How Weird!
Life with a rare disease is bizarre. I went from totally healthy and vibrant to devastatingly ill in the flip of a switch. It just happened one day – without any clear cause or reason. I’m trying to process what happened to me and trying my best to find value in my one precious, painful, messy life.
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What is it Like to Get Mouth Biopsies?
Imagine you have a mysterious mucosal blistering disorder, and your entire mouth is lined with bleeding, open, devastatingly painful sores. Now imagine that a medical provider is going to use a needle to inject lidocaine and cut pieces of flesh out of your already fragile, broken mouth in hopes of finding a diagnosis. Sounds brutal,
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The Steroid Life…
Sometimes when you have an autoimmune disease you really don’t have a choice when it comes to taking steroids. If your disease is mild enough that you do have a choice – lucky you! That’s not the case for everyone. Currently, I’m using high dose prednisone as a bridge until I can begin my new,
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Why Me?
Everyone who has something awful and unexpected happen to them probably asks ‘Why me?’ I guess it really didn’t matter how fit or healthy I tried to be. It was mostly (maybe completely) out of my control. There are moments I feel bitter about my inability to control my health, but those moments are generally
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Life as a Medical Mystery: Part 4
It’s now late October 2024. I apparently have a diagnosis. It’s a lot to wrap my head around. I feel overwhelmed most days. My first round of treatment is scheduled Thanksgiving week. I wish I could start sooner, but there are other patients with a variety of serious illnesses waiting in line ahead of me.
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Life as a Medical Mystery: Part 3
In the spring of 2024, I started losing faith in my original dermatologist. With my inconclusive biopsies and my ongoing symptoms, she gave me a tentative diagnosis of Erosive Oral Lichen Planus. There are no FDA-approved medications for the disease. It can be difficult to confirm by biopsy and hard to treat. But, it seemed
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Life as a Medical Mystery: Part 2
A first attempt with biopsies The oral biopsies I had done in January 2024 should have opened a door to answers and understanding of my medical condition. Sadly, they had the opposite effect; sending me deeper into a spiral of misery and confusion. I’ve learned so much since those early biopsies. If I knew then
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Autoimmune biopsies chronic illness diet exercise fitness food grief health healthcare infusion infusions insomnia life lesson Medical Mystery mental health misdiagnosis mouth sores mucosal blistering Nutrition patience pemphigus prednisone PTSD rare disease rituximab self advocacy steroids trauma treatment
How Weird 