pemphigus
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Four Months After Rituximab
It’s been just about four months since my second rutuximab infusion. I’ve been fully off all steroids for a little over a week. My pemphigus symptoms are staying mostly in check (knock on wood). I still get tiny, short-lasting blood… Continue reading
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Onward and Upward
So, it’s been about a month since my last update. Things are going well enough that I can finally say I’m cautiously optimistic about my pemphigus progress. I’m down to 2mg of prednisone a day and have stopped using clobetasol… Continue reading
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Perhaps Progress?
It’s been a month since I’ve written. For much of that time, I was deep in the weeds, having setback after setback. It was a dark time. More Ravages of Prednisone In my last post, I wrote about my lab… Continue reading
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Reflecting on Setbacks and Hurdles
One of the most unexpectedly and unintentionally painful things anyone has said to me about my illness came from one of my best friends. About a year into being sick – when everything was still a medical mystery – she… Continue reading
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You Just Don’t Understand
Humans desire love and understanding. We want the people close to us to validate our feelings. We want to be seen – fully and authentically. When you’re diagnosed with a rare, serious, incurable disease – you need that understanding more… Continue reading
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Hopes and Intentions for the New Year
I used to be great at making plans and following through with them. I was the kind of person who set New Year’s resolutions and actually kept them. I lost 100 pounds and kept it off. I hiked 1,000 miles… Continue reading
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2024 – High Notes From a Terrible Year
I’m not going to sugarcoat anything. This year was undeniably and undoubtedly the worst year of my life so far. And yes, I say so far because I know things can always get worse. If I’ve learned anything, it’s that… Continue reading
How Weird 