During a random conversation, a family member, one of the smartest little humans in my life, told me about the books she’s been reading. One is nonfiction and the other is young adult fantasy. She was fascinated by them because, coincidentally, they shared the same theme: that the circumstances, events,…
What would you do if you were stuck in the grocery store parking lot, crippled by locked joints? Imagine your hands and wrists frozen after parking the car, with toes cramped, shifted apart, and bent. Perhaps your ankle rests painfully against the floorboard. You fear that shifting your weight could…
As months turn into years and years turn into decades of living with systemic lupus erythematosus, we begin to record what helps mitigate or temper symptoms before they turn into a full-blown flare. In fact, it often feels like we have an entire armamentarium of health strategies we rely…
“If you don’t answer to anyone, you will start lying to yourself,” a financial consultant once explained to me. His wisdom, albeit a bit sharp in tone, transcended his focus on money management into my focus on health and disease management. In explaining how to see results in money…
Let’s start with a little story, shall we? It’s currently 142 F outside. OK, that might be a slight exaggeration, but not by much. I’m living through one of the most brutal heat waves my area has seen in years, hitting over 105 F daily. Like clockwork, my body has…
Pain wakes me at 3:18 a.m., reminding me that lupus stopped me from working. “Yeah, I know,” I sleep-whisper and stare at the digital clock until box breathing cools me back to sleep. An hour later, 4:30 a.m. is on the clock, and inner-me rebuts, but it didn’t end…
It seems like there should be some decisions a person never has to make for themself. Standing before the consultation window at the pharmacy, I found myself faced with a question that made me wonder: Is this a real question? Am I supposed to know the answer to this, too?…
I think I’ve fallen in a “Doctor Who” rabbit hole. If you’ve ever watched the show, you know the TARDIS, whose letters stand for time and relative dimension in space. On the outside, it looks like a simple blue British police box, plain and unassuming. But step inside,…
For many of us living with a chronic illness, there typically comes a time when we desire to share our story, help others, and dip our toe into the pool of advocacy. Having met thousands of people with lupus over the past 20 years, I’ve learned that we all…
May is Lupus Awareness Month, and for several reasons, Fred Rogers and his eponymous children’s program “Mister Rogers’ Neighborhood” are on my mind. Fifty-six years ago this month, Mr. Rogers provided testimony to the U.S. Senate Subcommittee on Communications seeking to protect $20 million in federal funding for the…