weeds on what it is like to being a student, female, and having an invisible and chronic illness. I really would love for more teachers and educators to listen there is a lot in here about things a child with chronic illness deal with. We also discussed isolation and chronic illness, technology and chronic illness, medical marijuana and migraines, pugs and other support and snorting animals, and the inspiration behind Kevan's business Made In California


 

Made In California

When your chronic illness really and literally is ALL in your head

Migraines from age 5

what it’s like to have head pain all day

Some of the things a migraine contains not including headaches

What Can Trigger a Migraine: Trigger: sensory overload, weather, chemicals, foods

When chemicals and chemical scents trigger migraines and you can’t have scented products….start a business and MAKE IT BETTER

I will be ordering sooo many of these how can you beat the name? Naked and Unlaid?

Entrepreneurs and chronic illness

Technology, chronic illness, and life opening benefits

Living your life finding out what is still possible in your life and in the boundaries of your illness and finding a purpose

Chronic illness and isolation (think Yellow Wallpaper English majors)

Social media and finding your chronic illness community

Schooling impact on chronically ill children

the life and mental saving benefits of pugs

Choosing other paths than western medicine (We are NOT doctors don’t sue us, ask your medical professional for advice)

Medical Medium (Link)

Medical Marijuana, other herbs, and nutrition (which can mean salty fries and milkshake) for migraines

Riki Lake documentary Weed The People

 

]]>
Remitting MS and Interview With Lauren Selfridge from This Is Not What I Ordered A Chronic Illness Podcast Remitting MS and Interview With Lauren Selfridge from This Is Not What I Ordered A Chronic Illness Podcast Tue, 20 Mar 2018 13:30:00 GMT 1:04:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5ab0522c352f53a1f3e6da89 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877cf Multiple Sclerosis Lauren Selfridge This Is Not What I Ordered A Chronic Illness Podcast
I am an extrovert. My body is an Introvert
— Lauren Selfridge
this-is-not-what-i-ordered-lauren-selfridge-chronic-illness-podcast.jpg

Show notes from Remitting MS and Interview With Lauren Selfridge from This Is Not What I Ordered A Chronic Illness Podcast

Lauren Selfridge had remitting MS is a therapist in the SF Bay Area and runs a wonderful chronic illness podcast called This Is Not What I Ordered.

To be VERY clear Lauren is on the calmer side of the spectrum of MS that though has bad days at this time she is still able to continue to work and run a GREAT Podcast This Is Not What I Ordered 

Great tech explanation of MS

Some VERY good information about MS diagnosis and tests

Stress is the doctors new go to instead of “hysteria”

Don’t be afraid to DEMAND a test that you know you need

Spinal Tap is much more fun as a movie than as a medical test, click here to see what I mean. HERE

Sorry real life barking pug decided to be a “helper dog” and be a part of the interview

The amazing kryptonite of the white coat that can turn the feistiest of us into terrified children

Call to Drs. for interviewees I would love to see the other side of sick world.

Yes, Monica is a complete Neil Gaiman. There is no denying it. Someday Dr. Who will sponsor this podcast when they know how many of us spoonies watch obsessively on our stay in bed days.

All about taking advantage of the good low symptom times. The ups and the fears of positive low symptom times.

What is it like when you are different than most of the people who have your disorder, hint it makes it difficult to make long-term choices.

Changing your views of what a successful fulfilling life to redefine not around what the body will do.

Some really awesome advice Monica’s dad gave her maybe a tad too young. Yay, my dad!

Some great career choices for the chronic spoonie

Monica’s mom is awesome and might be a future guest to talk about being a caregiver for an adult disabled child.

Spoonie decisions for one’s work and social life, hint a bit like Sophie's Choice

Chronic illness and the kick in the tail for life experiences

Public transportation and chronic illness Thank you Uber and Lyft

Uber’s new medical service

The epic fight with a Benadryl IV trust me it is chronic illness gallows humor hilarious 

Google Image search is not always your friend when you have a chronic illness

The calming effects of watching aquariums or paint on YouTube

What it is like to hope on horizons with a well-funded disorder

Therapy and chronic illness some of the up and downsides of group therapy and online support groups Lauren's Facebook Group This Is Not What I Ordered

The importance of social media and access to others for chronic illness and for teens.

The physical and social isolation of chronic illness 

The body perfection model as the body is a reflection of who you are as a person and what happens when your body goes rogue

Loving What Is Byron Katie. My new favorite quote, "It’s not your job to like me it’s mine.”

"You don’t have a soul. You are a soul. You have a body." CS. Lewis. This is the real quote I mangled. Til We Have Faces

Chronic illness is transformative and not always in a bad way.

Grieving your health and living a full heart at the same time. A real talk about grieving, grieving a lifestyle, a person, or a healthy body.

Till We Have Faces: A Myth Retold Loving What Is: Four Questions That Can Change Your Life This Week On Invisible Not Broken (A Chronic Illness Podcast) Interview With Lauren Selfridge About Life With Multiple Sclerosis
CS Lewis Quote With Surreal Black and White Photography
Lauren Selfridge Quote
]]>
I am an extrovert. My body is an Introvert
— Lauren Selfridge
this-is-not-what-i-ordered-lauren-selfridge-chronic-illness-podcast.jpg

Show notes from Remitting MS and Interview With Lauren Selfridge from This Is Not What I Ordered A Chronic Illness Podcast

Lauren Selfridge had remitting MS is a therapist in the SF Bay Area and runs a wonderful chronic illness podcast called This Is Not What I Ordered.

To be VERY clear Lauren is on the calmer side of the spectrum of MS that though has bad days at this time she is still able to continue to work and run a GREAT Podcast This Is Not What I Ordered 

Great tech explanation of MS

Some VERY good information about MS diagnosis and tests

Stress is the doctors new go to instead of “hysteria”

Don’t be afraid to DEMAND a test that you know you need

Spinal Tap is much more fun as a movie than as a medical test, click here to see what I mean. HERE

Sorry real life barking pug decided to be a “helper dog” and be a part of the interview

The amazing kryptonite of the white coat that can turn the feistiest of us into terrified children

Call to Drs. for interviewees I would love to see the other side of sick world.

Yes, Monica is a complete Neil Gaiman. There is no denying it. Someday Dr. Who will sponsor this podcast when they know how many of us spoonies watch obsessively on our stay in bed days.

All about taking advantage of the good low symptom times. The ups and the fears of positive low symptom times.

What is it like when you are different than most of the people who have your disorder, hint it makes it difficult to make long-term choices.

Changing your views of what a successful fulfilling life to redefine not around what the body will do.

Some really awesome advice Monica’s dad gave her maybe a tad too young. Yay, my dad!

Some great career choices for the chronic spoonie

Monica’s mom is awesome and might be a future guest to talk about being a caregiver for an adult disabled child.

Spoonie decisions for one’s work and social life, hint a bit like Sophie's Choice

Chronic illness and the kick in the tail for life experiences

Public transportation and chronic illness Thank you Uber and Lyft

Uber’s new medical service

The epic fight with a Benadryl IV trust me it is chronic illness gallows humor hilarious 

Google Image search is not always your friend when you have a chronic illness

The calming effects of watching aquariums or paint on YouTube

What it is like to hope on horizons with a well-funded disorder

Therapy and chronic illness some of the up and downsides of group therapy and online support groups Lauren's Facebook Group This Is Not What I Ordered

The importance of social media and access to others for chronic illness and for teens.

The physical and social isolation of chronic illness 

The body perfection model as the body is a reflection of who you are as a person and what happens when your body goes rogue

Loving What Is Byron Katie. My new favorite quote, "It’s not your job to like me it’s mine.”

"You don’t have a soul. You are a soul. You have a body." CS. Lewis. This is the real quote I mangled. Til We Have Faces

Chronic illness is transformative and not always in a bad way.

Grieving your health and living a full heart at the same time. A real talk about grieving, grieving a lifestyle, a person, or a healthy body.

Till We Have Faces: A Myth Retold Loving What Is: Four Questions That Can Change Your Life This Week On Invisible Not Broken (A Chronic Illness Podcast) Interview With Lauren Selfridge About Life With Multiple Sclerosis
CS Lewis Quote With Surreal Black and White Photography
Lauren Selfridge Quote
]]>
Burning Nights: CRPS and Double Amputations: Chronic Illness Podcast Burning Nights: CRPS and Double Amputations: Chronic Illness Podcast Mon, 12 Mar 2018 13:08:00 GMT 0 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a85be8cec212d3a593ecbd4 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877d0 Interview With Burning Nights Founder and CRPS patient Victoria Abbott Fleming burning-nights-logo-150x68.png CRPS A Discussion With Founder of Burning Nights
Burning Nights Interview with Invisible Not Broken
Interview with Burning Nights Founder Chronic Illness Blog

What is your disorder? *

Complex Regional Pain Syndrome (CRPS)

At what age did your disorder become a daily issue? *

24

Who were you before your illness became debilitating? *

I was a trained Barrister (lawyer), I was lecturing in Law and became Head of Law at a college. I was happy, content with life, in love with a gorgeous Armed Forces man, just bought our 1st house and we were looking at planning a family

What would you do if you were not dealing with your invisible illness? *

I would have continued my legal career as a Barrister in Family law

What would you like people to know about your daily life? *

I am now confined to a wheelchair and am an above knee amputee due to the CRPS. I live in extreme burning and freezing excessive pain every day and suffer from wild temperature issues, swollen stumps as well as suffering from tremors and spasms on a daily basis. It’s so difficult and simple tasks such as getting dressed can take so long to do. I have to be careful what clothes I wear as they have to be light due to the hypersensitivity of both my remaining stumps. But I have the fantastic support of my husband. I also founded a charity - Burning Nights CRPS Support in the U.K. which I run along with 6 other volunteers.

What would make living and moving in the world easier for you? *

Finding a cure for CRPS to get rid of the stabbing, burning pain and other signs and symptoms. Also Better access to buildings, shops, bars etc for wheelchairs

Do you have any life hacks? *

Using your iPhone to control the heating. Get a doorbell that comes through to your phone to tell the person where to leave the parcel or the doorbell that comes through to the iPhone and you press a button on your phone that opens the door. Learn to adapt clothes for your disability or use safety pins to help keep clothes stay shut! I’ve had to adapt clothes so they don’t get trapped in my wheelchair for example.

What kind of support do you get from family or friends? *

I get amazing support from my husband and sometimes from my family. I couldn’t do without my husband as he is my full-time carer

Would you care to relate the details of what happened when someone didn't believe you were disabled?

I was told that I couldn’t be in this much pain as I looked too well. I was also told that my condition couldn’t make me disabled as it was a psychiatric illness

How has your invisible illness affected your relationships? *

It has been strained occasionally but he is always with me. It’s been tough but I love him.

Is there anything you are afraid to tell even the people closest to you? *

When I’m feeling low and depressed I don’t like telling my husband and Family because I feel I’m burdening them. I always try not to tell them how much pain I’m in. I always say I’m fine.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes

What is your best coping mechanism? *

Distraction techniques - definitely

What are you the most fearful of and hopeful for in the future? *

I would like to hope that the condition would get either a specific medication or cure. However, I’m fearful that it won’t happen. I also hope that my condition does not worsen at any time in the future

What is your favorite swear word?

Shit

Is there anything you want to make sure we talk about during the interview?  

If we possible could we mention the U.K. charity that I founded - Burning Nights CRPS Support and the work we do including raising awareness of CRPS and supporting all those affected by the condition. I would also like to include our web address, mention we’re on social media and we have a U.K. helpline

Any questions you think we should add to this list?

Maybe ask how I got CRPS ie what caused it in the first place and when?

What is the hardest and/or best lesson your condition has taught you?

The hardest lesson is that you soon know and realize who your real friends are when you are diagnosed with a chronic illness especially one that is invisible

What is the best purchase under $100 that helped your life

Grab stick to pick up things from the floor

What is the biggest lesson your illness has taught you?

Live each day as if it was your last

]]>
burning-nights-logo-150x68.png CRPS A Discussion With Founder of Burning Nights
Burning Nights Interview with Invisible Not Broken
Interview with Burning Nights Founder Chronic Illness Blog

What is your disorder? *

Complex Regional Pain Syndrome (CRPS)

At what age did your disorder become a daily issue? *

24

Who were you before your illness became debilitating? *

I was a trained Barrister (lawyer), I was lecturing in Law and became Head of Law at a college. I was happy, content with life, in love with a gorgeous Armed Forces man, just bought our 1st house and we were looking at planning a family

What would you do if you were not dealing with your invisible illness? *

I would have continued my legal career as a Barrister in Family law

What would you like people to know about your daily life? *

I am now confined to a wheelchair and am an above knee amputee due to the CRPS. I live in extreme burning and freezing excessive pain every day and suffer from wild temperature issues, swollen stumps as well as suffering from tremors and spasms on a daily basis. It’s so difficult and simple tasks such as getting dressed can take so long to do. I have to be careful what clothes I wear as they have to be light due to the hypersensitivity of both my remaining stumps. But I have the fantastic support of my husband. I also founded a charity - Burning Nights CRPS Support in the U.K. which I run along with 6 other volunteers.

What would make living and moving in the world easier for you? *

Finding a cure for CRPS to get rid of the stabbing, burning pain and other signs and symptoms. Also Better access to buildings, shops, bars etc for wheelchairs

Do you have any life hacks? *

Using your iPhone to control the heating. Get a doorbell that comes through to your phone to tell the person where to leave the parcel or the doorbell that comes through to the iPhone and you press a button on your phone that opens the door. Learn to adapt clothes for your disability or use safety pins to help keep clothes stay shut! I’ve had to adapt clothes so they don’t get trapped in my wheelchair for example.

What kind of support do you get from family or friends? *

I get amazing support from my husband and sometimes from my family. I couldn’t do without my husband as he is my full-time carer

Would you care to relate the details of what happened when someone didn't believe you were disabled?

I was told that I couldn’t be in this much pain as I looked too well. I was also told that my condition couldn’t make me disabled as it was a psychiatric illness

How has your invisible illness affected your relationships? *

It has been strained occasionally but he is always with me. It’s been tough but I love him.

Is there anything you are afraid to tell even the people closest to you? *

When I’m feeling low and depressed I don’t like telling my husband and Family because I feel I’m burdening them. I always try not to tell them how much pain I’m in. I always say I’m fine.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes

What is your best coping mechanism? *

Distraction techniques - definitely

What are you the most fearful of and hopeful for in the future? *

I would like to hope that the condition would get either a specific medication or cure. However, I’m fearful that it won’t happen. I also hope that my condition does not worsen at any time in the future

What is your favorite swear word?

Shit

Is there anything you want to make sure we talk about during the interview?  

If we possible could we mention the U.K. charity that I founded - Burning Nights CRPS Support and the work we do including raising awareness of CRPS and supporting all those affected by the condition. I would also like to include our web address, mention we’re on social media and we have a U.K. helpline

Any questions you think we should add to this list?

Maybe ask how I got CRPS ie what caused it in the first place and when?

What is the hardest and/or best lesson your condition has taught you?

The hardest lesson is that you soon know and realize who your real friends are when you are diagnosed with a chronic illness especially one that is invisible

What is the best purchase under $100 that helped your life

Grab stick to pick up things from the floor

What is the biggest lesson your illness has taught you?

Live each day as if it was your last

]]>
Bed Rest and Chronic Illness A Panel: Lupus, Fibromyalgia, and EDS How To Live A Meaningful Life From Bed Rest {A Chronic Illness Podcast} Bed Rest and Chronic Illness A Panel: Lupus, Fibromyalgia, and EDS How To Live A Meaningful Life From Bed Rest {A Chronic Illness Podcast} Mon, 05 Mar 2018 14:11:00 GMT 0 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a9c7d15085229f6ca2f2535 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877d1 Karma Needs To Chill A Chronic Illness Podcast
Clamon Natural Health Talking To Invisible Not Broken A Chronic Illness Podcast About Bed Rest
Elizabeth Clammon On Invisible Not Broken Chronic Illness Podcast
Monica Michelle Invisible Not Broken Chronic Illness Podcast Host
Glynda The Good Pug Monica Michelle's Support Pug
Captain Kirk Monica Michelle's Well Meaning Support Wolf
Be Kind

Lupus, Fibromyalgia, EDS, and a Car Accident: Karma needs to chill.

A discussion with naturopath Elizabeth Clamon from Clamon Natural Health, and Monica Michelle who between the two of them are dealing with Chronic Fatigue, Lupus, Ehlers Danlos, Chronic Pain, Car Accident, and Fibromyalgia. This is a panel talk all about LIVING with a horizontal life or how to live when bedbound with chronic illness.

 

When Monica Michelle became sick and spending far too much time in bed she started a list of what would still be possible in her life when so much of it took place in bed. Elizabeth Clamon discusses her life after a car accident and chronic illness pushed her into bed right after she got her degree, Elizabeth began and runs a business, Clamon Natural Health, while homeschooling her children.

During this panel

  • Parenting from bed: homeschool, delegation, chores, and listen for Darling Slug Days (Monica's favorite tip for spoonie parents with young children)
  • Great things to have on bed rest: dumbells, apple watch, iPad, apple pencil, yoga ball, bands, slow cooker, rolling file cabinet, and pedals
  • For work delegation and clear goals. Try Fiverr or TaskRabbit
  • How to stay physically active from a bed. We are NOT doctors. We don't even play one on the podcast or TV so ask someone with a coat and a degree before using. 
  • For us the IMPORTANCE of pets. Monica has fun with direwolf while having a POTS attack
  • We talk about work and education that can be done from bed or recliner.
  • A real talk about the NEW NORMAL, thank you, Dame Oprah.
  • Pinterest, yes, Pinterest, the ultimate rabbit hole. Also some advice on how to use Pinterest to make your life So much easier
  • Google Keep the BEST list-making app for the forgetful spoonie
  • Some Books To Read to adjust to a new life of chronic illness
  1. The Raging Sloth Eric Eden
  2. There's Nothing Wrong With You Cheri Huber
  3. Siddartha Hermann Hesse
]]>

Clamon Natural Health Talking To Invisible Not Broken A Chronic Illness Podcast About Bed Rest
Elizabeth Clammon On Invisible Not Broken Chronic Illness Podcast
Monica Michelle Invisible Not Broken Chronic Illness Podcast Host
Glynda The Good Pug Monica Michelle's Support Pug
Captain Kirk Monica Michelle's Well Meaning Support Wolf
Be Kind

Lupus, Fibromyalgia, EDS, and a Car Accident: Karma needs to chill.

A discussion with naturopath Elizabeth Clamon from Clamon Natural Health, and Monica Michelle who between the two of them are dealing with Chronic Fatigue, Lupus, Ehlers Danlos, Chronic Pain, Car Accident, and Fibromyalgia. This is a panel talk all about LIVING with a horizontal life or how to live when bedbound with chronic illness.

 

When Monica Michelle became sick and spending far too much time in bed she started a list of what would still be possible in her life when so much of it took place in bed. Elizabeth Clamon discusses her life after a car accident and chronic illness pushed her into bed right after she got her degree, Elizabeth began and runs a business, Clamon Natural Health, while homeschooling her children.

During this panel

  • Parenting from bed: homeschool, delegation, chores, and listen for Darling Slug Days (Monica's favorite tip for spoonie parents with young children)
  • Great things to have on bed rest: dumbells, apple watch, iPad, apple pencil, yoga ball, bands, slow cooker, rolling file cabinet, and pedals
  • For work delegation and clear goals. Try Fiverr or TaskRabbit
  • How to stay physically active from a bed. We are NOT doctors. We don't even play one on the podcast or TV so ask someone with a coat and a degree before using. 
  • For us the IMPORTANCE of pets. Monica has fun with direwolf while having a POTS attack
  • We talk about work and education that can be done from bed or recliner.
  • A real talk about the NEW NORMAL, thank you, Dame Oprah.
  • Pinterest, yes, Pinterest, the ultimate rabbit hole. Also some advice on how to use Pinterest to make your life So much easier
  • Google Keep the BEST list-making app for the forgetful spoonie
  • Some Books To Read to adjust to a new life of chronic illness
  1. The Raging Sloth Eric Eden
  2. There's Nothing Wrong With You Cheri Huber
  3. Siddartha Hermann Hesse
]]>
Everything you wanted to know about Medical Marijuana : Laws, Health, and the Other Side of Legality: It’s Not Easy Being Green Everything you wanted to know about Medical Marijuana : Laws, Health, and the Other Side of Legality: It’s Not Easy Being Green Mon, 26 Feb 2018 14:30:00 GMT 59:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a90cca9652dea92f985834a no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877d2 Everything you wanted to know about Medical Marijuana : Laws, Health, and the Other Side of Legality: It’s Not Easy Being Green Links & Show Notes For Medical Marijuana and Chronic Pain Panel Discussion
  1. Jason David and child seizures medical marijuana
  2. Charlottes Web CBD treatment for pediatric seizures
  3. Sanjay Gupta
  4. Oprah and Medical Marijuana
  5. Sunset Magazine and Medical Marijuana in landscaping
  6. National Geographic and Medical Marijuana
  7. Medical Marijuana Refugees
  8. Medical Marijuana and Cancer, Medical Marijuana and PTSD, Medical Marijuana and Chronic Pain, Medical Marijuana and Autoimmune Disorders, Medical Marijuana and Depression,
  9. What does Peer Reviewed mean?
  10. California Medical Marijuana Tax Code
  11. Department of Health Medical Marijuana
  12. The Sinister Reason Weed is Illegal A fun way to find out about the VERY racially motivated reason of why marijuana became illegal.
  13. CBG CBD THC

Medical Marijuana Panel Show Notes


Everything you wanted to know about Medical Marijuana: Laws, Health, and the Other Side of Legality: It’s Not Easy Being Green

download.png

Emily Joyce CW Analytical Laboratories VP business development 

medical-marijuana-.png

Jessica  Peters Moxi

 

invisible-not-broken-invisible-illness-podcast-websize.jpg

Monica Michelle Podcaster, Children's Book Writer and Illustrator, and EDS, POTS, MCA, Fibromyalgia, and chronic pain patient and medical marijuana user.

 

 

 


 

What does a lab do for medical marijuana?

Jessica Peters of Moxi CBD rich tinctures now out of business because of Santa Rosa fires. Keep an eye out for her next business venture. Came to medical marijuana for her endometriosis becoming non-symptomatic after her use of marijuana

Jessica has worked at Harborside Medical

If you want people lowering their opioid use don’t make medical marijuana costly or difficult to get and other tales of common sense

Taxation and not having the ability to use insurance means at least for Monica Michelle not being able to afford medication when taxes are more than the product

Pediatric medical marijuana with seizure disorders and the parents who become medical refugees to get their children medicine that WILL NOT kill them. 

CPS issues with medicating children with Medical Marijuana. By the way, information by the government on what is or is not allowed by the CPS was VERY hard to find.

A miracle cure? Might be if we could take it off schedule 1 to LEGALLY study all aspects of a plant that has NEVER caused an overdose death.

Unravel the medical mystery of THC CBD and the rest of the alphabet soup

You thought THC was just for fun….hang on and have a listen

So marijuana is legal right? Hang in and listen to what it means to be a schedule 1 substance (If you have listened to this far can we at least all agree that this is not a plant with ZERO medical benefits).

What happens when you run a business that is legal in certain states but is ILLEGAL in the United States hint no insurance, no write off and no business bank account. Just think what happened in the Santa Rosa fire to farmers at harvest time.

Who benefits when people can grow their own medicine? Any guesses?

Why are Pharmaceutical companies investing research into medical marijuana?

What happened when the people who need the medicine the most are on disability and do not have extra money to buy their medical marijuana but hey the prescription drugs are $5 to $10 with insurance.

What we can do to help people get their medicine. It will be grassroots and it will come down to all of us to create change

]]>
Links & Show Notes For Medical Marijuana and Chronic Pain Panel Discussion
  1. Jason David and child seizures medical marijuana
  2. Charlottes Web CBD treatment for pediatric seizures
  3. Sanjay Gupta
  4. Oprah and Medical Marijuana
  5. Sunset Magazine and Medical Marijuana in landscaping
  6. National Geographic and Medical Marijuana
  7. Medical Marijuana Refugees
  8. Medical Marijuana and Cancer, Medical Marijuana and PTSD, Medical Marijuana and Chronic Pain, Medical Marijuana and Autoimmune Disorders, Medical Marijuana and Depression,
  9. What does Peer Reviewed mean?
  10. California Medical Marijuana Tax Code
  11. Department of Health Medical Marijuana
  12. The Sinister Reason Weed is Illegal A fun way to find out about the VERY racially motivated reason of why marijuana became illegal.
  13. CBG CBD THC

Medical Marijuana Panel Show Notes


Everything you wanted to know about Medical Marijuana: Laws, Health, and the Other Side of Legality: It’s Not Easy Being Green

download.png

Emily Joyce CW Analytical Laboratories VP business development 

medical-marijuana-.png

Jessica  Peters Moxi

 

invisible-not-broken-invisible-illness-podcast-websize.jpg

Monica Michelle Podcaster, Children's Book Writer and Illustrator, and EDS, POTS, MCA, Fibromyalgia, and chronic pain patient and medical marijuana user.

 

 

 


 

What does a lab do for medical marijuana?

Jessica Peters of Moxi CBD rich tinctures now out of business because of Santa Rosa fires. Keep an eye out for her next business venture. Came to medical marijuana for her endometriosis becoming non-symptomatic after her use of marijuana

Jessica has worked at Harborside Medical

If you want people lowering their opioid use don’t make medical marijuana costly or difficult to get and other tales of common sense

Taxation and not having the ability to use insurance means at least for Monica Michelle not being able to afford medication when taxes are more than the product

Pediatric medical marijuana with seizure disorders and the parents who become medical refugees to get their children medicine that WILL NOT kill them. 

CPS issues with medicating children with Medical Marijuana. By the way, information by the government on what is or is not allowed by the CPS was VERY hard to find.

A miracle cure? Might be if we could take it off schedule 1 to LEGALLY study all aspects of a plant that has NEVER caused an overdose death.

Unravel the medical mystery of THC CBD and the rest of the alphabet soup

You thought THC was just for fun….hang on and have a listen

So marijuana is legal right? Hang in and listen to what it means to be a schedule 1 substance (If you have listened to this far can we at least all agree that this is not a plant with ZERO medical benefits).

What happens when you run a business that is legal in certain states but is ILLEGAL in the United States hint no insurance, no write off and no business bank account. Just think what happened in the Santa Rosa fire to farmers at harvest time.

Who benefits when people can grow their own medicine? Any guesses?

Why are Pharmaceutical companies investing research into medical marijuana?

What happened when the people who need the medicine the most are on disability and do not have extra money to buy their medical marijuana but hey the prescription drugs are $5 to $10 with insurance.

What we can do to help people get their medicine. It will be grassroots and it will come down to all of us to create change

]]>
Chronic Fatigue PCOS A Real Life What Would Happen If Your Life Changed Completely In One Day {Chronic Illness Podcast} Chronic Fatigue PCOS A Real Life What Would Happen If Your Life Changed Completely In One Day {Chronic Illness Podcast} Mon, 19 Feb 2018 14:30:00 GMT 1:05:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a85c1cc652dea4d51029726 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877d3 Chronic Fatigue and The Monday That Changed Everything A Chronic Illness Podcast CFS and PCOS This Week on Invisible Not Broken A Chronic Illness Podcast
Chronic Fatigue This Week On Invisible Not Broken A Chronic Illness Podcast
 Click to See Francis' Blog

Click to See Francis' Blog


Questions


What is your disorder? *

CFS (and PCOS) Please read Frances' blog post about CFS  at her blog Fancy Like That and follow all of her social media I spent close to stalker-like hours on her Pinterest page.

At what age did your disorder become a daily issue? *

24

Who were you before your illness became debilitating? *

I was a quote-unquote 'normal' twenty-something with a lot of plans

What would you do if you were not dealing with your invisible illness? *

I would probably be working hard on my career and I would spend most of my spare time painting and be decorating our new house (instead of directing my partner to do it from the sofa...)

What would you like people to know about your daily life? *

Although it may seem like fun and games to be permanently having a sick day, it gets boring fast... especially when you don't always even have the brain capacity to do things like binge-watch great TV shows and read books that have been on your to-read pile forever. I'm currently working on a programme with my CFS clinic to raise my energy levels and while that is working it also means I have to take 15-minute breaks every half hour, no matter what, and I think that can be difficult for people to understand too.

What would make living and moving in the world easier for you? *

More energy! Ha. But seriously... since diving (slash being dunked) into the world of invisible illnesses I think the biggest thing that would make a difference for me is just more understanding - by doctors and the general public - of invisible illnesses and of how to talk to the people dealing with them.

Do you have any life hacks? *

Join a Facebook group! I wasn't sold on going to the support group my doctor found because of the travel and general energy usage it would involve, but I've felt a lot less alone since finding so many places online where I can talk to other people who have the same issues as me and actually understand what I mean when I say I'm having a bad day etc. I'm also really into bullet journaling at the moment - it's a great creative outlet for me (although it doesn't have to be decorative to work!) and I find it so helpful to have everything laid out in ways that make sense to me.

What kind of support do you get from family or friends? *

I'm incredibly lucky to have a bunch of amazingly supporting friends and family and my boyfriend, who I live with. The best kind of support is when people say that they've read up on your illness or ask questions that show they're really trying to understand. Having said that, I also really value the friends I have who don't bring it up at all unless I do - sometimes you need to be taken out of the chronic illness bubble and gossip about so-and-so's latest Instagram post or whatever and forget about everything for a while.

Have you ever had someone not believe you have an invisible illness because of your appearance? *

Not yet... and touch wood never. I've had people say to me that I look 'better' or 'well', but in context, they generally mean in comparison to when they last saw me (usually this only happens when I bother to put makeup on and/or do something with my hair other than my now-signature pineapple bun)

Has this been a positive or negative experience? *

It doesn't make me feel great, but I know that they mean well - I just need to work out a way to tell them that I'd rather not hear it without being rude!

How has your invisible illness affected your relationships? *

I've definitely had to change the way that I think about certain relationships. I'm usually someone who takes on the 'Organiser' role in friendship groups, and I've had to tell myself to step back from that because I know that logistics and things are going to drain my energy. And in my relationship with my boyfriend, I have to work hard not to feel like we've gone from equal partners to carer and patient sometimes, especially on my worse days when he not only has to go to work while I stay home, but also comes home and does all of the cooking and cleaning, plus looks after all of our pets. And when he goes away - on holiday with his friends, or for work - if it's for more than a couple of days I have to have my parents come to stay with me or go to them because it's too much to try and keep myself and the house going on my own for too long. I think for me the key is talking about that kind of stuff with the people involved and reminding myself constantly that they're doing it because they love me and not because they think I'm incapable. With my boyfriend, we've recently started having set-aside 'date nights' in the week, which is something I always thought was a bit cheesy before, but now it's good for us as a time to really spend time as a couple.

Is there anything you are afraid to tell even the people closest to you? *

Sometimes I'll try to hide how bad I'm feeling - emotionally and/or physically - but I'm trying to avoid doing that... it always comes out anyway, and it's not good for me to bottle things up!

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes and no. I'm in a weird place where CFS/ME is sort of 'in vogue' at the moment - there have been a few features about it on the news and radio recently in the UK, so my doctors are keen for me to understand that they understand. However, I do find it difficult sometimes to go to appointments alone, especially when my brain fog is particularly active, and I've had difficulty in the pat conveying that to doctors.

What is your best coping mechanism? *

Humour, usually of the gallows variety, and listening to podcasts - usually about true crime.

What are you the most fearful of and hopeful for in the future? *

I'm hopeful that I'll find a way to manage my symptoms and that I can turn this whole period of my life into something positive and productive. I'm fearful of having a relapse into worse symptoms, and of my loved ones getting bored of my limitations.

What is your favorite swear word?

Fuck (ideally followed by 'you', 'it', or 'off')

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

I'd love you to push my blog if possible!! I'm planning a series of CFS-related posts alongside my usual blather

What is the hardest and/or best lesson your condition has taught you?

It's made me very aware of my privileges when it comes to healthcare and having a support network, and spending so much time stuck in my own head has also made me get to know myself a lot better, too!

What is the best purchase under $100 that helped your life

My Netflix subscription, a decent firm pillow, and bed socks


A List Of Our Favorite Shows To Stream



Other Reccomendations



]]>
CFS and PCOS This Week on Invisible Not Broken A Chronic Illness Podcast
Chronic Fatigue This Week On Invisible Not Broken A Chronic Illness Podcast
 Click to See Francis' Blog

Click to See Francis' Blog


Questions


What is your disorder? *

CFS (and PCOS) Please read Frances' blog post about CFS  at her blog Fancy Like That and follow all of her social media I spent close to stalker-like hours on her Pinterest page.

At what age did your disorder become a daily issue? *

24

Who were you before your illness became debilitating? *

I was a quote-unquote 'normal' twenty-something with a lot of plans

What would you do if you were not dealing with your invisible illness? *

I would probably be working hard on my career and I would spend most of my spare time painting and be decorating our new house (instead of directing my partner to do it from the sofa...)

What would you like people to know about your daily life? *

Although it may seem like fun and games to be permanently having a sick day, it gets boring fast... especially when you don't always even have the brain capacity to do things like binge-watch great TV shows and read books that have been on your to-read pile forever. I'm currently working on a programme with my CFS clinic to raise my energy levels and while that is working it also means I have to take 15-minute breaks every half hour, no matter what, and I think that can be difficult for people to understand too.

What would make living and moving in the world easier for you? *

More energy! Ha. But seriously... since diving (slash being dunked) into the world of invisible illnesses I think the biggest thing that would make a difference for me is just more understanding - by doctors and the general public - of invisible illnesses and of how to talk to the people dealing with them.

Do you have any life hacks? *

Join a Facebook group! I wasn't sold on going to the support group my doctor found because of the travel and general energy usage it would involve, but I've felt a lot less alone since finding so many places online where I can talk to other people who have the same issues as me and actually understand what I mean when I say I'm having a bad day etc. I'm also really into bullet journaling at the moment - it's a great creative outlet for me (although it doesn't have to be decorative to work!) and I find it so helpful to have everything laid out in ways that make sense to me.

What kind of support do you get from family or friends? *

I'm incredibly lucky to have a bunch of amazingly supporting friends and family and my boyfriend, who I live with. The best kind of support is when people say that they've read up on your illness or ask questions that show they're really trying to understand. Having said that, I also really value the friends I have who don't bring it up at all unless I do - sometimes you need to be taken out of the chronic illness bubble and gossip about so-and-so's latest Instagram post or whatever and forget about everything for a while.

Have you ever had someone not believe you have an invisible illness because of your appearance? *

Not yet... and touch wood never. I've had people say to me that I look 'better' or 'well', but in context, they generally mean in comparison to when they last saw me (usually this only happens when I bother to put makeup on and/or do something with my hair other than my now-signature pineapple bun)

Has this been a positive or negative experience? *

It doesn't make me feel great, but I know that they mean well - I just need to work out a way to tell them that I'd rather not hear it without being rude!

How has your invisible illness affected your relationships? *

I've definitely had to change the way that I think about certain relationships. I'm usually someone who takes on the 'Organiser' role in friendship groups, and I've had to tell myself to step back from that because I know that logistics and things are going to drain my energy. And in my relationship with my boyfriend, I have to work hard not to feel like we've gone from equal partners to carer and patient sometimes, especially on my worse days when he not only has to go to work while I stay home, but also comes home and does all of the cooking and cleaning, plus looks after all of our pets. And when he goes away - on holiday with his friends, or for work - if it's for more than a couple of days I have to have my parents come to stay with me or go to them because it's too much to try and keep myself and the house going on my own for too long. I think for me the key is talking about that kind of stuff with the people involved and reminding myself constantly that they're doing it because they love me and not because they think I'm incapable. With my boyfriend, we've recently started having set-aside 'date nights' in the week, which is something I always thought was a bit cheesy before, but now it's good for us as a time to really spend time as a couple.

Is there anything you are afraid to tell even the people closest to you? *

Sometimes I'll try to hide how bad I'm feeling - emotionally and/or physically - but I'm trying to avoid doing that... it always comes out anyway, and it's not good for me to bottle things up!

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes and no. I'm in a weird place where CFS/ME is sort of 'in vogue' at the moment - there have been a few features about it on the news and radio recently in the UK, so my doctors are keen for me to understand that they understand. However, I do find it difficult sometimes to go to appointments alone, especially when my brain fog is particularly active, and I've had difficulty in the pat conveying that to doctors.

What is your best coping mechanism? *

Humour, usually of the gallows variety, and listening to podcasts - usually about true crime.

What are you the most fearful of and hopeful for in the future? *

I'm hopeful that I'll find a way to manage my symptoms and that I can turn this whole period of my life into something positive and productive. I'm fearful of having a relapse into worse symptoms, and of my loved ones getting bored of my limitations.

What is your favorite swear word?

Fuck (ideally followed by 'you', 'it', or 'off')

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

I'd love you to push my blog if possible!! I'm planning a series of CFS-related posts alongside my usual blather

What is the hardest and/or best lesson your condition has taught you?

It's made me very aware of my privileges when it comes to healthcare and having a support network, and spending so much time stuck in my own head has also made me get to know myself a lot better, too!

What is the best purchase under $100 that helped your life

My Netflix subscription, a decent firm pillow, and bed socks


A List Of Our Favorite Shows To Stream



Other Reccomendations



]]>
Disability and Travel International Ideas, Frustrations, and Tips from Spoonies Who Have Been There {Chronic Illness Podcast) Disability and Travel International Ideas, Frustrations, and Tips from Spoonies Who Have Been There {Chronic Illness Podcast) Mon, 12 Feb 2018 14:30:00 GMT 53:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a7f7e3753450a4981fe79c5 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877d4 Disability and Travel International Ideas, Frustrations, and Tips from Spoonies Who Have Been There {Chronic Illness Podcast)

We respect your privacy.

Thank you!

So Kyros just got back from traveling overseas and came back to talk all about disability and travel.

Recommendations


Global Entry

Compression Socks

 

What are your best tips for traveling? Tweet @invisiblenotbrk or comment below

]]>

We respect your privacy.

Thank you!

So Kyros just got back from traveling overseas and came back to talk all about disability and travel.

Recommendations


Global Entry

Compression Socks

 

What are your best tips for traveling? Tweet @invisiblenotbrk or comment below

]]>
Chronic Pain, Opioid Crisis, and Medical Marijuana a Conversation with Karina Strum Chronic Pain, Opioid Crisis, and Medical Marijuana a Conversation with Karina Strum Mon, 05 Feb 2018 14:30:00 GMT 16:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a775453ec212dda58429ec6 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877d5 Karina Strum interviews Monica Michelle about Medical Marijuana, Chronic Pain, Opioids, and Ehlers Danlos Syndrome You might remember Karina Strum, if you don’t here is her interview. This is where I got the tables reversed and she interviewed me about my daily life which absolutely includes daily dislocations, opioids, medical marijuana, and daily fear that a government and overzealous media will make getting the medication I need for daily survival harder or impossible to access. Along with the audio I’m including the video, no judgment on my messy room.

Please check out Karina Strum's blog

 

If you are interested here is Kyros and my panel about pain management and the opioid crisis and here is our about page if you would like to learn more about us and our medical conditions. 

]]>
You might remember Karina Strum, if you don’t here is her interview. This is where I got the tables reversed and she interviewed me about my daily life which absolutely includes daily dislocations, opioids, medical marijuana, and daily fear that a government and overzealous media will make getting the medication I need for daily survival harder or impossible to access. Along with the audio I’m including the video, no judgment on my messy room.

Please check out Karina Strum's blog

 

If you are interested here is Kyros and my panel about pain management and the opioid crisis and here is our about page if you would like to learn more about us and our medical conditions. 

]]>
Work, Disability, and the Spoonie Life {A Chronic Illness Podcast} Work, Disability, and the Spoonie Life {A Chronic Illness Podcast} Mon, 29 Jan 2018 14:30:00 GMT 59:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a6bb3458165f5e669bf63d5 no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877d6 Myths, Issues, and the Unexpected When You Are Disabled And Working A Chronic Illness Podcast
  • Disability, staying home, guilt, and screwing with the feminist agenda.
  • Trying to get over "letting down" the people in your life by staying home for disability.
  • Some behind the scenes of what happened when Monica Michelle had to shut down her Menlo Park photography studio.
  • Trying to justify your day when you stay home every day.
  • Spoon theory and getting to work using public transportation which is not accessible for all, BART calling you out on your pointless elevators. This is one of the BIG reasons MANY disabled people CANNOT work.
  • Why people are dragging themselves through work when their bodies no longer work: Insurance, Retirement, and the huge hole between what disability pays and how much you will need for basic living.
  • Privilege, disability, and working. Do you have a position and company policies that let you do what you need to feel better, take time off for flares, and Dr. appointments?
  • What happens when your medication is not legal for you to take because of your job.
  • Can you get work RESPECT when you are in a wheelchair? Is the workplace accessible to get around with canes and wheelchairs? Enough handicap parking spaces? 
  • SERIOUS words of respect for teenagers dealing with mental and physical disability in high school and college.
  • Businesses, before you call yourself accessible borrow a wheelchair and try to do everything needed THEN tell me if you are accessible. 
  • Fooling yourself on your abilities after a few "good days"
  • Staying home is not a choice most of us would make.
  • Show Links

    ACA      Low-Cost Perscription APP Good RX

    Activism on Your Phone Don't Wine Text Your Representatives!

    ]]>
  • Disability, staying home, guilt, and screwing with the feminist agenda.
  • Trying to get over "letting down" the people in your life by staying home for disability.
  • Some behind the scenes of what happened when Monica Michelle had to shut down her Menlo Park photography studio.
  • Trying to justify your day when you stay home every day.
  • Spoon theory and getting to work using public transportation which is not accessible for all, BART calling you out on your pointless elevators. This is one of the BIG reasons MANY disabled people CANNOT work.
  • Why people are dragging themselves through work when their bodies no longer work: Insurance, Retirement, and the huge hole between what disability pays and how much you will need for basic living.
  • Privilege, disability, and working. Do you have a position and company policies that let you do what you need to feel better, take time off for flares, and Dr. appointments?
  • What happens when your medication is not legal for you to take because of your job.
  • Can you get work RESPECT when you are in a wheelchair? Is the workplace accessible to get around with canes and wheelchairs? Enough handicap parking spaces? 
  • SERIOUS words of respect for teenagers dealing with mental and physical disability in high school and college.
  • Businesses, before you call yourself accessible borrow a wheelchair and try to do everything needed THEN tell me if you are accessible. 
  • Fooling yourself on your abilities after a few "good days"
  • Staying home is not a choice most of us would make.
  • Show Links

    ACA      Low-Cost Perscription APP Good RX

    Activism on Your Phone Don't Wine Text Your Representatives!

    ]]>
    Searching For A Diagnosis Prescious My Prescious: A Chronic Illness Podcast Searching For A Diagnosis Prescious My Prescious: A Chronic Illness Podcast Mon, 22 Jan 2018 14:30:00 GMT 1:02:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a651404652dea6b6a22c2dd yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877d7 A look at what it is like to be sick and searching for a diagnosis in the US healthcare system
    Searching for a diagnosis a chronic illness podcast
    How To Help A Friend With A Chronic Illness: A Chronic Illness Podcast

    Show Notes For This Weeks Chronic Illness Podcast


    • What it’s like when ALL your medical tests show you are the healthiest sick person
    • Oh that’s a thing and the amazing crazy things your body can do with chronic illness
    • You know that feeling when you can’t breathe…yay like that most of the time
    • Is it Prednisone or is it LSD?
    • Show & Tell Can Go Horribly Wrong With Chronic Illness
    • No Diagnosis means no protocol
    • Searching for a Diagnosis on Dr. House …It’s Not Lupus, right?
    • Chronic Illness Diagnosis hunting worst, most expensive, and time-consuming hobby
    • The loneliness Of Not Having A Diagnosis
    • Land Of Opportunity Only Counts If Everyone Can Get Health Insurance ( A Small business perspective)
    • If you have anxiety already your new symptoms are NOT anxiety. You know when it is different.
    • Seriously Trying to keep up with all the symptoms The entire body went into revolt
    • Spin classes a religion be NICE when someone runs out
    • Gluten Free does not mean that you are THAT person 
    • What to do to  Take Care Of The Chronically Ill Person In Your Life if You want to do more than “thinking of You”
    • Hormones Strike Again Periods & Chronic Illness 
    • Whats powering through and what is self-sabotage 
    • Cats As Relaxation Gurus
    • If you are going to search for a diagnosis you should get medical school credit
    • Protocol For Taking Care Of Chronically Ill Friends (Originally Made For a Community To Help  Cancer Patients during radiation and chemo)

    Links 


    Lupus Test

    Predizone Effects

    Google Speak

    Google Drive


    What is your disorder? *

    undiagnosed

    At what age did your disorder become a daily issue? *

    20

    Who were you before your illness became debilitating? *

    Before my big flare last year I was always busy- childhood through adulthood. I love being busy and feeling productive. I teach special education full time and was teaching between 5-10 classes per week at the gym on top of that, not to mention my two workouts. Over the last year or two, my energy levels and health fluctuated often and began to crash last November. I probably was fading before that but was unable to notice. I think I started to realize how sick I was when it was finally confirmed that I was sick and the symptoms were not from depression. Once I knew that my inability to push through was because my body is most likely attacking itself in one way or another, I realized I had been pushing through exhaustion for quite a while. I was under the impression that I was becoming unmotivated and lazy.

    What would you do if you were not dealing with your invisible illness? *

    If I were not dealing with an invisible illness I would still be teaching at the gym and doing intense workouts for sure. I LOVE taking fitness classes and trying new styles. I haven’t been able to do cardio or lift “heavy” in about 7 months and my strength and endurance have decreased significantly in that span as well. Fitness was something I found when I moved home after graduation. Moving back in with my parents, I needed to find an outlet. To be honest, I’ve tried to let go of a lot of the thoughts about what I’ve “lost” and focus on what I’ve gained. I also am trying to believe I haven’t truly “lost” anything, but that I’m in a moment of flare and hopefully can find a happy medium in the future. Had I not had to slow down I would not have discovered new passions I have explored. Lately, I have been trying to combine my love for fitness with my passion for photography. I’ve had great opportunities to do photo shoots for a friend of mine at her fitness studio, Garage Girl Fitness.

    What would you like people to know about your daily life? *

    This is a hard one! I guess I would tell people that I’m sorry if I ever bailed on you last minute or have seemed flakey. My symptoms are so unpredictable from day to day that it is hard for me to commit to plans far in advance. So much of my energy goes to work that it is hard to accomplish much else than the school day sometimes. I have not discovered my happy medium yet and still seem to overdo it on good days leading to very drained days shortly afterward, which is probably why it is so confusing and hard for others to understand- or at least why I’m paranoid they don’t understand. I get scared people may feel I am faking it when a bad day follows a great day. I’m high energy one day (and by high energy, I still mean about 1/10th of the amount I was able to have and sustain in the past) and can barely keep my eyes open or stand up for more than a few minutes the next. I want everyone to know that if I did cancel on them, that it took a lot of preventative care prior in order to make that decision. I most likely rested and implemented various other self-care practices even more than usual leading up to the event whether it be a lunch date or a formal event.

    What would make living and moving in the world easier for you? *

    Something that could sort and put away my laundry for me!

    Do you have any life hacks? *

    Google Drive! Google Drive has been a lifesaver. We started using it at work last year and I realized how useful it is. I am able to upload all of my test results etc. to a drive and share access with my doctors. Being undiagnosed, I've seen so many different kinds of specialists that each has their own opinions. My primary care is through a local hospital so I began with staying "in network" and utilizing their specialists. As much as I hoped that they would all work out, I'm currently looking into finding a rheumatologist in Boston. Being so close to some of the best hospitals in the world, I figure it is silly to not utilize those resources. My "key player" has been a naturopath/functional medicine doctor in New Hampshire. She is not in the same network as my primary care so the google drive has been very useful. I've been able to track my symptoms, diet, activity level, etc. on a spreadsheet that my naturopath is able to check it at any time. She's actually emailed me on a Sunday to clarify something!

    What kind of support do you get from family or friends? *

    I will be honest, I'm VERY bad at asking for help and I like to think I am good at putting on a front. The first thing that comes to mind isn't what one usually expects, but I am the luckiest person in the world for having the landlords that I have. They have two dogs that I have over all the time, which is amazing. It's like I have dogs but do not have to worry about being home for them, vet bills, etc. But honestly, that is the least of it. They do so many things to take care of me and I'm not sure I would make it without them. There have been days when I am so sick I cannot even handle the stairs never mind driving myself anywhere. They've left me Gatorade and crackers or prescriptions at my door when I'm too sick to function. They remind me when my oil may be getting low, get me back in when I've locked myself out, plow the driveway when it snows, Ranee has even broken in to wake me up when I overslept! I'm not saying that my other friends and family are not helpful, this is just the most unexpected and lucky form of helpful I have in my life :) I have close friends from high school and college and they are always here to check in, talk, etc. Now that we are all scattered it's a bit more difficult to be around each other in person, especially since I'm pretty spent just after getting ready some days! But no matter what they are always here for me and things never change when we see each other. My friend and personal trainer Rose has been an amazing friend and support system as well. She has built an amazing atmosphere at her fitness studio making me and others feel comfortable at all times. I cannot believe the relationships we have built and truly feel I have found family here. My family, of course, helps as well! I do, however, feel like I downplay how I am feeling at times because I'm scared they will worry, therefore I'm not sure they are always aware of the help I may need. It's not that I am not close, honest, or open with them, I just don't have any answers and I know my mother's reaction will be question after question after question so at times I feel like I may as well tell her AFTER it is figured out when I have a response versus in the moment and having to use my remaining energy to calm HER down.

    Have you ever had someone not believe you have an invisible illness because of your appearance? *

    I don't think so...not that anyone has brought to my attention. I do get self-conscious using the elevator at work sometimes though. I integrate my students in and out of the general education classroom and we walk back and forth from the first to third floor often. I held out for as long as possible but have now begun to use the elevator on tougher days.

    Has this been a positive or negative experience? *

    There are positives and negatives. Like I mentioned before, I do feel I have much positive to focus on despite the negative that has and is happening. I have been able to find and explore new passions as well as embrace my students and teaching job in a new way. Many of my students are very picky with food, as this is common with Autism. When children are picky to a point that they will not eat things due to texture or sensory reasons they can develop deficiencies etc. just like any other person can. I've been using my "leaky gut" and change of lifestyle as a teachable moment for my kids. We do a nutrition unit a couple times a week using the MyPlate model. I've watched two of them start to try school lunch after eating the same exact lunch day in and day out since the day they started school at 3 (they are now 8!). I stood in the cafeteria taking pictures of them in line like a proud mom!

    How has your invisible illness affected your relationships? *

    I think it has in the fact that I have not seen people as often in person. But I am still navigating the social life while sick piece so I try not to come to any hasty conclusions before I rule out any of my faults first.

    Is there anything you are afraid to tell even the people closest to you? *

    Oh boy......honestly I will have to think about this one leading up to when we speak later :)

    Does the fact that your disease is invisible change how healthcare professionals treat you? *

    I think the biggest piece that made/makes healthcare professionals treat me differently is my mental health past. There are so many symptoms that are due to chronic illness (not mental) that were written off as part of my anxiety, previous eating disorder, depression etc. To me, my history with these things should make my opinion even more valid that the symptoms are not part of it. I can tell the difference between the two now and wish that knowledge could be used to my benefit versus a write-off.

    What is your best coping mechanism? *

    My best coping mechanism lately is photography. It helps me accomplish a form of meditation- getting me out of my own head and into the moment.

    What are you the most fearful of and hopeful for in the future? *

    I guess I'm most fearful that things will never calm down. It's hard to watch all of your friends getting engaged and married, starting families, buying homes, etc. while I'm trying to figure out if there's a way I can get insurance to cover Zyrtec D so that I'm not spending $30+ a month on just one of my medications. So much of my money and time goes into my health I just hope that I find an equilibrium soon so that I can even just begin to think about planning, saving, etc.

    What is your favorite swear word?

    Fuck :) My weakness as a teacher is also when students swear. When kids swear I can't help but laugh!

    Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

    I would love to mention my friend's studio Garage Girl Fitness if possible as it has been a huge resource and support system for me :)

    What is the hardest and/or best lesson your condition has taught you?

    I guess the hardest and best lesson I have learned is how strong I actually used to be. I truly had no idea of the strength my body had until it began to somewhat crash.

    ]]>

    Searching for a diagnosis a chronic illness podcast
    How To Help A Friend With A Chronic Illness: A Chronic Illness Podcast

    Show Notes For This Weeks Chronic Illness Podcast


    • What it’s like when ALL your medical tests show you are the healthiest sick person
    • Oh that’s a thing and the amazing crazy things your body can do with chronic illness
    • You know that feeling when you can’t breathe…yay like that most of the time
    • Is it Prednisone or is it LSD?
    • Show & Tell Can Go Horribly Wrong With Chronic Illness
    • No Diagnosis means no protocol
    • Searching for a Diagnosis on Dr. House …It’s Not Lupus, right?
    • Chronic Illness Diagnosis hunting worst, most expensive, and time-consuming hobby
    • The loneliness Of Not Having A Diagnosis
    • Land Of Opportunity Only Counts If Everyone Can Get Health Insurance ( A Small business perspective)
    • If you have anxiety already your new symptoms are NOT anxiety. You know when it is different.
    • Seriously Trying to keep up with all the symptoms The entire body went into revolt
    • Spin classes a religion be NICE when someone runs out
    • Gluten Free does not mean that you are THAT person 
    • What to do to  Take Care Of The Chronically Ill Person In Your Life if You want to do more than “thinking of You”
    • Hormones Strike Again Periods & Chronic Illness 
    • Whats powering through and what is self-sabotage 
    • Cats As Relaxation Gurus
    • If you are going to search for a diagnosis you should get medical school credit
    • Protocol For Taking Care Of Chronically Ill Friends (Originally Made For a Community To Help  Cancer Patients during radiation and chemo)

    Links 


    Lupus Test

    Predizone Effects

    Google Speak

    Google Drive


    What is your disorder? *

    undiagnosed

    At what age did your disorder become a daily issue? *

    20

    Who were you before your illness became debilitating? *

    Before my big flare last year I was always busy- childhood through adulthood. I love being busy and feeling productive. I teach special education full time and was teaching between 5-10 classes per week at the gym on top of that, not to mention my two workouts. Over the last year or two, my energy levels and health fluctuated often and began to crash last November. I probably was fading before that but was unable to notice. I think I started to realize how sick I was when it was finally confirmed that I was sick and the symptoms were not from depression. Once I knew that my inability to push through was because my body is most likely attacking itself in one way or another, I realized I had been pushing through exhaustion for quite a while. I was under the impression that I was becoming unmotivated and lazy.

    What would you do if you were not dealing with your invisible illness? *

    If I were not dealing with an invisible illness I would still be teaching at the gym and doing intense workouts for sure. I LOVE taking fitness classes and trying new styles. I haven’t been able to do cardio or lift “heavy” in about 7 months and my strength and endurance have decreased significantly in that span as well. Fitness was something I found when I moved home after graduation. Moving back in with my parents, I needed to find an outlet. To be honest, I’ve tried to let go of a lot of the thoughts about what I’ve “lost” and focus on what I’ve gained. I also am trying to believe I haven’t truly “lost” anything, but that I’m in a moment of flare and hopefully can find a happy medium in the future. Had I not had to slow down I would not have discovered new passions I have explored. Lately, I have been trying to combine my love for fitness with my passion for photography. I’ve had great opportunities to do photo shoots for a friend of mine at her fitness studio, Garage Girl Fitness.

    What would you like people to know about your daily life? *

    This is a hard one! I guess I would tell people that I’m sorry if I ever bailed on you last minute or have seemed flakey. My symptoms are so unpredictable from day to day that it is hard for me to commit to plans far in advance. So much of my energy goes to work that it is hard to accomplish much else than the school day sometimes. I have not discovered my happy medium yet and still seem to overdo it on good days leading to very drained days shortly afterward, which is probably why it is so confusing and hard for others to understand- or at least why I’m paranoid they don’t understand. I get scared people may feel I am faking it when a bad day follows a great day. I’m high energy one day (and by high energy, I still mean about 1/10th of the amount I was able to have and sustain in the past) and can barely keep my eyes open or stand up for more than a few minutes the next. I want everyone to know that if I did cancel on them, that it took a lot of preventative care prior in order to make that decision. I most likely rested and implemented various other self-care practices even more than usual leading up to the event whether it be a lunch date or a formal event.

    What would make living and moving in the world easier for you? *

    Something that could sort and put away my laundry for me!

    Do you have any life hacks? *

    Google Drive! Google Drive has been a lifesaver. We started using it at work last year and I realized how useful it is. I am able to upload all of my test results etc. to a drive and share access with my doctors. Being undiagnosed, I've seen so many different kinds of specialists that each has their own opinions. My primary care is through a local hospital so I began with staying "in network" and utilizing their specialists. As much as I hoped that they would all work out, I'm currently looking into finding a rheumatologist in Boston. Being so close to some of the best hospitals in the world, I figure it is silly to not utilize those resources. My "key player" has been a naturopath/functional medicine doctor in New Hampshire. She is not in the same network as my primary care so the google drive has been very useful. I've been able to track my symptoms, diet, activity level, etc. on a spreadsheet that my naturopath is able to check it at any time. She's actually emailed me on a Sunday to clarify something!

    What kind of support do you get from family or friends? *

    I will be honest, I'm VERY bad at asking for help and I like to think I am good at putting on a front. The first thing that comes to mind isn't what one usually expects, but I am the luckiest person in the world for having the landlords that I have. They have two dogs that I have over all the time, which is amazing. It's like I have dogs but do not have to worry about being home for them, vet bills, etc. But honestly, that is the least of it. They do so many things to take care of me and I'm not sure I would make it without them. There have been days when I am so sick I cannot even handle the stairs never mind driving myself anywhere. They've left me Gatorade and crackers or prescriptions at my door when I'm too sick to function. They remind me when my oil may be getting low, get me back in when I've locked myself out, plow the driveway when it snows, Ranee has even broken in to wake me up when I overslept! I'm not saying that my other friends and family are not helpful, this is just the most unexpected and lucky form of helpful I have in my life :) I have close friends from high school and college and they are always here to check in, talk, etc. Now that we are all scattered it's a bit more difficult to be around each other in person, especially since I'm pretty spent just after getting ready some days! But no matter what they are always here for me and things never change when we see each other. My friend and personal trainer Rose has been an amazing friend and support system as well. She has built an amazing atmosphere at her fitness studio making me and others feel comfortable at all times. I cannot believe the relationships we have built and truly feel I have found family here. My family, of course, helps as well! I do, however, feel like I downplay how I am feeling at times because I'm scared they will worry, therefore I'm not sure they are always aware of the help I may need. It's not that I am not close, honest, or open with them, I just don't have any answers and I know my mother's reaction will be question after question after question so at times I feel like I may as well tell her AFTER it is figured out when I have a response versus in the moment and having to use my remaining energy to calm HER down.

    Have you ever had someone not believe you have an invisible illness because of your appearance? *

    I don't think so...not that anyone has brought to my attention. I do get self-conscious using the elevator at work sometimes though. I integrate my students in and out of the general education classroom and we walk back and forth from the first to third floor often. I held out for as long as possible but have now begun to use the elevator on tougher days.

    Has this been a positive or negative experience? *

    There are positives and negatives. Like I mentioned before, I do feel I have much positive to focus on despite the negative that has and is happening. I have been able to find and explore new passions as well as embrace my students and teaching job in a new way. Many of my students are very picky with food, as this is common with Autism. When children are picky to a point that they will not eat things due to texture or sensory reasons they can develop deficiencies etc. just like any other person can. I've been using my "leaky gut" and change of lifestyle as a teachable moment for my kids. We do a nutrition unit a couple times a week using the MyPlate model. I've watched two of them start to try school lunch after eating the same exact lunch day in and day out since the day they started school at 3 (they are now 8!). I stood in the cafeteria taking pictures of them in line like a proud mom!

    How has your invisible illness affected your relationships? *

    I think it has in the fact that I have not seen people as often in person. But I am still navigating the social life while sick piece so I try not to come to any hasty conclusions before I rule out any of my faults first.

    Is there anything you are afraid to tell even the people closest to you? *

    Oh boy......honestly I will have to think about this one leading up to when we speak later :)

    Does the fact that your disease is invisible change how healthcare professionals treat you? *

    I think the biggest piece that made/makes healthcare professionals treat me differently is my mental health past. There are so many symptoms that are due to chronic illness (not mental) that were written off as part of my anxiety, previous eating disorder, depression etc. To me, my history with these things should make my opinion even more valid that the symptoms are not part of it. I can tell the difference between the two now and wish that knowledge could be used to my benefit versus a write-off.

    What is your best coping mechanism? *

    My best coping mechanism lately is photography. It helps me accomplish a form of meditation- getting me out of my own head and into the moment.

    What are you the most fearful of and hopeful for in the future? *

    I guess I'm most fearful that things will never calm down. It's hard to watch all of your friends getting engaged and married, starting families, buying homes, etc. while I'm trying to figure out if there's a way I can get insurance to cover Zyrtec D so that I'm not spending $30+ a month on just one of my medications. So much of my money and time goes into my health I just hope that I find an equilibrium soon so that I can even just begin to think about planning, saving, etc.

    What is your favorite swear word?

    Fuck :) My weakness as a teacher is also when students swear. When kids swear I can't help but laugh!

    Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

    I would love to mention my friend's studio Garage Girl Fitness if possible as it has been a huge resource and support system for me :)

    What is the hardest and/or best lesson your condition has taught you?

    I guess the hardest and best lesson I have learned is how strong I actually used to be. I truly had no idea of the strength my body had until it began to somewhat crash.

    ]]>
    Running A Business While Having Chronic Illness Some Tips Some Pitfalls and Some Hope {A Chronic Illness Podcast} Running A Business While Having Chronic Illness Some Tips Some Pitfalls and Some Hope {A Chronic Illness Podcast} Mon, 15 Jan 2018 14:20:00 GMT 58:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a4e89eee2c4835f86bc6848 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877d8 Tips, Pitfalls, Hope, and Pink Underbelly Truth of running a business when you have a chronic illness
    Sucess is not final: failure is not fatal it is the courage to continue that counts
    — Winston Churchill
    I’m scared of how much my body will limit my vision for this.
    — Monica Michelle
    Two women in business while also dealing with chronic illness have a VERY honest discussion about pitfalls, planning, and vision in business while being a spoonie.

    Two women in business while also dealing with chronic illness have a VERY honest discussion about pitfalls, planning, and vision in business while being a spoonie.

    Invisible Not Broken began because I have seen what happens when everyone is too frightened to show their vulnerabilities. It leads to misunderstandings and a serious lack of empathy. I always knew this project would be hard and desperately uncomfortable. You only have to listen to our Gaslighting episode to hear our theory about being the wounded gazelle (nope lions move along I am doing just FINE). This episode was very much pink underbelly vulnerability time for both Eva and I. We both had never really talked openly before of all of the challenges of running a business while being chronically ill with fibromyalgia for Eva who runs Wellacopia and EDS and fibromyalgia for Monica.

    Show Notes 

    • Up and downsides when you are a spoonie and are your own boss.
    • How to define success? Purpose? Busy? Likes? Subscribers?
    • Why Monica Michelle had to shut down a successful photography business (hint Ehlers Danlos) and the turning point when Monica decided to come out of the spoon ie closet.
    • Eva's inspiration for her tech startup Wellacopia which matches chronic illness patients with doctors.
    • The importance of supportive people in your life. Goal setting and planning for your business while figuring in your chronic illness.
    • Some tips and frustrations for finding balance
    • The Secret Spoonie Society
    • Find out how and why Invisible Not Broken began.
    • How to plan for brain-body breakdowns as a spoonie business owner
    • The painkiller effect of being "on"
    • Work life and sickness balance, cue the hilarity
    • The myth of superwoman
    • Stop the 'killing it' mentality
    • Frustrations with a vision that goes beyond physical ability. (Hey interns would be great)
    • Rock bottom what it looks like and the upside of everything going to hell.
    • Life Hacks to surviving and setting goals 
    • "What you do is not who you are or your value."
    • The questions to ask to find out your core. (Try Fight Club the movie NOT the book) Guess what? Monica's core is being a storyteller.
    • "Anything can be taken away except your imagination."

    Spoonie Book Club Reading

    make your suggestions in the comments

    Diving Bell and the Butterfly

    Dr. Who

    When Breath Becomes Air

    Fight Club

    Siddartha

    Shameless Plug Time For Kyros and For My Book

    Snuggle Bunny: A Bedtime Story By Monica Michelle Dreaming of Xeres: The Third War Book 1 (Volume 1) By Kyros Amphiptere, Orion T. Hunter ]]>
    Sucess is not final: failure is not fatal it is the courage to continue that counts
    — Winston Churchill
    I’m scared of how much my body will limit my vision for this.
    — Monica Michelle
    Two women in business while also dealing with chronic illness have a VERY honest discussion about pitfalls, planning, and vision in business while being a spoonie.

    Two women in business while also dealing with chronic illness have a VERY honest discussion about pitfalls, planning, and vision in business while being a spoonie.

    Invisible Not Broken began because I have seen what happens when everyone is too frightened to show their vulnerabilities. It leads to misunderstandings and a serious lack of empathy. I always knew this project would be hard and desperately uncomfortable. You only have to listen to our Gaslighting episode to hear our theory about being the wounded gazelle (nope lions move along I am doing just FINE). This episode was very much pink underbelly vulnerability time for both Eva and I. We both had never really talked openly before of all of the challenges of running a business while being chronically ill with fibromyalgia for Eva who runs Wellacopia and EDS and fibromyalgia for Monica.

    Show Notes 

    • Up and downsides when you are a spoonie and are your own boss.
    • How to define success? Purpose? Busy? Likes? Subscribers?
    • Why Monica Michelle had to shut down a successful photography business (hint Ehlers Danlos) and the turning point when Monica decided to come out of the spoon ie closet.
    • Eva's inspiration for her tech startup Wellacopia which matches chronic illness patients with doctors.
    • The importance of supportive people in your life. Goal setting and planning for your business while figuring in your chronic illness.
    • Some tips and frustrations for finding balance
    • The Secret Spoonie Society
    • Find out how and why Invisible Not Broken began.
    • How to plan for brain-body breakdowns as a spoonie business owner
    • The painkiller effect of being "on"
    • Work life and sickness balance, cue the hilarity
    • The myth of superwoman
    • Stop the 'killing it' mentality
    • Frustrations with a vision that goes beyond physical ability. (Hey interns would be great)
    • Rock bottom what it looks like and the upside of everything going to hell.
    • Life Hacks to surviving and setting goals 
    • "What you do is not who you are or your value."
    • The questions to ask to find out your core. (Try Fight Club the movie NOT the book) Guess what? Monica's core is being a storyteller.
    • "Anything can be taken away except your imagination."

    Spoonie Book Club Reading

    make your suggestions in the comments

    Diving Bell and the Butterfly

    Dr. Who

    When Breath Becomes Air

    Fight Club

    Siddartha

    Shameless Plug Time For Kyros and For My Book

    Snuggle Bunny: A Bedtime Story By Monica Michelle Dreaming of Xeres: The Third War Book 1 (Volume 1) By Kyros Amphiptere, Orion T. Hunter ]]>
    Get This Woman A Cape: Dealing With NF: Chronic Illness and Parenting Children with Chronic Illness: And Some Kick Ass Snowboarding and Other Self Care Tips {Chronic Illness Podcast} Get This Woman A Cape: Dealing With NF: Chronic Illness and Parenting Children with Chronic Illness: And Some Kick Ass Snowboarding and Other Self Care Tips {Chronic Illness Podcast} Mon, 01 Jan 2018 14:30:00 GMT 1:00:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a46c8e90d92977993d0e3ce yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877d9 Bipolar, GTubes, NF, Aspergers, Self Care, Snowboarding, and Nesting Divorce
    Living With NF: Invisible Illness Podcast
    Spoonie Mom Caring for Chronically Ill Children

    Please download images to share the podcast on social media.


    Show Notes


    Welcome to this week's chronic illness podcast episode of Invisible Not Broken. This week I am talking with Elana who has the chronic illness condition neurofibromatosis, bipolar and partial blindness.
     

    Along with her chronic illness, she is a caregiver to her young children who have their own disabilities. Elana is not only taking care of her own physical limitations she is also parenting children who have their own mental and physical challenges. She spends close to 40 hours a week coordinating care for her family.

    Her daughter is on the autism spectrum, ADHD, and childhood Clinical Depression. We talk about school's fiscal responsibility to children with special needs. Some of the struggles of parenting and disciplining a child with Aspergers and how to handle a first grader who has clinical depression.

    Her son has NF needing constant wheelchair and g tube. We talk about some of the VERY difficult decisions parents with a genetic disorder have to make. Come to this discussion with kindness and gentleness. Each choice is DEEPLY personal. The definitions of a medical miracle and one of the most lovely stories I have ever heard.

    How surgeons handle a fourteen-hour brain surgery and why Elana has twitches when she hears the theme to Orange is The New Black . 

    We talk about self-care and the frustration of hearing DECREASE your stress. Drs. beware. The multidimensional theory of chronic illness and caretaking. Grab your bowtie and fez, ok I went Dr. Who and Neil Gaiman's Neverwhere but Elana is using Stranger Things. We are geeks We are fine with it.

    NestingDivorce Style 

    Spousal Support

    Michelle Obama Go High

    Questions & Answers

    What is your disorder? *

    NF1, Mood Disorder, Essential Tremor (Me). ASD, Mood Disorder (DD), Epilepsy, Epilepsy, CP, CVI, CAPD, Medically Fragile, G Tube (DS)

    At what age did your disorder become a daily issue? *

    2

    Who were you before your illness became debilitating? *

    A regular mom before they were sick/special needs

    What would you do if you were not dealing with your invisible illness? *

    I have absolutely no idea. Unfathomable.

    What would you like people to know about your daily life? *

    That I am tired ALL the time. That it feels like too much, ALL the time. That you have to continue, even if there is no "light"...

    What would make living and moving in the world easier for you? *

    If society actually supported families like mine rather than empty promises. If people were not afraid of my kids (or wracked with "survivor guilt")

    Do you have any life hacks? *

    Not to be glib, but its all a life hack. Everything from parking when there is no wheelchair lift, to managing hospital discharge to getting kids with eating disorders fed. This is not what it was supposed to be.

    What kind of support do you get from family or friends? *

    This is really hard to answer. Sometimes I'm overwhelmed by the large and small outpourings of love. Sometimes I'm alone on an island and its like no one can see me.

    Have you ever had someone not believe you have an invisible illness because of your appearance? *

    Me less so because I'm very proud so I don't share much. My daughter, all the time.

    Has this been a positive or negative experience? *

    It's been a learning experience. As people get to know her better it's interesting to see how their perceptions change. It's also helpful that even in the last 5 years, they way people think about autism has changed.

    Would you care to relate the details of what happened when someone didn't believe you were disabled?

    It was very hard and remains hard to get my daughter the services she needs. There have been times when people come around and I want to scream I TOLD YOU So but that does me no good. I'm learning a lot about humility and patience.

    How has your invisible illness affected your relationships? *

    Most of the people I used to know are not in my life in a meaningful way. The ones that still are I appreciate even more. Being a caretaker gave me the strength to release my ex and I from a relationship that had died long ago. We work very hard on keeping things amicable.

    Is there anything you are afraid to tell even the people closest to you? *

    Not really. Almost nothing frightens me. If people cant take me for 100% who I am, they can go away. Life is too short for any of that.

    Does the fact that your disease is invisible change how healthcare professionals treat you? *

    I'm not sure because we see mostly specialists who specialize in our particular diagnoses. I am glad that none of us of chronic pain. I've heard that's the worst.

    What is your best coping mechanism? *

    My stubborn personality. My work hard/play hard approach to life. Having few fucks to give about anything that is not important.

    What are you the most fearful of and hopeful for in the future? *

    I'm fearful that it's too late for the world in general. Well less fearful and more that is my conclusion. I think the human race is totally doomed. The US is crumbling and I have no hope really for the long term. Who are we to think that we are better than any other country and/or that our species is above extinction. We don't use our higher brain power for much good. For hopeful, it's the little things. I'm hopeful no one is hospitalized in the next 6 months. That would be awesome!

    What is your favorite swear word?

    Fuck or Douchebag

    Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

    So many. Id love to do an entire recording on the small non-profits that truly save lives. One goal I have is to help people target their philanthropy to more efficient, higher impact organizations.

    What is the best purchase under $100 that helped your life

    Netflix

    ]]>

    Living With NF: Invisible Illness Podcast
    Spoonie Mom Caring for Chronically Ill Children

    Please download images to share the podcast on social media.


    Show Notes


    Welcome to this week's chronic illness podcast episode of Invisible Not Broken. This week I am talking with Elana who has the chronic illness condition neurofibromatosis, bipolar and partial blindness.
     

    Along with her chronic illness, she is a caregiver to her young children who have their own disabilities. Elana is not only taking care of her own physical limitations she is also parenting children who have their own mental and physical challenges. She spends close to 40 hours a week coordinating care for her family.

    Her daughter is on the autism spectrum, ADHD, and childhood Clinical Depression. We talk about school's fiscal responsibility to children with special needs. Some of the struggles of parenting and disciplining a child with Aspergers and how to handle a first grader who has clinical depression.

    Her son has NF needing constant wheelchair and g tube. We talk about some of the VERY difficult decisions parents with a genetic disorder have to make. Come to this discussion with kindness and gentleness. Each choice is DEEPLY personal. The definitions of a medical miracle and one of the most lovely stories I have ever heard.

    How surgeons handle a fourteen-hour brain surgery and why Elana has twitches when she hears the theme to Orange is The New Black . 

    We talk about self-care and the frustration of hearing DECREASE your stress. Drs. beware. The multidimensional theory of chronic illness and caretaking. Grab your bowtie and fez, ok I went Dr. Who and Neil Gaiman's Neverwhere but Elana is using Stranger Things. We are geeks We are fine with it.

    NestingDivorce Style 

    Spousal Support

    Michelle Obama Go High

    Questions & Answers

    What is your disorder? *

    NF1, Mood Disorder, Essential Tremor (Me). ASD, Mood Disorder (DD), Epilepsy, Epilepsy, CP, CVI, CAPD, Medically Fragile, G Tube (DS)

    At what age did your disorder become a daily issue? *

    2

    Who were you before your illness became debilitating? *

    A regular mom before they were sick/special needs

    What would you do if you were not dealing with your invisible illness? *

    I have absolutely no idea. Unfathomable.

    What would you like people to know about your daily life? *

    That I am tired ALL the time. That it feels like too much, ALL the time. That you have to continue, even if there is no "light"...

    What would make living and moving in the world easier for you? *

    If society actually supported families like mine rather than empty promises. If people were not afraid of my kids (or wracked with "survivor guilt")

    Do you have any life hacks? *

    Not to be glib, but its all a life hack. Everything from parking when there is no wheelchair lift, to managing hospital discharge to getting kids with eating disorders fed. This is not what it was supposed to be.

    What kind of support do you get from family or friends? *

    This is really hard to answer. Sometimes I'm overwhelmed by the large and small outpourings of love. Sometimes I'm alone on an island and its like no one can see me.

    Have you ever had someone not believe you have an invisible illness because of your appearance? *

    Me less so because I'm very proud so I don't share much. My daughter, all the time.

    Has this been a positive or negative experience? *

    It's been a learning experience. As people get to know her better it's interesting to see how their perceptions change. It's also helpful that even in the last 5 years, they way people think about autism has changed.

    Would you care to relate the details of what happened when someone didn't believe you were disabled?

    It was very hard and remains hard to get my daughter the services she needs. There have been times when people come around and I want to scream I TOLD YOU So but that does me no good. I'm learning a lot about humility and patience.

    How has your invisible illness affected your relationships? *

    Most of the people I used to know are not in my life in a meaningful way. The ones that still are I appreciate even more. Being a caretaker gave me the strength to release my ex and I from a relationship that had died long ago. We work very hard on keeping things amicable.

    Is there anything you are afraid to tell even the people closest to you? *

    Not really. Almost nothing frightens me. If people cant take me for 100% who I am, they can go away. Life is too short for any of that.

    Does the fact that your disease is invisible change how healthcare professionals treat you? *

    I'm not sure because we see mostly specialists who specialize in our particular diagnoses. I am glad that none of us of chronic pain. I've heard that's the worst.

    What is your best coping mechanism? *

    My stubborn personality. My work hard/play hard approach to life. Having few fucks to give about anything that is not important.

    What are you the most fearful of and hopeful for in the future? *

    I'm fearful that it's too late for the world in general. Well less fearful and more that is my conclusion. I think the human race is totally doomed. The US is crumbling and I have no hope really for the long term. Who are we to think that we are better than any other country and/or that our species is above extinction. We don't use our higher brain power for much good. For hopeful, it's the little things. I'm hopeful no one is hospitalized in the next 6 months. That would be awesome!

    What is your favorite swear word?

    Fuck or Douchebag

    Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

    So many. Id love to do an entire recording on the small non-profits that truly save lives. One goal I have is to help people target their philanthropy to more efficient, higher impact organizations.

    What is the best purchase under $100 that helped your life

    Netflix

    ]]>
    <![CDATA[Holidays & Parties Spoonie Survival Guide {Chronic Illness Podcast}]]> Sun, 24 Dec 2017 16:00:00 GMT 10:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a3eb549e2c4836cd1b19b99 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877da Chronic Illness Podcast Holiday Survival Edition  


    Holidays with chronic illness

    This is super general and done just from my perspective. Take what works for you drop what doesn't and tweet your own tips to @invisiblenotbrk and help another spoonie out! Remember we are not medical professionals, if we were with our vocabulary we would be fired.

    Now that I think I have legally covered our asses I'm going to start with what to do if you are spending the holidays alone.

    Self-care is your buzzword of the day. Make sure you have your meds Make a playlist that makes you smile, no judging Jefferson Airplane We Built this City is on mine. ok judge, if it makes you feel better.

    Jigsaw Puzzle (Is wear it calms my ADD brain) Click if you think for a minute I was going to leave Dr. Who out of this. Favorite Dr. Who quote? "You know that in 900 years in time and space I've never met anyone who wasn't important before." Seriously if you have never watched it almost counts as an antidepressant for me. Streaming on Amazon Prime.

     Walks or just sunlight. If stuck in bed pick the part of you that can move and do. 

    Make something art, music, the worst poetry in existence. Just make something. This Neil Gaiman speech is well worth your 20 minutes.


    If you are a Holiday sort of person decorate your nightstands or make a warm cinnamon drink.

    Take a class

    Duolingo

    Skillshare

    YouTube

    Craftsy

    CreativeLive

    If you are really in serious emotional trouble please call the helpline

    Call 1-800-273-8255

    Available 24 hours every day

     

    If you are not alone (like NEVER alone) Planning ahead. 

    Pack meds.

    Call ahead and make sure there is a quiet space just for you

    Bring food you can eat if anyone gives you attitude you can always explain in great detail what will happen if you eat their food trust me you will never have to explain again.

    Lower your standards. Say it with me 'I am not Martha Stewart. I am not Joanna Gaines.' These are lovely talented women who have help, so much help


    The phrase 'No.' This magic word has so much power that usually toddlers wield it. It is your turn. Will people be disappointed? Only the asses.  

    I am going to give you the magic phrase that separates the merely ignorant from the jerks 'I have blank I can spell it if you would like to look it up. Currently, I am only accepting advice from my health care professionals but thank you for your concern.' If they persist hide in that quiet room you asked for.

    Remember You know your body and your mind take care of them in a way that suits you best,  I'm closing with the advice of one of our listeners. 

    Remembering it’s okay to not feel okay. You can’t control when flare ups happen, and it’s not your fault!! It’s okay to need to take naps or not eat dinner because you can’t. It’s okay to wake up late, it’s okay to not have energy!!

    C{Andy} cane  🍭


    So that's it. If you 'have more tips I will leave the comets open or tweet @invisiblenotbrk. Share this with family and friends Give the gift of kind comments on Itunes and until next week

    Be kind. Be Gentle. Be a fucking bad ass.

    Chronic Illness Holiday Survival Guide
    Spoonie Party Survival Guide
    ]]>
     


    Holidays with chronic illness

    This is super general and done just from my perspective. Take what works for you drop what doesn't and tweet your own tips to @invisiblenotbrk and help another spoonie out! Remember we are not medical professionals, if we were with our vocabulary we would be fired.

    Now that I think I have legally covered our asses I'm going to start with what to do if you are spending the holidays alone.

    Self-care is your buzzword of the day. Make sure you have your meds Make a playlist that makes you smile, no judging Jefferson Airplane We Built this City is on mine. ok judge, if it makes you feel better.

    Jigsaw Puzzle (Is wear it calms my ADD brain) Click if you think for a minute I was going to leave Dr. Who out of this. Favorite Dr. Who quote? "You know that in 900 years in time and space I've never met anyone who wasn't important before." Seriously if you have never watched it almost counts as an antidepressant for me. Streaming on Amazon Prime.

     Walks or just sunlight. If stuck in bed pick the part of you that can move and do. 

    Make something art, music, the worst poetry in existence. Just make something. This Neil Gaiman speech is well worth your 20 minutes.


    If you are a Holiday sort of person decorate your nightstands or make a warm cinnamon drink.

    Take a class

    Duolingo

    Skillshare

    YouTube

    Craftsy

    CreativeLive

    If you are really in serious emotional trouble please call the helpline

    Call 1-800-273-8255

    Available 24 hours every day

     

    If you are not alone (like NEVER alone) Planning ahead. 

    Pack meds.

    Call ahead and make sure there is a quiet space just for you

    Bring food you can eat if anyone gives you attitude you can always explain in great detail what will happen if you eat their food trust me you will never have to explain again.

    Lower your standards. Say it with me 'I am not Martha Stewart. I am not Joanna Gaines.' These are lovely talented women who have help, so much help


    The phrase 'No.' This magic word has so much power that usually toddlers wield it. It is your turn. Will people be disappointed? Only the asses.  

    I am going to give you the magic phrase that separates the merely ignorant from the jerks 'I have blank I can spell it if you would like to look it up. Currently, I am only accepting advice from my health care professionals but thank you for your concern.' If they persist hide in that quiet room you asked for.

    Remember You know your body and your mind take care of them in a way that suits you best,  I'm closing with the advice of one of our listeners. 

    Remembering it’s okay to not feel okay. You can’t control when flare ups happen, and it’s not your fault!! It’s okay to need to take naps or not eat dinner because you can’t. It’s okay to wake up late, it’s okay to not have energy!!

    C{Andy} cane  🍭


    So that's it. If you 'have more tips I will leave the comets open or tweet @invisiblenotbrk. Share this with family and friends Give the gift of kind comments on Itunes and until next week

    Be kind. Be Gentle. Be a fucking bad ass.

    Chronic Illness Holiday Survival Guide
    Spoonie Party Survival Guide
    ]]>
    Darwin Has Some Explaining To Do: Endometriosis and Hysterectomy {A Chronic Illness Podcast} Darwin Has Some Explaining To Do: Endometriosis and Hysterectomy {A Chronic Illness Podcast} Mon, 18 Dec 2017 14:15:00 GMT 0 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a36fa96ec212d30322f0adc no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877db A Chronic Illness Podcast: Darwin Has Some Explaining To Do: Endometriosis and Hysterectomy {A Chronic Illness Podcast}  

    What is your disorder? *

    Endometriosis

    At what age did your disorder become a daily issue? *

    22

    Who were you before your illness became debilitating? *

    I had so much more energy

    What would you do if you were not dealing with your invisible illness? *

    I think I would have been more engaged in the world around me

    What would you like people to know about your daily life? *

    Post-hysterectomy it is so much better than before. I did normal daily life before, but it was hard some days especially when I was dealing with neuropathy

    What would make living and moving in the world easier for you? *

    No pain!

    Do you have any life hacks? *

    I had some hacks for dealing with pain like meds and stretches and resting in a dark room

    What kind of support do you get from family or friends? *

    People to talk to mainly and help from my husband when I wasn’t always up to tasks/child issues

    Have you ever had someone not believe you have an invisible illness because of your appearance? *

    No, because I didn’t really tell people about it, so no one knew

    Has this been a positive or negative experience? *

    Positive now that it’s resolved. Very negative before

    How has your invisible illness affected your relationships? *

    It stresses things occasionally when I am feeling pain and low energy so often at home

    Is there anything you are afraid to tell even the people closest to you? *

    Nope!

    Does the fact that your disease is invisible change how healthcare professionals treat you? *

    Yes. I had to push HARD for a hysterectomy with multiple doctors.

    What is your best coping mechanism? *

    Reading, coloring, spending time alone

    What are you the most fearful of and hopeful for in the future? *

    No fears. Hopeful for more energy to engage in life and not feel like everything is too overwhelming to accomplish

    What is your favorite swear word?

    Fuckers (applicable in 2017 in particular)

    Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview? *

    Nope! Everything is fair game:)

    What is the hardest and/or best lesson your condition has taught you?

    To advocate hard for yourself. Don’t stop pushing for answers and action from doctors.

    Endometriosis, Hysterectomy, and Spoonie
    Endometriosis Chronic Illness Podcast
    ]]>
     

    What is your disorder? *

    Endometriosis

    At what age did your disorder become a daily issue? *

    22

    Who were you before your illness became debilitating? *

    I had so much more energy

    What would you do if you were not dealing with your invisible illness? *

    I think I would have been more engaged in the world around me

    What would you like people to know about your daily life? *

    Post-hysterectomy it is so much better than before. I did normal daily life before, but it was hard some days especially when I was dealing with neuropathy

    What would make living and moving in the world easier for you? *

    No pain!

    Do you have any life hacks? *

    I had some hacks for dealing with pain like meds and stretches and resting in a dark room

    What kind of support do you get from family or friends? *

    People to talk to mainly and help from my husband when I wasn’t always up to tasks/child issues

    Have you ever had someone not believe you have an invisible illness because of your appearance? *

    No, because I didn’t really tell people about it, so no one knew

    Has this been a positive or negative experience? *

    Positive now that it’s resolved. Very negative before

    How has your invisible illness affected your relationships? *

    It stresses things occasionally when I am feeling pain and low energy so often at home

    Is there anything you are afraid to tell even the people closest to you? *

    Nope!

    Does the fact that your disease is invisible change how healthcare professionals treat you? *

    Yes. I had to push HARD for a hysterectomy with multiple doctors.

    What is your best coping mechanism? *

    Reading, coloring, spending time alone

    What are you the most fearful of and hopeful for in the future? *

    No fears. Hopeful for more energy to engage in life and not feel like everything is too overwhelming to accomplish

    What is your favorite swear word?

    Fuckers (applicable in 2017 in particular)

    Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview? *

    Nope! Everything is fair game:)

    What is the hardest and/or best lesson your condition has taught you?

    To advocate hard for yourself. Don’t stop pushing for answers and action from doctors.

    Endometriosis, Hysterectomy, and Spoonie
    Endometriosis Chronic Illness Podcast
    ]]>
    Chronic Illness Misconceptions, Spoon Theory Explained, Handicap Parking Peanut Gallery, and How To Be Really Nice To The Spoonie In Your Life Chronic Illness Misconceptions, Spoon Theory Explained, Handicap Parking Peanut Gallery, and How To Be Really Nice To The Spoonie In Your Life Mon, 11 Dec 2017 14:30:00 GMT 1:04:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a2dbae48165f5d27431e52a yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877dc Chronic Illness Misconceptions, Spoon Theory Explained, Handicap Parking Peanut Gallery, and How To Be Really Nice To The Spoonie In Your Life
    It’s not just us missing society. We are also missing FROM society
    — Monica Michelle Misconceptions of Chronic Illness

     

    Lisen to our most shareable episode. Send our chronic illness episode to the person you wish understood chronic illness better.

     

    Kyros' perfectly organized show notes that I systematiclly disorganized.

    Misconceptions about Invisible Illnesses

     

    Start with an explanation of Spoon Theory! https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

    Things we’re tired of hearing all the time:

     

    1. You don’t look sick. /  You look great. - When someone says, “But you LOOK good,” we really hear, “But, I don’t believe you, because I can’t see it.”
      1. That if you use a wheelchair, you have to use it all the time.
      2. That if you have a handicap placard, you must be using someone else's, because you can’t be the one who is handicapped.
      3. So, are you retired / on disability then? Just because you are disabled, doesn’t mean you can get disability (SSI).
      4. Just because a person has a disability does not mean they are disabled.  Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time, but struggle to get through their day, with little or no energy for other things. While still others may be unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities or need assistance with their care.
      5. Therefore, if a person is displaying a license to park in an accessible parking space, try offering a hand, instead of a visual judgment. After all…the people you are graciously intending to defend, may be standing right in front of you!”
      6. In 1997, there were 26 million Americans considered to have a severe disability and only 7 million of them use a wheelchair, cane, crutches or walker
        1. https://invisibledisabilities.org/ida-getting-the-word-out-about-invisible-disabilities/defining-invisible-disability/
        2. https://www.census.gov/sipp/
    2. But you were fine yesterday.
      1. You just want attention
      2. Munchausen syndrome or ‘factitious disorder’ – where people feign illness to gain attention or sympathy.”
    3. If you were really in that much pain it would show.
      1. A lot of pressure to not show pain / anything but a positive emotion.
    4. You’re too young to be disabled.
    5. It must be nice to get to stay home all day. / I wish I could stay home all day.
      1. smoking pot all day.
      2. We’re lazy. A drain on society. Bad parents.
      3. Just because we are home, we can’t contribute.
      4. Many people don’t realize that when you are not working, there are repercussions. 
        1. No social contact
        2. Lonliness
        3. The benefits of interacting with people disappear
        4. Financial hardships
        5. Social isolation
        6. Negative stereotypes - Working is way easier that being disabled
        7. Have to contend with not only losing the ability to do the things you want to do, but also fight with loved ones who sometimes don’t believe us, or understand us.
        8. I’m mourning the loss of the life I lived before, while simultaneously fighting friends and family who treat me like it’s not real, not that bad, or that I’m being lazy.
      5. What do you do all day?
      6. You must have so much free time.
      7. Pressure to make the most of your free time.
    6. Why don’t you just go to the hospital if you hurt that much. / Aren’t you better yet? 
      1. Doesn’t your insurance cover all that?
      2. Medication is a double edge sword. Sometimes you have to take 1 pill for a problem and then another for the side-effect of that first pill, and so on and so on.
      3. The assumption that the Doctor always knows best, because offtimes, you might be the one who knows the most about your problem/ your doctor may never have heard of your problem before.
      4. That doctors will keep trying to figure out what’s wrong with you without being hounded to do so.
      5. We didn’t do anything to deserve this or you brought it on yourself
      6. And this gets worse with age/being overweight because they blame everything on your age / weight
    7. You must feel so guilty about:
      1. Taking care of the kids
      2. Taking care of the house
      3. Not contributing
      4. Not working / supporting yourself
      5. Draining resources from the family
      6. Being a burden
      7. Not being able to play with the pet / walk pets.
    8. Just because I’m on opioids / marijuana does not mean I’m a drug addict.
    9. People think they understand what pain / exhaustion are like. It’s different when it’s EVERY day, not just once in awhile.
    10. 10.You’re so inspiring. (Well done not dying!) and trying to live up to that.
      1. You should either be pollyanna or crying all the time.
      2. Your partner must be a saint for sticking with you through this or marrying you anyway.
      3. We don’t want to give up. We make the effort to smile, laugh, pretend that everything is okay, look our best, and try to enjoy life as best as we can.
      4. This is a double edged sword though. By trying our hardest to not show pain or illness, we end up feeding into the prevailing assumption that we aren’t really in pain or sick. People assume that since we look good, we are doing better / not hurting. This couldn’t be farther from the truth. 
      5. Sometimes the reason we try so hard to look good / not show our illness is that WE want to forget, even if just for a moment, how hard our daily life is and how much we miss the life we used to have.

     

     

     

     

    https://undark.org/article/mystery-diseases-syndromes-health-care/

    https://www.youtube.com/user/invisiblenomoretv

    Our Most Shareable Episode Misconceptions About Chronic Illness
    Chronic Illness Podcast
    How To Be Really Nice To Your Spoonie
    Assumptions Non Spoonies Make About Chronic Illness
    ]]>
    It’s not just us missing society. We are also missing FROM society
    — Monica Michelle Misconceptions of Chronic Illness

     

    Lisen to our most shareable episode. Send our chronic illness episode to the person you wish understood chronic illness better.

     

    Kyros' perfectly organized show notes that I systematiclly disorganized.

    Misconceptions about Invisible Illnesses

     

    Start with an explanation of Spoon Theory! https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

    Things we’re tired of hearing all the time:

     

    1. You don’t look sick. /  You look great. - When someone says, “But you LOOK good,” we really hear, “But, I don’t believe you, because I can’t see it.”
      1. That if you use a wheelchair, you have to use it all the time.
      2. That if you have a handicap placard, you must be using someone else's, because you can’t be the one who is handicapped.
      3. So, are you retired / on disability then? Just because you are disabled, doesn’t mean you can get disability (SSI).
      4. Just because a person has a disability does not mean they are disabled.  Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time, but struggle to get through their day, with little or no energy for other things. While still others may be unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities or need assistance with their care.
      5. Therefore, if a person is displaying a license to park in an accessible parking space, try offering a hand, instead of a visual judgment. After all…the people you are graciously intending to defend, may be standing right in front of you!”
      6. In 1997, there were 26 million Americans considered to have a severe disability and only 7 million of them use a wheelchair, cane, crutches or walker
        1. https://invisibledisabilities.org/ida-getting-the-word-out-about-invisible-disabilities/defining-invisible-disability/
        2. https://www.census.gov/sipp/
    2. But you were fine yesterday.
      1. You just want attention
      2. Munchausen syndrome or ‘factitious disorder’ – where people feign illness to gain attention or sympathy.”
    3. If you were really in that much pain it would show.
      1. A lot of pressure to not show pain / anything but a positive emotion.
    4. You’re too young to be disabled.
    5. It must be nice to get to stay home all day. / I wish I could stay home all day.
      1. smoking pot all day.
      2. We’re lazy. A drain on society. Bad parents.
      3. Just because we are home, we can’t contribute.
      4. Many people don’t realize that when you are not working, there are repercussions. 
        1. No social contact
        2. Lonliness
        3. The benefits of interacting with people disappear
        4. Financial hardships
        5. Social isolation
        6. Negative stereotypes - Working is way easier that being disabled
        7. Have to contend with not only losing the ability to do the things you want to do, but also fight with loved ones who sometimes don’t believe us, or understand us.
        8. I’m mourning the loss of the life I lived before, while simultaneously fighting friends and family who treat me like it’s not real, not that bad, or that I’m being lazy.
      5. What do you do all day?
      6. You must have so much free time.
      7. Pressure to make the most of your free time.
    6. Why don’t you just go to the hospital if you hurt that much. / Aren’t you better yet? 
      1. Doesn’t your insurance cover all that?
      2. Medication is a double edge sword. Sometimes you have to take 1 pill for a problem and then another for the side-effect of that first pill, and so on and so on.
      3. The assumption that the Doctor always knows best, because offtimes, you might be the one who knows the most about your problem/ your doctor may never have heard of your problem before.
      4. That doctors will keep trying to figure out what’s wrong with you without being hounded to do so.
      5. We didn’t do anything to deserve this or you brought it on yourself
      6. And this gets worse with age/being overweight because they blame everything on your age / weight
    7. You must feel so guilty about:
      1. Taking care of the kids
      2. Taking care of the house
      3. Not contributing
      4. Not working / supporting yourself
      5. Draining resources from the family
      6. Being a burden
      7. Not being able to play with the pet / walk pets.
    8. Just because I’m on opioids / marijuana does not mean I’m a drug addict.
    9. People think they understand what pain / exhaustion are like. It’s different when it’s EVERY day, not just once in awhile.
    10. 10.You’re so inspiring. (Well done not dying!) and trying to live up to that.
      1. You should either be pollyanna or crying all the time.
      2. Your partner must be a saint for sticking with you through this or marrying you anyway.
      3. We don’t want to give up. We make the effort to smile, laugh, pretend that everything is okay, look our best, and try to enjoy life as best as we can.
      4. This is a double edged sword though. By trying our hardest to not show pain or illness, we end up feeding into the prevailing assumption that we aren’t really in pain or sick. People assume that since we look good, we are doing better / not hurting. This couldn’t be farther from the truth. 
      5. Sometimes the reason we try so hard to look good / not show our illness is that WE want to forget, even if just for a moment, how hard our daily life is and how much we miss the life we used to have.

     

     

     

     

    https://undark.org/article/mystery-diseases-syndromes-health-care/

    https://www.youtube.com/user/invisiblenomoretv

    Our Most Shareable Episode Misconceptions About Chronic Illness
    Chronic Illness Podcast
    How To Be Really Nice To Your Spoonie
    Assumptions Non Spoonies Make About Chronic Illness
    ]]>
    <![CDATA[Crohn's Disease: College and Invisible Illness, Parenting with Invisible Illness, Joys and Pitfalls of Canadian Healthcare, and The Ultimate Toxic Friend Cleanse]]> Mon, 04 Dec 2017 14:30:00 GMT 1:02:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a2185f79140b7638e29589c no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877dd This week on our chronic illness podcast, Invisible Not Broken, I interviewed a woman who has Crohn's Disease.

    Learn about what a diagnosis like Crohn's can be like in college, dating with a chronic illness, the Canadian healthcare system, parenting with Crohn's Disease, and the upside of chronic illness: the toxic friend cleanse.

    What is your disorder? *

    Crohn's Disease

    At what age did your disorder become a daily issue? *

    21

    Who were you before your illness became debilitating? *

    Adventurous World Traveller

    What would you do if you were not dealing with your invisible illness? *

    Spontaneous Travel

    What would you like people to know about your daily life? *

    I'm never quite sure when I wake up how the day will be. And I'm afraid of food.

    What would make living and moving in the world easier for you? *

    Ingredients lists on everything!

    Do you have any life hacks? *

    Lots. Most involve being really honest with people who need to know, and yet being subtle and discrete around the grossness with those who don't. It takes an incredible amount of mental resiliency to live with a chronic illness and helping those around you understand what to expect and where things are. There needs to be an incredible amount of trust between us when an illness is invisible. My family needs to know that I won't use my illness to "opt out" of things I don't want to do and that if I need to go back to bed for the day it's about

    What kind of support do you get from family or friends? *

    My family is amazing. My friend circle is a lot smaller than it was before, but the people left are really great.

    Have you ever had someone not believe you have an invisible illness because of your appearance? *

    Yes, in overt and subtle ways.

    Has this been a positive or negative experience? *

    Having to justify the hard choices my illness forces on me to some judgemental asshole sucks

    Would you care to relate the details of what happened when someone didn't believe you were disabled?

    The subtle disbelieving is harder and more emotionally painful than the overt stuff. It's easy to dismiss the ranting guy, but the "friend" that decides you are flaky because you keep cancelling, or the times when someone pushes back on a simple request because "you always use this fake disability to get your way" are really toxic and difficult, especially when they are co-workers or family

    How has your invisible illness affected your relationships? *

    I am a lot more choosy about who I give my time and energy to. My relationships are significantly deeper and stronger than they were before

    Is there anything you are afraid to tell even the people closest to you? *

    Not really

    Does the fact that your disease is invisible change how healthcare professionals treat you? *

    It can when I first arrive. I saw a huge shift in how seriously I was taken once I had a diagnosis they understood

    What is your best coping mechanism? *

    Laughter

    What are you the most fearful of and hopeful for in the future? *

    Fistula (no one wants to poop in their vagina), My kids and work give me meaning and inspiration, there is hope in that

    What is your favorite swear word?

    Scroat

    Is there anything you want to make sure we talk about during the interview?

    Like any organization you want to promote or something specific that you deal with.

    What is the hardest and/or best lesson your condition has taught you?

    How decoupled health and looks are and the really psychotic way society sees the female form

    Crohn's Disease This Week on Invisible Not Broken a Chronic Illness Podcast
    A Chronic Illness Podcast: This Week Crohn's Disease
    Chronic Illness Podcast: Relationships and Crohn's Disease
    A Chronic Illness Blog: This Week Crohn's Disease
    ]]>
    This week on our chronic illness podcast, Invisible Not Broken, I interviewed a woman who has Crohn's Disease.

    Learn about what a diagnosis like Crohn's can be like in college, dating with a chronic illness, the Canadian healthcare system, parenting with Crohn's Disease, and the upside of chronic illness: the toxic friend cleanse.

    What is your disorder? *

    Crohn's Disease

    At what age did your disorder become a daily issue? *

    21

    Who were you before your illness became debilitating? *

    Adventurous World Traveller

    What would you do if you were not dealing with your invisible illness? *

    Spontaneous Travel

    What would you like people to know about your daily life? *

    I'm never quite sure when I wake up how the day will be. And I'm afraid of food.

    What would make living and moving in the world easier for you? *

    Ingredients lists on everything!

    Do you have any life hacks? *

    Lots. Most involve being really honest with people who need to know, and yet being subtle and discrete around the grossness with those who don't. It takes an incredible amount of mental resiliency to live with a chronic illness and helping those around you understand what to expect and where things are. There needs to be an incredible amount of trust between us when an illness is invisible. My family needs to know that I won't use my illness to "opt out" of things I don't want to do and that if I need to go back to bed for the day it's about

    What kind of support do you get from family or friends? *

    My family is amazing. My friend circle is a lot smaller than it was before, but the people left are really great.

    Have you ever had someone not believe you have an invisible illness because of your appearance? *

    Yes, in overt and subtle ways.

    Has this been a positive or negative experience? *

    Having to justify the hard choices my illness forces on me to some judgemental asshole sucks

    Would you care to relate the details of what happened when someone didn't believe you were disabled?

    The subtle disbelieving is harder and more emotionally painful than the overt stuff. It's easy to dismiss the ranting guy, but the "friend" that decides you are flaky because you keep cancelling, or the times when someone pushes back on a simple request because "you always use this fake disability to get your way" are really toxic and difficult, especially when they are co-workers or family

    How has your invisible illness affected your relationships? *

    I am a lot more choosy about who I give my time and energy to. My relationships are significantly deeper and stronger than they were before

    Is there anything you are afraid to tell even the people closest to you? *

    Not really

    Does the fact that your disease is invisible change how healthcare professionals treat you? *

    It can when I first arrive. I saw a huge shift in how seriously I was taken once I had a diagnosis they understood

    What is your best coping mechanism? *

    Laughter

    What are you the most fearful of and hopeful for in the future? *

    Fistula (no one wants to poop in their vagina), My kids and work give me meaning and inspiration, there is hope in that

    What is your favorite swear word?

    Scroat

    Is there anything you want to make sure we talk about during the interview?

    Like any organization you want to promote or something specific that you deal with.

    What is the hardest and/or best lesson your condition has taught you?

    How decoupled health and looks are and the really psychotic way society sees the female form

    Crohn's Disease This Week on Invisible Not Broken a Chronic Illness Podcast
    A Chronic Illness Podcast: This Week Crohn's Disease
    Chronic Illness Podcast: Relationships and Crohn's Disease
    A Chronic Illness Blog: This Week Crohn's Disease
    ]]>
    A Real Talk About Pain Management: The Cost Of Chronic Pain: The Opioid Epidemic in Four Letter Words: A Chronic Illness Podcast A Real Talk About Pain Management: The Cost Of Chronic Pain: The Opioid Epidemic in Four Letter Words: A Chronic Illness Podcast Mon, 27 Nov 2017 14:30:00 GMT 49:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a1b273c24a694106d967228 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877de Real Talk on Chronic Pain Management Chronic Illness Podcast
    The Opioid Epidemic In Four Letter Words
    The Cost Of Have A Chronic Illness

    A Real Talk About Pain Management: The Cost Of Chronic Pain: The Opioid Epidemic in Four Letter Words: A Chronic Illness Podcast Chronic Illness Podcast.

    Kyros and I have dealt with Chronic pain for years. You can listen to either of our episodes to hear about Kyros's Morton's neuroma and Monica Michelle's fibromyalgia, POTS, and Ehlers Danlos

    We go over the true cost of having a chronic illness and/ or chronic pain.

    The opioid crisis and the feelings from someone who is a patient and is in chronic pain with chronic illness.

    Medical Marijuana and pain therapy.

    Privilege and pain management.

    Don't forget to share the podcast with someone in your life who has chronic pain.


    Links To Articles Cited


    What's in Your Supplement

    Medical Marijuana for Treatment of Chronic Pain and Other Medical and Psychiatric ProblemsA Clinical Review

    Some People Still Need Opioids

    Even in legal weed states, parents who consume pot can still lose custody of their kids


    Links To Products for Chronic Pain Management Mentioned


    Medical Marijuana Rub (If you live in a medical marijuana state. If not please contact your congressperson relentlessly).

    Quell

    Lady Gaga 5'2 Documentary

    Smart Crutches

    A Better Pain Scale because you know after this chronic pain podcast you need a laugh.


    Thank you so much for listening to our chronic illness podcast. Can you please

    1. Share us with a person dealing with chronic illness.
    2. Please subscribe if you haven't.
    3. Say something really nice about us on iTunes
    ]]>

    The Opioid Epidemic In Four Letter Words
    The Cost Of Have A Chronic Illness

    A Real Talk About Pain Management: The Cost Of Chronic Pain: The Opioid Epidemic in Four Letter Words: A Chronic Illness Podcast Chronic Illness Podcast.

    Kyros and I have dealt with Chronic pain for years. You can listen to either of our episodes to hear about Kyros's Morton's neuroma and Monica Michelle's fibromyalgia, POTS, and Ehlers Danlos

    We go over the true cost of having a chronic illness and/ or chronic pain.

    The opioid crisis and the feelings from someone who is a patient and is in chronic pain with chronic illness.

    Medical Marijuana and pain therapy.

    Privilege and pain management.

    Don't forget to share the podcast with someone in your life who has chronic pain.


    Links To Articles Cited


    What's in Your Supplement

    Medical Marijuana for Treatment of Chronic Pain and Other Medical and Psychiatric ProblemsA Clinical Review

    Some People Still Need Opioids

    Even in legal weed states, parents who consume pot can still lose custody of their kids


    Links To Products for Chronic Pain Management Mentioned


    Medical Marijuana Rub (If you live in a medical marijuana state. If not please contact your congressperson relentlessly).

    Quell

    Lady Gaga 5'2 Documentary

    Smart Crutches

    A Better Pain Scale because you know after this chronic pain podcast you need a laugh.


    Thank you so much for listening to our chronic illness podcast. Can you please

    1. Share us with a person dealing with chronic illness.
    2. Please subscribe if you haven't.
    3. Say something really nice about us on iTunes
    ]]>
    <![CDATA[Fibromyalgia, A Spoonie in Business, Selfcare, Best Gifts to Give Someone Who has Chronic Illness, & The Joys of Hormones and Chronic Illness]]> Wed, 22 Nov 2017 15:36:56 GMT 1:02:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5a15984d8165f542d6faf68b no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877df Fibromyalgia and Starting Wellacopia, a Tech Business With A Chronic Illness Fibromyalgia and starting a tech business as a spoonie

    I bow down to this rockstar. Eva manages her chronic illness, fibromyalgia and has a tech startup to help us spoonies find the best medical care for our condition. It is called Wellacopia. Go visit now while you listen! I hope you adore her as much as I do. With Eva's unique perspective and knowledge of the sometimes scary world of medicine and diet, she will hopefully be playing a larger role in our chronic illness podcast!

    Copy of Chronic Illness & Getting Diagnosis
    Copy of Best Gift for Someone With Chronic Illness
    Copy of Starting a Tech Startup as a Spoonie
    Copy of Fibromyalgia and Starting a Business as A Spoonie Interview With Founder of Wellacopia

    Name *Eva Lana Owner of Wellacopia a health app for spoonies

    Age *27

    What is your disorder? *

    Fibromyalgia, hyper-mobility syndrome and undiagnosed GI issues

    At what age did your disorder become a daily issue? * 12

    Who were you before your illness became debilitating? *

    an adventurous person and professional dancer

    What would you do if you were not dealing with your invisible illness? *

    dance every day

    What would you like people to know about your daily life? *

    I run a startup for people like myself with chronic illnesses while I cope with them myself

    What would make living and moving in the world easier for you? *

    having the proper support for my specific needs...and better weather

    Do you have any life hacks? *

    positive mantras and a superb personal support system at home Tempurpedic Mattress

    What kind of support do you get from family or friends? *

    understanding that they don't understand but are willing to be there for me anyway

    Have you ever had someone not believe you have an invisible illness because of your appearance? *

    of course plus my diagnosis is the known crap-shoot of diagnoses especially because it cant be formally diagnosed

    Has this been a positive or negative experience? *

    negative but didnt impact me long term

    Would you care to relate the details of what happened when someone didn't believe you were disabled?

    I felt the need to explain further. sometimes it worked, sometimes it didnt but regardless I always had to explain that I'm aware of it being a "crap-shoot diagnosis". basically I belittled my own experience but made it clear that it was very real at the same time.

    How has your invisible illness affected your relationships? *

    It has shown me who my real friends are and a major contributor in feeling that my husband was in fact "the one"

    Is there anything you are afraid to tell even the people closest to you? *

    I also have Bipolar disorder type 2 (more like rolling hills of emotions rather than manic sharp spikes). I dont talk about it because I use to be a "drama queen" and bipolar sounds really bad, even if they can kinda get what type 2 is in comparison to type 1. some say I'm just emotional. also I'm sure it contributes to my illnesses, and others may think I am faking it BECAUSE I use to be dramatic.

    Does the fact that your disease is invisible change how healthcare professionals treat you? *

    Of course, but not just because they are invisible but even blood tests and scans don't really show anything, so empirically I am "fine"

    What is your best coping mechanism? *

    Meditation and exercise when I can and generally having good people around me who understand

    What are you the most fearful of and hopeful for in the future? *

    I am scared of degeneration as I grow older, pregnancy and post-partum as well

    What is your favorite swear word?

    FUCK =)

    Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview? *

    My bipolar?

    Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

    wellacopia

    Any questions you think we should add to this list?

    I guess this is too late

    What is the hardest and/or best lesson your condition has taught you?

    your illness doesn't define you - or you can let it but only for the better

    ]]>
    Fibromyalgia and starting a tech business as a spoonie

    I bow down to this rockstar. Eva manages her chronic illness, fibromyalgia and has a tech startup to help us spoonies find the best medical care for our condition. It is called Wellacopia. Go visit now while you listen! I hope you adore her as much as I do. With Eva's unique perspective and knowledge of the sometimes scary world of medicine and diet, she will hopefully be playing a larger role in our chronic illness podcast!

    Copy of Chronic Illness & Getting Diagnosis
    Copy of Best Gift for Someone With Chronic Illness
    Copy of Starting a Tech Startup as a Spoonie
    Copy of Fibromyalgia and Starting a Business as A Spoonie Interview With Founder of Wellacopia

    Name *Eva Lana Owner of Wellacopia a health app for spoonies

    Age *27

    What is your disorder? *

    Fibromyalgia, hyper-mobility syndrome and undiagnosed GI issues

    At what age did your disorder become a daily issue? * 12

    Who were you before your illness became debilitating? *

    an adventurous person and professional dancer

    What would you do if you were not dealing with your invisible illness? *

    dance every day

    What would you like people to know about your daily life? *

    I run a startup for people like myself with chronic illnesses while I cope with them myself

    What would make living and moving in the world easier for you? *

    having the proper support for my specific needs...and better weather

    Do you have any life hacks? *

    positive mantras and a superb personal support system at home Tempurpedic Mattress

    What kind of support do you get from family or friends? *

    understanding that they don't understand but are willing to be there for me anyway

    Have you ever had someone not believe you have an invisible illness because of your appearance? *

    of course plus my diagnosis is the known crap-shoot of diagnoses especially because it cant be formally diagnosed

    Has this been a positive or negative experience? *

    negative but didnt impact me long term

    Would you care to relate the details of what happened when someone didn't believe you were disabled?

    I felt the need to explain further. sometimes it worked, sometimes it didnt but regardless I always had to explain that I'm aware of it being a "crap-shoot diagnosis". basically I belittled my own experience but made it clear that it was very real at the same time.

    How has your invisible illness affected your relationships? *

    It has shown me who my real friends are and a major contributor in feeling that my husband was in fact "the one"

    Is there anything you are afraid to tell even the people closest to you? *

    I also have Bipolar disorder type 2 (more like rolling hills of emotions rather than manic sharp spikes). I dont talk about it because I use to be a "drama queen" and bipolar sounds really bad, even if they can kinda get what type 2 is in comparison to type 1. some say I'm just emotional. also I'm sure it contributes to my illnesses, and others may think I am faking it BECAUSE I use to be dramatic.

    Does the fact that your disease is invisible change how healthcare professionals treat you? *

    Of course, but not just because they are invisible but even blood tests and scans don't really show anything, so empirically I am "fine"

    What is your best coping mechanism? *

    Meditation and exercise when I can and generally having good people around me who understand

    What are you the most fearful of and hopeful for in the future? *

    I am scared of degeneration as I grow older, pregnancy and post-partum as well

    What is your favorite swear word?

    FUCK =)

    Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview? *

    My bipolar?

    Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

    wellacopia

    Any questions you think we should add to this list?

    I guess this is too late

    What is the hardest and/or best lesson your condition has taught you?

    your illness doesn't define you - or you can let it but only for the better

    ]]>
    The Ins and Outs of Vasculitis, Rheumatoid Arthritis, Buergers Disease, and Wegners Granulomatosis This Week on our Chronic Illness Podcast The Ins and Outs of Vasculitis, Rheumatoid Arthritis, Buergers Disease, and Wegners Granulomatosis This Week on our Chronic Illness Podcast Mon, 13 Nov 2017 14:30:00 GMT 56:01 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59ec0eb22278e7aa8e85e35a no https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877e0
    What are you the most fearful of and what are you the most hopeful for in the future?: Most fearful of leaving this world at a young age as I am an only child and recently lost my father which means my mother would be all alone. My hope is that with my blood and tissue samples that have been taken help progress medical science and a better knowledge of one day finding a cure
    — Robbie
    Take a cantelope and try to squeeze it through a blood vessal in your eye.
    — Robbie
    It’s like your trapped inside a shell
    — Robbie

    This might be the longest title we have ever written for a podcast. Please tune in to some real-life hacks with chronic pain and chronic illness. Some things to know about when traveling with medications and chronic illness. Also, something to think about with the opioid epidemic and medical marijuana also some things that have really helped Robbie with pain management. This is really an amazing guy and we hope you enjoy listening to him as much as Kyros enjoyed meeting him.


    Links From The Podcast


    Vasculitis: When constriction makes your blood feel like a cantaloupe moving through your blood vessels.

     

    Vasculitis

    Buerger's Disease

    Wegener's granulomatosis

    Rheumatoid arthritis

    Neuropathy

    TSA rules on traveling with medication

    Medical Cannabis

    Magnet is now known as StrutSF

    Autoimmune Diseases

    Bacterial Meningitis

    Biodegradable burial pods

    Advanced directive

    Bridegroom movie

    Annie Leibovitz

    Frak

    Invisible Not Broken - Robbie Miller Questionnaire answers

     

    Name: Robbie Miller

    Age: 36

    Disorders: Buerger's Disease, Wegener's Granulomatosis, RA, Chronic Pain, Neuropathy, Vasculitis, Autoimmune

    Age disorder became a daily issue: 22

    Is there anything you would do if you were not sick? : Would have finished College Degree and be employed

    What should other people know about our daily life?: Each new day there are challenges some good some bad but its how you deal with them.

    What would make living and moving in the world easier for you?: Peoples Understanding that because you do not show any external ailment that some medical disorders are debilitating which limits some basic activities

    Life hacks?: Meditation, Acupuncture, Never meeting a stranger talking to individuals from all walks of life in person and online. 

    Support from family or friends?: Family Support, Support from friends and friends made online

    Do you find that people do not believe you are sick because of your appearance? : Yes

    How has this affected you positive or negative?: The positive effect is that I get to spend time with those I love more

    How has this affected your relationships?: Yes when originally diagnosed I lost individuals who I thought were friends and those that truly loved me.

    What are you afraid to tell even the people closest to you?: Basically, nothing, as I try to live my life as an open book, try to help others understand the variety of Auto-Immune Diseases

    Does the fact that your disease is invisible change how healthcare professionals treat you?: Yes

    Best coping mechanism?: Communication, therapy

    What are you the most fearful of and what are you the most hopeful for in the future?: Most fearful of leaving this world at a young age as I am an only child and recently lost my father which means my mother would be all alone. My hope is that with my blood and tissue samples that have been taken help progress medical science and a better knowledge of one day finding a cure

    Favorite swear word?: Frack

     


     

     

    ]]>
    What are you the most fearful of and what are you the most hopeful for in the future?: Most fearful of leaving this world at a young age as I am an only child and recently lost my father which means my mother would be all alone. My hope is that with my blood and tissue samples that have been taken help progress medical science and a better knowledge of one day finding a cure
    — Robbie
    Take a cantelope and try to squeeze it through a blood vessal in your eye.
    — Robbie
    It’s like your trapped inside a shell
    — Robbie

    This might be the longest title we have ever written for a podcast. Please tune in to some real-life hacks with chronic pain and chronic illness. Some things to know about when traveling with medications and chronic illness. Also, something to think about with the opioid epidemic and medical marijuana also some things that have really helped Robbie with pain management. This is really an amazing guy and we hope you enjoy listening to him as much as Kyros enjoyed meeting him.


    Links From The Podcast


    Vasculitis: When constriction makes your blood feel like a cantaloupe moving through your blood vessels.

     

    Vasculitis

    Buerger's Disease

    Wegener's granulomatosis

    Rheumatoid arthritis

    Neuropathy

    TSA rules on traveling with medication

    Medical Cannabis

    Magnet is now known as StrutSF

    Autoimmune Diseases

    Bacterial Meningitis

    Biodegradable burial pods

    Advanced directive

    Bridegroom movie

    Annie Leibovitz

    Frak

    Invisible Not Broken - Robbie Miller Questionnaire answers

     

    Name: Robbie Miller

    Age: 36

    Disorders: Buerger's Disease, Wegener's Granulomatosis, RA, Chronic Pain, Neuropathy, Vasculitis, Autoimmune

    Age disorder became a daily issue: 22

    Is there anything you would do if you were not sick? : Would have finished College Degree and be employed

    What should other people know about our daily life?: Each new day there are challenges some good some bad but its how you deal with them.

    What would make living and moving in the world easier for you?: Peoples Understanding that because you do not show any external ailment that some medical disorders are debilitating which limits some basic activities

    Life hacks?: Meditation, Acupuncture, Never meeting a stranger talking to individuals from all walks of life in person and online. 

    Support from family or friends?: Family Support, Support from friends and friends made online

    Do you find that people do not believe you are sick because of your appearance? : Yes

    How has this affected you positive or negative?: The positive effect is that I get to spend time with those I love more

    How has this affected your relationships?: Yes when originally diagnosed I lost individuals who I thought were friends and those that truly loved me.

    What are you afraid to tell even the people closest to you?: Basically, nothing, as I try to live my life as an open book, try to help others understand the variety of Auto-Immune Diseases

    Does the fact that your disease is invisible change how healthcare professionals treat you?: Yes

    Best coping mechanism?: Communication, therapy

    What are you the most fearful of and what are you the most hopeful for in the future?: Most fearful of leaving this world at a young age as I am an only child and recently lost my father which means my mother would be all alone. My hope is that with my blood and tissue samples that have been taken help progress medical science and a better knowledge of one day finding a cure

    Favorite swear word?: Frack

     


     

     

    ]]>
    Real Romance: Carbs and Insulin Diabetes and Colitis: Parenting With Chronic Illness: Invisible Illness Serial Podcast Real Romance: Carbs and Insulin Diabetes and Colitis: Parenting With Chronic Illness: Invisible Illness Serial Podcast Mon, 06 Nov 2017 14:30:00 GMT 1:06:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59efac3d51a5849ee957b202 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877e1
    The reminding part can be absolutely exhausting. When you feel like you’re talking to a brick wall (parenting with chronic illness)
    — Vanessa
    My Silly Billy, Squeaky Cheeky, Floppy Poppy Family By Vanessa Jean Locke

     

    Disorder Info

    Name *Vanessa Jean Locke

    Age * 44

    What is your disorder? *

    Diabetes Type 1, Ulcerative Colitis, Hypo Thyroid, Vitiligo and Sjogrens (eyes)

    At what age did your disorder become a daily issue? *

    11

    Who were you before your illness became debilitating? *

    I was a carefree kid who enjoyed lemonade for fun rather than a hypo treatment. I don’t remember a lot about being without chronic illness as part of my life.

    What would you do if you were not dealing with your invisible illness? *

    Such an interesting question. If I didn’t have to manage the daily implications of my conditions, pursuits such as university study, full-time employment or highly demanding career options (nursing, teaching) and even enjoying social outings would be feasible. I try to focus on what I can contribute though!

    What would you like people to know about your daily life? *

    I minimize my pain. You will only know that I’m not feeling well or in pain when I’ve endured many hours or days of painful symptoms. I may speak curtly but I don’t mean to push you away. I feel like despite my best efforts, my body betrays me. Feelings of frustration and despair can be daily. Solitude, quality sleep and resetting my mind will help me be the Vanessa you know again.

    What would make living and moving in the world easier for you? *

    Beyond a cure, affordability of the continuous glucose monitoring (CGM) system would help a lot. Currently, the system is subsidized to those aged 21 and under (in Australia) but at full cost, $300-400 per month is too high to be sustainable. The system is based on a wearable sensor that can give data about blood sugar trends. Used in conjunction with normal finger prick blood testing, there is potential for added peace of mind and tighter control of blood sugar measures.

    Do you have any life hacks? *

    When I’m exhausted but need to go out and not look as though I’ve escaped from a morgue, dry shampoo helps me look as though I've washed my hair and B.B. cream is a desert island product—dark circles, rashy and pale to kinda of looking ‘normal’ in 2 minutes. Drinking fruit juice (orange or apple are most reliable) will help a hypo discreetly and quickly without having to shove candy in my mouth. It sounds like fun but believe me, it’s not.

    What kind of support do you get from family or friends? *

    Every support, emotional and physical, I get from my husband. I call him my angel on Earth. From allowing me to rest while he looks after the house or kids to talking with me in my low times...just being there with no judgment. It’s priceless to me. Outside the immediate family in my house, my expectations are low. People know I ‘have conditions’ but it’s confusing for them. Unless I am visibly sick or they have a specific question, it’s not something often talked about.

    How has your invisible illness affected your relationships? *

    I’m fortunate to soon be celebrating my 19 year wedding anniversary to the most incredible man who defies logic in his acceptance of me. Our marriage has gone through many ups and downs but at the core is the most thrilling unconditional love. It’s this love that gets us through my times of illness & lethargy.

    Is there anything you are afraid to tell even the people closest to you? *

    Big question. I’m not sure I’m ready to answer.

    What is your best coping mechanism? *

    My mind.

    What are you the most fearful of and hopeful for in the future? *

    Fearful: further autoimmunities corrupting my body. I wonder if it will be an autoimmune condition that claims my life in the end...or will I pass from old age? Hopeful: further technology to stabilize Diabetes. I am hopeful and expectant that none of my disorders have been passed to my children.

    What is your favorite swear word?

    SHIT!!!

    Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

    My Instagram page and Facebook page

    Any questions you think we should add to this list?

    What’s the hardest/best lesson your condition has taught you?

    Monica's Note: We discussed chronic and clinical depression and if you have ever dealt with this you will know depression is very different from sad. If you are trying to understand clinical depression I would like to introduce you to one of my favorite webcomics Hyperbole and a Half by Allie Brosh In episode 1 and episode 2 she gave THE BEST explanations for what clinical depression feels like. We are a show that discusses medical issues we highly recommend visiting your doctor if you are experiencing symptoms.

    Marriage and diabetes: A chronic illness blog
    Insulin Pump T1D Blog Post: Invisible Illness Blog
    Love and Diabetes: Romance and Chronic Illness: Invisible Illness Blog
    Parenting Tips For Parents With Chronic Illness Podcast
    Marriage and Chronic Illness :Invisible Illness Podcast
    Saying goodby to your first insulin pump T1D: Chronic Illness Blog
    Romance and Invisible Illness: Invisible Illness Blog

     

     

    .

     

     

    ]]>
    The reminding part can be absolutely exhausting. When you feel like you’re talking to a brick wall (parenting with chronic illness)
    — Vanessa
    My Silly Billy, Squeaky Cheeky, Floppy Poppy Family By Vanessa Jean Locke

     

    Disorder Info

    Name *Vanessa Jean Locke

    Age * 44

    What is your disorder? *

    Diabetes Type 1, Ulcerative Colitis, Hypo Thyroid, Vitiligo and Sjogrens (eyes)

    At what age did your disorder become a daily issue? *

    11

    Who were you before your illness became debilitating? *

    I was a carefree kid who enjoyed lemonade for fun rather than a hypo treatment. I don’t remember a lot about being without chronic illness as part of my life.

    What would you do if you were not dealing with your invisible illness? *

    Such an interesting question. If I didn’t have to manage the daily implications of my conditions, pursuits such as university study, full-time employment or highly demanding career options (nursing, teaching) and even enjoying social outings would be feasible. I try to focus on what I can contribute though!

    What would you like people to know about your daily life? *

    I minimize my pain. You will only know that I’m not feeling well or in pain when I’ve endured many hours or days of painful symptoms. I may speak curtly but I don’t mean to push you away. I feel like despite my best efforts, my body betrays me. Feelings of frustration and despair can be daily. Solitude, quality sleep and resetting my mind will help me be the Vanessa you know again.

    What would make living and moving in the world easier for you? *

    Beyond a cure, affordability of the continuous glucose monitoring (CGM) system would help a lot. Currently, the system is subsidized to those aged 21 and under (in Australia) but at full cost, $300-400 per month is too high to be sustainable. The system is based on a wearable sensor that can give data about blood sugar trends. Used in conjunction with normal finger prick blood testing, there is potential for added peace of mind and tighter control of blood sugar measures.

    Do you have any life hacks? *

    When I’m exhausted but need to go out and not look as though I’ve escaped from a morgue, dry shampoo helps me look as though I've washed my hair and B.B. cream is a desert island product—dark circles, rashy and pale to kinda of looking ‘normal’ in 2 minutes. Drinking fruit juice (orange or apple are most reliable) will help a hypo discreetly and quickly without having to shove candy in my mouth. It sounds like fun but believe me, it’s not.

    What kind of support do you get from family or friends? *

    Every support, emotional and physical, I get from my husband. I call him my angel on Earth. From allowing me to rest while he looks after the house or kids to talking with me in my low times...just being there with no judgment. It’s priceless to me. Outside the immediate family in my house, my expectations are low. People know I ‘have conditions’ but it’s confusing for them. Unless I am visibly sick or they have a specific question, it’s not something often talked about.

    How has your invisible illness affected your relationships? *

    I’m fortunate to soon be celebrating my 19 year wedding anniversary to the most incredible man who defies logic in his acceptance of me. Our marriage has gone through many ups and downs but at the core is the most thrilling unconditional love. It’s this love that gets us through my times of illness & lethargy.

    Is there anything you are afraid to tell even the people closest to you? *

    Big question. I’m not sure I’m ready to answer.

    What is your best coping mechanism? *

    My mind.

    What are you the most fearful of and hopeful for in the future? *

    Fearful: further autoimmunities corrupting my body. I wonder if it will be an autoimmune condition that claims my life in the end...or will I pass from old age? Hopeful: further technology to stabilize Diabetes. I am hopeful and expectant that none of my disorders have been passed to my children.

    What is your favorite swear word?

    SHIT!!!

    Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

    My Instagram page and Facebook page

    Any questions you think we should add to this list?

    What’s the hardest/best lesson your condition has taught you?

    Monica's Note: We discussed chronic and clinical depression and if you have ever dealt with this you will know depression is very different from sad. If you are trying to understand clinical depression I would like to introduce you to one of my favorite webcomics Hyperbole and a Half by Allie Brosh In episode 1 and episode 2 she gave THE BEST explanations for what clinical depression feels like. We are a show that discusses medical issues we highly recommend visiting your doctor if you are experiencing symptoms.

    Marriage and diabetes: A chronic illness blog
    Insulin Pump T1D Blog Post: Invisible Illness Blog
    Love and Diabetes: Romance and Chronic Illness: Invisible Illness Blog
    Parenting Tips For Parents With Chronic Illness Podcast
    Marriage and Chronic Illness :Invisible Illness Podcast
    Saying goodby to your first insulin pump T1D: Chronic Illness Blog
    Romance and Invisible Illness: Invisible Illness Blog

     

     

    .

     

     

    ]]>
    EDS,MCA, POTS, Collect Them All: German Socialized Medicine, Medical Marijuana, UBER WE HAVE AN IDEA FOR YOU: Chronic Illness Serial Podcast EDS,MCA, POTS, Collect Them All: German Socialized Medicine, Medical Marijuana, UBER WE HAVE AN IDEA FOR YOU: Chronic Illness Serial Podcast Mon, 30 Oct 2017 13:30:00 GMT 1:01:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59f0d261edaed819b5b570d4 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877e2 EDS,MCA, POTS, Collect Them All: German Socialized Medicine, Medical Marijuana, UBER WE HAVE AN IDEA FOR YOU: Chronic Illness Serial Podcast
    Travel and Chronic Pain: Chronic Illness Podcast
    I had always defined myself by my achievements
    — Karina

    I have made choice of not doing just one or even two posts of a diagnosis (you might remember my interview). The reason is that each of us have a different experiance with our disorders and I want to show how wildly different stories can be even when they live under the same diagnosis. OK, off my soap box I have you really enjoy hear from Karina and hearing about her journey. You will learn so much from pain medication guilt, medical, marijuana, the niaviete before chronic illness, and I learned so much about socialized medicine in Germany and the differences with the ACA.


    What is your disorder? *

    Ehlers-Danlos Syndrome and comorbid conditions (spinal instabilities, mast cell activation, small fiber neuropathy, dysautonomia and others) - 15 diagnoses by now.

    At what age did your disorder become a daily issue? *

    24

    Who were you before your illness became debilitating? *

    I would say that I was really naive. I thought nothing could ever hurt me. In 2009, I just started my career as a lab technician, moved into my first apartment, and everything was just fine. I was self-confident and a perfectionist. Moreover, I had a 5-year-plan that included marrying, building a house, working for doctors without borders, adopting a child, and many more. Playing volleyball and other sports were my life - I was super competitive and ambitious, which I still am, but in a different way, and other areas.

    What would you do if you were not dealing with your invisible illness? *

    There is a lot I would do if I were not sick! For example, traveling around the world (parts of the world are just not accessible for me anymore), dancing, bungee jumping, weird sports I cannot do anymore, building up a lab in Africa, learning how to sail, hiking the pacific crest trail. Anyway, I would want to have the knowledge that I gained due to my illness with, because only now can I really appreciate all those things I had when I was healthy.

    What would you like people to know about your daily life? *

    …that I try very hard to be the best friend I can be. …that I feel horrible every time I have to say the words," I am sorry, I have to cancel." …that there is no such thing as a good day. There are better or worse days, but no more good ones. …that every day brings new challenges. …that even the smallest thing, such as taking a shower, can cause major symptoms. …that even though I might not be working a full-time job, I still am not sitting on my couch and stare holes into the wall. And if I do, it is not my choice, and absolutely not because I am lazy, but because it is the only way to get through the day. …that having a doctors appointment is pretty dramatic for me sometimes, because I made so many bad experiences, but still need my doctors. …that work that is not paid is still valuable and important. …that I do my best to achieve my goals, but the goals are sometimes maybe as simple as getting out of bed in the morning. …that I do not need any special treatment. I do not expect anything, and I do not set rules how I want to be treated. I do not feel offended by things like "I pray for you" or "Get better soon“. While I am not very religious, and most likely will not get better, I appreciate any good wish and thought.

    What would make living and moving in the world easier for you? *

    People that are more tolerant. Let me tell you a story. A couple of weeks ago, I went grocery shopping with my husband on a Sunday, like we always do. I cannot go by myself, because we do not own a car, so someone has to carry 30 pounds of groceries home. Going shopping is kind of a huge activity for me. By the time we finished, we had to take the metro home. It is only two stops, so I managed to stand during the whole time. I was wearing my neck brace, and that was the only obvious sign of my disability. A man standing next to me looked confused to me a couple of times until he said, "Hey, that must hurt, do you want me to ask someone here to get up?"  He was pointing at the disability seats that were already taken. I was super surprised because nobody ever asked me anything like this in San Francisco. Usually, if I sit on those seats reserved for people with disabilities, people tend to give me bad looks when I do not get up for an old lady. But this time someone else asked me if I needed to sit down. If all people were like this guy, my life would be a lot easier. I was moved to tears by his gesture.

    Do you have any life hacks? *

    What I love most is my Aspen neck brace and my memory foam seat cushion. I am not going anywhere without those two. The latter one literally saves my ass. Other than that, I am sleeping with a u-shaped pregnancy pillow that supports all my joints. I like shoes that go over my ankles, to give me additional support when walking. Pants that sit tight help with proprioception, and compression stockings work well for dysautonomia and stability too. I use other braces for almost all of my joints; and a backpack with support around my hips, so not all the weight is on my back.

    What kind of support do you get from family or friends? *

    Luckily, I only lost a couple of important people. The majority is still with me. Some friends could not really deal with the "new“ me, and one relationship did not survive my changes. Becoming a butterfly that grows out of a rope is a huge transition, and some loved ones could take it better than others. To be fair, I was not easy to handle - especially in the beginning (2010). I had no idea who I was anymore, so how could other people know? My family and friends support me physically, for example drive me to appointments since I cannot drive by myself; they pick me up if we want to have a coffee together; and they also support me mentally if I had a bad appointment or just a very shitty day.

    Would you care to relate the details of what happened when someone didn't believe you were disabled?

    That is pretty typical. People tend to judge quickly based on appearance. Not sure why, because every one of us knows how to smile even if we do not feel like smiling. It is not so hard to see below this surface of "I am ok," and to recognize how the person really feels. But that would take some effort, and many people just do not want to get to know the real "me". It affected me in a very negative way. Sometimes I would not go outside even though I had a better day, because I worried that I would meet people that could assume that I am healthy. I felt like I was proving them right if I left my house and enjoyed the day. At some point I understood that this was just stupid. People assume whatever they want, and they will judge you anyway. It is a waste of your good moments if you do not go out and live your life when you can.

    How has your invisible illness affected your relationships? *

    I do not think that the invisibility of my condition in particular affected my relationship. My husband is very supportive and my ex broke up with me because we both could not handle my disease during that time. I do not think that anyone close to me has a problem with the invisibility of my illnesses. They know exactly how I feel as soon as they look into my eyes. It is mainly people I do not know that act weird around me. But of course being chronically ill affects any relationship. There are always things to consider, even for the smallest activity, and there is always a problem.

    Is there anything you are afraid to tell even the people closest to you? *

    I am somehow afraid to tell them that I feel very alone sometimes. They would feel as if I just told them they did not try hard enough to be there for me, but that is not it. The problem is more that, even though everyone is there for me, some days just suck so much that I just feel completely alone on this planet. Also, I am scared like hell to be all alone at some point of my illness, because I really do not know how to survive without the physical support of my family and friends. Another thing I should not even think, and of course not say, is that I am jealous of some of their perfect lives. Of course, they deserve to be happy, and I hate myself for feeling this way occasionally. But sometimes it just hurts to see how my friends can have families and normal lives.

    What is your best coping mechanism? *

    Writing! Whether I only write for myself, for example in a diary, or in public, I write every minute I feel ok. It became my passion and my sense in life.

    What are you the most fearful of and hopeful for in the future? *

    Fearful: I fear the moment when my disease will get to a point where I am unable to advocate for myself. Because without this ability, rare disease patients are completely lost. Hopeful: I think the EDS community is doing a great job in raising awareness, and this will hopefully lead to a broader understanding of our condition, more diagnosed patients and then more doctors to treat us.

    What is your favorite swear word?

    Oh gosh, many. :) I love to swear. Not so much in English, since it is not my first language. My favorite English words: Holy Shit, Fuck it, Holy Fuck. German: Verfickte Scheiße. I am a horrible person.


    Learn More About Karina


    You could add links to my websites, but I actually do not like to talk too much about my "achievements".

    German/English Website and Facebook: Website: www.instabile-halswirbelsaeule.de Facebook: https://www.facebook.com/instabilehalswirbelsaeule German Blog http://www.holy-shit-i-am-sick.de Facebook: https://www.facebook.com/1000GeschichtenchronischkrankerMenschen

    My personal story in two books

    (German): My way to diagnosis:

    My life with EDS:

    ]]>

    Travel and Chronic Pain: Chronic Illness Podcast
    I had always defined myself by my achievements
    — Karina

    I have made choice of not doing just one or even two posts of a diagnosis (you might remember my interview). The reason is that each of us have a different experiance with our disorders and I want to show how wildly different stories can be even when they live under the same diagnosis. OK, off my soap box I have you really enjoy hear from Karina and hearing about her journey. You will learn so much from pain medication guilt, medical, marijuana, the niaviete before chronic illness, and I learned so much about socialized medicine in Germany and the differences with the ACA.


    What is your disorder? *

    Ehlers-Danlos Syndrome and comorbid conditions (spinal instabilities, mast cell activation, small fiber neuropathy, dysautonomia and others) - 15 diagnoses by now.

    At what age did your disorder become a daily issue? *

    24

    Who were you before your illness became debilitating? *

    I would say that I was really naive. I thought nothing could ever hurt me. In 2009, I just started my career as a lab technician, moved into my first apartment, and everything was just fine. I was self-confident and a perfectionist. Moreover, I had a 5-year-plan that included marrying, building a house, working for doctors without borders, adopting a child, and many more. Playing volleyball and other sports were my life - I was super competitive and ambitious, which I still am, but in a different way, and other areas.

    What would you do if you were not dealing with your invisible illness? *

    There is a lot I would do if I were not sick! For example, traveling around the world (parts of the world are just not accessible for me anymore), dancing, bungee jumping, weird sports I cannot do anymore, building up a lab in Africa, learning how to sail, hiking the pacific crest trail. Anyway, I would want to have the knowledge that I gained due to my illness with, because only now can I really appreciate all those things I had when I was healthy.

    What would you like people to know about your daily life? *

    …that I try very hard to be the best friend I can be. …that I feel horrible every time I have to say the words," I am sorry, I have to cancel." …that there is no such thing as a good day. There are better or worse days, but no more good ones. …that every day brings new challenges. …that even the smallest thing, such as taking a shower, can cause major symptoms. …that even though I might not be working a full-time job, I still am not sitting on my couch and stare holes into the wall. And if I do, it is not my choice, and absolutely not because I am lazy, but because it is the only way to get through the day. …that having a doctors appointment is pretty dramatic for me sometimes, because I made so many bad experiences, but still need my doctors. …that work that is not paid is still valuable and important. …that I do my best to achieve my goals, but the goals are sometimes maybe as simple as getting out of bed in the morning. …that I do not need any special treatment. I do not expect anything, and I do not set rules how I want to be treated. I do not feel offended by things like "I pray for you" or "Get better soon“. While I am not very religious, and most likely will not get better, I appreciate any good wish and thought.

    What would make living and moving in the world easier for you? *

    People that are more tolerant. Let me tell you a story. A couple of weeks ago, I went grocery shopping with my husband on a Sunday, like we always do. I cannot go by myself, because we do not own a car, so someone has to carry 30 pounds of groceries home. Going shopping is kind of a huge activity for me. By the time we finished, we had to take the metro home. It is only two stops, so I managed to stand during the whole time. I was wearing my neck brace, and that was the only obvious sign of my disability. A man standing next to me looked confused to me a couple of times until he said, "Hey, that must hurt, do you want me to ask someone here to get up?"  He was pointing at the disability seats that were already taken. I was super surprised because nobody ever asked me anything like this in San Francisco. Usually, if I sit on those seats reserved for people with disabilities, people tend to give me bad looks when I do not get up for an old lady. But this time someone else asked me if I needed to sit down. If all people were like this guy, my life would be a lot easier. I was moved to tears by his gesture.

    Do you have any life hacks? *

    What I love most is my Aspen neck brace and my memory foam seat cushion. I am not going anywhere without those two. The latter one literally saves my ass. Other than that, I am sleeping with a u-shaped pregnancy pillow that supports all my joints. I like shoes that go over my ankles, to give me additional support when walking. Pants that sit tight help with proprioception, and compression stockings work well for dysautonomia and stability too. I use other braces for almost all of my joints; and a backpack with support around my hips, so not all the weight is on my back.

    What kind of support do you get from family or friends? *

    Luckily, I only lost a couple of important people. The majority is still with me. Some friends could not really deal with the "new“ me, and one relationship did not survive my changes. Becoming a butterfly that grows out of a rope is a huge transition, and some loved ones could take it better than others. To be fair, I was not easy to handle - especially in the beginning (2010). I had no idea who I was anymore, so how could other people know? My family and friends support me physically, for example drive me to appointments since I cannot drive by myself; they pick me up if we want to have a coffee together; and they also support me mentally if I had a bad appointment or just a very shitty day.

    Would you care to relate the details of what happened when someone didn't believe you were disabled?

    That is pretty typical. People tend to judge quickly based on appearance. Not sure why, because every one of us knows how to smile even if we do not feel like smiling. It is not so hard to see below this surface of "I am ok," and to recognize how the person really feels. But that would take some effort, and many people just do not want to get to know the real "me". It affected me in a very negative way. Sometimes I would not go outside even though I had a better day, because I worried that I would meet people that could assume that I am healthy. I felt like I was proving them right if I left my house and enjoyed the day. At some point I understood that this was just stupid. People assume whatever they want, and they will judge you anyway. It is a waste of your good moments if you do not go out and live your life when you can.

    How has your invisible illness affected your relationships? *

    I do not think that the invisibility of my condition in particular affected my relationship. My husband is very supportive and my ex broke up with me because we both could not handle my disease during that time. I do not think that anyone close to me has a problem with the invisibility of my illnesses. They know exactly how I feel as soon as they look into my eyes. It is mainly people I do not know that act weird around me. But of course being chronically ill affects any relationship. There are always things to consider, even for the smallest activity, and there is always a problem.

    Is there anything you are afraid to tell even the people closest to you? *

    I am somehow afraid to tell them that I feel very alone sometimes. They would feel as if I just told them they did not try hard enough to be there for me, but that is not it. The problem is more that, even though everyone is there for me, some days just suck so much that I just feel completely alone on this planet. Also, I am scared like hell to be all alone at some point of my illness, because I really do not know how to survive without the physical support of my family and friends. Another thing I should not even think, and of course not say, is that I am jealous of some of their perfect lives. Of course, they deserve to be happy, and I hate myself for feeling this way occasionally. But sometimes it just hurts to see how my friends can have families and normal lives.

    What is your best coping mechanism? *

    Writing! Whether I only write for myself, for example in a diary, or in public, I write every minute I feel ok. It became my passion and my sense in life.

    What are you the most fearful of and hopeful for in the future? *

    Fearful: I fear the moment when my disease will get to a point where I am unable to advocate for myself. Because without this ability, rare disease patients are completely lost. Hopeful: I think the EDS community is doing a great job in raising awareness, and this will hopefully lead to a broader understanding of our condition, more diagnosed patients and then more doctors to treat us.

    What is your favorite swear word?

    Oh gosh, many. :) I love to swear. Not so much in English, since it is not my first language. My favorite English words: Holy Shit, Fuck it, Holy Fuck. German: Verfickte Scheiße. I am a horrible person.


    Learn More About Karina


    You could add links to my websites, but I actually do not like to talk too much about my "achievements".

    German/English Website and Facebook: Website: www.instabile-halswirbelsaeule.de Facebook: https://www.facebook.com/instabilehalswirbelsaeule German Blog http://www.holy-shit-i-am-sick.de Facebook: https://www.facebook.com/1000GeschichtenchronischkrankerMenschen

    My personal story in two books

    (German): My way to diagnosis:

    My life with EDS:

    ]]>
    Who Knew You Could Live Without Kidneys? {Chronic Illness Podcast} Who Knew You Could Live Without Kidneys? {Chronic Illness Podcast} Mon, 23 Oct 2017 13:30:00 GMT 1:02:30 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59e7e60db07869e5a2b576d8 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877e3 Who Knew You Could Live Without Kidneys? Not Us Until This Week!
    Denial? Or I’m just a tough jackass that won’t just die
    — Robert Fukushima Bad Ass With No Kidneys

    Hemodialysis 

    ACA 

    Fluids in foods 

    Hyperphosphatemia 

    Flavor Boosting Phosphates in food 

    Artificial Kidney  

    More about Artificial Kidneys

    Kidney transplant rejection

     



    Robert Fukushima

    Age: 56

    Gender: Male

    Disability: Kidney failure, avascular necrosis of the hip

    Age disorder became a daily issue: 24

    Is there anything you would do if you were not sick? Travel, eat more, drink more, return to work, garden

    What would make living and moving in the world easier for you? Kidney transplant would be the biggest thing

    Disability Lifehacks? My biggest thing is to remind myself that I am disabled even if I'm not feeling so. Things take longer, something's can't be the same

    Support from family or friends? I have exceptional family and friend support.

    Do you find that people do not believe you are sick because of your appearance? Yes

    How has this affected you positive or negative? I am one of those people who doesn't care, for the most part, what others think of me.

    What are you afraid to tell even the people closest to you? I'm actually a fairly open book, even when sober.

    Does the fact that your disease is invisible change how healthcare professionals treat you? No

    Best coping mechanism? Denial? Or I'm just a tough jackass that won't just die

    What are you the most fearful of and what are you the most hopeful for in the future? The effects of President Trump's effects on society (fear). My biggest hope is to get a kidney and I'll at least be close to feeling well.

    Favorite swear word? I'm not sure I do swear

    Permalink

    ]]>

    Denial? Or I’m just a tough jackass that won’t just die
    — Robert Fukushima Bad Ass With No Kidneys

    Hemodialysis 

    ACA 

    Fluids in foods 

    Hyperphosphatemia 

    Flavor Boosting Phosphates in food 

    Artificial Kidney  

    More about Artificial Kidneys

    Kidney transplant rejection

     



    Robert Fukushima

    Age: 56

    Gender: Male

    Disability: Kidney failure, avascular necrosis of the hip

    Age disorder became a daily issue: 24

    Is there anything you would do if you were not sick? Travel, eat more, drink more, return to work, garden

    What would make living and moving in the world easier for you? Kidney transplant would be the biggest thing

    Disability Lifehacks? My biggest thing is to remind myself that I am disabled even if I'm not feeling so. Things take longer, something's can't be the same

    Support from family or friends? I have exceptional family and friend support.

    Do you find that people do not believe you are sick because of your appearance? Yes

    How has this affected you positive or negative? I am one of those people who doesn't care, for the most part, what others think of me.

    What are you afraid to tell even the people closest to you? I'm actually a fairly open book, even when sober.

    Does the fact that your disease is invisible change how healthcare professionals treat you? No

    Best coping mechanism? Denial? Or I'm just a tough jackass that won't just die

    What are you the most fearful of and what are you the most hopeful for in the future? The effects of President Trump's effects on society (fear). My biggest hope is to get a kidney and I'll at least be close to feeling well.

    Favorite swear word? I'm not sure I do swear

    Permalink

    ]]> <![CDATA[Diabetes The Ultimate in Self Regulation : How To Really Screw Up A College Student's First Year: Chronic Illness is the Baby that Never Grows Up]]> Mon, 16 Oct 2017 13:30:00 GMT 1:03:30 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59e151e19f8dce63978377c3 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877e4
    Diabetes: How To Screw Up A College Freshman's First Few Weeks Of College: Invisible Illness Podcast
    Invisible Not Broken and Invisible Illness Podcast

    Diabetes Type 1

    Neuropathy

    Diabetes Association

    Insulin Pump

    Insulin

    Artificial Pancreas


    Thank you so much for joining us this week. Please share this episode with a friend you think would enjoy and don't forget to subscribe and leave kind words for us.

    Until next week...

    Be kind. Be gentle. Be a badass.


     

     

     

    ]]>

    Diabetes: How To Screw Up A College Freshman's First Few Weeks Of College: Invisible Illness Podcast
    Invisible Not Broken and Invisible Illness Podcast

    Diabetes Type 1

    Neuropathy

    Diabetes Association

    Insulin Pump

    Insulin

    Artificial Pancreas


    Thank you so much for joining us this week. Please share this episode with a friend you think would enjoy and don't forget to subscribe and leave kind words for us.

    Until next week...

    Be kind. Be gentle. Be a badass.


     

     

     

    ]]>
    Sex and Disability: Everything You Want To Know About Dating and Chronic Illness But Were Afraid To Ask Sex and Disability: Everything You Want To Know About Dating and Chronic Illness But Were Afraid To Ask Mon, 09 Oct 2017 13:30:00 GMT 59:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59d6d04a4c0dbfb69d63969f yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877e5 Sex and Disability: Everything You Want To Know About Dating and Chronic Illness You Wanted To Know But Were Afraid To Ask: Chronic Illness Podcast Please share our podcast and feel free to grab any of our images to use on your social media posts! Everything You Wanted To Know About Sex and Disability But Were Afraid To Ask : Chronic Illness Podcast
    A Sick Bear and AN Ehlers Danlos Vanilla Housewife Talk Chronic Pain and Sex in Our Chronic Illness Podcast
    Dating and Relationships When In Chronic Pain: Invisible Illness Podcast
    Sex and chronic pain invisible illness and dating
    A bear and a suburban housewife talk sex and relationships with chronic illness
    Sex, Relationships, & Dating With Chronic Pain
    Sex and Chronic Pain and Invisible Illness Podcast
    Dating and Chronic Ilness An Invisible Illness Podcast
    ]]>
    Please share our podcast and feel free to grab any of our images to use on your social media posts! Everything You Wanted To Know About Sex and Disability But Were Afraid To Ask : Chronic Illness Podcast
    A Sick Bear and AN Ehlers Danlos Vanilla Housewife Talk Chronic Pain and Sex in Our Chronic Illness Podcast
    Dating and Relationships When In Chronic Pain: Invisible Illness Podcast
    Sex and chronic pain invisible illness and dating
    A bear and a suburban housewife talk sex and relationships with chronic illness
    Sex, Relationships, & Dating With Chronic Pain
    Sex and Chronic Pain and Invisible Illness Podcast
    Dating and Chronic Ilness An Invisible Illness Podcast
    ]]>
    <![CDATA[When In Sickness & In Health Gets Real, Denial Isn't Just a River in Egypt, When Are We Getting Self Driving Cars Again?]]> Mon, 02 Oct 2017 13:00:00 GMT 55:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59c733ace5dd5b140a573562 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877e6
    Be like water always finding a path
    — Colleen White

    Thank you for listening this week, it's a special one for me. Colleen and her family have been dear friends and so supportive during my disability journey. You might be able to tell I adore her. Colleen is caring for her husband who has Stargardt's Disease

    Listen for the ways Colleen knows if she hasn't taken time for herself, How denial isn't always the worst thing when being chronically ill or being a caregiver, and so much more. 

    Please be sure to share the podcast with your community.

    Until Next Week

    Be kind. Be gentle. Be a badass.

    Links to things in the episode

    Self-driving cars                                     

    Foundation Fighting Blindness

    Microsoft Touchscreen Desktop

    Lyft

    Uber

    Tesla

    Outback (fits wheelchairs really well!)

    ]]>
    Be like water always finding a path
    — Colleen White

    Thank you for listening this week, it's a special one for me. Colleen and her family have been dear friends and so supportive during my disability journey. You might be able to tell I adore her. Colleen is caring for her husband who has Stargardt's Disease

    Listen for the ways Colleen knows if she hasn't taken time for herself, How denial isn't always the worst thing when being chronically ill or being a caregiver, and so much more. 

    Please be sure to share the podcast with your community.

    Until Next Week

    Be kind. Be gentle. Be a badass.

    Links to things in the episode

    Self-driving cars                                     

    Foundation Fighting Blindness

    Microsoft Touchscreen Desktop

    Lyft

    Uber

    Tesla

    Outback (fits wheelchairs really well!)

    ]]>
    Caregiving For An Adult Brother With Mental Illness Who Lives Across the Country Caregiving For An Adult Brother With Mental Illness Who Lives Across the Country Mon, 25 Sep 2017 13:30:00 GMT 56:50 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59c841b0017db213541f57b4 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877e7 Caregiving For A Brother With Depression and OCD Who Lives Across The Country
    It was all about me trying to project this image. To whom? No idea, myself I guess. Like anyone was looking.
    — Katie

    Don't forget to share Invisible Not Broken with a friend or a caregiver you know.

    Until next week 

    Be kind. Be gentle, Be a badass.


    Thank you for joining us for a very special interview with one of my favorite people. Katie has been a long time friend and my supplier in cute kittens. She is running multiple businesses while volunteering time to care for sick kittens and she is also caring for her brother who lives across the country. Please take a listen and learn about the upside of living in a small town, how Katie helped her brother gain some more independence, sometimes money needs to be thrown at an issue, how great telecommuting can be when you are a caregiver, and one of my favorite parts of our interview hearing how she found the blessings in the face of a massive oncoming storm. Katie is a true badass who has dedicated her entire being to caretaking take a minute and see her page Kitten 911.


    Katie's Caretaker Questionnaire


    Name * Katie Carney

    Age * 50

    What is your person's diagnosis? *

    mental illness - Depression & OCD

    When did it become a significant issue in your life? *

    Always, more after parents died

    What does a ‘normal’ day look like? *
    Work, lots of email & driving, think about issues revolving around caretaking brother

    What could ‘healthy’ world do to make your life easier? *

    Employers could recognize mental illness - and the need to care for someone suffering with it - the same as needing to care for someone physically ill

    How has this changed you? *
    Made me 'grow up' and make sure my own shit is together!

    How has this affected your relationships? *
    It definitely pulls focus... but friends, bosses & boyfriends have been (luckily) great

    Any life hacks?

    Preparation is key; NO guilt - order meals, pay for housecleaning, etc. for you AND/OR the caretake-ee!! You do NOT have to do it all, or all alone!!

    What do you wish someone would ask you? *
    Would you like a massage/foot rub/day off? How can I take care of YOU??

    What do you hope they won't ask? *
    What's his diagnosis? Has he always been like this? Will he ever get better?

    What frightens you? *

    Financial Ruin

    What or who would you be if you weren't taking care of someone? *

    I can't imagine NOT caretaking ... but most likely I would travel a LOT more. Life would be less structured.

    Favorite swear word?
    Fuck ton (as in 'That's a fuck ton of work.'). Alternately - asshat. Best insult ever!


    Links to services mentioned in the podcast

    Mom's Meals

    Blue Apron

    Kitten 911

    Girl Power Now Productions

    Compassion Fatigue

    Katie's Pet Sitting Business Ray of Sunshine Pet Care

    Kitten 911 Future Pet Reality Show

    ]]>
    It was all about me trying to project this image. To whom? No idea, myself I guess. Like anyone was looking.
    — Katie

    Don't forget to share Invisible Not Broken with a friend or a caregiver you know.

    Until next week 

    Be kind. Be gentle, Be a badass.


    Thank you for joining us for a very special interview with one of my favorite people. Katie has been a long time friend and my supplier in cute kittens. She is running multiple businesses while volunteering time to care for sick kittens and she is also caring for her brother who lives across the country. Please take a listen and learn about the upside of living in a small town, how Katie helped her brother gain some more independence, sometimes money needs to be thrown at an issue, how great telecommuting can be when you are a caregiver, and one of my favorite parts of our interview hearing how she found the blessings in the face of a massive oncoming storm. Katie is a true badass who has dedicated her entire being to caretaking take a minute and see her page Kitten 911.


    Katie's Caretaker Questionnaire


    Name * Katie Carney

    Age * 50

    What is your person's diagnosis? *

    mental illness - Depression & OCD

    When did it become a significant issue in your life? *

    Always, more after parents died

    What does a ‘normal’ day look like? *
    Work, lots of email & driving, think about issues revolving around caretaking brother

    What could ‘healthy’ world do to make your life easier? *

    Employers could recognize mental illness - and the need to care for someone suffering with it - the same as needing to care for someone physically ill

    How has this changed you? *
    Made me 'grow up' and make sure my own shit is together!

    How has this affected your relationships? *
    It definitely pulls focus... but friends, bosses & boyfriends have been (luckily) great

    Any life hacks?

    Preparation is key; NO guilt - order meals, pay for housecleaning, etc. for you AND/OR the caretake-ee!! You do NOT have to do it all, or all alone!!

    What do you wish someone would ask you? *
    Would you like a massage/foot rub/day off? How can I take care of YOU??

    What do you hope they won't ask? *
    What's his diagnosis? Has he always been like this? Will he ever get better?

    What frightens you? *

    Financial Ruin

    What or who would you be if you weren't taking care of someone? *

    I can't imagine NOT caretaking ... but most likely I would travel a LOT more. Life would be less structured.

    Favorite swear word?
    Fuck ton (as in 'That's a fuck ton of work.'). Alternately - asshat. Best insult ever!


    Links to services mentioned in the podcast

    Mom's Meals

    Blue Apron

    Kitten 911

    Girl Power Now Productions

    Compassion Fatigue

    Katie's Pet Sitting Business Ray of Sunshine Pet Care

    Kitten 911 Future Pet Reality Show

    ]]>
    <![CDATA[Ehlers Danlos, Fibromyalgia, POTS, & MCA Collect Them All {Invisible Illness Podcast}]]> Mon, 18 Sep 2017 14:30:00 GMT 41:16 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:597929bbe6f2e12643280501 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877e8
    What you do is not who you are.
    — Monica MIchelle

    Invisible Illness: Which one do I qualify as sick? Also, a little window into my daily world

    Invisible Illness: Do I look sick enough?
    Invisible Illness: Do I look sick enough?
    Invisible Illness: Am I sick now?
    Pug and Son
    Supergirl Fawn Pug Puppy
    Sleeping Shepard Puppy

    Every time I rattle off my disorders I almost have to count them off on my fingers. Did I forget one? Would it even matter when they all fall under the umbrella of ok no you're not crazy, no cure, and wow that's really a thing? I will leave links at the bottom if you would like to know more about the wonderfully creative ways my body attempts to make itself into modern sculpture.

    This is my interview. It is candid and though I am writing this before recording I am guessing littered with swear words. If I have to live like this, be inspiring, be funny, and do all of the other things I need to I get to lean on my favorite four letter word. If this is offensive to you please know that being in constant pain every day is offensive to me.


    If You Want To Know More About My Disorders


    Ehlers Danlos

    POTS

     Mast Cell Activation

    Fibromyalgia

    NOT one of my diagnosis but mentioned Chiari Malformation


    Thank you so much for listening. Please share with a friend and don't forget to leave a kind if not glowing review on ITunes.

    Until next time

    Be Kind. Be Gentle. Be a Bad Ass.


    My Questionairre 


    Monica Michelle

    I became symptomatic at 8 and have gone through different levels of disability and surgeries from my teens to going on disability in my late 30’s.

    1. Who were you before your illness became debilitating?

    I think I am lucky. I have been in chronic pain my entire life so I was never completely someone else. I don’t have a memory of being healthy or not in pain. I was a ballerina, a teacher, a jeweler, and a photography studio owner. I am and always will be a storyteller and an artist. I do miss being a photographer. I miss being a part of the community of women in business in the silicon valley. I desperately miss traveling. I miss bike rides. I miss being able to plan. I very much miss hiking and bike riding. I miss walking around Pescadero with my kids. I miss being able to take myself to Drs. Appointments or taking the dogs out. That was the person I used to be before this disorder became impossible to hide.

     

    2. Is there anything you would do if you were not sick?

    This is a hard one. I would still be a photographer. I would still be living across the Bay. I don’t know if either of those things would be good for me. If I wasn’t sick I would ride my bike again. I would travel. I would have liked to have become an art teacher for High School. I have binders full of business plans for non-profits I would have loved to have the energy to run.

     

    3. What should other people know about our daily life?

    It changes minute to minute. My heart rate can plummet or race. I can be walking normally and in the next step my hip can dislocate and I won’t be able to walk for a long time. I search for words. I am smarter than I can articulate. Moving in healthy world is X Games for me. In my wheelchair I get dumped on the ground thanks to roots, people stopping suddenly in front of me, and poor city planning with ramps that are only for the truly adventuress.

     

    4. What would make living and moving in the world easier for you?

    If BART would make sure their elevators worked and were clean (whatever is on the ground will end up on my hands). If you see someone in a wheelchair and you are crossing the street don’t cross right in the middle of the ramp. That is where it is flattest. That’s the part I need. If I am struggling please come by, say hello, offer to help. I know this isn’t an everyone thing but it is a me thing. I have trouble balancing everything with my canes or opening doors with my wheelchair.

     

    5. Life hacks?

    My IPadPro is my world. It is my extra brain. With the pencil, I have an unending source of paper to write my ideas down. I use fiverr for technical things I don’t know how to do. I use TaskRabbit for physical things. My sticks are my favorite way to get around. Mine have been discontinued but these look pretty good. Send me a review if you like them.

     

    6. Support from family or friends?

    I am beyond privileged and lucky in this department. My mother has helped me with everything. I would like to underline everything. I get worse as the day goes on and she picks up my children from school most days. She takes me to my doctor's appointments. My husband does most housework and cooking. My children have really stepped up helping with chores. I made a shelf on the refrigerator that has microwave meals on it that the kids can get to. I am trying to get better at asking friends to come over.

     

    7. Do you find that people do not believe you are sick because of your appearance?

    I am lucky. I use canes and wheelchair when I am doing badly and it is hard to ignore a bone sticking out of my wrist or the shoulder pushed forward so I don’t often have these moments. I have had a woman rush up and glare at me pointing to the handicap sign and back at me while I was waiting for my daughter to bring my canes. She had the good grace to just walk away.

     

    8. How has this affected your relationships?

    I lost a lot of friendships when I stopped working. I think I scared people who were my age running businesses in the Silicon Valley. No one expects you to retire at 38. I was fortunate that my husband was my best friend for 3 years before we got married so he had already seen a picture of what for better or worse would be. I had people I had been in relationships leave because I was sick so it was probably the only way I would have ever gotten married again was knowing that he had already seen some of the worst and was still all in.

     

    9. What are you afraid to tell even the people closest to you?

    I’m lonely. I’m fucking terrified each time things get bad that this will be the new normal. That I can get so depressed I feel like I'm drowning. I’m scared I am scaring my children. I HATE disappointing people or my animals. It takes almost nothing to push me into guilt or into doing something I really shouldn’t be just because I don’t want to inconvenience them. I will agree with you or change the subject if an argument goes beyond my ability to pay attention or to keep standing or sitting.

     

    10. Does the fact that your disease is invisible change how healthcare professionals treat you?

    Yes, I spent most of my teens being told I was crazy. I was told I was nervous. That I was depressed and overreacting. If a doctor can’t pin something on a disease they will usually pin the fault on the patient.

     

    11. Best coping mechanism?

    My dogs. My cats when they aren’t evil or when they are. Drawing, when I can. Reading when the book is great. The rare days I can bike ride are magic. Scrolling on Pinterest needs to be reclassified as transcendental meditation. Talking with my son. Curling up with my daughter. Laying next to my husband watching our next ok just one more episode show.

     

    12. Favorite swear word?

    FUCK. It is versatile and no word feels the same level of expression and relief when shouted.

     

    13. What are you the most fearful of and what are you the most hopeful for in the future?

    I am fucking terrified I won’t travel out of the country. I am terrified I won’t make my own money again.That my children will blame or resent me. That life will pass me by while I sit in bed waiting for a bone to come home or for my heart to stop its' jazz improv. I am scared I will get worse. That I will have to give more ground.

    Hopeful isn’t much in my wheelhouse tonight. I wish it was. I wish I could say something fabulous and witty that would soften all the dark I wrote but when I began this podcast I decided on complete honesty. I am feeling sad and dark right now. Maybe if I wrote this last week or even tomorrow I would have a bright answer for this but I am writing this now and now I am not feeling it.


    Links To Some Of My Favorite Things


    Quickie Wheelchair              Dyson V7                 Midnight Texas     

    Marijuana  Topical               Apple Watch            Dr. Who                  

    Single Payer                            Fitbit                         Supergirl

    Hearst Castle                        Go Beyond Physical Therapy

    Trigger Point Release         Task Rabbit               Slow Cooker   

    Muldowney Method           5 Calls App              Pinterest

    Resistbot (texting as poltical actavism)                  HelloMD


    Shameless Plug For My New Bedtime Story Book!


    Snuggle Bunny: A Bedtime Story $12.50 By Monica Michelle ]]>
    What you do is not who you are.
    — Monica MIchelle

    Invisible Illness: Which one do I qualify as sick? Also, a little window into my daily world

    Invisible Illness: Do I look sick enough?
    Invisible Illness: Do I look sick enough?
    Invisible Illness: Am I sick now?
    Pug and Son
    Supergirl Fawn Pug Puppy
    Sleeping Shepard Puppy

    Every time I rattle off my disorders I almost have to count them off on my fingers. Did I forget one? Would it even matter when they all fall under the umbrella of ok no you're not crazy, no cure, and wow that's really a thing? I will leave links at the bottom if you would like to know more about the wonderfully creative ways my body attempts to make itself into modern sculpture.

    This is my interview. It is candid and though I am writing this before recording I am guessing littered with swear words. If I have to live like this, be inspiring, be funny, and do all of the other things I need to I get to lean on my favorite four letter word. If this is offensive to you please know that being in constant pain every day is offensive to me.


    If You Want To Know More About My Disorders


    Ehlers Danlos

    POTS

     Mast Cell Activation

    Fibromyalgia

    NOT one of my diagnosis but mentioned Chiari Malformation


    Thank you so much for listening. Please share with a friend and don't forget to leave a kind if not glowing review on ITunes.

    Until next time

    Be Kind. Be Gentle. Be a Bad Ass.


    My Questionairre 


    Monica Michelle

    I became symptomatic at 8 and have gone through different levels of disability and surgeries from my teens to going on disability in my late 30’s.

    1. Who were you before your illness became debilitating?

    I think I am lucky. I have been in chronic pain my entire life so I was never completely someone else. I don’t have a memory of being healthy or not in pain. I was a ballerina, a teacher, a jeweler, and a photography studio owner. I am and always will be a storyteller and an artist. I do miss being a photographer. I miss being a part of the community of women in business in the silicon valley. I desperately miss traveling. I miss bike rides. I miss being able to plan. I very much miss hiking and bike riding. I miss walking around Pescadero with my kids. I miss being able to take myself to Drs. Appointments or taking the dogs out. That was the person I used to be before this disorder became impossible to hide.

     

    2. Is there anything you would do if you were not sick?

    This is a hard one. I would still be a photographer. I would still be living across the Bay. I don’t know if either of those things would be good for me. If I wasn’t sick I would ride my bike again. I would travel. I would have liked to have become an art teacher for High School. I have binders full of business plans for non-profits I would have loved to have the energy to run.

     

    3. What should other people know about our daily life?

    It changes minute to minute. My heart rate can plummet or race. I can be walking normally and in the next step my hip can dislocate and I won’t be able to walk for a long time. I search for words. I am smarter than I can articulate. Moving in healthy world is X Games for me. In my wheelchair I get dumped on the ground thanks to roots, people stopping suddenly in front of me, and poor city planning with ramps that are only for the truly adventuress.

     

    4. What would make living and moving in the world easier for you?

    If BART would make sure their elevators worked and were clean (whatever is on the ground will end up on my hands). If you see someone in a wheelchair and you are crossing the street don’t cross right in the middle of the ramp. That is where it is flattest. That’s the part I need. If I am struggling please come by, say hello, offer to help. I know this isn’t an everyone thing but it is a me thing. I have trouble balancing everything with my canes or opening doors with my wheelchair.

     

    5. Life hacks?

    My IPadPro is my world. It is my extra brain. With the pencil, I have an unending source of paper to write my ideas down. I use fiverr for technical things I don’t know how to do. I use TaskRabbit for physical things. My sticks are my favorite way to get around. Mine have been discontinued but these look pretty good. Send me a review if you like them.

     

    6. Support from family or friends?

    I am beyond privileged and lucky in this department. My mother has helped me with everything. I would like to underline everything. I get worse as the day goes on and she picks up my children from school most days. She takes me to my doctor's appointments. My husband does most housework and cooking. My children have really stepped up helping with chores. I made a shelf on the refrigerator that has microwave meals on it that the kids can get to. I am trying to get better at asking friends to come over.

     

    7. Do you find that people do not believe you are sick because of your appearance?

    I am lucky. I use canes and wheelchair when I am doing badly and it is hard to ignore a bone sticking out of my wrist or the shoulder pushed forward so I don’t often have these moments. I have had a woman rush up and glare at me pointing to the handicap sign and back at me while I was waiting for my daughter to bring my canes. She had the good grace to just walk away.

     

    8. How has this affected your relationships?

    I lost a lot of friendships when I stopped working. I think I scared people who were my age running businesses in the Silicon Valley. No one expects you to retire at 38. I was fortunate that my husband was my best friend for 3 years before we got married so he had already seen a picture of what for better or worse would be. I had people I had been in relationships leave because I was sick so it was probably the only way I would have ever gotten married again was knowing that he had already seen some of the worst and was still all in.

     

    9. What are you afraid to tell even the people closest to you?

    I’m lonely. I’m fucking terrified each time things get bad that this will be the new normal. That I can get so depressed I feel like I'm drowning. I’m scared I am scaring my children. I HATE disappointing people or my animals. It takes almost nothing to push me into guilt or into doing something I really shouldn’t be just because I don’t want to inconvenience them. I will agree with you or change the subject if an argument goes beyond my ability to pay attention or to keep standing or sitting.

     

    10. Does the fact that your disease is invisible change how healthcare professionals treat you?

    Yes, I spent most of my teens being told I was crazy. I was told I was nervous. That I was depressed and overreacting. If a doctor can’t pin something on a disease they will usually pin the fault on the patient.

     

    11. Best coping mechanism?

    My dogs. My cats when they aren’t evil or when they are. Drawing, when I can. Reading when the book is great. The rare days I can bike ride are magic. Scrolling on Pinterest needs to be reclassified as transcendental meditation. Talking with my son. Curling up with my daughter. Laying next to my husband watching our next ok just one more episode show.

     

    12. Favorite swear word?

    FUCK. It is versatile and no word feels the same level of expression and relief when shouted.

     

    13. What are you the most fearful of and what are you the most hopeful for in the future?

    I am fucking terrified I won’t travel out of the country. I am terrified I won’t make my own money again.That my children will blame or resent me. That life will pass me by while I sit in bed waiting for a bone to come home or for my heart to stop its' jazz improv. I am scared I will get worse. That I will have to give more ground.

    Hopeful isn’t much in my wheelhouse tonight. I wish it was. I wish I could say something fabulous and witty that would soften all the dark I wrote but when I began this podcast I decided on complete honesty. I am feeling sad and dark right now. Maybe if I wrote this last week or even tomorrow I would have a bright answer for this but I am writing this now and now I am not feeling it.


    Links To Some Of My Favorite Things


    Quickie Wheelchair              Dyson V7                 Midnight Texas     

    Marijuana  Topical               Apple Watch            Dr. Who                  

    Single Payer                            Fitbit                         Supergirl

    Hearst Castle                        Go Beyond Physical Therapy

    Trigger Point Release         Task Rabbit               Slow Cooker   

    Muldowney Method           5 Calls App              Pinterest

    Resistbot (texting as poltical actavism)                  HelloMD


    Shameless Plug For My New Bedtime Story Book!


    Snuggle Bunny: A Bedtime Story $12.50 By Monica Michelle ]]>
    Invisible Illness and the Adventure of Getting a Diagnosis {Diagnosis: precious, my precious} Invisible Illness and the Adventure of Getting a Diagnosis {Diagnosis: precious, my precious} Mon, 11 Sep 2017 10:00:00 GMT 30:30 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:59b2f2a0d2b85729bba6d3b8 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877e9 Exciting Adventure of Getting An Invisible Illness Diagnosis

    Your Hosts


     Kyros Starr

    Kyros Starr

     Monica Michelle

    Monica Michelle

    Welcome to the first-panel discussion for Invisible Not Broken. My co-host Kyros and I are going to be talking about the most elusive and mythic beast in Invisible Illness world: getting the diagnosis.

    For many getting sick is a simple visit to a doctor. They figure out what is wrong and prescribe a treatment plan.

    When you have something rare and invisible (with added issues of such things as weight, socioeconomic status, female, or age) many times a doctor has never heard of your illness or had only heard about it in passing in medical school. There can be issues of not knowing how to properly administer tests (fibromyalgia test is pressure points and many doctors still think that Ehlers Danlos can only be diagnosed if someone has super stretchy skin). Kyros had to perform most of his own diagnostic tests at home for his food allergies.

    I hope you enjoy this episode. It was an emotional one to record as my diagnosis took over 20 costly years to obtain and I know Kyros went through many pitfalls to get to his.

    We will see you next week to talk to me. Yes, I realised I had been so excited about everyone's interviews I forgot to post mine! Tune in to hear me on the other side of the interviewing process talking about ligaments that are more used post-its than gorilla glue, the joy of dislocations from getting out of a chair, a heart that beats to its' own rhythms and whims, and the wide spread joy that is fibromyalgia.

    Please share us with a friend and don't forget to subscribe and leave very nice words for us on Itunes.

    Until next week

    Be kind. Be gentle. Be a badass.


    ]]>

    Your Hosts


     Kyros Starr

    Kyros Starr

     Monica Michelle

    Monica Michelle

    Welcome to the first-panel discussion for Invisible Not Broken. My co-host Kyros and I are going to be talking about the most elusive and mythic beast in Invisible Illness world: getting the diagnosis.

    For many getting sick is a simple visit to a doctor. They figure out what is wrong and prescribe a treatment plan.

    When you have something rare and invisible (with added issues of such things as weight, socioeconomic status, female, or age) many times a doctor has never heard of your illness or had only heard about it in passing in medical school. There can be issues of not knowing how to properly administer tests (fibromyalgia test is pressure points and many doctors still think that Ehlers Danlos can only be diagnosed if someone has super stretchy skin). Kyros had to perform most of his own diagnostic tests at home for his food allergies.

    I hope you enjoy this episode. It was an emotional one to record as my diagnosis took over 20 costly years to obtain and I know Kyros went through many pitfalls to get to his.

    We will see you next week to talk to me. Yes, I realised I had been so excited about everyone's interviews I forgot to post mine! Tune in to hear me on the other side of the interviewing process talking about ligaments that are more used post-its than gorilla glue, the joy of dislocations from getting out of a chair, a heart that beats to its' own rhythms and whims, and the wide spread joy that is fibromyalgia.

    Please share us with a friend and don't forget to subscribe and leave very nice words for us on Itunes.

    Until next week

    Be kind. Be gentle. Be a badass.


    ]]>
    <![CDATA[A Bear, A Zombie Leg, Food Allergy, Morton's Neuroma, and Living the Spoonie Life]]> Mon, 04 Sep 2017 10:10:00 GMT 1:00:00 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5985e0477131a5259cc128c5 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877ea

    Meet my new co-host Kyros. He was one of the first friends I made when we moved. He and his husbands are the most loving and kind men you could ever hope to call friends. If you ever see Kyros you would know why he would be someone you would think to ask for help moving furniture before you would think to offer him a seat. After talking with Kyros about his food allergy which I had no idea how seriously and how long it could affect him and about his trouble with walking I will be doing things differently when he comes over. I will NOT make dry meringues. Here is a shameless plug for Kyros and his co author Orion Hunter's book. I hope you enjoy your time with my friend. Until next week Be kind. Be gentle. Be a badass. 


    Links From The Podcast


    Morton's neuroma

    Arthritis

    Dairy Allergy

    Spoon Theory

    Elimination Diet

    Uber

    Lyft

    Task Rabbit


    Kyros Invisible Illness Questionnaire
     

    Name: Kyros Starr

    Age: 48

    Disorder: Arthritis, Morton’s Neuroma, Dairy Allergy, Peripheral Neuropathy

    Age disorder became a daily issue: A: 45, MN: 33, DA: 40, PN: 47

     

    Who were you before your illness became debilitating?

    I loved taking the dogs to the park, riding my bike everywhere. I worked 10 hours a day as a cable technician on my feet the whole time.

     

    Is there anything you would do if you were not sick?

    Ride my bike more, walk to the grocery store (It’s only 5 blocks away)

     

    What should other people know about our daily life?

    I’m in near-constant pain. A good day is about a 2/10, an average day is about 5/10. A bad day is 9/10.

     

    What would make living and moving in the world easier for you?

    Even sidewalks/pavement. Uneven ground makes my feet hurt more. Also, something other than concrete everywhere. Standing / walking on concrete is the worst. I can walk on grass / softer surfaces (even though they are uneven) for hours but I can only stand on concrete for about half an hour before I am in ever-increasing pain.

     

    Life hacks?

    Walk stools are your friend. You can wear it like a backpack then sling it off and have someplace to sit in a just two minutes. https://www.amazon.com/gp/product/B0015A8DVM/

     

    Support from family or friends?

    My partners are great, but they don’t always understand why I say I can’t do something. “You did it just fine yesterday,” is a common phrase. They finally started understanding better when I explained the concept of “spoons” to them. https://en.wikipedia.org/wiki/Spoon_theory

     

    Do you find that people do not believe you are sick because of your appearance?  

    All the time. Especially the Dairy Allergy part. I have people tell me all the time that “Oh, I’m lactose-intolerant too. But I go ahead and have ice cream whenever I want. I just deal with the consequences.” I’m usually like, “If I did that, I would be running to the bathroom with explosive diarrhea in about 30 minutes and would have exceedingly painful stomach cramps and gas for the next 3-4 days.”

     

    How has this affected you positive or negative?

    It’s caused me no amount of trouble when I eat out. I have waiters/cooks who don’t take me seriously or treat it like I’m just making it up. I once ordered a hamburger and they brought me a cheeseburger. I told them I couldn’t eat it. The waiter initially argued that I got the cheese for free because they only charged me for a hamburger. I reiterated that I couldn’t eat it. The waiter took it back and came back a few minutes later with the same burger with the cheese scraped off. I told them that if I ate that, I would still get sick. The waiter and the cook were both pissed at me, even though I told them upfront that I had a dairy allergy.

     

    How has this affected your relationships?

    My previous relationship refused to believe that I had anything wrong. I should just “tough” it out because everyone has things that hurt.

     

    Any questions to add to this list?

    Why do you think people don’t believe you when you say you have a disability?

    What is the single greatest challenge you face on a daily basis?

    How do you tell people that you have an invisible disability? Do you tell people?

    Animals in the wild try to hide their disabilities because they will be preyed upon by other animals. Do you think that, on some level, that is why people with invisible disabilities try to hide their problems even from loved ones?

     

    What are you afraid to tell even the people closest to you?

    That I usually burn through my daily allotment of spoons right before or during cooking dinner, but I feel I have to push through anyway because the family is depending on me to take care of things. The fact that I usually end up cleaning up dinner and doing other things around the house afterward means I am frequently beyond exhausted by the time I go to bed.
     

    Does the fact that your disease is invisible change how healthcare professionals treat you?

    Definitely. I have had to do my own research into what’s wrong with me on more than one instance. It was only because I pushed that I got the test/treatment I needed. For example, I found out about and performed the elimination diet to find out what was making me sick (dairy), not my doctor.

     

    Best coping mechanism?

    I do the shopping. That way I can ensure that I read the labels and not accidentally get something that contains hidden dairy. As far as my feet and arthritis problems, I’m lucky enough that we can afford for me to get weekly massages that help with the pain.

     

    Favorite swear word?

    Fuck! Or Motherfucker.

     

    What are you the most fearful of and what are you the most hopeful for in the future?

    I’m fearful that my condition will continue to deteriorate to the point where I cannot walk at all without assistance. This would make life very difficult as my house has lots of stairs and I would not be able to take care of my family like I do now. I also would no longer feel like I was contributing to my family.

     

    I’m hopeful that, with advances in medicine, something can be done about my various problems so that I can go back to having an active life where I don’t have to think about ‘how far can I realistically go / walk’ or that I can go out to eat without having a near panic attack worrying that there will be hidden dairy in my food that will make the next several days hell.

     

    Support Kyros

    Dreaming of Xeres (The Third War Book 1) By Orion T. Hunter, Kyros Amphiptere

    Follow Us



    ]]>

    Meet my new co-host Kyros. He was one of the first friends I made when we moved. He and his husbands are the most loving and kind men you could ever hope to call friends. If you ever see Kyros you would know why he would be someone you would think to ask for help moving furniture before you would think to offer him a seat. After talking with Kyros about his food allergy which I had no idea how seriously and how long it could affect him and about his trouble with walking I will be doing things differently when he comes over. I will NOT make dry meringues. Here is a shameless plug for Kyros and his co author Orion Hunter's book. I hope you enjoy your time with my friend. Until next week Be kind. Be gentle. Be a badass. 


    Links From The Podcast


    Morton's neuroma

    Arthritis

    Dairy Allergy

    Spoon Theory

    Elimination Diet

    Uber

    Lyft

    Task Rabbit


    Kyros Invisible Illness Questionnaire
     

    Name: Kyros Starr

    Age: 48

    Disorder: Arthritis, Morton’s Neuroma, Dairy Allergy, Peripheral Neuropathy

    Age disorder became a daily issue: A: 45, MN: 33, DA: 40, PN: 47

     

    Who were you before your illness became debilitating?

    I loved taking the dogs to the park, riding my bike everywhere. I worked 10 hours a day as a cable technician on my feet the whole time.

     

    Is there anything you would do if you were not sick?

    Ride my bike more, walk to the grocery store (It’s only 5 blocks away)

     

    What should other people know about our daily life?

    I’m in near-constant pain. A good day is about a 2/10, an average day is about 5/10. A bad day is 9/10.

     

    What would make living and moving in the world easier for you?

    Even sidewalks/pavement. Uneven ground makes my feet hurt more. Also, something other than concrete everywhere. Standing / walking on concrete is the worst. I can walk on grass / softer surfaces (even though they are uneven) for hours but I can only stand on concrete for about half an hour before I am in ever-increasing pain.

     

    Life hacks?

    Walk stools are your friend. You can wear it like a backpack then sling it off and have someplace to sit in a just two minutes. https://www.amazon.com/gp/product/B0015A8DVM/

     

    Support from family or friends?

    My partners are great, but they don’t always understand why I say I can’t do something. “You did it just fine yesterday,” is a common phrase. They finally started understanding better when I explained the concept of “spoons” to them. https://en.wikipedia.org/wiki/Spoon_theory

     

    Do you find that people do not believe you are sick because of your appearance?  

    All the time. Especially the Dairy Allergy part. I have people tell me all the time that “Oh, I’m lactose-intolerant too. But I go ahead and have ice cream whenever I want. I just deal with the consequences.” I’m usually like, “If I did that, I would be running to the bathroom with explosive diarrhea in about 30 minutes and would have exceedingly painful stomach cramps and gas for the next 3-4 days.”

     

    How has this affected you positive or negative?

    It’s caused me no amount of trouble when I eat out. I have waiters/cooks who don’t take me seriously or treat it like I’m just making it up. I once ordered a hamburger and they brought me a cheeseburger. I told them I couldn’t eat it. The waiter initially argued that I got the cheese for free because they only charged me for a hamburger. I reiterated that I couldn’t eat it. The waiter took it back and came back a few minutes later with the same burger with the cheese scraped off. I told them that if I ate that, I would still get sick. The waiter and the cook were both pissed at me, even though I told them upfront that I had a dairy allergy.

     

    How has this affected your relationships?

    My previous relationship refused to believe that I had anything wrong. I should just “tough” it out because everyone has things that hurt.

     

    Any questions to add to this list?

    Why do you think people don’t believe you when you say you have a disability?

    What is the single greatest challenge you face on a daily basis?

    How do you tell people that you have an invisible disability? Do you tell people?

    Animals in the wild try to hide their disabilities because they will be preyed upon by other animals. Do you think that, on some level, that is why people with invisible disabilities try to hide their problems even from loved ones?

     

    What are you afraid to tell even the people closest to you?

    That I usually burn through my daily allotment of spoons right before or during cooking dinner, but I feel I have to push through anyway because the family is depending on me to take care of things. The fact that I usually end up cleaning up dinner and doing other things around the house afterward means I am frequently beyond exhausted by the time I go to bed.
     

    Does the fact that your disease is invisible change how healthcare professionals treat you?

    Definitely. I have had to do my own research into what’s wrong with me on more than one instance. It was only because I pushed that I got the test/treatment I needed. For example, I found out about and performed the elimination diet to find out what was making me sick (dairy), not my doctor.

     

    Best coping mechanism?

    I do the shopping. That way I can ensure that I read the labels and not accidentally get something that contains hidden dairy. As far as my feet and arthritis problems, I’m lucky enough that we can afford for me to get weekly massages that help with the pain.

     

    Favorite swear word?

    Fuck! Or Motherfucker.

     

    What are you the most fearful of and what are you the most hopeful for in the future?

    I’m fearful that my condition will continue to deteriorate to the point where I cannot walk at all without assistance. This would make life very difficult as my house has lots of stairs and I would not be able to take care of my family like I do now. I also would no longer feel like I was contributing to my family.

     

    I’m hopeful that, with advances in medicine, something can be done about my various problems so that I can go back to having an active life where I don’t have to think about ‘how far can I realistically go / walk’ or that I can go out to eat without having a near panic attack worrying that there will be hidden dairy in my food that will make the next several days hell.

     

    Support Kyros

    Dreaming of Xeres (The Third War Book 1) By Orion T. Hunter, Kyros Amphiptere

    Follow Us



    ]]>
    <![CDATA[Gas Lighting: Searching For Chronic Illness Diagnosis in American Healthcare System (Its' funnier than it sounds and just as frustrating)]]> Mon, 28 Aug 2017 10:29:00 GMT 58:15 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:598de96ff14aa1a306a532f4 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877eb
    I put it down to herd animal weakness. I don’t want to show I could get picked off...I don’t want anyone to know..I’m here as the weakest gazelle going oh shit!
    — Jen Toal

    Did I get lucky! I got to make a new friend. I hope you enjoy listening to Jen. She is an amazing poet and at the end of the interview you can hear two very powerful poems. She is hilarious and strong. She has been dealing with being sick and frail even though she has made massive changes (loosing 100lbs) and has just started in on her 40's. We talk about parenting with a chronic illness, the American healthcare system (buckle up its' about to get political), the importance of art when you can't get out of bed, and how important friendships are especially when you are dealing with chronic invisible illness. 

    Ms. T's Answers {More Bad Ass Than Mr. T}

    Jen Toal

     Age 40

    Conditions

    PTSD, Chronic Pain, Extensive nerve injury  nerve injuries in both arms, Not Quite Fibromyalgia (is that a thing?), planters fasciitis, Anxiety/Depression

    (...Hang on, maybe Ehlers-Danlos?? Amazing the things you can learn doing podcast interviews...) After watching Jen through the interview I was impressed at all of the crazy shapes she was making while stretching. She also has the swan deformity and so many other symptoms of the disorder I have.

    I can remember school officials started stepping in around middle school to try to help Mom and I address my symptoms. They couldn't find much obviously wrong with me, except for some scoliosis. In high school, I was given special locker accommodations each year to try to help reduce the load on my body and as an eighteen-year-old, our family doctor explained to me that I was experiencing the same daily pain as most eighty-year-olds. This was before the injuries of my twenties and thirties.

    I didn't get far working with that doc because growing up means losing access to health care in our country. 

     

    In my early twenties, I was working in tech support and saving for further college when all the nerves on both my arms were blown out by repetitive stress from typing. I spent the next several years in surgery and disabled. I got LOTS of doctor attention, but only on the subject of my work injuries. They were there to repair me from what they had done, not heal me overall. 

     

    The worst part of those years was being unable to draw. 

     

    In my thirties I found reasons to stop giving up on my life, most notably my husband, John, and our sweet child. John and I changed so many of our daily habits that together we lost three hundred pounds. 

    https://www.facebook.com/shapeshifterconfessions/

     

    Losing 45% of my pre pregnancy body weight has done amazing things for my health, but it's not the miracle cure it *looks* like from the outside. For one thing, jumping up out of my sick bed to chase my snuggly little kettle bell around gave me a wicked case of Plantar Fasciitis. It's a remarkably painful addition to my dappling of symptoms but was acceptable collateral damage to me.

     

    1. Who were you before your illness became debilitating?

    A child. 

     

    2. Is there anything you would do if you were not sick? 

    There are so many things. I would have so much more of a career. I would travel. I would go out in the evenings and be around people. I would make so much more art. 

     

    3. What should other people know about our daily life?

    That it's super easy for them to forget, but it's always there, reminding me. That it's exhausting to manage pain.

     

    4. What would make living and moving in the world easier for you?

    Single Payer Healthcare and Universal Basic Income. 

     

    In my twenties I spent a lot of time with people who liked to play, "What if we won the lottery??" My answers always began with access to doctors and therapists.

     

    5. Life hacks?

    Tennis balls are my latest favorite backpack staple. I sit and lean on them for point massage. They are especially magical for car trips, which have always been rugged for me.

    My backpack itself is my favorite tool, but like many medications that come with side effects, the magic bag does sometimes get ridiculously heavy.

     

    6. Support from family or friends?

    I married really well. My husband is marvelously supportive and encouraging. My mother would help more if she were closer. 

    Friend community cares from afar, but we are all spread so perilously thin...

    I saw this art show with a display that said, "We are living in an era that is testing the limits of everyone's compassion." I worry about all of us. Times are tough, and getting tougher, and I don't feel like my communities have the space to hold me up. Not because they don't care, but because they're fighting so hard to keep themselves going.

     

    7. Do you find that people do not believe you are sick because of your appearance? How has this affected you positive or negative?

    Yes. All the time. It's horrible. I spend a bunch of time disappointing the humans around me because I look so healthy, especially after my weight loss, but I am still frustratingly limited.

     

    8. How has this affected your relationships?

    It torpedoes them sometimes. On the other hand, it can allow for deep bonding when we understand each other.

     

    9. What are you afraid to tell even the people closest to you?

    How bad the pain is. How pervasive it is. How scared I am of the future.

     

    10. Does the fact that your disease is invisible change how healthcare professionals treat you?

    Yes. They often disbelieve me. I've been accused of being drug seeking. Which is pretty funny, given how much time John spends trying to convince me to take something.

     

    11. Best coping mechanism?

    Diffuse awareness. Forgetting. Drawing.

     

    12. Favorite swear word?

    John says if hell counts, it's hell. Lol

    I have a hard time picking. Shit, fuuuuuuuuuuuuuck, godsdammit.

     

    13. What are you the most fearful of and what are you the most hopeful for in the future?

    I'm terrified that I'll be unable to support my family in the ways they need me. I'm hopeful about the ways I have learned over the years that people make their livings with skills I totally retain access to, even as my spacesuit gets quietly wonkier...

    Cardboard Decades

     

    when i say ricky was my best friend, what i mean is 

    he was my first consensual sexual partner

    i turned 5 while mom and i lived in his mother's house

    he was 6

     

    i once pulled his little brother, fallen-comrade-style, 

    across train tracks in the very nick

    wouldn't know for decades how scared i should've been

     

    they taught me prank calling and ladybug sailing 

    how to be kind to the kind doberman 

    and keep my dolls far away from the angry one

     

    ricky and i were softness and exploration 

    in an already cruel and confusing world

     

     

    i remember being 8 or so 

    sun-drenched in the back of my grandmother's very nice car

    i wouldn’t know for decades about love languages 

    but i knew in california i was given things, but few hugs

    and in texas, hugs, but few things

     

    i preferred hugs

     

    but it was well known that "daddy warbucks" 

    and family had more money than made any sense

    and they didn't get as much time to be affectionate

    so it made sense

    that they'd want me to have touchstones of affection

    when i went back to my mother's wars

     

    how could they know?

     

    mom would send them letters, 

    as she says, "full of things we never did. 

    places we were never going to be."

     

    it wasn't just that we couldn't get above the poverty line

     

    i wouldn’t know for decades the term “human trafficking” 

     

    my poor mother.

     

    i also hadn't learned the different ways a car can sit 

    that day i was walking home

    with ricky

    mom pulled over

    countenance confusing

    told me only i could get in

    drove away

    before telling me we'd never go back

     

    i would never say goodbye

     

    i wouldn’t know for decades

    that the reason no one understands 

    what i mean when i say 

    we “moved a lot” when i was a kid 

    is because i don't understand 

    what i should be saying 

    is we were homeless 

    for more of my childhood

    than i had realized.

     

    only way to explain 

    we have to move whenever someone gets mad

     

    or

     

    my doll protects me from the mean girl

    i share a bed with 

     

    or

     

    we take my most evil stepdad back

    eleven times

     

    he's charming

    and when he's around churches don't have to bring us things

     

    or

     

    the motels. national parks. so many places 

    i stop calling where i sleep anything other than "the house"

    know if i learn the path from house to grocery, it’s probably time to go

     

    try out different versions of my name in different schools

     

     

    sometimes compassion is a shovel to the gut

    often my mother wakes up screaming

     

    i’ll never know how many trains she pulled us from the teeth of.

     

    only reluctantly came to see the damage of 

    rootlessness on a childhood

     

    perpetual motion was our only way of survival. 

     

    i ran into ricky a couple years later

    awkward amongst other kids

    eons away from the life we had shared

     

    i’ve been trying to shift my relationship with cardboard

    dismantling all my boxes

    learning to build some belief

     

    i might just get to stay


     

    advice i am giving myself

    upon meeting new soul mates

     

    stand solidly 

    if you are able

    hold your form fluid 

    brace for beauty

     

    and the way it always 

    knocks you over

     

    notice press of globe

    up through soles

     

    marvel at the moments experience

    and universal 

    shake hands

     

    trade knees

     

    compare the roads you have run

    the trees you jumped out of

    the places your jeans have worn through

     

    skip right past groins and sex

    this isn't that poem

     

    and connection

    can be better

    for being less obvious

     

    instead

    press your belly buttons together

    a meeting of absences

     

    shared space to frame things

     

    frame things

    redo this if it

    feels more truthful

     

     

    consider the strengths of your mat

    let the space placed around

    your best work

    have its own things to say

     

    say things

    out loud

     

    experience is meant to be shared

     

    and no one needs your 

    perspective

    more than a soul mate

     

    trade scars stories 

    (tattoos totally count)

     

    tell each other tales of the ways 

    the world hasn't ended

    even if it left a mark

     

    breathe

     

    feel belly press belly

    laugh

     

    you've been sucking down discord

    all day

     

    like too little sleep

    too much wireless

    and a fundamental disconnect

    from how our species evolved

    to thrive

     

    agree to thrive anyway

     

    slice out space for each other

    in the places you

    forget to feel shame 

     

    allow yourself

    and each other

    forgiveness

     

     

    for everything you’ve ever believed was wrong with you.

     

    there’s never been anything wrong with you.

    except not knowing there was nothing wrong with you.

     

    forgive yourself 

    for lying to yourself

    in order to stay small

     

    it’s okay to not be everything

     

    we are all of us everything together

    and we forget we don’t have to 

    do it alone

     

    give up the notion 

    you may somehow 

    be on the same page

     

    you’ve only just collided 

    from across the cosmos

     

    the particular constellation 

    of harmonic convergences 

    your empty spaces 

    express

    as you pass through each other

     

    are not the same

    as being the same

     

    we are stronger for our differences

     

    befuddling though they be

     

    decide this is the game

    and that you are always winning.

     

    because you are.

     

    ]]>
    I put it down to herd animal weakness. I don’t want to show I could get picked off...I don’t want anyone to know..I’m here as the weakest gazelle going oh shit!
    — Jen Toal

    Did I get lucky! I got to make a new friend. I hope you enjoy listening to Jen. She is an amazing poet and at the end of the interview you can hear two very powerful poems. She is hilarious and strong. She has been dealing with being sick and frail even though she has made massive changes (loosing 100lbs) and has just started in on her 40's. We talk about parenting with a chronic illness, the American healthcare system (buckle up its' about to get political), the importance of art when you can't get out of bed, and how important friendships are especially when you are dealing with chronic invisible illness. 

    Ms. T's Answers {More Bad Ass Than Mr. T}

    Jen Toal

     Age 40

    Conditions

    PTSD, Chronic Pain, Extensive nerve injury  nerve injuries in both arms, Not Quite Fibromyalgia (is that a thing?), planters fasciitis, Anxiety/Depression

    (...Hang on, maybe Ehlers-Danlos?? Amazing the things you can learn doing podcast interviews...) After watching Jen through the interview I was impressed at all of the crazy shapes she was making while stretching. She also has the swan deformity and so many other symptoms of the disorder I have.

    I can remember school officials started stepping in around middle school to try to help Mom and I address my symptoms. They couldn't find much obviously wrong with me, except for some scoliosis. In high school, I was given special locker accommodations each year to try to help reduce the load on my body and as an eighteen-year-old, our family doctor explained to me that I was experiencing the same daily pain as most eighty-year-olds. This was before the injuries of my twenties and thirties.

    I didn't get far working with that doc because growing up means losing access to health care in our country. 

     

    In my early twenties, I was working in tech support and saving for further college when all the nerves on both my arms were blown out by repetitive stress from typing. I spent the next several years in surgery and disabled. I got LOTS of doctor attention, but only on the subject of my work injuries. They were there to repair me from what they had done, not heal me overall. 

     

    The worst part of those years was being unable to draw. 

     

    In my thirties I found reasons to stop giving up on my life, most notably my husband, John, and our sweet child. John and I changed so many of our daily habits that together we lost three hundred pounds. 

    https://www.facebook.com/shapeshifterconfessions/

     

    Losing 45% of my pre pregnancy body weight has done amazing things for my health, but it's not the miracle cure it *looks* like from the outside. For one thing, jumping up out of my sick bed to chase my snuggly little kettle bell around gave me a wicked case of Plantar Fasciitis. It's a remarkably painful addition to my dappling of symptoms but was acceptable collateral damage to me.

     

    1. Who were you before your illness became debilitating?

    A child. 

     

    2. Is there anything you would do if you were not sick? 

    There are so many things. I would have so much more of a career. I would travel. I would go out in the evenings and be around people. I would make so much more art. 

     

    3. What should other people know about our daily life?

    That it's super easy for them to forget, but it's always there, reminding me. That it's exhausting to manage pain.

     

    4. What would make living and moving in the world easier for you?

    Single Payer Healthcare and Universal Basic Income. 

     

    In my twenties I spent a lot of time with people who liked to play, "What if we won the lottery??" My answers always began with access to doctors and therapists.

     

    5. Life hacks?

    Tennis balls are my latest favorite backpack staple. I sit and lean on them for point massage. They are especially magical for car trips, which have always been rugged for me.

    My backpack itself is my favorite tool, but like many medications that come with side effects, the magic bag does sometimes get ridiculously heavy.

     

    6. Support from family or friends?

    I married really well. My husband is marvelously supportive and encouraging. My mother would help more if she were closer. 

    Friend community cares from afar, but we are all spread so perilously thin...

    I saw this art show with a display that said, "We are living in an era that is testing the limits of everyone's compassion." I worry about all of us. Times are tough, and getting tougher, and I don't feel like my communities have the space to hold me up. Not because they don't care, but because they're fighting so hard to keep themselves going.

     

    7. Do you find that people do not believe you are sick because of your appearance? How has this affected you positive or negative?

    Yes. All the time. It's horrible. I spend a bunch of time disappointing the humans around me because I look so healthy, especially after my weight loss, but I am still frustratingly limited.

     

    8. How has this affected your relationships?

    It torpedoes them sometimes. On the other hand, it can allow for deep bonding when we understand each other.

     

    9. What are you afraid to tell even the people closest to you?

    How bad the pain is. How pervasive it is. How scared I am of the future.

     

    10. Does the fact that your disease is invisible change how healthcare professionals treat you?

    Yes. They often disbelieve me. I've been accused of being drug seeking. Which is pretty funny, given how much time John spends trying to convince me to take something.

     

    11. Best coping mechanism?

    Diffuse awareness. Forgetting. Drawing.

     

    12. Favorite swear word?

    John says if hell counts, it's hell. Lol

    I have a hard time picking. Shit, fuuuuuuuuuuuuuck, godsdammit.

     

    13. What are you the most fearful of and what are you the most hopeful for in the future?

    I'm terrified that I'll be unable to support my family in the ways they need me. I'm hopeful about the ways I have learned over the years that people make their livings with skills I totally retain access to, even as my spacesuit gets quietly wonkier...

    Cardboard Decades

     

    when i say ricky was my best friend, what i mean is 

    he was my first consensual sexual partner

    i turned 5 while mom and i lived in his mother's house

    he was 6

     

    i once pulled his little brother, fallen-comrade-style, 

    across train tracks in the very nick

    wouldn't know for decades how scared i should've been

     

    they taught me prank calling and ladybug sailing 

    how to be kind to the kind doberman 

    and keep my dolls far away from the angry one

     

    ricky and i were softness and exploration 

    in an already cruel and confusing world

     

     

    i remember being 8 or so 

    sun-drenched in the back of my grandmother's very nice car

    i wouldn’t know for decades about love languages 

    but i knew in california i was given things, but few hugs

    and in texas, hugs, but few things

     

    i preferred hugs

     

    but it was well known that "daddy warbucks" 

    and family had more money than made any sense

    and they didn't get as much time to be affectionate

    so it made sense

    that they'd want me to have touchstones of affection

    when i went back to my mother's wars

     

    how could they know?

     

    mom would send them letters, 

    as she says, "full of things we never did. 

    places we were never going to be."

     

    it wasn't just that we couldn't get above the poverty line

     

    i wouldn’t know for decades the term “human trafficking” 

     

    my poor mother.

     

    i also hadn't learned the different ways a car can sit 

    that day i was walking home

    with ricky

    mom pulled over

    countenance confusing

    told me only i could get in

    drove away

    before telling me we'd never go back

     

    i would never say goodbye

     

    i wouldn’t know for decades

    that the reason no one understands 

    what i mean when i say 

    we “moved a lot” when i was a kid 

    is because i don't understand 

    what i should be saying 

    is we were homeless 

    for more of my childhood

    than i had realized.

     

    only way to explain 

    we have to move whenever someone gets mad

     

    or

     

    my doll protects me from the mean girl

    i share a bed with 

     

    or

     

    we take my most evil stepdad back

    eleven times

     

    he's charming

    and when he's around churches don't have to bring us things

     

    or

     

    the motels. national parks. so many places 

    i stop calling where i sleep anything other than "the house"

    know if i learn the path from house to grocery, it’s probably time to go

     

    try out different versions of my name in different schools

     

     

    sometimes compassion is a shovel to the gut

    often my mother wakes up screaming

     

    i’ll never know how many trains she pulled us from the teeth of.

     

    only reluctantly came to see the damage of 

    rootlessness on a childhood

     

    perpetual motion was our only way of survival. 

     

    i ran into ricky a couple years later

    awkward amongst other kids

    eons away from the life we had shared

     

    i’ve been trying to shift my relationship with cardboard

    dismantling all my boxes

    learning to build some belief

     

    i might just get to stay


     

    advice i am giving myself

    upon meeting new soul mates

     

    stand solidly 

    if you are able

    hold your form fluid 

    brace for beauty

     

    and the way it always 

    knocks you over

     

    notice press of globe

    up through soles

     

    marvel at the moments experience

    and universal 

    shake hands

     

    trade knees

     

    compare the roads you have run

    the trees you jumped out of

    the places your jeans have worn through

     

    skip right past groins and sex

    this isn't that poem

     

    and connection

    can be better

    for being less obvious

     

    instead

    press your belly buttons together

    a meeting of absences

     

    shared space to frame things

     

    frame things

    redo this if it

    feels more truthful

     

     

    consider the strengths of your mat

    let the space placed around

    your best work

    have its own things to say

     

    say things

    out loud

     

    experience is meant to be shared

     

    and no one needs your 

    perspective

    more than a soul mate

     

    trade scars stories 

    (tattoos totally count)

     

    tell each other tales of the ways 

    the world hasn't ended

    even if it left a mark

     

    breathe

     

    feel belly press belly

    laugh

     

    you've been sucking down discord

    all day

     

    like too little sleep

    too much wireless

    and a fundamental disconnect

    from how our species evolved

    to thrive

     

    agree to thrive anyway

     

    slice out space for each other

    in the places you

    forget to feel shame 

     

    allow yourself

    and each other

    forgiveness

     

     

    for everything you’ve ever believed was wrong with you.

     

    there’s never been anything wrong with you.

    except not knowing there was nothing wrong with you.

     

    forgive yourself 

    for lying to yourself

    in order to stay small

     

    it’s okay to not be everything

     

    we are all of us everything together

    and we forget we don’t have to 

    do it alone

     

    give up the notion 

    you may somehow 

    be on the same page

     

    you’ve only just collided 

    from across the cosmos

     

    the particular constellation 

    of harmonic convergences 

    your empty spaces 

    express

    as you pass through each other

     

    are not the same

    as being the same

     

    we are stronger for our differences

     

    befuddling though they be

     

    decide this is the game

    and that you are always winning.

     

    because you are.

     

    ]]>
    <![CDATA[Fibromyalgia, Anxiety, & College Oh My Part 1 {Invisible Illness}]]> Mon, 21 Aug 2017 10:44:00 GMT 39:55 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5979297dbf629a07f4cee528 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877ec Fibromyalgia and Anxiety: Going to college and Traveling With Invisible Illnesses Thank you so much for joining me in this weeks episode of Invisible Not Broken. Today I am going to be talking to Ms. O about her Fibromyalgia symptoms and some of her Fibromyalgia Treatment as well as her anxiety symptoms all while the wonderful girl is in college.

    I met Miss O and did a minor bit of pleading for her to come on the podcast. I think I just simply believe everyone should have a chance to meet her. It seemed a little unfair that just by chance I got to. Miss O at her early 20's has figured out so many things that I took the long road to. I hope you enjoy listening to her and getting to know her as much as I did.

    To learn more about Fibromyalgia

    To learn more about Anxiety

    To learn about Kratom

    To learn about Eric Swalwell

    To learn about TaskRabbit

    Thank you so much. Please share the podcast with a friend and leave an embarrassingly glowing review on iTunes! There was a tiny break in the audio because parent and child came running in I promise it's only a few seconds.

    subscribe to the podcast ]]>
    Thank you so much for joining me in this weeks episode of Invisible Not Broken. Today I am going to be talking to Ms. O about her Fibromyalgia symptoms and some of her Fibromyalgia Treatment as well as her anxiety symptoms all while the wonderful girl is in college.

    I met Miss O and did a minor bit of pleading for her to come on the podcast. I think I just simply believe everyone should have a chance to meet her. It seemed a little unfair that just by chance I got to. Miss O at her early 20's has figured out so many things that I took the long road to. I hope you enjoy listening to her and getting to know her as much as I did.

    To learn more about Fibromyalgia

    To learn more about Anxiety

    To learn about Kratom

    To learn about Eric Swalwell

    To learn about TaskRabbit

    Thank you so much. Please share the podcast with a friend and leave an embarrassingly glowing review on iTunes! There was a tiny break in the audio because parent and child came running in I promise it's only a few seconds.

    subscribe to the podcast ]]>
    Amyloidosis, Parenting When Chronically Ill, What Not to Ask Sick People, Best idea for Airbnb {chronic illness podcast} Amyloidosis, Parenting When Chronically Ill, What Not to Ask Sick People, Best idea for Airbnb {chronic illness podcast} Sat, 12 Aug 2017 13:30:00 GMT 1:03:33 537bc58de4b05e70b36fe482:58ae6322d2b85789f820fbfa:5980e2f5ebbd1a26c493a3e3 yes https://shows.pippa.io/5b6ba27ab39d904e57d877bb/5b6ba308b39d904e57d877ed Amyloidosis, Parenting When Chronically Ill, What Not to Ask Sick People, Best idea for Airbnb    Invisible Illness does not get much more invisible than Dawn. I can not remember when she first told me she was sick but I promise I was shocked, even with my invisible illness spidey sense. Please listen to the end to find out the best questions to ask a sick person and why "How are you doing?" should just be removed from the conversation. We also came up with the best idea for Airbnb if they want a how to rock at helping people idea. Thank you so much for listening to Invisible Not Broken. Please subscribe to the podcast to hear more interviews and of course leave an embarrassingly glowing review on iTunes.

    Until next week:

    Be Kind. Be Gentle. Be a Bad Ass.

    Learn More

    Dawn's Reccomendations for Spoonie Survival


    Spoon Theory

    Amazon Fresh

    Airbnb

    Netflix

    Amazon Prime Video

    Girlfriends Guide to Divorce {Streaming on Netflix as of 7.17}

    Dr. Who {streaming on Amazon Prime as of 7.17}


    Questionairre  Answears


    1)  Who were you before your illness became debilitating?

    An "active" mom who went biking with her kids, a participant in our lives instead of an observer. An "athletic" woman...biking up Redwood Road, a gym rat.

    2) Is there anything you would do if you were not sick? 

    Take my son and daughter mountain bike riding. Seek out trails farther away. Consider teaching full time.

    3)  What should other people know about our daily life?

    I "bank" my energy, so if there is a busy day coming up...I plan on nothing before and after to gather up and replenish. I have a hard time committing night's out with friends as by 8pm I'm ready to go to bed.

    4)What would make living and moving in the world easier for you?

    More help with my kids for doctors appointments. More naps.

    5) Life hacks?

    Child labor! Taking my husband up on his offer to do more and telling him specifically what needs to get done. Considering ordering groceries from AmazonFresh.

    6) Support from family or friends?

    Yes and No..for the big trips across country yes! But for the every day, it's harder as we all don't live near one another.

    7) Do you find that people do not believe you are sick because of your appearance? How has this affected you positive or negative?

    I get more reactions from people when I'm having a tough day...when I'm feeling strong or having a good day...there's always a strange vibe like "you can do this?"

    8. How has this affected your relationships?

    The circle of friends has shrunk for sure. I just don't have the energy to be "out there" and putting energy out for that many people...I have to bank my energy for my kids and husband and myself. People don't reach out to me as I often end up saying "no" to going out or hanging out.

    9. What are you afraid to tell even the people closest to you?

    I am truly afraid of dementia. There are times that I have brain fog and can't come up with a word or forget a word or blank on something I committed to. That's part of being a parent and dealing with everything...but I can't chase that demon off. I watch my handwriting as that was what I first noticed with my mom.

    10. Does the fact that your disease is invisible change how healthcare professionals treat you?

    Yes, I had an Amyloid special tell me I should go running. I would love that if it weren't for the fear of stumbling and falling. Another specialist didn't believe me.

     

    ]]>
       Invisible Illness does not get much more invisible than Dawn. I can not remember when she first told me she was sick but I promise I was shocked, even with my invisible illness spidey sense. Please listen to the end to find out the best questions to ask a sick person and why "How are you doing?" should just be removed from the conversation. We also came up with the best idea for Airbnb if they want a how to rock at helping people idea. Thank you so much for listening to Invisible Not Broken. Please subscribe to the podcast to hear more interviews and of course leave an embarrassingly glowing review on iTunes.

    Until next week:

    Be Kind. Be Gentle. Be a Bad Ass.

    Learn More

    Dawn's Reccomendations for Spoonie Survival


    Spoon Theory

    Amazon Fresh

    Airbnb

    Netflix

    Amazon Prime Video

    Girlfriends Guide to Divorce {Streaming on Netflix as of 7.17}

    Dr. Who {streaming on Amazon Prime as of 7.17}


    Questionairre  Answears


    1)  Who were you before your illness became debilitating?

    An "active" mom who went biking with her kids, a participant in our lives instead of an observer. An "athletic" woman...biking up Redwood Road, a gym rat.

    2) Is there anything you would do if you were not sick? 

    Take my son and daughter mountain bike riding. Seek out trails farther away. Consider teaching full time.

    3)  What should other people know about our daily life?

    I "bank" my energy, so if there is a busy day coming up...I plan on nothing before and after to gather up and replenish. I have a hard time committing night's out with friends as by 8pm I'm ready to go to bed.

    4)What would make living and moving in the world easier for you?

    More help with my kids for doctors appointments. More naps.

    5) Life hacks?

    Child labor! Taking my husband up on his offer to do more and telling him specifically what needs to get done. Considering ordering groceries from AmazonFresh.

    6) Support from family or friends?

    Yes and No..for the big trips across country yes! But for the every day, it's harder as we all don't live near one another.

    7) Do you find that people do not believe you are sick because of your appearance? How has this affected you positive or negative?

    I get more reactions from people when I'm having a tough day...when I'm feeling strong or having a good day...there's always a strange vibe like "you can do this?"

    8. How has this affected your relationships?

    The circle of friends has shrunk for sure. I just don't have the energy to be "out there" and putting energy out for that many people...I have to bank my energy for my kids and husband and myself. People don't reach out to me as I often end up saying "no" to going out or hanging out.

    9. What are you afraid to tell even the people closest to you?

    I am truly afraid of dementia. There are times that I have brain fog and can't come up with a word or forget a word or blank on something I committed to. That's part of being a parent and dealing with everything...but I can't chase that demon off. I watch my handwriting as that was what I first noticed with my mom.

    10. Does the fact that your disease is invisible change how healthcare professionals treat you?

    Yes, I had an Amyloid special tell me I should go running. I would love that if it weren't for the fear of stumbling and falling. Another specialist didn't believe me.

     

    ]]>