Gym results: Overcoming strength loss from dermatomyositis

Posted on Posted in autoimmunity, dermatomyositis, dermatomyositis, symptoms, treatmentsTagged , ,

Between February and late June 2018, I lost on average 43 percent of my upper body strength from a combination of dermatomyositis and the corticosteroids my doctor’s prescribed me. Since then, after figuring out the right combination of medications and regularly working out, I am proud to say that even at 40 years old, I am almost as strong as I was at 33.

Muscle2018 Loss of Strength (Percent)Gain Since 2018 Loss (Percent)
Triceps40.9200
Biceps45.8160
Deltoids33.3200
Trapezius45.8230
Pectorals52300+

Overcoming the litany of excuses

Regardless of your health, just getting to the gym three to four days per week is an exercise in self-motivation. The older we get, it’s easier to make excuses: Demanding jobs. Physical aging. Rush hour traffic. Parenting. Marriage. We even had COVID gym shutdowns to blame.

We also become more comfortable and confident in our own skin, and the vanity of our youth fades. We would rather go home and crack a beer or a box of cookies than subject ourselves to hard work and pain.

Still, even in my late thirties, even among some of the toughest months of my life, instead of making excuses, I found motivation.

Finding motivation

Like many athletes, I was always naturally drawn to the endorphins and dopamine both during and following a hard workout. I also admit my own vanity and childless, single life play a role in me wanting to be fit. I want to look good naked. I want to be happy with the person I see in the mirror.

Dermatomyositis, however, renewed my motivation. Even when my symptoms were at their worst, I wanted to be at the gym. I feared if I stopped working out, my dermatomyositis would destroy me from within. I feared weak pectoral and diaphragm muscles would make breathing difficult again.

Getting stronger every day

So, I committed to getting stronger every day. I stopped comparing myself to others at the gym. I incorporated more cardio to keep my diaphragm muscles in shape. I wanted to be the best version of myself I can be—despite dermatomyositis. My results speak for themselves:

February 1, 2018June 28, 2018June 28, 2025
ActivityReps / Weight (lbs.)Reps / Weight (lbs.)Reps / Weight (lbs.)
Bench Press10 / 13510 / 6512 / 110
Bicep Curls10 / 110 (one armed)10 / 65 (two armed)20 / 100 (one armed)
Lateral Deltoid Raises12 / 30 (15 each arm)8 / 20 (10 each arm)12/30 (15 each arm)
One-Arm Dumbbell Row12 / 6010 / 45N/A
Seated Cable Row10 / 12010 / 6010 / 140
Push-ups20 / 2151 / 21530 / 208

Understanding your limits

I realize that I am far more fortunate than many with autoimmune diseases. Some have trouble picking up objects from the floor or getting dressed in the morning. Others are left essentially with only physical therapy types of exercises.

But even I cannot do things I used to. Leaning over to do one-arm dumbbell rows triggers inflammation in my chest that feels like a combination of heartburn and somebody pressing my sternum. So, instead, I found seated exercises using weight machines to strengthen my trapezius.

I also tore my hamstring a couple years ago playing kickball. Despite it healing, it’s never been the same. To keep from aggravating it, I limit the frequency and mass of weights I use.

Your best version of yourself

For those of you with debilitating symptoms, your best version of yourself may even preclude you from going to the gym. Nobody is insisting you need to. Just find ways to be better than the person you were yesterday, mentally and physically. No matter your state, you can find ways to thrive.

I am proof that you can overcome your condition instead of letting it define you.

The grueling process of editing

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Nearly eighteen months have passed since finishing the complete draft of my latest novel, Love Flowers in Freedom (working title).

I spent nearly 9 months—coincidentally the same time it takes to make a baby—tinkering the technicalities and tweaking the text, striving for perfection. I read and reread. I camped out at coffee shops. By September 2024, I could take it no further on my own. I needed an editor—someone to nitpick word usage and point out typos, multiple someones to comment on the text.

Obtaining honest feedback

With my previous two novels, I regularly relied on a circle of close friends for input. They enjoyed my writing enough to read every word but were also educated and honest enough to suggest edits and improvements. Unfortunately, life happened.

One of those ever-reliable voices tragically died. Another is preoccupied raising kids. And another drifted from me over a decade ago and could be anywhere doing anything by now. These events have left me looking for new editors.

Again, life happened.

Someone hacked my Facebook account and sent a woman from my past a spam message. What was an honest mistake turned in my favor. I told her I was working on the book, and she agreed to read and offer feedback—knowing damn well she inspired parts of it and what emotions it could stir.

I later approached a former boss of mine for her wisdom. She owns her own publishing imprint and has decades of experience writing and editing. Moreover, she is familiar with my work and abilities and offered feedback on my first novel. She kindly agreed to help.

Surviving the offensive

Handing off your writing to others for feedback is how I imagine a general feels sending his troops into battle. You know your precious manuscript is going to return bloodied and broken. Still, you ask yourself: Will the core of your story survive? Will you?

Build energy off the positives

Initial criticisms were intense. My first commentator wanted me to rid of the politically charged parts of the book. But, do that, and you end up with a flaccid story with little context on why the main character is as angry at the universe as he is.

Rather than dwell on her dislike of the political scandal in part one, I focused on what she liked about my story and that she had next to no notes on the scenes written from the perspective of a probation officer and single mom.

Listen to the experts—sometimes

One of House, M.D.’s greatest strengths is its medical realism. To achieve this, the show’s writers regularly consulted scientists and doctors. Where the show takes liberties, it covers those faults with frequent dialogue about Gregory House’s outlandish behavior, questionable ethics, and unorthodox practice.

On the other hand, historians, critics, and classics professors lambasted Troy, Wolfgang Petersen’s unfaithful silver-screen adaptation of Homer’s Illiad. But modern audiences would never sit through a line-by-line retelling of a Bronze age epic poem. BBC One and Netflix tried to get closer to the classical texts with Troy: Fall of a City but ended up with slow-moving soft-core porn.

Should the filmmakers have listened to the irritations of classics aficionados? Hardly. The movie grossed $497 million worldwide.

Opposing opinions sometimes lead to one truth

Speaking of the classics, my first complete draft of my novel started in media res. I thought this worked because I introduced both main characters and virtually every conflict the book contains in the space of a few pages.

Unfortunately, the first commenter’s daughter read the first couple chapters of my book and did not understand what it was about. My former boss thought the first part of my novel was impressive, but the middle parts seemed a bit disconnected from the beginning and the end.

Together, the comments uncovered an unfortunate truth: Beginning in media res and following it up with a non-linear narrative was confusing—even with datelines in every chapter. I have been playing around with it ever since, moving part two to part one. This makes the novel more chronological and doesn’t leave the reader waiting eighteen chapters for some of the conflicts to re-emerge.

If one person saw it or thought it, someone else will too

This particularly applies to awkward phrasing or depictions of behavior that may have read fine twelve months ago at the coffee shop but later make your character sound like a coyote pouncing at its own drool puddles—in a grocery store no less.

As you edit, think about your audience. Is your writing sending them the message you intend?

Balancing solipsism against criticism

Every week, my day job as a proposal strategist/writer reinforces artistry’s greatest bromides: Everyone’s a critic. And it’s impossible to please everyone.

Postmodern reactions to this have been to indulge one’s thoughts and whims—no matter what. While you should always be true to yourself, this Bohemian spirit has its limits. Given art is an extension of communication, you can only get so abstract before your horse is no longer a horse or you deconstruct your sentence into meaninglessness.

Think about your audience. Think about your intended message.

Are you saying what you want to say?

Nobody is truly creating art only for themselves.

Finished my third novel—after seven long years

Posted on Posted in ADHD, culture, depression, distractions, inspiration, intellectuals, literature, mental illness, writingTagged , ,

I finished a complete draft of the novel I have been crafting on and off since 2016.

Though I met my goal to finish by 2024, the new year marks seven years and counting since I published my second novel, Goddess of the Night, in late 2016.

Fans of Californication could draw parallels between my situation and the lapse between Hank Moody’s third and fourth novels—a lapse humorously compared by Hank’s critics to the decade Guns N’ Roses spent producing Chinese Democracy.

For those who haven’t seen it, the Showtime drama revolves around Hank Moody’s writers block. In his writing, as in his life, he is his own worst enemy. He self-sabotages every break Hollywood gives him, every relationship he forms, every chance he has at forgiveness.

Hank Moody’s process differs from mine and that of many others. In the show, Hank will go months, if not years between writing stints until inspiration bursts violently from his consciousness like rain from cumulonimbus clouds. These drug- and alcohol-infused creative thunderstorms last a couple days and nights, culminating in a polished draft of a literary fiction bestseller.

Lessons from drugged-out literary luminaries

History is filled with rumors of authors similarly pulling substance-aided all-nighters. Using cocaine, Robert Louis Stevenson wrote 60,000 words in six days. Ayn Rand fueled her creative spurts with Benzedrine. Hunter S. Thompson used dextroamphetamine and, later in his career, cocaine.

Missing from these stories of drugged-out literary luminaries is the hard work involved behind the scenes. Take it from an ADHD writer—amphetamines are no substitute for routine.

Perspiration is more important than inspiration

Later in the Californication series, even freethinking, freewheeling Hank Moody tries to teach his daughter that libertine behavior does not make one a writer. He acknowledges the blood, sweat, and tears that stain every manuscript.

He tells her, “The only thing that makes you a writer is gluing your ass in a seat and getting what’s inside your head out on paper. Everything else is a pose.”

Bestselling author Gillian Flynn aptly echoes Hank’s sentiment, “There’s no muse that’s going to come down and bestow upon you the mood to write.”

Not even the psychedelic muses of the Beat Generation.

Putting in the time

With his novel stolen and his screenplay residuals spent, Hank takes a job at an all-girls private college. He tells his classroom of ingénues and aspiring authors that being a writer is like having homework every day for the rest of your life.

All novelists would agree.

In On Writing, Stephen King discusses sequestering himself in his office with the door closed. His instructions to himself and to his family are that unless the house is burning down, he is not to be bothered. King also writes every day of the year except Christmas. Then, he admits he is lying. He also writes on Christmas.

Overcoming self-imposed obstacles

To finish my latest novel, I had to invent my own writing routines—only to have them interrupted by life dozens of times. I had to work around day jobs and night jobs; depressive episodes, dermatomyositis, and multimillion-dollar proposal deadlines; dying friends and dying relationships; and worst of all, the pandemic—the antisocial shitstorm that made parasites of the masses and paralyzed my creativity for a year and a half.

After failing to reach my goal two years in a row, I partnered with my therapist to overcome my own specious barriers.

I bought a new (used) laptop and installed nothing on it but a Linux Mint instance and basic writing software. I adjusted my work schedule. I hunkered in my living room at dawn, before the world awoke to interrupt me. I found new coffee shops with better hours and policies that weren’t written by the Chinese Communist Party.

Most importantly, my therapist and I set a goal he held me accountable to—500 words per week.

After enough mornings, afternoons, evenings, and weekends, I finally hit my goal in December 2023. I finished my novel two weeks ahead of schedule.

COVID-19 vaccinations and dermatomyositis

Posted on Posted in autoimmunityTagged , , , , , , , ,

Over 230 million Americans have been fully vaccinated against SARS-CoV-2, roughly 69 percent of the United States population. Mass COVID-19 vaccinations were seen as a critical step in reopening hard-hit local economies and continue to be seen as essential for maintaining whatever passes for normalcy in our post-COVID world.

But lost in the endless lectures from community leaders and pushes from politicians for vaccinations was any sort of consideration about the safety and efficacy of the vaccines for those of us with underlying medical conditions. Quite the contrary, health officials put us first in line for the vaccines.

The SARS-CoV-2 vaccines were tested in July 2020 on healthy patients and distributed broadly starting in December 2020. While the vaccine has been heralded as safe, even healthy patients have missed work, fallen ill, and come down with rashes that resemble signature symptoms of dermatomyositis, lupus, and other autoimmune diseases. So what about those of us with malfunctioning immune systems?

Do the risks outweigh the benefits?

To no one’s surprise, COVID-19 czar Anthony Fauci told attendees at a December 2020 hematology conference to urge immunosuppressed patients to get the COVID-19 vaccine. Attendees actually doing research on COVID-19 in immunocompromised populations agreed with Fauci, but admitted at that time there was not yet data available to back up Fauci’s recommendation.

Early studies of the SARS-CoV-2 vaccine understandably excluded immunosuppressed patients. Later studies focus on HIV-infected individuals, patients being treated with stem cells, organ transplant recipients, and leukemia patients. Respected British medical journal The Lancet, to name one, published a Swedish study of immunocompromised patients, stating the results showed the Pfizer vaccine to be reasonably safe. However, autoimmune patients were not included in the study.

The American Association for Neuromuscular & Electrodiagnostic Medicine discusses in detail the pros and cons of vaccines for people suffering from neuromuscular diseases. Because these types of diseases often affect muscles involved in breathing, they encourage those afflicted who are not taking immunosuppressants to obtain the vaccine.

However, for immunosuppressed patients with neuromuscular diseases, the researchers advise caution. While the benefits of the vaccine may outweigh the risks, studies of mRNA vaccines on immunosuppressed groups are scarce.

Other public-health authorities and doctors all over the world have also advised immunosuppressed patients to get the vaccine, claiming the risks outweigh the benefits. Following the American College of Rheumatology guidance, my own doctors also advised me to get the SARS-CoV-2 vaccine, stating their other autoimmune patients were able to do so safely.

But few of these doctors and researchers have even looked into the most important question: Would the vaccine actually help me?

Is the vaccine effective for the immunosuppressed?

A research group at Johns Hopkins attempted to answer that question. They found only 17 percent of immunosuppressed patients mounted antibodies detectable to SARS-CoV-2, compared to 100 percent of patients with healthy, functioning immune systems. For patients taking steroid-sparing agents, like methotrexate and azathioprine, the researchers could only detect antibody responses in 8.75 percent.

The Lancet study cited earlier also showed significantly lower seroconversion rates in organ transplant patients taking immunosuppressants like mycophenolate mofetil and azathioprine. Only 43 percent developed antibodies for identifying and combating SARS-CoV-2.

Even in the general population, a vaccine is not 100 percent effective; in those with weakened immune systems, the response will be limited.

Spyridoula Vasileiou, PhD, Baylor College of Medicine

A study published in October 2022, 22 months after the vaccine was made publicly available for populations most at risk of contracting COVID-19, also found the immune systems of immunosuppressed patients responded poorly to the SARS-CoV-2 mRNA vaccines.

When I bring up these studies to my doctors, they look at me somewhat blankly. Though none of them is an uneducated sheep simply following the herd, I imagine each of them feel pressure from various government agencies, lawyers, medical boards, and insurance companies to follow the prescribed guidelines. And who can blame them? Even among specialists, dermatomyositis is even less understood than novel coronaviruses.

Dermatomyositis and COVID-19

When the vaccine was first released, the general consensus, based on sound medical logic, was that any patient taking an immunosuppressant would obviously be at greater risk. Not for only were people with malfunctioning immune systems more likely to contract COVID-19, but many expected them to suffering more severe symptoms and be more likely to die or see long-term damage to their bodies.

In spring of 2020, this made sense to me, too. I feared if I contracted the disease, it would be nearly impossible to fight off. I did not leave my house for three weeks, despite objecting to mass shutdowns aimed at protecting people like me.

But then came Donald Trump’s infamous Tweets about hydroxychloroquine, citing early, incomplete evidence that the drug was effective in vitro (specifically in monkey kidneys cells) in blocking infection. Then doctors in India started prescribing it as a prophylactic. Months went by with me dodging COVID as I adapted to the pandemic world so I could have some semblance of a social life and maintain muscle mass. As a long-time user of the drug, even then, I started to wonder if hydroxychloroquine truly did help prevent COVID-19 infection.

More sloppy research came to light, and discussions of the efficacy of hydroxychloroquine in preventing COVID-19 to this day remain politicized. The World Health Organization does not recommend it. The Lancet says it never worked in clinical settings. As late as August 2021, the American Journal of Medicine wrote the evidence is still incomplete but interestingly concluded the antimalarial has no clinical benefit.

Hydroxychloroquine prophylaxis or not, I, the unvaccinated immunosuppressed dermatomyositis patient who went to gym, the store, even restaurants and bars, had still not acquired COVID-19. This, of course, ran contrary to most medical and scientific reasoning.

When I finally did acquire COVID-19 over Thanksgiving 2021, it was the tail end of the Delta variant and the beginning of Omicron. Yet, I fought off the virus relatively unscathed, save for my poor sense of smell.

So what the hell was going on? Was my immune system just destroying everything in its path, from Alpha to Omicron, including me?

Imperfect immune systems and the insanity of bureaucrats

Twelve seasons of House, MD, four rheumatologists, three dermatologists, two stints writing proposals for the several eminent immunologists, and a drug trial later, I am not convinced humanity understands infectious diseases and our own immune systems nearly as well as experts advertise.

COVID-19 alone proved that. The world’s doctors, researchers, bureaucrats, and lab rats rushed to find solutions and cures for COVID only for leading authorities to lose credibility amid rash proclamations that routinely had to be reversed.

Twice, the federal government was wrong about masks. An Arizona Home Depot was out of anything resembling a facial covering as early as January 2020. Amid the sellouts, U.S. Surgeon General Jerome Adams told people via Twitter to stop buying masks, stating, “They are NOT effective in preventing general public from catching coronavirus.” The CDC similarly did not recommend facial coverings because “the virus was not spreading in the community.” In April, they backtracked on their original position. By June 2020, they persuaded governors to fine or jail anyone caught unmasked in public.

The CDC later joined the chorus of overqualified morons who blamed anti-maskers for the summer spikes in COVID cases throughout the U.S. Sunbelt only to realize the American and European northerners would suffer their own Armageddon six months later. Winter was coming, and November 2020 to March 2021 saw the highest case counts of the entire pandemic—even with mask mandates, mass shutdowns, and the beginning of vaccine distribution.

The FDA was no better. Early in the pandemic, they issued emergency authorizations for doctors and pharmacists to treat COVID-19 with hydroxychloroquine, causing the nation to nearly run out of one of two drugs keeping me alive. Months later, these same bureaucrats completely reversed their proclamation.

Then came the U.S. government’s most incessant, most obnoxious, most overbearing fear campaign since World War II: Get vaccinated or die.

While the vaccine was indeed a scientific and political breakthrough and absolutely necessary to ending the socioeconomic chaos, badgering individuals to shove a barely tested substance into their bodies without considering the consequences revealed the ineptitude of the very agencies who allegedly exist to prevent these sorts of issues.

Doctors started seeing dangerous swelling and inflammation in the hearts of newly vaccinated, otherwise perfectly healthy men aged 18-29.

Immunologists in Germany observed five times as many new-onset dermatomyositis cases at their clinic in 2021 compared to the previous two years. They attribute the uptick in an otherwise extremely rare disease to both the SARS-CoV-2 vaccinations and virus itself. Saudi Arabian doctors also noted the phenomenon.

Pakistani doctors reported similar rises in rheumatoid arthritis following COVID-19. My own rheumatology clinic also saw increases in autoimmune cases following mass vaccinations.

Other data about immunocompromised individuals and COVID-19 also emerged. The Johns Hopkins group referenced above found that immunosuppressed organ transplant patients were not more likely to die from COVID-19, as commonly thought when the pandemic began.

People who already had dermatomyositis when they contracted COVID-19 exhibited better outcomes than the general population.

More fascinatingly, patients who already had dermatomyositis when they contracted COVID-19 actually exhibited better outcomes than the general population—lower severity, lower death and hospitalization rates. With the exception of those with lung involvement, in general, dermatomyositis seemed to be a protective factor against COVID-19.

These findings mirror my own experience with COVID-19. My fever and difficulty breathing barely lasted 36 hours. The worst of my symptoms was my loss of smell and taste.

Vaccinations and dermatomyositis patients

Given the research, mRNA vaccine safety does not seem to be more of a concern for dermatomyositis patients than other groups. However, for those taking the most effective dermatomyositis drugs—azathioprine and mycophenolate mofetil—roughly 1 in 3 will develop the antibodies needed to truly be called vaccinated.

The mRNA-based SARS-CoV-2 vaccine seems to be just as safe for dermatomyositis patients as it is for those with properly functioning immune systems.

Dermatomyositis patients, like all patients, should talk to their doctors before deciding whether or not to be vaccinated. For me, because I take azathioprine, the risks of further altering my immune system outweigh the benefits of a vaccine unlikely to help.

But for dermatomyositis patients, there is only a 1 in 3 chance the vaccine will work.

Fighting COVID on immunosuppressants, part II: the war in my head

Posted on Posted in autoimmunityTagged , , ,

The week following the worst of my COVID-19 symptoms was more an exercise in psychological perseverance than it was a scrimmage between man and virus. By the Tuesday before Thanksgiving, my body had won the battle with SARS-CoV-2. But my mind was losing a war against itself.

My girlfriend and I had broken up two months prior. Understandably unable to handle the pain of visible separation, she had moved in with a friend. She left me with temporary custody of two cats and a mountain of her paraphernalia while she figured out her long-term living situation.

Losing the best of friends

Two weeks after my ex-girlfriend and I split, one of my best friends died. Like me, he had battled his own rare disorder, Peutz-Jeghers syndrome. Benign hamartomatous polyps developed in his intestinal tract, causing intestinal bleeding and obstructing his bowels. The condition put him at very high risk for intestinal cancer. He fought the cancer and underlying condition as much as modern medicine could. At 37, he sadly lost the war.

Losing a friend or family member is difficult no matter the circumstances, but no thirty-something expects to lose friends their age. Making the whole situation even more heartbreaking, he left behind a wife and toddler.

For me, he was among the greatest of friends. We coached each other through heartaches and career moves. We were their through the best and worst days of our lives. Without him, I do not know if I could have endured the Great Recession. We imbibed. We bitched. We debated. We broke bread and bottles. He was often the first to read my writing.

He, like me, always wanted something more from life. Part of me wonders if that was part of what took him. As much as he loved his wife and daughter, there may have been no earthly object or force that would have ever fulfilled him. Perhaps he has now has peace at some great celestial wine tasting.

Madness turns to loneliness

Sitting at home with COVID, all I could do was think about my broken relationship and my dead friend. Existence itself had become pointless, as it had for much of the pandemic, with each day irregularly folding into the next.

Other than 15-second Sunday visit from my friend, I had not laid eyes on another human being in over a week. Even then, she understandably stayed 30 feet from my front door—no hug, no handshake, no verbal exchange.

For someone as extroverted as myself, this was torture. I wanted to go to the store, the gym, the office, anywhere with people just to remind myself I was not the science-fictional last man on a post-apocalyptic Earth.

I wanted to find hope again. Then, and only then, could I find love again.

Thanksgiving quarantine, sponsored by Taco Bell

Though my taste buds were slowly returning to form, my tongue could barely discern spicy from sweet, let alone detect delicate nuances in flavor distinguishing fine global cuisines. As such, most of my quarantine diet consisted of Taco Bell doused in enough hot sauce to stress my senses and burn my taste buds.

Lingering loss of smell

Other than the congestion and loss of smell, COVID symptoms only took about 36 hours to go away. But ever since I first acquired SAR-CoV-2, my smell and taste have been off, so much so that wine tasting has all but screeched to a halt.

Synthetic perfumes, bodily or household, all smell like Chanel No. 5. The fragrance section at Macy’s or Dillard’s is an exhausting nasal exercise, a Sesame Street game for adults: Which one of these things is not like the other?

“What is all of them, Alex?”

Pepsi Zero Sugar has a weird chemical taste that goes far beyond what I could detect this time last year. Fruits smell and taste a bit off, though I cannot identify which ones. And cooking and dining out is less fun because my the nose plays such a large part in detecting and defining flavors. As such, half of my meals are basically healthy snacks. Why put in the effort for something that is hardly tastier than peanut butter and apples?

Fighting COVID on immunosuppressants, part I

Posted on Posted in autoimmunityTagged , , , , ,

One week before Thanksgiving 2021, after nearly two years avoiding the SARS-CoV-2 virus, I finally caught COVID-19.

Day 1 – A simple sore throat

My throat swelled. I thought little of the inflammation because difficulty swallowing (dysphagia) is a classic dermatomyositis symptom. My immune system attacks the muscles in my esophagus, causing the throat muscles to weaken and have trouble contracting. This was one of the earliest signs of my disease, beginning in May 2018.

At work, I was amid writing a proposal for on-call geotechnical services to a California city. I took two naproxen and fought through the symptoms.

Day 2 – Difficulty breathing and loss of smell

I woke up exhausted with an intermittent cough. My chest felt like someone had stacked hardcover medical texts on my sternum. Breathing became a chore—albeit nothing life threatening.

Proposal deadlines be damned. I felt terrible and took the day off work with plans to return to writing over the weekend.

By Wednesday evening, food began to taste bland. I had trouble smelling coffee beans. Even my sugar-free soda alternative—water with black cherry Mio—tasted like cough syrup aged in wine casks.

Day 3 – COVID-19 suspected

My congestion worsened. My throat was beyond sore. I still had difficulty breathing. And at that point, I could not even smell the bergamot in my cologne or in my Earl Grey tea.

Add in my feverish chills and all the signs of COVID-19 were present. This realization made me anxious. Not only would I be battling the virus with a suppressed immune system, but I would be doing so without the benefit of the vaccine.

As I discuss here, the immunosuppressants I have been taking for my dermatomyositis render the vaccine largely ineffective. And because of my underlying condition, being vaccinated would be more of a risk than contracting COVID-19.

At least, that was my hypothesis based on two peer-reviewed studies. With my symptoms, I was about to put it to the test.

Day 4 – COVID-19 confirmed

I ordered an at-home COVID-19 test from Walgreens to be delivered early Friday morning via Door Dash—a testament to twenty-first-century technology and convenience.

Within three minutes, the strip on the at-home test turned fuchsia, well beyond the light pink needed for a positive result.

Interestingly, that afternoon, after just 36 hours, my fever diminished. I was able to breathe easier.

I mustered up the energy and courage to notify the two people with whom I came in close contact of my positive test—my psychologist and a friend I went hiking with the prior Sunday.

I felt like I had texted sexual partners about a case of the clap. Nobody was thrilled, and my friend in particular did not receive the news well.

Day 5 – Symptoms improve

All my symptoms improved except for the worst sinus congestion of my life and the accompanying loss of smell. With some over-the-counter nasal decongestants and a couple naproxen, I was able to return to writing the proposal I had put off for three days.

Day 6 – Sunday morning pseudoephedrine delivery

My initially unsympathetic friend changed her attitude and visited me Sunday morning to deliver pseudoephedrine. Thanks to nonsensical regulations aimed at tracking would-be Walter Whites and curtailing at-home methamphetamine production, pseudoephedrine is one of the few items Amazon or Door Dash cannot deliver.

Day 7 – Internal proposal deadline met

I felt markedly better by Monday morning. Thanks to the modern miracle that is pseudoephedrine, I was able to stave off the severe congestion and make enough progress on the proposal to ready it for Tuesday’s peer review.

Click here for part two of my battle with SARS-CoV-2.

Eighteen months in a dermatomyositis drug trial

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When I was first diagnosed with dermatomyositis, I felt hopeless about the prospects of humankind ever developing a drug specifically for my orphan disease. What profit-seeking entity would throw money at a disease so rare it makes lupus look like a pandemic? What congressional representative could justify spending taxes researching an autoimmune condition that may not even exist in the district they represent?

Could I count on the benevolence of strangers? Should I expect self-interested organisms hellbent on survival to be interested in preserving, or at least, improving, a genetically malformed member of their species?

In fall 2019, I received a call from Mayo Clinic in Scottsdale, Arizona. A dermatologist there wanted to enroll me in a phase 3 clinical trial for a drug developed for dermatomyositis and other rare inflammatory conditions.

I jumped at the opportunity. Any new drug had a strong chance of being an improvement over the azathioprine I had been taking.

Becoming a guinea pig

When the trial started, many asked if I was nervous about ingesting a substance not yet approved by the Food and Drug Administration. The answer was a resounding no.

For one thing, dermatomyositis is life-altering and irritating enough that I would prefer side effects from any drug–including the azathioprine I already take.

Azathioprine is classified by the U.S. Department of Health and Human Services as a carcinogen. According to the Mayo Clinic dermatologist, spending 35 years on the medicine I have been on, azathioprine, virtually guarantees I will end up with skin cancer before I turn 70. Other studies confirm risks of skin cancer and lymphoma. The sooner I can rid my body of azathioprine, the better.

Even then, as an anarchist, an agency stamp on a drug means little to me. Many of the FDA-approved autoimmune treatments carry risks of depression, insomnia, even death. A woman with arthritis I used to work with on rituximab was hospitalized after the medicine caused Guillain-Barre syndrome. And there is not one autoimmune treatment on the planet that does not put the patient at risk for humanity’s latest afflictions, COVID-19 and monkeypox.

Even if all pharmaceutical companies cared about was money, they have no incentive to kill or harm their customers. And even if a company were okay rushing drugs to market in search of short-term gains, a single nasty side effect from a single drug could ruin a billion-dollar corporation. Profits would be spent settling lawsuits. Few doctors or patients would ever trust the company again.

Finally, the drug I tested, lenabasum, had entered phase 3 clinical trials. By the time a drug reaches this late phase, it has already undergone years of safety and efficacy testing.

Schedule I substances

Lenabasum is ajulemic acid, synthetic cannabinoid designed to attack the severe inflammation and muscle degeneration associated with dermatomyositis. Yes, it is derived from cannabis, making it a Schedule I substance. In short, that means the federal government recognizes no acceptable medical use for it. Merely possessing the drug can land you 10 years in prison.

I have no idea how exceptions for this work, especially in the era of marijuana legalization, but the trial drug was definitely treated like contraband. The pharmacist had to hand deliver it to the patient, me, inside the study coordinator’s office. I was required to sign that I received and accepted the drug. The pharmacist had to affirm she gave it to me.

Lost in the insanity of this procedure was that the manufacturer had removed the pscyhoactive component of cannabis, tetrahydrocannabinol (THC). And even if they had not, I can buy recreational or medicinal cannabis containing ample THC at a strip-mall shop 3 miles from my house.

Perhaps even more hilariously, during the height of COVID-19, Mayo Clinic was shut down to any non-emergency use, and the pharmacist started shipping the scheduled substance to my house. Adhering to the strictest DEA definitions, this meant the pharmacist, the mailman, Mayo Clinic, and the U.S. Postal Service, were trafficking drugs.

Less guinea pig, more zoo exhibit

When I started the trial in February 2020, the violet-red Gottron papules adorning my knuckles were severely inflamed. They alone qualified me for the trial and turned me into a traveling zoo exhibit for medical students. Little in patient life underscores how different you are from everyone else like being introduced to a parade of twenty- and thirty-somethings for the first time as a textbook example.

Little in patient life underscores how different you are from everyone else like being introduced to a parade of twenty- and thirty-somethings for the first time as a textbook example.

To track adverse reactions, every visit, I filled out a 150-question survey, most of which were about itching and mental health. They also drew about six tubes of blood for every lab visit. Unlike labs ordered by me or my doctor, I was never able to see any of my results.

Apart from these procedures, the bimonthly study visits varied little from any other medical appointments. Admittedly, I looked forward to my visits. I enjoyed talking to someone who knew more about dermatomyositis than me for once.

Answering the $30,000-per-year question

Three months into the double-blind drug trial, the papules had all but disappeared. Hair loss slowed down. My scalp barely ever itched. I was even able to decrease my daily dose of azathioprine. I thought for sure I was on the lenabasum and that it had worked.

I was wrong.

In June 2021, the study coordinator phoned to inform me Corbus Pharmaceuticals, the drug manufacturer, canceled the trial. They had not seen the results needed to justify spending millions more to develop and market a drug that would cost patients or insurance companies tens of thousands of dollars per year.

The study coordinator also told me I had been on a placebo. Any improvements the dermatologist, my rheumatologist, and I observed had nothing to do with the lenabasum.

Though I was mildly disappointed, this was actually good news. Not only had my immune system backed off, but it did so while significantly decreasing my dose of azathioprine.

Further, despite lenabasum containing no THC, throughout the drug trial, I felt drained and unmotivated. Because the study overlapped the social withdrawal from worldwide quarantines and one-size-fits-all policies to prevent the spread of COVID-19, no one can say for sure if the lenabasum caused those feelings. That said, other patients reported similar side effects. Regardless, I was happy to rid my body and mind of anything that had contributed to 14 months of lethargy.

It would have been nice if lenabasum truly worked, but even if it had, insurance companies would have been reluctant to cover such an expensive drug.

Would it have been nice if the new drug worked? Yes. But even if it had, I am not certain it stood a future. Insurance companies would have used any excuse to avoid paying the $30,000 per year lenabasum would no doubt fetch following FDA approval. That would include remaining on the azathioprine that had worked all along and could be bought at prices even developing nations could afford. Cancer risks be damned.

Creatine kinase spiking, fighting off a virus

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

Monday morning blood tests revealed my creatine kinase levels have spiked. Tuesday, May 18, my throat ached and swelled. By Thursday evening, congestion made breathing through my nose difficult. Friday morning, I could feel my immune system ripping apart my muscles and inflaming and stretching my skin. I told my sister I felt like I had the flu after being beaten up by a football defensive end.

Fortunately, I never had a cough or any remote respiratory impairment, so whatever this is, it is likely not COVID-19. And my typing this on a Sunday afternoon is proof enough that I am on the road to recovery.

What concerns me, however, are my muscle aches. Though the pain is not debilitating, it is sore—the same way one feels a day after an intense workout. In conjunction with my elevated creatine kinase levels, this means my immune system for the first time in 2 years is back to attacking my muscles—even while taking drugs to suppress it.

It can hardly be coincidence this is happening while I am ill. Though I need to confirm with a doctor, I suspect my suppressed immune system had been struggling to rid of the infection and geared into hyperdrive to destroy whatever virus inhabits my body.

These events come as a setback after more than a year in a drug trial. I messaged the dermatologist running the trial about what has been going on. I can only hope this dermatomyositis flareup soon extinguishes itself, and that the new drugs have not failed.

Barely tested COVID-19 vaccinations and virtue signaling

Posted on Posted in autoimmunity, dermatomyositisTagged , , , , ,

The masses have taken to Facebook and Twitter to proclaim in pictures the virtues of getting their COVID-19 vaccinations. The elites are no better. In the greatest example of state leaders’ unrelenting narcissism and presumptuousness since Marie Antoinette, United States Vice President Kamala Harris even had her vaccine ceremoniously injected at the National Institutes for Health—naturally, long before us peons had access to 2021’s panacea.

As a friend wryly pointed out, what’s next? Are we to expect photographic evidence of people’s prostate exams and pap smears?

The connected world is a peculiar place—ideological bubbles, cancel culture, virtue signaling, social conformity in degrees Goebbels and the Glavlit could only dream. Social media influencers have become the twenty-first-century equivalent of the cool kids pressuring the isolated and awkward into taking up street drugs to dull the pain of an increasingly alienated existence.

At the risk of sounding like a conspiracy theorist, it’s no secret that big pharma, governments, and media have been inseparably intertwined throughout the pandemic like polyamorous lovers in a threesome-themed porno. All have advocated for prolonging prophylactic measures while pushing the SARS-CoV-2 vaccine onto an unsuspecting, scientifically illiterate populace. For them, their vaccine is their final solution for permitting us to returning us to a normal life.

Big pharma, governments, and media have advocated for prolonging prophylactic measures while pushing SARS-CoV-2 vaccines onto an unsuspecting, scientifically illiterate populace. For them, the various COVID-19 vaccines are their final solution for permitting us to returning us to a normal life.

But is it really? How safe can a vaccine rushed through emergency clinical trials really be? How are we supposed to trust the science done by pharmaceutical companies who stand to make billions? How can we trust the opinions of political elites, including Harris, who often take campaign contributions from these megacorporations?

Thoroughly tested vaccines are wonderful

Vaccines, in and of themselves, rank within humankind’s top five inventions. They brought an end to smallpox and polio and minimized the impact of dozens of other pathogens, dramatically extending life expectancy.

But each vaccine needs to be cautiously assessed on its own merits and never taken lightly. In the right hands, they are miracles. In altered forms, in the wrong hands, they could become biological weapons.

Each vaccine needs to be cautiously assessed on its own merits.

One can hardly accuse Pfizer and Moderna of anything but the best of intentions. After all, we’re tired of sitting scared at home, and if their vaccines truly remedy our boredom and return purpose to our lives, we should be pounding on the glass lobby doors to distribute the vaccine.

That said, I will not be the first in line.

But what about ones rushed through trials?

I get that deadly emerging infectious diseases call for expedient solutions. In fact, in concert with scientists and doctors far better credentialed than me, I once managed and co-authored a proposal to Anthony Fauci’s National Institute of Allergy and Infectious Diseases to create a center just for that.

But SARS-CoV-2 is not the Ebola virus. Only 1.65 percent of the world’s population has even reported contracting the virus. Only .03 percent died from it. 99.97 percent of the world’s population has survived letting the human immune system take its natural course.

While the COVID-19 vaccines appear to be relatively safe for now, the long-term consequences of the vaccine cannot possibly be known less than a year after their invention.

An while the vaccines appear to be relatively safe for now, the long-term consequences of the vaccine cannot possibly be known less than a year after their invention. Only 5 in 5,000 drugs that enter preclinical testing—usually done on lab animals—ever make it to human testing. Of those, only 1 in 5 is approved. And this process usually takes 12 years. Whether you agree with the Food and Drug Administration’s (FDA) decade-plus process or not, it exists to protect human lives.

So why the rush?

Because COVID-19 is a public health emergency, according to the FDA. They assure us, “efforts to speed vaccine development to address the ongoing COVID-19 pandemic have not sacrificed scientific standards, integrity of the vaccine review process, or safety.”

So if a vaccine can be approved in less than a year, then why does it take so long to test and approve everything else? Should we skeptical of the emergency approval process? Or skeptical or the standard approval process?

Let’s assume this is a resourcing problem. The government has thrown trillions of dollars and thousands of people at COVID-19 to expedite processes usually overseen by a couple hundred.

But as even COVID-19 vaccine proponents agree, even with a rigorous approval process, because we have only been distributing vaccines for a couple months, we cannot possibly know the vaccine’s long-term side effects or effectiveness (some are already claiming the virus will mutate) nor its side effects on those of us with pre-existing conditions, like dermatomyositis.

To vaccinate or not—a choice best left to each individual

Ultimately, the choice to vaccinate must be left up to the individual (or her guardian, at least). Like anything in life, she must weigh the risks against the outcome. She must ignore the peer pressure and the Kamala Harrises of the world. She must consider her own body and lifestyle and make the best choice for her.

As for me? I’m waiting for more testing on the immunosuppressed. One drug trial is enough for now.

Sunday struggles searching for unobtainable perfection

Posted on Posted in ADHD, autoimmunity, distractions, existentialism, mental illness, writingTagged , , , ,

Today was supposed to be different. I planned to lift weights at the gym and then work on my novel at the coffee shop. I have not met either goal.

Instead, I procrastinated. I can’t even remember what I did this morning. Then I went grocery shopping, hoping to prepare healthy food for my girlfriend and I for most of the week.

Alas, my afternoon attempt at frying tofu cubes to a crisp for my vegetarian variation on kung pao chicken failed. The oil was not hot enough. What heat it did have dissipated quickly as soon as I dropped the half-centimeter cubes into the oil.

The last time I cooked this dish was in a commercial kitchen. I now realize frying tofu cubes at home is nowhere near as simple and perhaps even impossible without the right equipment.

I had to throw out the soggy mess.

Rationally, I know it’s just one meal, and I can always make the vegetables into something else. But I still hear the invisible parent within me shouting, wondering why I can’t make a dish I’ve made half a dozen times before, why I can’t motivate myself to don a pair of shorts and head to the gym, why I can’t drive to the coffee shop to escape the temptations of on-demand reruns, guitars, and Madden 21.

My girlfriend says I am too hard on myself. A previous psychologist would concur. I can hear him now, “Respect yourself.”

But my current psychologist and I made a pact. He and I agreed on four goals to work on over the last month, and I’ve barely met one.

I’m trying to be kind. I’m trying to remind myself I edited my novel for an hour yesterday. I opened my laptop qua 21st-century typewriter today. I’m writing now.

But impossible standards and unrealistic expectations are my curse. I could blame the Protestant work ethic of my parents. I could blame the all-or-nothing thinking that accompanies ADHD. Either way, they have become part of me, stations on my lifelong search for unobtainable perfection.

I smell the pork rubbed with brown sugar and freshly cracked Chinese five spices roasting in the oven. Perhaps we’ll have dinner after all.

Plus, there’s still time left to go to gym.