This week we have a community focused episode with Jesse and Andi. First they share an email from listener Morgan, and discuss the ramifications of multiple misdiagnoses when searching for answers to a mystery disease. Then they dive into Jesse’s health update, including progress towards finding a diagnosis and the new challenges faced while tracking down definitive test results. They also share their fantastic experiences traveling to Tahoe, learning that traveling with a wheelchair can open up many new possibilities. They discuss visiting the Achieve Tahoe nonprofit to rent a Grit Freedom Wheelchair, an off-road chair that allowed Jesse to go for a ride in the woods, and the many other accessible sports they were introduced to on this trip. Jesse and Andi also open up about challenges they have faced in their relationship navigating the ups and downs of Jesse’s health journey, and how the transition to using a wheelchair has positively changed the way they experience the present together.

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2 Comments

Brooke · July 29, 2021 at 5:10 am

I found your podcast via Tik Tok and I cannot thank you enough!!! Although our paths with chronic illness have been different I can relate, so much, to what you both describe. I have been fighting for answers for the past 5 years. It has been one heck of a fight. It started with a misdiagnosis of Type 2 diabetes. I am actually Type 1. Then a diagnosis of RA. From there I was diagnosed with Heart Failure, Diabetes Insipidus (rare pituitary disorder caused by arteries in my brain compressing my pituitary gland), Hyperadrenergic POTS, Mast Cell Disorder, Graves Disease, Gastroparesis, then one of the rarest and deadliest cancers on the planet – Adrenal Cancer. I have a rare genetic mismatch that has caused Lynch Syndrome. That was followed by Adrenal Insufficiency, a recent Pulmonary Embolism, and NOW Renal Cancer. It is so hard to relate to mostly well people. And I struggle so much with getting doctors to understand the severity of my issues because I “look” well. My “looking well” nearly resulted in my death from Sepsis. I find it difficult to go to doctors now because I was gaslit so much along the way. I am eager to listen to your other podcasts. I would love to share my health journey with you if you are interested. Again thank you so much for doing these podcasts!!! Your experiences are so valuable to listeners!

    Major Pain Podcast · July 29, 2021 at 5:14 am

    Thank you so much for reaching out! I’d love to share your story, I’m sending you an email

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