Can you play outside with your kids? Do you need an ice vest? Did you run an ultramarathon in the desert? Are you able to work full or part time? Are you living or barely surviving? The answers to these questions will be different for many of us with…
Spring has arrived here in Texas. The trees outside my windows have lost their winter grayness and once again have turned my home into a treehouse. It’s the time of year when poets and songwriters tell us that new beginnings, and maybe even new love, are in the air. This…
The COVID-19 lockdowns had just started, and small businesses around the world were shuttering at an alarming rate. Many weren’t only temporarily adjusting, they were closing for good. Being in quarantine meant no customers wandering around downtown to shop on a lazy Sunday afternoon. There were no lunchtime meetings,…
Note: This column describes the author’s own experiences with prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Living with myasthenia gravis (MG), or any rare disease, brings physical and emotional challenges. Since my diagnosis in 2020,…
Last month, when my son, Caden Degen, turned 21, I celebrated it publicly by acknowledging my perspective on what it was like for him growing up, given my myasthenia gravis (MG). This month, he wanted to share his own thoughts, so we communicated via email and phone conversations…
Years ago, a colleague shared her morning ritual with me. After waking, she thanked God for restful sleep, the excitement of a new day, and the caring people in her life. I adopted this ritual. Each morning, I’m reminded that the new day is an adventure. The little boy in…
I’ve lost 20 pounds in three months. Crazy, right? In previous columns, I discussed some of the “aha” moments I’d experienced while taking high doses of prednisone to manage my myasthenia gravis (MG) symptoms. I gained weight — a lot of it — and blamed the medication.
Guess what I did last week? I took a shower standing up! Who cares, right? Well, I do. Because it was a win, however small. When you have a rare disease like myasthenia gravis (MG), the ability to celebrate big wins becomes a rare event of its own. Those…
We all do it. There’s a reason we have the phrase “keeping up with the Joneses,” which everyone knows and understands. For some reason, we want the outside world to see our lives through a specific viewfinder, one that shows the highlights with filters. Because of this, as a society…
Pulitzer Prize-winning author Frank McCourt once said of his fellow Irishmen, “I think there’s something about the Irish experience — that we had to have a sense of humor or die.” The tragic nature of Irish history certainly tested the ability of the Irish to maintain any sense of…
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