As a baby, Sarah didn’t know that her diagnosis with asthma would be the first in a long list of diagnoses that would eventually grow to over twenty. Today she manages these conditions with the help of her husband Dan and cat Daisy. She juggles her self care with working as a fundraiser for a charity organization and screening films for the South by Southwest film festival. When not working, she finds joyful movement as a ballroom dancer.

In this episode of the Major Pain podcast, Jesse talks with Sarah about her health journey, including several illnesses we have never discussed on the show before. The first is exercise induced laryngeal obstruction (EILO), an asthma like condition involving the vocal chords closing, which prevents patients from bringing in air properly during intense physical activity. The second is lichen sclerosus, a skin condition causing discolored and thin skin. Due to the sensitive and personal nature of this condition it can be extremely hard to discuss, making first-hand information scarce. Other topics of discussion include central auditory processing disorder, making it difficult to understand words spoken in a noisy or distracting environment, and managing neurodivergence on top of multiple physical conditions.

Sarah is continuing to work at being joyfully disabled. She hopes to show others that with a little accommodation you can live a full life with chronic illness. She wants others to take the advice she has the most trouble taking herself, to be compassionate to yourself, and know that gratitude is not a competition.

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Several years ago, Janene was at a golf tournament when something terrifying happened. Out of nowhere her feet began to burn, as if she were walking on hot coals. She discovered that blisters were spreading across her feet at an alarming rate, as if she were being burned by an invisible fire. As the blisters continued to spread she rushed to the doctor, but nobody had any idea what was going on. After several terrifying days she finally saw a dermatologist who diagnosed her with generalized pustular psoriasis (GPP). She went home with four creams, pain meds and steroids. Thankfully, this intervention helped bring this outbreak of GPP under control.

In this episode of the Major Pain podcast, Janene talks us through her experience with generalized pustular psoriasis as well as her complicated chronic illness history. Along with GPP she has also been diagnosed with plaque psoriasis, lupus, Sjogren’s syndrome, Raynaud’s disease and rheumatoid arthritis. As a mother of twins, managing this many diseases has been a challenge. However, her experience with GPP was the most horrific medical trauma she has been through. That’s why she has devoted herself to spreading information and awareness about generalized pustular psoriasis, to help others find their way through this painful disease.

Learn more about generalized pustular psoriasis at GPPandMe.com

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
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In this episode of Major Pain, we continue our talks with people dealing with hidradenitis suppurativa. Today we talk to Angel, a mother of five who has had multiple health challenges. A self described “homestead mom”, Angel loves to grow vegetables in the garden and make her own food like butter whenever she is able. She stays busy homeschooling her autistic son while raising her other four children, including a fifteen month old. She hopes someday to get a small acreage and have a few animals and live the country life.

At thirty years old, she was diagnosed with thyroid cancer and had to have multiple surgeries to drain and remove the liquid filled tumor, and eventually her entire thyroid. After the surgeries and radiation treatment, she still struggles with getting the right supplements to replace her thyroid hormones, properly absorb nutrition and avoiding fluctuations in weight.

After the birth of her son, the skin symptoms that had been an undiagnosed since she was a teenager became much worse. She had struggled with doctors telling her that she had contact rashes or allergies to certain fabrics or personal care products like deodorant. Finally, at thirty three years old she got the diagnosis of hidradenitis suppurativa. While finally being diagnosed was a relief, it was also the beginning of a long road looking for treatments. She tried Humera but experienced minimal relief with a lot of side effects. Cosentyx had worked fairly well for her until she became pregnant with her youngest child. Now she is attempting to get back on a new medication but has struggled with insurance for approval for a year. On this podcast episode she talks us through her journey so far, and discusses her public advocacy as @hsqueen96.

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
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