Month: September 2018

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?

Finding beauty and inspiration in feeling overwhelmed

Posted on Posted in autoimmunity, existentialism, inspiration, writingTagged , , , ,

Today was tough. I felt overwhelmed. I’m trying to manage an autoimmune disease and four proposals at once. I itched more than usual this week. My hair has started to quickly thin. My rashes flared up. To top it off, dumbass drivers clogged Phoenix roads with accidents, turning a 20-minute drive into a 45-minute commute.

Caspar David Friedrich - Wanderer Above the Sea of Fog
Caspar David Friedrich’s “Wanderer Above the Sea of Fog” depicts man above the choppy seas, as though to say, “I can and will conquer whatever chaos may come.”

For the first time since being diagnosed, I wanted to give up. I didn’t want my life to be going from doctor to doctor, lab to lab, spending every penny I have on increasing insurance copays only for doctors to basically say the same thing week after week until the medications show results.

I’m collecting specialists like preteens collect Pokemon. At first, I thought this could be fun. Like a grueling sports practice, fun has turned into work.

In the past three weeks, I saw a dermatologist, two rheumatologists, and a psychologist. A radiologist reviewed my CT scan. Pathologists analyzed my blood. Thursday, I see my psychiatrist for my ADHD medications. I made an appointment with an ophthalmologist to monitor my retinas because of known side effects from hydroxychloroquine (Plaquenil). Next week, I have an electromyograph (EMG) with a neurologist at Mayo Clinic.

I’m collecting medical specialists like preteens collect Pokemon. At first, I thought this could be fun. Like a grueling sports practice, fun has turned into work.

Turning despair into inspiration

I want more from life. I want friends and strangers to see me not as some guy who battles an incurable illness, but as me—a writer, a thinker, a proposal specialist, an amateur saucier, a wine connoisseur.

I try not to focus on the difficult parts of my life. I try to borrow strength from overcoming my past.

This evening, I channeled my negativity and hammered out almost a thousand words in my new novel, even if they were about my character’s obsessions with Russian vodka and marijuana politics, about him being stood up by a strip-club cocktail waitress.

Writers and artists teach us how to make things beautiful, attractive, and desirable even when they are not.

Writing is what I do. For over fifteen years, it’s what I’ve done when the future seems grim, especially when I feel down. Besides, inspiration has to come from somewhere.

As the philosopher Frederich Nietzsche comments in The Gay Science, art and artists, including writing and writers, teach us “how to make things beautiful, attractive, and desirable for ourselves [even] when they are not.”

Visiting the dermatomyositis expert at Mayo Clinic

Posted on Posted in amyopathic dermatomyositis, autoimmunity, dermatomyositis, dermatomyositisTagged , , ,

Mayo Clinic Scottsdale looks like a corss between a Cold War military complex and a lost Frank Lloyd Wright building.

Mayo Clinic Arizona is nestled on the northeastern edge of Scottsdale in the desert foothills of the McDowell Mountains. Its main structure looks like a cross between an unmapped military complex and a lost Frank Lloyd Wright building. In a nod to Wright’s organic architecture, the campus blends in with the Sonoran landscape; southern Arizona staples like saguaro, pipe organ cactus, mesquite, and palo verde surround it.

My girlfriend and I drive past the sparse vegetation, then park and enter underground, reinforcing my comparisons to a Cold War military site. We take two different sets of elevators to the second floor.

Hospitals rarely, if ever inspire positivity or happiness. Those waiting next to us either have serious health problems or are accompanying someone who does. Many are in wheelchairs. Several are bald. Others, like myself, have mottled skin.

Mayo Clinic in Rochester, Minnesota is, by most measures, the world’s best hospital. U.S. News and World Report rank its sister campus, Mayo Clinic Phoenix-Scottsdale, eleventh in the United States. I remind myself as I look around, wondering how many of these people are here as a last resort.

Mayo Clinic Uber-Rheumatologist, Part I

Just like any other visit to a specialist, after being called back, a nurse measures my height and weight, and I put on a gown. I wait.

The physician’s assistant enters with a stack of paperwork—written testament to the amount of time I’ve spent over the past six months in doctor’s offices, labs, and imaging centers. Unlike many physician’s assistants, this woman’s thoroughness and knowledge of internal medicine is immediately apparent.

After reviewing my medical history, she spends another half-hour examining my muscles, rashes, and lungs. She finds no additional evidence of muscles weakness or lung involvement.

Mayo Clinic Uber-Rheumatologist, Part II

The doctor enters. In my mind, I’ve talked up his reputation and specialty as though he holds all the answers, but as I told my girlfriend that morning, he is not a miracle worker. But he does know more about dermatomyositis than all but a handful of other highly trained men and women.

The rheumatologist re-checks my muscle strength. He remarks my muscle strength is excellent, but unlike my regular rheumatologist, he notes when a dermatomyositis patient works out as much as me, it’s possible people do not notice the muscle regression.

I certainly did. I went from being able to do thirty push-ups to being able to squeeze out three. Of course, that weakness could be from all the corticosteroids I’ve needed to manage my condition.

He surveys my rashes, then says these are classic dermatomyositis rashes. It’s a relief for someone to immediately recognize what I have.

All that said, he agrees with my rheumatologist that I most likely have amyopathic dermatomyositis. He thinks my prognosis is actually quite good and likes my current treatment plan. He nonetheless orders an electromyography (EMG) test to confirm my muscles are in good health and additional imaging to make certain I do not have cancer (10 percent of dermatomyositis patients have cancer).

My girlfriend asks him if my muscles could get worse over time, if my immune system could further attack itself, if this is only the beginning of the end. She wants answers, to know I’ll be around to love her as long as she is to love me.

He cannot promise that. Neither can I. But for now, apart from the itchy, painful rashes covering my chest and arms, I still have my health.