self advocacy
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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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Dealing with Insomnia
I’ve never been a great sleeper – mostly thanks to my active and anxious brain. As I got older and started going through perimenopause and then menopause, it only got worse. When my autoimmune disease developed, I had to add… Continue reading
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Darkness Falls on My Mental Well-Being
I’m almost three months into my pemphigus diagnosis. I’ve completed my initial treatment plan. And now, I’m just sitting and waiting the six to eight weeks to see how (if!) it works for me. The treatments destroyed a significant part… Continue reading
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Lessons in Patience
I was not born a patient person. I want immediate responses and action. I hate waiting for things to unfold. I feel uneasy when I can’t visualize the desired end-result early in a process. I’m not a procrastinator – I… Continue reading
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Adventures on the Autoimmune Protocol Diet
Before my formal diagnosis of pemphigus, it felt like everyone was telling me that if I fixed my gut health with a special diet, all my symptoms would magically vanish. Countless people suggested I’d find my answer by turning to… Continue reading
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Advocating for Yourself
When you have a medical mystery or even an established-but-complicated health issue, you are probably going to have to fight like hell to get the healthcare you need and deserve. Some doctors don’t have the expertise to help. Some doctors… Continue reading
How Weird 