interface dermatitis Archives – Anarchy and Autoimmunity

My nose glows red with a dermatomyositis rash like the mythical reindeer of childhood Christmases past. The moral of that story—at least the CBS claymation version—is that what seems a flaw, what makes one different, what subjects one to ridicule, may be a blessing in disguise. But humans are not reindeer. No bearded, red-suited legend is going to ask me to guide his sleigh come some unforeseen foggy Christmas Eve.

We had a web conference with video at work today. It was all too obvious to me with my nose glowing on the screen, I am not who I was. I don’t feel attractive. I don’t feel positive. I don’t want my girlfriend to touch me. I barely feel human some days.

Doctors tell me in time my hydroxychloroquine will help. It has helped a little, but not enough, not fast enough.

Still, I wait for true relief, for what after six months seems like waiting for a miracle. Still, I taper down my steroids. Still, my nose gets redder. The skin on my jaw itches so much it wakes me in the night.

Am I supposed to find meaning in a red nose? Inspiration? Am I supposed to thank God or curse nature? Am I supposed to search for some metaphorical St. Nick for some purpose in this suffering?

As the philosopher Walter Kaufmann, paraphrasing the philosopher Frederich Nietzsche, observes, nature is too well designed to lack purpose but too ill designed to demonstrate intelligence.

Yet, as intelligent, conscious beings, we think; we feel. Aware of our own fragility in the face of near constant chaos, we agonize; we suffer. Aware of our own imperfections, we criticize; we despair. We seek symmetry, predictability, stability, security, order.

So what do we do with our imperfections? Can we fix them? Should we fix them? Or do we embrace them, stare nature in the face, and tell ourselves we are more than our faults?

I may not have a red nose forever. But right now, looking at myself in a photo or a mirror hurts. I tell myself these rashes are not who I am. But right now, I see only who I used to be. I tell nature I have had enough.

Six months have passed since scaly, irritating rashes first appeared on my elbows and knees. Based on my family’s medical history, my doctor thought it was psoriasis.

Two months later, a much larger, much more painful blistering rash appeared on my left arm. Another massive rash formed across the crest of my shoulders through my lower neck and across my chest.

This third rash—called a shawl rash by doctors—is characteristic of dermatomyositis. Add in what look exactly like all these other rashes along my joints (called Gottron signs), the results from two skin biopsies and from my blood tests, and I thought my dermatologist correctly diagnosed me.

However, yesterday’s visit to a well-regarded Phoenix rheumatologist put me right back where I was a month ago. We know I have an autoimmune disease. But after looking at the pathology reports and examining me, he hesitated to jump to a conclusion.

This is the point in an episode of House, MD, where the title character stares at his patient while his body fails him. Family demands to know what’s wrong. House replies, “I don’t know.”

Turns out, my skin biopsies only rule out psoriasis and fungal infection and confirm my immune system is attacking my skin. But as I mentioned in an earlier post, there are probably more quarterbacks capable of winning a Super Bowl than there are dermatopathologists who can differentiate dermatomyositis from lupus under a microscope.

Blood tests, at this stage, are also inconclusive. My labs show elevated aldolase—an enzyme that helps convert glucose into energy and points toward muscle damage. But all the tests for antibodies associated with myositis came back negative, except for one, which was barely detectable.

The rheumatologist also thinks my antinuclear antibodies are much too high for a typical dermatomyositis case. He also doesn’t think my muscles are weak enough.

All he is willing to conclude is I have interface dermatitis and dyspnea—that’s Greek for a complicated rash and shortness of breath.

This is the point in an episode of House, MD, where the title character stares at his patient while blood appears in the urine bag. Family members demand to know what’s wrong. House replies, “I don’t know.”

“I need answers, not tests, people,” I want to scream.

He re-assembles his team around the glass table, writes “kidney failure” on the white board and pours himself a cup of coffee.

“I need ideas, people,” he barks at his hand-selected team of doctors.

No, my kidneys are not failing. And yes, my doctors know much more about my condition than House’s team does 33 minutes into an episode. But like House, my rheumatologist ordered more tests. I need a CT scan of my lungs. I need my urine analyzed. And my blood has been sent to a lab specializing in detecting antibodies and other biomarkers associated with autoimmune conditions.

“I need answers, not tests, people,” I want to scream.

To make the House parallels worse, my rheumatologist has suggested lupus. Where’s a wise-cracking misanthropic diagnostician when you need him?

Anarchy and Autoimmunity

Tag: interface dermatitis

My Rudolph Nose

Becoming your own House episode