As I write this, my heart is racing. My head is pounding. I feel like my world is spinning so fast I can’t keep up. I’ve actually just gotten good news, but the anxiety that preceded it takes much longer to subside. I generally subscribe to the “hope for the…
One of the most stressful aspects of rare disease life is visiting a new doctor. You’d think we’d be used to it — after all, we do it often enough. But between the sheer volume of information we have to share and the limited time we have to share…
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…
I think I need a Bubble Wrap suit. Yep — a full-sized, head-to-toe suit made of industrial-strength protective Bubble Wrap. That (not Obi-Wan) just might be my only hope. My medical records indicate that I’m a “fall risk.” As much as I hate seeing that, I get it. I fall…
Early on in my chronic illness journey, before I knew I had sarcoidosis, I was struggling. I desperately sought answers about what was happening to me, not only physically, but also in other ways, like what my life would look like moving forward, how much of it I’d lose,…
Call me naive. For years, I never understood why my cousin posted the time on Facebook every afternoon. I thought the Doobie Brothers were just a musical family, like the Pointer Sisters or the Jonas Brothers. (They weren’t.) My husband often teases that I grew up “under a…
I think I’m the least prepared I’ve ever been for Sarcoidosis Awareness Month. Or perhaps I’m the least busy I’ve been on these occasions. I know a lack of preparedness and a lack of busyness aren’t the same, but something in my head makes them both feel like a…
When I was in high school, my mom and I began an ear-piercing competition. When I came home for breaks during college, we checked each other’s ears to see who had more. In grad school, she told me I was forbidden to pierce anything other than my ears. That’s when…
When I woke up this morning, my husband was in the living room watching “Star Trek II: The Wrath of Khan” (1982) for the umpteenth time. It was toward the end when — don’t worry, even though the movie is over 40 years old, I won’t offer any…
I was watching the “Morning Joe” talk show this morning — well, not really watching; it was more like background noise while I worked on a few things — when something caught my eye (or, more accurately, my ear). The hosts were introducing a guest who’d just…
Get regular updates to your inbox.