All tagged Ehlers Danlos

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.

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.

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


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.

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.

Sex and Disability: Everything You Want To Know About Dating and Chronic Illness But Were Afraid To Ask

Click Title to Listen To Our Invisible Disabilities Podcast

 

Sex and Disability: Everything You Want To Know About Dating and Chronic Illness You Wanted To Know But Were Afraid To Ask. Invisible Not Broken an invisible illness podcast.

Today a bear and a vanilla suburban housewife talk sex and relationships with chronic illness.

I have Ehlers Danlos, MCA, POTS, and Fibromyalgia here my interview here

Kyros had food allergies and Morton's Neuroma listen here

Ehlers Danlos, Fibromyalgia, POTS, & MCA Collect Them All {Invisible Illness Podcast}

Click Title To Listen To Invisible Illness Podcast

 

 

 

 

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.

Ehlers Danlos

POTS

Fibromyalgia

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.

Invisible Illness and the Adventure of Getting a Diagnosis {Diagnosis: precious, my precious}

Click Title To Listen ToThe Podcast

 

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.