When people think of systemic lupus erythematosus (SLE), they often only think about the “butterfly” rash, severe joint pain, pleurisy, or kidney problems. But for many of us living with lupus, the most insidious damage is happening in the brain. Inflammation of brain blood vessels can cause…
Last month, “CBS Evening News” co-anchor John Dickerson shared a conversation with social scientist Richard Reeves about making “a simple act of connection.” What Reeves suggested is for people to be proactive and check on one another. He said, “Say, ‘How you doing?’ And then ask, ‘How you…
Once you receive a diagnosis of lupus, it is difficult to avoid its chronic impact. The disease stays on your mind and affects your perceptions and decisions. You may not be in a flare or “suffering,” but you are often still experiencing multiple, full-body symptoms. When these symptoms are…
When you live with a chronic illness like lupus, you eventually learn that energy isn’t just something you “have” or “don’t have.” It’s sacred. It’s currency. And when it’s gone, it’s gone. Unlike a phone that you can plug into the wall to charge, our bodies don’t always bounce…
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…
