Medical Mystery
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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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Pemphigus… What the Heck???
Everyone has heard of autoimmune diseases, right? About 8% of the U.S. population has an autoimmune disease, and the prevalence is only growing. We’ve all seen a million TV commercials for drugs to treat psoriasis or Crohn’s disease or rheumatoid… 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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PTSD as Part of the Picture
I have PTSD. I process everything that happens in my life through a distorted lens of past trauma. It impacts my behavior, my emotions, and my ability to make sound decisions. It’s a big mental mess, but I’m working on… 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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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… 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
How Weird 