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The Spoonie Struggle


Jun 16, 2021

Episode 19: Monica Michelle's Story With EDS, CRPS, MCAS, and POTS

In this episode, Monica Michelle discusses her chronic illness story with EDS, MCAS, POTS, Fibromyalgia, CRPS, and more. Monica and Jessica go on a lot of fun soap-box rants about the state of healthcare and disability. They discuss the use of mobility aids, and awesome tips and tricks to stay safe. We chat about the complexities of MCAS and trying to figure out our triggers. Jessica rants about how expensive chronic illness is and how much it affects ones finances. Monica discusses the combination of treatments that helps make her chronic pain slightly more manageable. To minimize sleeping dislocations, she keeps on leg on top of a pillow, and keeps herself still with a weighted blanket. She recommends an adjustable bed to assist with transfers to her wheelchair. Monica shared that it took 30 years to get formally diagnosed. She was always in pain and throwing up as a child. Doctors simply diagnosed her with mental health difficulties, and she was initially diagnosed with MS and lupus. She was able to get in with a private pay doctor who eventually properly diagnosed her.

The two then  discuss the horrors or racial discrimination in the healthcare industry and the power differential between patient and doctor. They discuss weight discrimination and the horrible limitations to getting insurance with preexisting conditions.

 

To cope, Michelle uses her medications, uses virtual reality games and tours, a TENS unit, social support, distraction, bring kind to her, learning how to be a sick mom, and having “slug” days with her daughter.

 

Invisible Not Broken

Explicitly Sick Podcast

I Can’t Believe That Happened Podcast

Unacceptable Pain Scale

Muldowney Protocol

Whillchair

Smartcane

Zerogravity Bed

Oculus

YouTube VR

Art Rage App

Procreate App

Ninja Hot/cold Mixer

Untamed

Skillshare

H-Wave

 

 

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Hosted by: Jessica Temple 

Music by Antarcticbreeze Music

Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment.

Copyright 2021 Jessica Temple