Celebrate With Me - a column by Candace Semien

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…

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…

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,…

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…

Like any relationship, a patient-doctor one has rules about how to engage and communicate. They’re typically in writing, bearing the patient’s signature of agreement. I’ve seen the rules posted on walls as the U.S. Patient Bill of Rights and Responsibilities, but there are also unspoken rules around trust and admiration.