“Do you want to get dinner this weekend?” It’s a simple question with a complex answer for a chronic disease patient. What time will we eat? At which restaurant? Does the menu suit my needs? Do I have the budget for it this month? Will I have the spoons…
I’m in the gym, on minute 17 of the stair-stepper machine, exhausted and desperately watching the timer count up to 20. That’s today’s goal: nonstop stepping on levels five and six for 20 minutes. This session is bookended by a 10-minute treadmill warmup and cooldown to get my heart rate…
When the weather is nice, I tend to forget I’m sick. The sun is shining, the yard is green and inviting, and I don’t even have to put on shoes to enjoy it all. (In fact, according to the grounding technique, it might be healthier not to!) There are…
Summer mornings in my house are deliciously slow. Around 8 a.m., the dogs know our first task is to go outside and tend to the plants. I fill a watering can and make the rounds: vegetables, herb garden, succulents on the porch, and tea plants on the patio. The better…
I wish I could go back in time and tell my middle-school self that one day, math would be a positive thing. Algebra, trigonometry, and even physics felt alien to me. No matter how I tried, my brain did not function in a way that allowed me to conceptualize anything…
Receiving a chronic illness diagnosis can be frustrating and full of apparent dichotomies. After years of searching for answers, a diagnosis is a welcome end, but it also signals a beginning. The doctors pronounced my disease to be granulomatosis with polyangiitis (called Wegener’s granulomatosis when I first…
As I was walking around my house today looking at all the accumulated dust bunnies and housework I need to do, I came across my husband’s treasured Kintsugi bowl, and it made me think. In Japan, instead of throwing out broken and battered pottery, the art of Kintsugi is…
What is your diagnosis day? Mine is April 1, 2007. There was irony in finding out I had a life-altering, incurable illness on April Fools’ Day. I accused my doctor of playing a prank on me. I thought he was joking. Before my diagnosis, a few medical professionals…
“You are about to enter another dimension. A dimension not only of sight and sound, but of mind. A journey into a not-so-wondrous land of side effects. … Next stop: the ‘predni-zone.'” I have been living in the “predni-zone” for more than 14 years. In eosinophilic granulomatosis with polyangiitis…
Some days, I wake up and never want to leave the comfort of my bed. I don’t want to get up and struggle through the day. I don’t want to remember that I have eosinophilic granulomatosis with polyangiitis (EGPA), and even simple tasks take more energy than I have.
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