Month: October 2018

Writing and the injustices of rejection

Posted on Posted in writingTagged , ,

Rejection sucks. Being rejected to your face hurts. Being rejected by judges and publishers you never met in favor of less talented authors frustrates and feels unjust.

Last May, I entered my novella, Goddess of the Night, into the industry-led American Book Fest American Fiction Awards. I didn’t expect to win. I wanted to win—even if it was ninth-place runner-up in the literary fiction category. I hoped some publisher would read my book and enjoy it. I prayed they would help me market it. At the very least, I expected an email notifying me I lost.

None of those things happened.

If I lost to Ernest Hemingway—or some other author I respected—I would graciously accept defeat. If I lost to someone more popular, someone more widely read, someone whose books sell, I would understand. But this year’s American Fiction Award for literary fiction went to Ted Morrissey’s Crowsong for the Stricken.

Apparently, Morrissey has a PhD and is a stalwart of the Midwestern Gothic genre (whatever that is). Editors compare him to horror authors Ray Bradbury (Fahrenheit 451) and Shirley Jackson (The Haunting of Hill House, from which Netflix’s acclaimed show is derived).

I read the first few pages of Crowsong for the Stricken. Morrissey’s prose is disorienting and verbose. Like some freshman creative writing major, he clogs his story with details that don’t advance the plot, with stale adjectives, and with cliched descriptions, such as: “It was a crisp October wind and orange embers bright in the starless night fell upon the Harper’s roof like God’s wrath become visible.”

Really? He couldn’t think of a better metaphor than hellfire? Or a less laundered adjective than “crisp”?

Creative writing PhDs can write. One of my favorite authors, TC Boyle, was an English professor at the University of Southern California. Perhaps even Morrissey can. But the prose in the Amazon preview of Crowsong was hardly award worthy.

A political thriller awarded by the American Book Fest is equally appalling. In his best impression of Victor Hugo’s worst Notre-Dame de Paris chapters, Alan Thompson drones on about the architectural history of Washington, DC, for the first several pages of his novel, Juvenal’s Lament. In fact, his history takes up the entire Amazon’s preview of his novel. All I can expect beyond page 6 is more failure.

All rejection sucks. But when you are ignored for inferior writers whose stories and words are so flawed they wouldn’t pass high-school English, when you know you penned a better-written, more coherent tale that unveils more about human nature in 187 pages than these novelists squeeze into tomes three times as long, rejection is more than an act or a feeling—it’s personal, it’s unjust.

Time to add methotrexate

Posted on Posted in amyopathic dermatomyositis, autoimmunity, dermatomyositis, dermatomyositis, treatmentsTagged , , ,

My rheumatologist and dermatologist agree with the Mayo Clinic dermatomyositis guru: After ten weeks on hydroxychloroquine, with few results, I need to add methotrexate and folic acid to my regimen of medications and supplements.

Otrexup: subcutaneous methotrexate
I’ll now be injecting myself with methotrexate in the thigh once a week with a cartridge that looks like a Soviet torture device. And I’ll be taking one milligram of folic acid every day—2.5 times the amount pregnant women take to stave off birth defects.

Methotrexate suppresses the body’s immune system. Developed in the 1940s as a chemotherapy agent to treat cancer, in low doses, studies and clinics have shown it effectively treats many autoimmune disorders. It’s a first-line treatment for rheumatoid arthritis and a second-line treatment for psoriasis. (Interestingly, it also used to induce abortions.) The drug is affordable, generally safe, and well tolerated by autoimmune patients.

Only time will tell whether or not the methotrexate relieves any of my rashes and itching. Medical journals show mixed evidence of its efficacy. In this dermatology study, only 1 of 4 patients with amyopathic dermatomyositis, in this one, only 2 of 3. However, this 1998 study showed it helped all 13 patients, whether they had muscle involvement or not. This 2011 study also found methotrexate reduced skin lesions in 8 of 11 patients.

Risks of Methotrexate

Liver toxicity is a risk of taking methotrexate. Though most of the above studies tout few adverse effects, one cancer-dermatomyositis patient had hair loss. These doctors observed psoriasis and dermatomyositis patients are at higher risk to liver damage than those with rheumatoid arthritis.

That said, methotrexate side effects are much more common in cancer patients. They take much higher doses of it than autoimmune patients. Brain damage is a real possibility for them.
 
I talked to all three of my doctors about side effects and risks. All three say the medication is generally safe and not to worry. Issues listed online and discussed in medical journals mostly affect autoimmune patients also battling obesity, drug or alcohol misuse or abuse, or cancer.
 
I will need regular blood tests to check for early signs of liver toxicity before the drug causes irreparable damage.

 

Gym Results: Evidence of Dermatomyositis

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

A few weeks ago, my gym results were the only way I knew dermatomyositis caused my muscles to progressively weaken. Between February and late June, I lost almost half my upper body strength.

Muscle Loss of Strength (Percent)
Triceps 40.9
Biceps 45.8
Deltoids 33.3
Trapezius 45.8
Pectorals 52

My Gym Results

I have never been the strongest guy in any room. Standing 6’5”, built more like a wide receiver than a linebacker, most of my strength is in my legs. Before tearing and repairing my meniscus, I could leg press over 700 pounds.

But with a high metabolism and a sprinter’s frame, upper body strength has never been natural for me. I worked my ass off in the gym four to five days a week during my twenties just to have a body that halfway looked and felt like a man’s.

My peak strength came in summer 2016, aged 31. Since then, between work, age, and inconsistency, my strength dropped a bit. Since February, it fell off a cliff. By June, one push-up seemed impossible.

February 1, 2018 June 28, 2018
Activity Reps / Weight (lbs.)
Reps / Weight (lbs.)
Bench Press 10 / 135 10 / 65
Bicep Curls 10 / 110 10 / 65
Lateral Deltoid Raises 12 / 30 (15 each arm) 8 / 20 (10 each arm)
One-Arm Dumbbell Row 12 / 60 10 / 45
Seated Cable Row 10 / 120 10 / 60
Push-ups 20 / 215 1 / 215

Getting Stronger Every Day

With numbers like these, I have to be careful not to give up, to compare myself to the gym rats and roid ragers. I can only be who I can be.

When I look at stronger men at the gym, I remind myself my immune system is attacking my muscles, theirs is not. Worse, most anti-autoimmune drugs also induce muscle weakness. While they do reduce muscle inflammation, their benefits are almost immediately canceled out.

But the people at my gym barely notice. Some are weaker than me. I doubt those stronger care. In fact, two have even helped spot me while I embarrass myself at the bench press. They even offered sympathy for my disease.

Since June, I’ve made progress. I workout four to five days a week. I eat a high-protein, creatine-supplemented diet. I’ve gained strength in several muscle groups. Compared to my numbers in the right column above, I can do more reps with more weight.

June 28, 2018 October 15, 2018
Activity Reps / Weight (lbs.) Reps / Weight (lbs.)
Bench Press 10 / 65 10 / 75
Bicep Curls 10 / 65 10 / 85
Lateral Deltoid Raises 8 / 20 (10 each arm) 12 / 20 (10 each arm)
One-Arm Dumbbell Row 10 / 45 12 / 55
Seated Cable Row 10 / 60 10 / 90
Push-ups 1 / 215 5 / 215

Those five push-ups are sloppy, to say the least, but for now, it’s progress.

My Rudolph Nose

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

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.