Columns

There’s an intriguing dichotomy in the vasculitis community, and I believe it’s one to be thankful for. My journey with granulomatosis with polyangiitis began in relative isolation. I was unfamiliar with the medical terms and treatments, and overwhelmed by the new normal that stood in front of me like…

“Tell me about your disease.” This should be an uncomplicated request, but it’s not. Where do I start? What do I say that accurately encapsulates vasculitis but doesn’t confuse, mischaracterize, or bore? On the surface, describing my condition is simple: It’s an autoimmune disorder that causes inflamed blood vessels. But…

There’s a customary phrase in the vasculitis community: “We’re sorry that you’re here, but we’re very glad you found us.” Coined by Marilyn Sampson, the founder of what is now the Vasculitis Foundation, it’s a succinct reminder of the dual nature of living with chronic illness. After…

In the vasculitis community, patients often encounter uncomfortable situations. Disease symptoms plague us. Getting used to shifted routines takes some adjustment. And maybe worst of all, new medications can cause debilitating side effects. Among the various unpleasantries, one name makes even the seasoned autoimmune patient shudder with revulsion: prednisone.

A few weeks ago, Kansas City, Missouri, got several inches of heavy snow. It happened on a Friday night, so we locals braced ourselves for a long weekend of staying in and getting cozy. (I’m in the middle of my hibernation month, so I wasn’t planning to go out…

Young people like to ask each other, “If you were an animal, what animal would you be?” My answer is a grizzly bear. They’re powerful and majestic. They sit at the top of the food chain in their habitat. And most intriguingly, they eat for half…

The ancient Greek philosopher Heraclitus had it right when he said, “The only constant in life is change.” This is true for everyone, but especially for patients with autoimmune diseases. Change within ourselves can be mental, physical, or psychological. Externally, it may involve relationships or our living environment. Some types…

I wrote this week’s column from the hospital. I debated whether I should — after all, improving my health is priority number one — but what better way to illustrate the vasculitis lifestyle than reporting straight from ground zero? For almost a week, I had a forceful cough that brought…

Here come the signs: A dry tickle in the throat. A heavy chest. Excessive Kleenex use. Extreme fatigue. By the time, I wake up with a fever the next day, there’s no longer any question — I am definitely sick. My mind…

I can handle November all right. The air is chilly and the sky is gray, but I stay busy and content going through the motions at a manageable pace. December is different. It sweeps in right after Thanksgiving in a manic holiday frenzy, ready or not. Between busy schedules and…