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.
“You’re only as old as you feel,” as the saying goes. Unfortunately, since being diagnosed in 2001 with granulomatosis with polyangiitis at age 19, I’ve always felt older than I actually am. My first experience with that feeling was at diagnosis. The doctor who diagnosed me after a five-day…
Rare is steak cooked to an internal temperature of 120 to 130 F. Rare are opals found in the Nevada desert. Rare is finding out who left the toilet paper roll empty. Rare is not me. I have spent my life trying to be typical and to fit…
Last summer, my husband and I bought an RV to drive across the U.S. to see my dad. My mom died last spring, and we hadn’t yet traveled to visit my father in Florida, because of COVID-19. I really needed to hold my dad’s hand and hug him. I…
I have a rare illness called eosinophilic granulomatosis with polyangiitis, or EGPA. It causes an increased number of white blood cells known as eosinophils, which can cause significant inflammation in my organs and my small and medium blood vessels. EGPA has affected my heart, lungs, sinuses, gastrointestinal system,…
A positive attitude has helped me get up each day and face the world. I know I feel stronger and ready to take on the planet this way. I can advocate for other patients and model that life is still worth living, despite having a chronic illness. A positive attitude…
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