Columns

Spoiler alert: I think, in the end, only the person living with a chronic disease can soothe themselves. The other day, my wife, Pam, and I had one of our car conversations. You know the kind — where the road ahead somehow makes it easier to see things clearly. Sometimes…

I’ve come to realize that there is no single way to live with a chronic illness like ANCA vasculitis. There are countless realities and processes people use to navigate such a life-altering diagnosis. Some dive into research, anchoring themselves in science, facts, and clinical studies, finding comfort in…

Sometimes I think back to when I first got sick and realized that not only was my chronic illness not going away, but I could no longer do my job. I was running a large nonprofit serving people with Parkinson’s disease and other movement disorders. I loved it. We…

What is it with us humans? It is a curious phenomenon that we generally deem situations, interactions, gifts, successes, or help from others as valuable only if they’re epic — dismissing the baby steps, small successes, and brief connections as if they’re not substantial enough to warrant celebration. Sometimes we’re…

We’ve all heard the phrase “what a difference a day makes.” That couldn’t be more accurate for someone with vasculitis or any other chronic disease. Some days can feel as if they last for weeks or months, or never seem to end. Other days fly by in a minute. For…

It’s hard not to compare ourselves with other people living with ANCA vasculitis who have benefited from medications and treatments. Comparing is human nature — and the cause of much suffering. It’s particularly hard when we’re experiencing a flare or side effects of our tough medication regimens. Seeing people…

This February marked four years since the day my world — our world — changed forever. For the previous 11 months, my wife, Pam Squires, and I had been stuck in a relentless loop, a medical maze with no clear answers. Fifty-seven different trips to the hospital or doctor’s office.

A diagnosis of ANCA vasculitis can drastically change our world and our priorities. We may have to adjust many aspects of our life, but do we have to change our hopes and dreams? After my diagnosis of eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA…

I recently hit a huge milestone: Eighteen years had passed since my first symptoms of eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA-associated vasculitis, began, and it was the 17th anniversary of my diagnosis. My EGPA has been through many stages of growth: sleep-deprived infancy,…

Last in a series. Read part one.  In my previous column, I discussed how I plan for international trips with eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA-associated vasculitis (AAV). Planning an international trip takes forethought and an awareness of potential pitfalls. Once you arrive at…