As I type this from my living room, all I can think about is that I shouldn’t be here. I should be at the hospital getting my weekly infusion. I should be laughing with the nurses, still amazed at how much easier it’s been since I had a port-a-cath inserted…

Years ago, I heard someone in the chronic illness community say they were “medically retired.” It was before I had fully accepted the idea of being disabled, and I thought it was the greatest euphemism I’d ever heard. Until recently, that’s how I described myself, too. But now that…

More therapies are now available for the 30 million or so people with rare diseases in the U.S. than ever before, and millions of dollars are being invested in clinical studies that will test new ways of evaluating — and advancing — potential treatments, including the use of natural history…

Boarding an airport shuttle bus at 3 a.m. on a recent Sunday, I didn’t expect much in the way of conversation when I greeted the driver. I thought I’d receive a grunted “hello” in response. But instead, I got a talkative young man with a dream. Dreaming big During the…

It began as just a typical cough. At first, I thought it was related to a common cold or some type of seasonal allergy, and I expected it to last only a week to 10 days. Over time, it became a hacking cough, deep in my chest but unproductive. Until…

Runny nose, sneezing, coughing, and itchy, watery eyes. Getting a breath of fresh air ain’t what it used to be. Spring allergy season is underway in the U.S. And it’s going to be a lengthy, brutal stint for those of us in the East, according to AccuWeather meteorologists. …

If the proverb “misery loves company” holds true, my brother, Antony, and I will be inseparable this NFL season. On Sept. 15, we watched the quarterbacks of our favorite teams leave the field with injuries, taking with them the New Orleans Saints and Pittsburgh Steelers’ favorable Super Bowl odds.

No, not that one. The other day, I Fell and Fractured my Foot (though I admit I probably said the other F-word a few times when it happened). I sprained my ankle, too, just to make it more Fun. It was the Fifth metatarsal on the outer side of my…

People are always surprised to hear that I travel from Pennsylvania to Ohio for medical appointments. Whether it’s an hour-long flight or a seven-hour trip by car, they think it sounds like an inconvenience. But after months of seeing local physicians, I’ve come to appreciate how much easier my out-of-state…

The other day, I took a 20-minute drive to a local lake. During the summer season, the location is crowded and busy, but after Labor Day, it’s quiet and tranquil. Now that fall has arrived, the scenery is beautiful as the leaves change their colors. I sat on a bench…