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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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 we simply cannot predict our futures – you’ll never see what’s coming! 2024 was full
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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 regular steroid use into the cocktail of factors preventing me from sleeping soundly. On a
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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 of my immune system, so I’m in a bit of a medical isolation. I can’t
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Rituximab Round Two Wrap-Up
This week, we traveled back to UNC-CH Medical Center so I could have my second rituximab infusion on Tuesday. The initial treatment protocol for pemphigus is just two rounds of infusions, given two weeks apart. For now, I’m technically done with treatment. The second round was much faster than the first round, but overall it
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Triggers – When a Good Day Turns Bad
I’ve been having mostly good days lately. My pemphigus symptoms are much improved thanks to the daily high doses of prednisone I take. I can eat almost all foods again. I feel good overall – no fatigue or pain. I’m able to hike, cook, and work. The odds of reaching remission (even if it’s likely
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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 am a NOW person. This personality trait has upsides, but it also created a ton
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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 