Columns

First in a two-part series. Before I was diagnosed with eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA-associated vasculitis, I had lived overseas, in France, Sweden, and the U.K. I’d also spent several weeks in Haiti doing research and providing training in schools following that country’s devastating…

I seriously did not have time for this. I did not have time to get sick. Not now. Those were my thoughts when I finally received a diagnosis of eosinophilic granulomatosis with polyangiitis, or EGPA, during the busy holiday season in late 2015. I had my kids’ holiday…

As a child, I always used to check out travel and cooking books from my local library. I’d daydream about foreign places and exotic foods and couldn’t wait to see the world. Some might say I had my head in the clouds. Soon after graduating from college, I married and…

Depression is a challenging illness to manage. When I have a depressive spell, it feels like I’m stuck in a cold, gray fog with no way out. No matter what I do, I can’t see past the gloom. For the past two weeks, I’ve been lost in it. Dealing…

I’ve had eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA vasculitis, for 17 years. After my diagnosis, I had to change my life and reinvent myself. At the same time, I was grieving my life before EGPA and educating myself about my new normal.

Do you remember when you were in school and a field trip was planned? I remember the excitement these trips would bring. The destination wasn’t important. The special lunch, the new clothes, and the thrill of the unknown excited me. My lunch was full of things I normally wouldn’t eat…

I remember the early days of my vasculitis diagnosis, when high dosages of steroids and chemotherapy robbed me of joy. My physical self was suffering to the extent that my mind and spirit broke with it. For several months, I woke up in the morning and had to sit…

“Hey, how are you doing?” It’s a common question that we use to greet everyone from close friends to the cashier at a local coffee shop. If you are a rare disease patient, you’ve likely encountered this scenario at some point on your journey. Someone may ask this basic…

As I approach the 15-year anniversary of my vasculitis diagnosis, I’ve started to contemplate the lessons that battling this disease has taught me. There are many, though some stand out. As an athletics coach, I’m always looking for ways to learn from experiences. My own coach for my decade-plus…

The first week of February, I turned 35. It was a typical, uneventful adult birthday — especially because it fell on a Monday. I happened to be traveling back from a weekend of out-of-state work, so besides some good wishes from family and friends, there wasn’t a huge celebration. (At…