Dermatomyositis symptoms flare up as summer arrives

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.

Searching for motivation

Finding motivation to write the last month has been impossible.

At work, late May deadlines creep closer and closer. Days in the office lengthen. Stress increases. Dates on my Outlook calendar disappear. I pine for a vacation that seems to never come.

I want—no, I need—time to be alone, to think, to forget everyone else’s problems and focus on my own. I want to feel truly human, to remind myself life has to be more than just a series of succeeding weeks at a desk and weekends at a grocery store or a bar.

My suppressed immune system spent the past two weeks battling a virus. I had to down cocktails of cold medications to persevere through back-to-back meetings, only to come home and crash on the couch to reruns of House, MD and made-for-Netflix British teen dramas.

Motivation in pill and liquid form

Meanwhile, my body and brain are still learning what to do on less than 10 milligrams of prednisone. Systemic corticosteroids make me feel elated, energetic, invincible. For almost a year, I have depended on them, in part, to counteract the fatigue caused by an overactive immune system. As my doctors continue to taper me off, I wonder if I have even been myself the past year. Were the steroids the only reason I was able to maintain a job, a side gig, a new novel, a workout regime, and a blog?

This returning fatigue has left me reaching for lattes, London Fogs, and liquid energizers as I hope that maybe, just maybe I’ll find an evening or a lunch break to pound out a paragraph or three. Hell, this lame Saturday afternoon keyboard confessional was brought to you by Monster Energy Ultra Violet.

Writer’s block: a psychologist’s view

When I work with university faculty, I preach against procrastination and what psychologist Paul Silva in How to Write a Lot calls “specious barriers,” the excuses we make for ourselves for not writing: I need more time. I need to do more research. I need a new computer. I need inspiration.

Paul Silva's "How to Write a Lot" is for anyone making excuses for themselves on why they can't find the time or motivation to write.
Paul Silva’s How to Write a Lot is for anyone making excuses for themselves on why they can’t find the time or motivation to write. He prescribes schedules, recommends goals, and helps writers remove what he calls “specious barriers,” or excuses we make for not writing.

Silva’s solutions are simple: Schedule the time. Do the research. Buy a new computer.

He forgives the novelists and poets among us—our penchant for plumbing the depths of the human soul, our unspoken goal “to move readers to tears.” He is even so kind as to compare us to “landscape artists and portrait painters.”

I have never been that kind to myself. Writer’s block may be the curse of all who seek to win with words, but I’ve never believed in curses.

Lacking inspiration? Find it, I say.

Need motivation? Brew a cup of afternoon joe.

But then again, maybe I am too hard on myself. Cannot inspiration be found in salacious British high-school scandals?