Tag: rashes

Dermatomyositis symptoms flare up as summer arrives

Posted on Posted in autoimmunity, dermatomyositis, dermatomyositis, symptomsTagged , , , , ,

My dermatomyositis symptoms have flared up again. My forearms are dry and scaly. A tiny bloody rash appeared on my tricep. I have pain in my chest. My breathing once again feels shallow and tight like I’m being squeezed by some desert-loving constrictor–a kingsnake, perhaps.

dermatomyositis tiny bloody rash tricep
The darker spot toward the bottom of the photo (not the darkest ones on the right, which are moles) is a bleeding rash from my dermatomyositis. It may have been triggered by increased sunlight as the days grow longer and the clouds are few. Readers will also see the discoloration in my skin,. It has been a permanent feature since last April.

Local temperatures soar. Bodies easily sweat. The cloudless skies bathe the Sonoran landscape in blue shadows and bright reflections requiring sunglasses and white balance corrections. The sun rises so early I found myself awake at 4:45 a.m. Summer is on the Arizona horizon.

I wonder if these events are linked: Increased sun exposure causes my autoimmune condition to flare up.

Doctors will certainly think so, but the flare ups could just as easily be work stress. I had to get two proposals and a notice of intent to propose out the door within six days of each other. I feel behind. I feel exhausted. Despite taking melatonin, I woke up in the middle of the night, wondering if we forgot to upload the correct version of the project description.

What of my medicines? I am now on just 7.5 milligrams of prednisone, the lowest dose I’ve taken since last June when all this turned for the worst.

Thursday, I visit my rheumatologist. Hopefully, we can figure something out. I cannot live through the hell that was last summer: the itching, the burning, the gasps for air as I wait for lab test results and wonder if I truly am months away from death.

I remind myself I’m fighting this. I can fight this. I will fight this. I did it before. I can do it again.

Dermatomyositis and muscle weakness

Posted on Posted in amyopathic dermatomyositis, autoimmunity, dermatomyositis, symptomsTagged , , , ,

Nine out of ten times, dermatomyositis presents with heliotrope rashes and muscle weakness in the upper arms or thighs. Only weeks ago, I thought was the one in ten, the rarest of the rare in which my immune system attacks my skin, but not my muscles. Last week’s visit to the neurologist, however, shows I and my doctors were wrong: An electromyography (EMG) revealed inflammation in my biceps, triceps, and shoulder blades.

Though my immune system has caused some muscle weakness, the damage is minimal.

Truthfully, this changes little. I have long suspected something was going wrong with my muscles. In February, I easily could complete 30 consecutive push-ups. Then the rashes came. And by June, I couldn’t complete one.

Preliminary tests for muscle weakness involve the doctors checking clinical levels of strength. Can I stand up without exhausting myself? Can I push the doctors arms away with mine?

Both my rheumatologist and the dermatomyositis expert at Mayo Clinic checked these. But as the dermatomyositis expert explained, in rare cases, when this autoimmune disease affects strong young men, muscle loss is not obvious, especially in the clinic. For that reason, he ordered the EMG.

Minimal muscle weakness, maximum treatments

I am glad he did. Without the EMG, I would have had no evidence of muscle loss beyond push-ups and dumbbells.

Again, this changes little. The damage to my muscles is minimal. The neurologist explained muscle involvement in dermatomyositis as not an either/or, but as a spectrum and said I am still 90 percent amyopathic. That is, the inflammation in my arm muscles is minimal.

I am not letting this disease stop me from being and feeling like a man.

Plus, I have been living as though I my muscles are under attack. I take as much creatine as an Olympic bodybuilder. I changed to a protein-heavy diet. I go to the gym at least four days a week. I spend an additional day or two strengthening my core. I am not letting this disease stop me from being and feeling like a man. I can now do five push-ups in a row.

Itching and burning and the rashes from hell

Posted on Posted in dermatomyositis, existentialism, kyphosis, Scheuermann’s disease, symptoms, treatmentsTagged , , , , , ,

The severe itching has returned. My arms are inflamed and covered in rashes that resemble first degree burns just before they turn into blistering, second degree ones, that vivid ruby rose color that looks like I feel asleep in the Arizona sun. I feel like a shell of the creature who was once called a man.

Today marks week five since I started taking hydroxychloroquine. It is not yet working. I try to stay optimistic, to remind myself many patients only notice effects after six weeks, most notice nothing until months later. But until then, am I supposed to live in hell?

Meanwhile, my primary rheumatologist has been tapering me off steroids, slowly reducing the dosage to keep my immune system from overreacting. Taking corticosteroids for more than a few months could cause damage to my immune and endocrine systems.

Must I choose between damaging my body years from now and living in this itching, burning hell? Is the price of a quality life today a shorter tomorrow?

Some evenings, I curse my doctors’ treatment plan. Other evenings I curse myself. Others still, I curse whatever natural or supernatural entity decided I must suffer yet again, as though Scheuermann’s disease wasn’t enough, as though ADHD and depression haven’t been enough, as though life isn’t already hard enough. What kind of being would cripple his creation with a rash that makes you wish you were dead?

In reply to some twisted medical corollary to French mathematician and philosopher Blaise Pascal’s famous wager, I told my girlfriend I would gladly trade a long life in hell for a short one in paradise.

Must I make this choice?

To quote Djimon Hounsou’s character in Gladiator, Juba, “Not yet, not yet.”

One more week. Can I make it? Yes, but will six weeks be enough?

The spirituality and sensitivity of broken skin

Posted on Posted in autoimmunity, dermatomyositis, existentialism, symptomsTagged , , , , , , , , ,

I look at the rashes covering my skin. I wonder if people notice, if the woman looking at me at the gym thinks I’m cute or just some monster.

Is God punishing me? Mocking me? Testing my faith? Has the devil come to collect the bill for the body I sold to keep my soul? Has Anubis weighed my heart against a feather and sentenced me to a watery, crocodilian hell?

Am I an evolutionary accident, some creature that should never have survived infancy, some being that should not be? Of the 20,000 genes in my body, should a single mutation change render me less than human?

Most people ask if I’m sunburned. I try to be polite, but how do I explain autoimmunity to the grandmother at the dermatology clinic, to the child at the store?

Before my first visit to the dermatologist two months ago, the rashes itched and burned so horribly I could not sleep—even with two antihistamines and melatonin. I could not sit in my own home with the fan on because the moving air scratched and irritated my skin. I hid under blankets to relieve the pain.

I’ve never been more thankful for prednisone.

The Hebrew Bible refers to skin diseases as tsara’at—meaning to be thrown down or humiliated. Those afflicted with these conditions were considered ritually impure; presumably, their disease was God punishing them for behaving immoral.

The Bible is not alone in its discussions of skin diseases nor are the Jews unique in their treatment of persons with them. As Philip D Shenefelt and Debrah A Shenefelt point out, across cultures, humans feel a spiritual connection with our largest organ, perhaps because it is the part of us most visible, and “persons with visible skin disorders have often been stigmatized or even treated as outcasts.”

Though we understand more than ever about skin diseases, though modern persons are not ostracized or forced to shout “unclean” as they walk down the street, I often still feel judged—even if the only one judging is the person looking back at me in the mirror.

Since being treated with corticosteroids, my symptoms have improved. My face is mostly clear, save for my Rudolph nose. The itching and burning is a fraction of what it was. I sleep better. I walk taller.

And hopefully, in time, my doctors and I will find a treatment to make my skin look new. In time, I will again feel human.