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.
-
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 blisters – mostly on my tongue – from time to time. They’re painless, but they’re
-
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 completely. My pemphigus symptoms are mostly at bay. There are a few stubborn spots that
-
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 work showing high cholesterol. The next week, I found out I had high eye pressures
-
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 said, “You were always my role model for wellness, good health and fitness. How did
-
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 than ever. Unfortunately, getting the support you need during a difficult diagnosis is extremely complicated.
-
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 in a year. I paid off a mountain of credit card debt. I was really
Subscribe
Enter your email below to receive updates.
Contact Me
Your message has been sent
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 