self advocacy
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The Irony of my Diagnosis
The ultimate irony of my diagnosis is that I had it right all along. I self-diagnosed correctly at the very beginning, but it still took a year and a half to get a formal diagnosis from a medical professional. My… Continue reading
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No Thank You – Unsolicited Health Advice
I know they mean well When your friends and acquaintances learn that you’re struggling with a long-term, serious medical mystery… buckle up! The unsolicited advice is coming in hot. Not only will the well-meaning attempt to diagnose you, they’ll endeavor… Continue reading
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Chronic Illness and the Grieving Process
Being diagnosed with a life-threatening, chronic illness transforms you. It’s elicits an unfurling spiral of loss. You can’t help but feel a full spectrum of negative emotions as you watch your body and your life fall apart. For me, grief… Continue reading
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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.… Continue reading
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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… Continue reading
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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… Continue reading
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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.… Continue reading
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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… Continue reading
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Life as a Medical Mystery – Part 1
Existing as a medical mystery for sixteen months has been a nightmare. I am hopeful I finally have a definite diagnosis, but I haven’t quite allowed myself to put full faith in that answer. I would love to confidently start… Continue reading
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Weird: How it all started
I never thought I’d be unique in such an awful way. I never expected I’d baffle so many doctors. I had read about other people’s medical mysteries, but becoming one was definitely not on my existential bingo card. I had… Continue reading
How Weird 