When the ‘ugly-wuggly’ signs of a lupus flare start peeking out

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 trying to find terminology that accurately identifies what it feels like to embody chronic diseases, but nothing seems accurate — especially when it comes to lupus, which can cause organ failure.

What do you call a person living with a disease that can kill them?

I don’t want to be called the name of the condition, like a “lupuser” or a “lupusan.” The term “warrior” doesn’t fully fit, as there’s a level of valor that’s missing from my life. “Survivor” is the most daunting, and “lupie” and “spoonie” feel a bit too comical or playful. I’ve not heard many people use the term “victor,” as most days hold little triumph.

But nothing stops the bounce in my stride quite like the first signs of a lupus flare peeking out for the world to see. Then, the invisible survivor-warrior-lupie-spoonie-victor turns into an unmistakable host, someone controlled by the disease. I slowly start to emit the ugly-wugglies of lupus.

Last month was plagued by the uglies, even though I’d had some of my best erythrocyte sedimentation rates (a measure of inflammation) and steady antinuclear antibody markers (an indicator of lupus activity). I’d started a new infusion regimen and readjusted my work projects — again — to accommodate my limited abilities. That’s when my lupus symptoms returned ever so slightly.

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Symptoms creep in

Raynaud’s phenomenon causes my fingers to turn purple. It is eased with warmth and essential oils. (Photos by Candace Semien)

First, I felt pricks and burning in my fingers and toes, as if to say, “Eh, eh, eh, ma chère. We’re not doing that.” Over the span of a few days, a tingling sensation manifested behind my ear then gradually triggered twitching and blurred vision in one eye. As a precaution, I slightly increased my prednisone dosage, and once the sharp tingles began, I slowed down and ultimately stopped working.

I asked my rheumatologist about possible side effects of the new infusion medication, but I believed the prickling and burning sensations in my toes and fingers were caused by increased disease activity from both lupus and Sjögren’s syndrome.

All of these symptoms remained invisible for weeks — until they weren’t.

The first visible sign was the eye twitching, which became noticeable to others as it intensified. Then, I developed locked fingers and toes as well as leukonychia, which made all my nail plates white. I used to paint my nails with white, glossy polish to hide the ugliness after realizing how many people noticed my sickly nail beds.

The melanin in my cheeks began to take on a maroon hue often overlooked by doctors, though the world around me notices the wolf outlining my face. My walk became slower, steps heavier with maladies. A sharp pain ran down my back and my mind shot orders I couldn’t quite follow:

• It’s time to rest.
• Slow down these symptoms.
• This can get painful.
• Find your teas. Ice packs. Pickles. Meds.
• Get grounded.
• Hum. Hum.
• Walk more slowly, laugh, breathe more deeply.
• Think of something to celebrate.
• Remember every moment that brought joy.
• Breathe.
• Eat slowly. Smile.

Unbeknownst to those around me, I was fully in temper-this-flare mode. (Ah, so that’s where the “warrior” and “survivor” labels come in, huh?)

I had to gain control.

Pain was seeping in. My nails were white and my cheeks were maroon. My gait was strained. The palm side of my fingers had turned purple due to Raynaud’s phenomenon. I chuckled at the sight and told my daughter, “The uglies are taking over,” though she had no clue what I was referring to.

I am the host of all of these diseases. The sum of them all. And, sitting outside a Cajun restaurant in North Louisiana, I, the victor-lupie-spoonie-survivor-warrior-lupusan-lupuser, am on full display.

With these ugly, purple fingers and white nails that have locked into an unmistakable paralysis, I dig around the books in my bag to find my evening medicine. After taking it, I pull out a perfume roller that contains a hemp-infused essential oil blend for pain relief. Its smell is pure bliss and eases the twitching in my eye. The warm tingle of the oil soothes my psoriatic arthritis, and I allow my hands to hold each other.

I obey the commands that my inner doctor repeats while listening to my daughter talk and laugh about summer travel, cottages, and the mural of irises painted on the restaurant’s wall. I don’t know how quickly after, but soon I’m celebrating that my symptoms are quieter and the uglies have become a little less wuggly.

Won’t you celebrate with me?

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.