Invisible Not Broken - Chronic Illness Podcast Network

A huge welcome back to my friend Dawn who has amyloidosis and for the last year has been on a drug trial. I asked her to come on to the show to talk about her experiences getting into the trial, what it has been like, what she wishes she had known before, and what will happen to her now that the trial is ending. Important points: Minute 24 How to talk to your doctor about medical trials Minute 40:...

 Today I am interviewing  Melvin Phillip  a sex therapist about his upcoming book.  Sex & Love When You Are Sick   will provide couples with strategies to overcome shame and the sexual limitations they are experiencing due to illness by reclaiming a sex life that works. Couples will learn to acknowledge loss, cope, and build a relationship with the illness. This book will help the couple devel...

If you have not listened to Dawn's story please do for Flashback Friday. Listen this week, Dawn will be back next week to talk about her experiences being part of a medical study.   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...

The Emotional Side of Living with a Chronic Illness “It's important that people know that it IS going to be OK and that there is IS possibility"' - Jodi Taub Jodi Taub, LCSW is a psychotherapist in NYC. She has over 20 years of direct care experience with children, adolescents, and adults including individual, couples, family, and group therapy. She specializes in treating issues related to Mood a...

Recommendations and Links AprilDawn’s YouTube AprilDawn’s Instagram Dr. Who David Tennent Catherine Tate Much Ado About Nothing Two Old Goats Lotion What is your disorder?  * Fibromyalgia , migraines , vaso vegal syncope , ptsd w/ bipolar & borderline At what age did your disorder become a daily issue?  * 22 Who were you before your illness became debilitating?  * A dancer, manager of a weekly...

CoachArt’s mission is to create a transformative arts and athletics community for families impacted by childhood chronic illness. Children living with chronic illness may feel isolated because of their condition. Frequent hospital visits and deficient immune systems often cause them to miss time in school and recreational activities. Families, overwhelmed by the cost and demands of ongoing medical...

Show Notes for Body Image and Chronic Illness The Australian is back!!!! Body Image and chronic illness We are fairly similar in certain way so instead of guessing at someone else experiences  ballet and modeling with crowns Skinny does not mean healthy! Pregnancy and how that can be a way for healthy people to begin to understand body changes in chronic illness NEW YEARS RESOLUTION: If it can not...

Our Disorders: Fibromyalgia Ehlers Danlos Mast Cell Activation Disorder POTS Some of the Things We Talked About ON Wellacopia Launching a Health Tech Startup While Having Chronic Illness HOW TO LAUNCH A STARTUP WHEN YOU HAVE CHRONIC ILLNESS WHATS NEW WITH WELLACOPIA WHAST DID YOU DIFFERENTLY  WHAT WOULD YOU DO DIFFERENTLY WITH CHRONIC UNEXPECTED FEEDBACK BEST FEEDBACK WHO DO YOU WANT TO SIGN UP HO...

   Does this look familiar? Yup an oldie and goodie from last year. Kyros & I are not doing well and this one is just too good not to share again. Please share with family, friends, and support groups. I hope you enjoy and that Kyros and/or I am doing well enough to record again soon. Self-care is your buzzword of the day. Make sure you have your meds Make a playlist that makes you smile, no j...

A wonderful interview with Rebecca about life with Crohns, Fibromyalgia, and ME. We cover mental illness and chronic illness, body image and chronic illness, and how to take VERY good care of the spoonie in your life. We also talk about the difference of being sick in a world of socialized medicine and how it is different living in America where our health care is for profit. What is your disorder...

Briana our resident Pain Management PA is back and just in time for Holiday Shopping! Here is a gift guide for your spoonie or for you. She has brought a bunch of products available on Amazon that she has found helpful for pain management and her own chiari malformation and Ehlers Danlos Syndrome . Amazon pain relief product list  Migraine Hat $29.99 https://www.amazon.com/Migraine-Hat-Wearable-Re...

Interview With Shona Curley From Red Kite Meditations on Lyme Disease, meditation and chronic illness, relationships and chronic illness, and of course the cost of being sick in America. Find Out More About Shona & Follow Her: www.redkitemeditations.com Instagram FaceBook What is your disorder?  * Lyme disease At what age did your disorder become a daily issue? * 40 Who were you before your il...

Emily’s Website   *   Emily’s Podcast   *   Emily’s Twitter  *  Emily’s Instagram  *  Emily’s YouTube  *  Emily’s Pinterest   *   Emily’s SoundCloud   * Emily’s Facebook singer-songwriter & creative consultant bestselling author of  Bare Naked Bravery founder of  The School of Bravery  a learning lab for creative visionaries Recomendations Holli Margel School of Bravery Zapier Trello Fabulous...

I am beyond excited for you to listen to this interview with Emily Guy Birkin. Being sick in any country is expensive. No matter where you are there is time off work and a lowering of energy. A new chronic illness or disability diagnosis can be terrifying for so many reasons but one of them might be something you can control and prepare for, financial. Emily and I will cover some of the ways to bu...

FEAR AND CHRONIC ILLNESS HALLOWEEN EDITION MONICA MICHELLE AND KYROS STARR TALK ALL ABOUT THE THINGS THAT SCARE THEM. Monica Michelle has been having a tough time with Ehlers Danlos Syndrome and a new diagnosis of MCAS and Kyros is have joint problems and some new troubling symptoms. Disability has never been so spooky. In all seriousness warning if you have problems hearing about depression and t...

An interview with Niko, founder of the chronic illness community and dating app Lemonayde, about dating with chronic illness and his own chronic skin issue Tinea Versicolor. Lemonayde App Name * Niko Geoffroy What is your disorder? * Tinea Versicolor At what age did your disorder become a daily issue? * 15 Who were you before your illness became debilitating? * Before my condition, I was already p...

I am back talking with Eva from Wellacopia about how chronic illness shapes and factors into our life choices. Click here for Eva's interview about her life with fibromyalgia Monica Michelle (me) has Ehlers Danlos , Fibromyalgia , Mast Cell Activation , and POTS . In this first episode, we talk about chronic illness and high school, factors to consider when you are a spoonie choosing a college, an...

I am back talking with Eva from Wellacopia about how chronic illness shapes and factors into our life choices. Click here for Eva's interview about her life with fibromyalgia Monica Michelle (me) has Ehlers Danlos , Fibromyalgia , Mast Cell Activation , and POTS . In this first episode, we talk about chronic illness and high school, factors to consider when you are a spoonie choosing a college, an...

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: T ranscending 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 i...

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 al...

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 m...

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 debilitati...

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.     Je...

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 Tri...

Join the Dark (Humor) Side Sign Up For Our VERY Infrequent Newsletter Sign up with your email address to receive news and updates. Email Address Sign Up We respect your privacy. Thank you! 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...