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…
Columns
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…
Dating can be both a thrilling and nerve-wracking experience. Having a chronic condition certainly adds extra layers of complexity to the mix. I met my husband over 20 years ago, shortly after I was diagnosed with lupus. My illness was out of control at the time, so I was…
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…
Earlier today, the speaker of a faith-based class I participated in was discussing the ancient Greek term “parakletos,” which meant “advocate.” My ears perked up, as advocacy has become such an integral part of my life. The speaker explained how the term also meant “helper, counselor, intercessor, or someone who…
Whether you’re healthy or living with a chronic illness, navigating a new friendship is always a delicate dance. For those of us with lupus (or possibly multiple autoimmune diseases), it can be difficult to explain why we’re suddenly MIA for days, or even weeks, at a time. Welcome to…
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…
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…
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