Copy of Chronic Illness and Life Choices Part 2 School, work, and dating with a chronic illness

A panel with Monica Michelle (podcast host of chronic illness podcast Invisible Not Broken who has Ehlers Danlos, POTS, MCA, and Fibromyalgia) speaks with Eva (From Wellacopia who has Fibromyalgia) all about how our chronic illnesses have shaped our life decisions, from high school to which college to dating to marriage to work and even to having children. Comment below or retweet and comment on how your chronic illness has affected your life choices.

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Chronic Illness and Life Choices Part 1 School, work, and dating with a chronic illness

A panel with Monica Michelle (podcast host of chronic illness podcast Invisible Not Broken who has Ehlers Danlos, POTS, MCA, and Fibromyalgia) speaks with Eva (From Wellacopia who has Fibromyalgia) all about how our chronic illnesses have shaped our life decisions, from high school to which college to dating to marriage to work and even to having children. Comment below or retweet and comment on how your chronic illness has affected your life choices.

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WRITER LISA SNIDERMAN AOEDE ON HER UPCOMING BOOK: A LIGHT IN THE DARKNESS: TRANSCENDING CHRONIC ILLNESS THROUGH THE POWER OF ART AND HOW ART HAS HELPED HER THROUGH DERMATOMYOSITIS

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.

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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

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


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Fibromyalgia, Chronic Illness and School, Target Should Do Better, Thank you ACA, and a Kinder Gentler World for Spoonies

In this week's episode, I spoke with Lauren who has been diagnosed with fibromyalgia since the age of 12. We discussed the difficulty of High School with chronic illness, trouble with college when you have a medical leave and also some interesting ideas of what compliance with ADA means to some schools and at Target. We talked about the importance of the ACA and the ability, especially for chronically ill children to be able to stay on their parent's health plan. We also covered the social side of chronic illness and fibromyalgia as well as some frustrations on the treatment of individuals who have an invisible illness.

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Epilepsy, Philosophy, Creative Writing, and Rose Colored Glasses {A Chronic Illness Podcast}˜

So everything I know about epilepsy is what I have seen or read in the media this interview was illuminating on what a person with epilepsy needs to do to navigate the world safely. There is so much in this interview about triggers, surrendering to your body as self care, dating with epilepsy, drinking or not drinking socially, and what kinds of lighting can cause an attack. Emily is so interesting to talk to. This is a wonderful interview to share with anyone who has or has a friend or family member who has been diagnosed with epilepsy.

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Part 2 Ehlers Danlos Pirate Service Dog CDIF CRPS Part 2 {A chronic illness podcast}

I admit it I ADORE her and her dog Sirius (How can you not love a pirate service dog named for Harry Potter character Sirius Black?) We had a long talk about Ehlers Danlos, life in a wheelchair, CRPS, and service dog etiquette. Service dogs behaving badly can be a huge danger for disabled people dealing with chronic pain and chronic illness. Enjoy this week and tune in next week for part 2.

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Ehlers Danlos Pirate Service Dog CDIF CRPS {A chronic illness podcast}

I admit it I ADORE her and her dog Sirius (How can you not love a pirate service dog named for Harry Potter character Sirius Black?) We had a long talk about Ehlers Danlos, life in a wheelchair, CRPS, and service dog etiquette. Service dogs behaving badly can be a huge danger for disabled people dealing with chronic pain and chronic illness. Enjoy this week and tune in next week for part 2.

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Don't Try This At Home An Experiment In Pain Medication: Chronic Illness Blog

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…click about to read more on a chronic pain patients personal experiment in pain management without opioids. Warning this is not pretty, cute, or fun. If suffering makes you uncomfortable well please watch and then call your congress person and VOTE

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Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk Part 2

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. 

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Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk on Invisible Not Broke

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. 

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Thoracic Outlet Syndrome, Spoonie Business Owners, Pain Management, & Relationships Chronic Illness Edition

 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.

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

What is your disorder? *

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

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

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Secret Spoonie II A Chronic Illness Podcast

 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.

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