Summer always puts me on high alert, because historically, it’s the time of year when I go into a major lupus flare. Like many lupus patients, sun and heat are my top triggers. In my area of the Carolinas, daily temperatures have felt like 100 degrees or…
I’m holding two bags of medicine recently prescribed to tackle a new condition that has caused me neurological damage. It’s another unprovoked manifestation of systemic lupus erythematosus. It took weeks to secure them because the prescribing rheumatologist was required by some invisible judge named “insurance” to justify…
In November 2020, Louisiana-based counselor barbara w. green shared a warning in an article published on Medium: “Protect your important relationships from the coronavirus, just as you protect yourself from it. Patience with each other has become more important than ever as we face rising anxieties and stress this…
Summer is officially here, and while I’m trying to shield myself from the sun, practically everyone I know is talking about their travel plans. If you follow my writing, you know I’m fascinated by vacations and that I’ve learned a lot over the past 20 years about traveling with a…
There are six white seashells covered in sand that have been washed ashore by Lake Pontchartrain onto Lincoln Beach in New Orleans. It took me nearly half an hour to reach the spot where they lay. Because I was headstrong and ready for a post-flare adventure, I climbed the levee…
It’s that time of the year again, when we “lupies,” “spoonies,” or whatever you want to call us come out waving our purple banners. May is a special month for raising awareness about the life-changing illness that is lupus. For me, it’s a time to go big, as…
Lupus has this uncanny way of presenting me — its host — to the world. Wow. That’s the first time I’ve referred to myself, a person living with systemic lupus erythematosus, as a “host.” Since my diagnoses of mixed connective tissue disease and Sjögren’s syndrome, I’ve been…
Ah, the changing seasons. Spring is finally here, and for many people, it’s an exciting time of rejuvenation, of shedding winter coats and embracing the sun’s warmth. But for those of us with chronic illnesses like lupus, each seasonal change can feel like stepping into a battlefield of unpredictable…
Living with systemic lupus erythematosus and Sjögren’s syndrome is like building a house out of fragments. I gleaned that idea from Paulo Coelho’s 2024 collection of stories, “Maktub.” It’s an inspirational companion to his classic novel “The Alchemist,” published about three decades ago. (Photo…
Disclosing your health status is one of the most fretful decisions in the chronic illness and rare disease stratosphere. For me, an afternoon tea helped to settle the fret, pull together a circle of friends, and set a chain of support in motion. When I faced a confirmed…