Every day, and every minute of every day, systemic lupus erythematosus makes you sick. I get it. It’s not the reality that anyone plans for. It’s not some punishment for a supposed sin. Nor does it happen because we’ve intentionally exposed ourselves to toxins or malnourishment. Lupus. Sjögren’s…
Hester Prynne is being condemned for a private act that became a public sin. After being freed from jail, she’s led to stand on a scaffold before a crowd of villagers. She’s holding her 3-month-old baby and wearing an embroidered letter “A” on her cloak, both attesting to what she…
More than 20 years ago, Christine Miserandino explained living with systemic lupus erythematosus, the most common form of lupus, as having only a metaphorical “12 spoons” of energy a day. Her spoon theory does a great job of representing the tightrope walk of survival that…
Summer news reports show that COVID-19 is surging again. The World Health Organization has declared the mpox outbreak a global health emergency. And human parvovirus B19, which can cause fifth disease, is spreading across the U.S. Scientists are finding that, in some cases, infections from viruses…
Few things are more enjoyable to me than reading and listening to great stories. Reading until I’m practically hypnotized is top-tier entertainment. In the physical process of reading, the eyes move left to right, capturing paragraphs and pages that trigger imaginative connections of sounds, emotions, and images. Our energy shifts…
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…
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…
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…
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…