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…
I never expected that wearing masks while I traveled would be my trendsetting mark on the world. I never expected the world to join me in wearing masks during cold and flu season. In 2020, COVID-19 changed all that, and I became a trendsetter. For a decade now, I have…
Battling an autoimmune condition is difficult enough, but when my own brain decides to work against me, it can be even more challenging. Anxiety is one of my biggest foes, and while I have gotten better at handling it, I have yet to conquer it. I went to my…
This week, my eosinophilic granulomatosis with polyangiitis (EGPA) decided to remind me that it had not gone away and was ever-present. I could feel my symptoms becoming more problematic. I tried to ignore them. The peripheral neuropathy in my feet became more noticeable and interrupted my sleep. My asthma…
“You’re braver than you believe, stronger than you seem, and smarter than you think.” These words are on a plaque that hangs from my medicine shelf. I see them every day as I take my morning and evening medication. They serve as a reminder that I can continue to…
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