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.
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.
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. 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?
Autoimmune diseases can leave sufferers feeling alone and vulnerable. To our friends, we sound like strangers spitting out words they have never heard. We try to get someone, anyone, to understand that every day, we walk a tightrope made taut by modern medicine over a 10,000-foot drop to oblivion. If and when we fall, doctors cast us lifelines. Sometimes, we lose our grip. Sometimes, the lines break.
The rarer the condition, the more anxious and more depressed its leaves the afflicted. We visit doctor after doctor and wander the world in search of charlatans who have answers to the darkest of questions: Why me? What caused this? Did I do this to myself?
Seeing talented sports stars, actors, singers, and musicians flourish despite their conditions inspires those of us battling autoimmunity.
We have to remind ourselves daily that diagnosis is not the end. Most autoimmune diseases have been thoroughly studied. Though few, if any have cures, many have multiple treatment options. Most treatments are safer and more effective than they have ever been. And in the twenty-first century, many autoimmune patients live long, productive, even happy lives.
Staying on top of their game: sports stars with autoimmune diseases
Pro golfer Kristy McPherson was told by many doctors she would have to give up sports after being diagnosed with juvenile idiopathic arthritis at age 11. A rheumatologist at the Medical University of South Carolina told her that even with the disease, she could still do whatever she wanted.
Pro golfer Kristy McPherson refused to give up sports after her doctors diagnosed her with juvenile rheumatoid arthritis and told her she would never be able to run or jump competitively again. [Chris McGrath | Getty Images]
“All I needed was that one doctor to tell me that,” McPherson said. “That’s when I went back to playing sports.”
Months after becoming the world’s top tennis player, Caroline Wozniacki was diagnosed with rheumatoid arthritis.
She explained: “You start asking yourself questions: What does this mean? Does it mean I can’t get in as great of shape as I was before?”
Though she initially struggled, she bounced back to win the 2018 China Open.
“[Wining in Being] meant so much to me,” Wozniacki added. “It also gave me the belief that nothing is going to set me back. I’m going to work with this and this is how it is, and I can do anything.”
Both McPherson and Wozniacki now speak with young people about living with the rheumatoid arthritis.
Having an autoimmune disease doesn’t mean you can’t be beautiful
Kim Kardashian’s makeup-free selfies have encouraged many others to acknowledge their psoriasis and helped me feel better about flare-ups on my face.
“The disease can cross all socioeconomic lines,” Randy Beranek, CEO of the National Psoriasis Foundation, told The Atlantic. “If someone as famous and visible as Kim Kardashian can have it, it doesn’t make your disease feel so isolating.”
Last December, Kardashian even polled her fans on Twitter about effective medications.
Celebrated singers and musicians have autoimmune diseases
Actress and pop singer Selena Gomez a few years ago revealed she has lupus and in 2017 informed her fans on Instagram about her life-saving kidney transplant.
Few 24-year-olds probably understand what it’s like to have their bodies threaten their lives. To deal with the psychological pain, Gomez checked into Arizona’s Meadows rehab facility. She then faced backlash from fans and from media, who thought she was being treated for drugs or alcohol addiction.
Like Kardashian, revealing her condition to the world opened up mainstream and social media discussions about lupus: What is it? What does it mean for Gomez’s career and for others living with the disease?
Singer Toni Braxton also has refused to let lupus derail her career or her commitment to her family. One of the most decorated pop singers in American history, she has won seven Grammy Awards, nine Billboard Music Awards, seven American Music Awards, among numerous other accolades.
As a guitarist, I find Shawn Lane’s story most inspiring. Widely regarded as one of the greatest guitar players ever, Lane struggled since he was twelve with psoriatic arthritis. His condition not only caused itchy, painful rashes on his skin, but also stiffness in his joints, making it increasingly difficult to play his instruments.
Guitar player Shawn Lane played his entire career in spite of stiffening joints and skin rashes from psoriatic arthritis. His playing and compositions continue to inspire guitarists even after his untimely death in 2003.
Worse, Lane developed Cushing’s syndrome from his long-term use of cortisone to treat his skin and joints. He had to stop playing guitar and died a few years later after developing breathing problems.
Nonetheless, as readers can find more about here, Shawn Lane lived as full of a life as possible, playing in spite of the pain, and producing some of the most beautiful instrumental music of the last thirty years.
Laurence Olivier and Maria Callas: living with and dying from dermatomyositis
As I mentioned here, heralded actor Laurence Olivier and legendary soprano Maria Callas both battled and eventually died from dermatomyositis. That never stopped either of them from prolific careers.
Olivier has been called the most definitive actor of the twentieth century. He lived to be 82, dominating the British stage and starring in more than fifty films.
Callas had a vocal range just below three octaves and is still one of the best known and influential opera singers of the twentieth century. Despite her disease affecting her voice in her later years, she still performed. Forty-plus years after her death, Callas’s name still sells albums.
Modifying guitar effects pedals with circuit designs that predate most Millennials has become another tangent of my guitar obsession and a welcome opportunity to create with my hands.
I rebuilt each of these classic Boss guitar effects: DS-1 Distortion, BD-2 Blues Driver, SD-1 Super Overdrive. Replacing cheap components and adjusting the circuit has made them sound richer and fuller.
In fall 2017, around the same time I first developed rashes on my elbows, I began tinkering with an old distortion pedal I had barely used in years.
Made to turn my electric guitar and amplifier into a heavy metal machine, the infamous Boss MT-2 Metal Zone needed an upgrade. It has been understandably lampooned all over YouTube for its fizzy, ultra-compressed, mid-scooped, nasally tone that teenagers flock to as though each pedal was boxed with cocaine and a porn mag.
Remarkably, with a soldering iron and some patience, by replacing and removing a few capacitors and resistors, it can be made decent. By overhauling every single cheap Taiwanese component with much higher-quality Japanese ones, the Metal Zone moves from a neglected embarrassment (paradoxically, it’s found in almost every guitarist’s closet; Boss has sold millions) to a marvel of modified Japanese engineering that performs as well as boutique distortions twice its price.
For an angry thirty-four-year-old anarchist who grew up on Metallica, Iron Maiden, and nu-metal, plugging a guitar into a modded Metal Zone is enough to get you through the days you want to tell your employer to take this job and shove it.
For me, overhauling a pedal I obtained from a friend as a teen was a wonderful exercise in taking my mind off the things I cannot control and rejuvenating the things I can, no matter my constraints.
These guitar projects have become a welcome relief from my usual, more cerebral pursuits that leave my head lost in the clouds.
Since finishing the project, modifying and improving these relatively simple circuits has become a part of my quest for my perfect guitar tone. I’ve rebuilt seven Boss classics in 8 months: two BD-2 Blues Drivers, one DS-1 Distortion (the same effect used by Prince, Kurt Cobain, Joe Satriani, Steve Vai, and others), an SD-1 Super Overdrive, a PH-2 Super Phaser, a CH-1 Super Chorus, and most recently, an HM-3 Hyper Metal.
These projects have become a welcome relief from my usual, more cerebral pursuits that leave my head so lost in the clouds that Aristophanes himself could come back from the dead to stage a sequel to his parody of Socrates. By day, I work at a university, trying to keep up with astrophysicists and bioengineers. By night, I write novels and blog posts that require equal research efforts. To some extent, hand-built guitar effects and the gym are all I have to remind me I live on Earth, that reality is ultimately material.
I hate the dentist. The mere thought of the pick scraping my teeth and gums drives me wild like a dog forced to endure a high-pitched whistle. The memories of the drill hitting a nerve the dentist thought she numbed causes me to cringe like a child being force-fed once-boiled, week-old brussel sprouts. If ever you put a committee into a room and asked them to think of ways to torture human beings, most would suggest the dentist’s chair–picks, drills, giant needles into the cheek and all.
Taking medications to keep my immune system in check has forced me to return to the dentist at least twice in the next month.
Because of this, I have spent much of my adult life taking care of my teeth, brushing daily, twice yearly cleanings. The best I could ask of myself is to floss more frequently. Between my hygiene and being subjected to numerous municipal fluoride experiments, my teeth have been largely impervious. I’ve had maybe six cavities my entire life–most of which were during my teen years, when my parents paid the dental bills and a toothbrush was as foreign to me as bathroom cleaner.
I returned to the dentist Thursday only to find out I have five cavities, including a nasty deep one that will require removing the tooth’s root. My dentist was so surprised by the decay he asked me: Had I changed my diet? Was I taking some crazy medication? Had I stopped brushing in protest of the Trump administration?
Immunosuppressants and oral health
Six months of immunosuppressants have desiccated my mouth like border patrol to the Arizona deserts and leaving my teeth to the mercy of the bacterial cartels.
Dental plaque (a bacterial mass) loves to hide in the canyons, ridges, and crevasses in between my teeth. A healthy mouth can better fight them. The immunocompromised, which now includes me, have to stay vigilant.
I’m now paying the price for those times I was too tired or too lazy or too busy to floss. The cost: a root canal, a crown, and five fillings. This amounts to over $2,000 in dental work and four hours in the dental torture chamber.
Autoimmune diseases and oral health
Interestingly, this may not be my fault alone. According to Colgate, dermatomyositis itself could be the cause. Their one-pager on autoimmune diseases and oral health points out how these diseases can cause trouble with eating, swallowing, and dry out the mouth and lead to more cavities.
Dermatomyositis dries out the mouth and causes trouble swallowing, leading to more cavities.
That said, as my dentist and hygienist explained, the solution is better oral hygiene. Three or four cleanings per year could also help. That and spending the ides of March in the dentist’s office having my teeth repaired.
Over three weeks ago, after having issues with my methotrexate, my rheumatologist switched me to another immunosuppressant, azathioprine.
Azathioprine is the Mayo Clinic dermatomyositis expert’s drug of choice for treating dermatomyositis and polymyositis.
This drug best work without major side effects. That it starts with the letters A and Z is fitting because after azathioprine, for a largely amyopathic form of dermatomyositis, like mine, my doctors and I are out of realistic options.
Like methotrexate, scientists first developed and used azathioprine for chemotherapy. Scientists later discovered its use in suppressing the body’s formation of antibodies—proteins used by the immune system to neutralize anything that can produce disease. During the 1960s and 1970s, it became widely used for kidney and heart transplants, then later for rheumatoid arthritis.
Azathioprine works by inhibiting purine synthesis, a process in which the body produces organic compounds essential to synthesizing white blood cells. Since some of my white blood cells are attacking my skin (and to a lesser extent, my muscles), inhibiting their proliferation keeps a malfunctioning, overactive immune system like mine in check.
Interestingly, caffeine and theobromine (found in chocolate) are purines. The body specifically relies on purine synthesis to process both. That may explain my heart palpitations after one-too-many cups of coffee.
Azathioprine is finally healing my rashes
After only three weeks, my skin looks better than it has in a months, possibly since last June. The rashes have reduced and stopped itching altogether.
My scalp still itches and flakes in a manner that at times, is almost painful. My hair is also still slowly falling out. To date, the only drug to control these symptoms is prednisone in moderate doses.
I even feel stronger than I did on methotrexate and seem to build muscle more quickly.
As I wrote last week, I now need to control the chest tightness and shortness of breath. As I work up to the full dose, I think these symptoms will also go away.
The recent switch from methotrexate to azathioprine has caused breathing difficulties. Though it’s nothing life threatening, my doctors are not sure why.
For most mammals, breathing is easy. Astronaut Chris Hadfield, on Darren Aronofsky’s “One Strange Rock,” calls it the most natural thing humans do. Aronofsky (of Black Swan fame) then shows a baby inhaling minutes after being born.
Like most healthy people, for most of my life, I took breathing for granted. I swam as a child. I ran cross-country in high school. I hiked four of Colorado’s Fourteeners. I played schoolyard football.
I also took my lungs for granted. I built campfires. I smoked the occasional cigar. Nothing ever bothered them, even after one had to be deflated (then later inflated) so my orthopedic surgeon could access and fuse my spine.
Dermatomyositis and Lung Involvement
Dermatomyositis has changed all that. Without prednisone or hydroxychloroquine, I feel short of breath. My chest feels tight. Breaths become heavy, even if my lungs otherwise function.
Shortness of breath can be a symptom of dermatomyositis because the immune system attacks the chest muscles, restricting breathing. This is most likely the cause of my issues.
As Lundberg et al. write, breathing difficulties are well documented in dermatomyositis and are attributed to several causes, including the disease itself and complications like aspiration pneumonia and interstitial lung disease.
Breathing difficulties could also be the result of aspiration pneumonia: Muscle inflammation causes difficulty swallowing, sending liquids and food down the wrong pipe, eventually causing an infection.
Most concerning, dermatomyositis can lead to interstitial lung disease. In short, the immune system malfunctions as it tries to repair damage to the lungs. It scars and thickens the tissue around the air sacs, making it difficult to breathe and to get enough oxygen into the bloodstream.
Fortunately, my pulmonary function test in September came back normal. So too did my chest x-rays and high-resolution CT scans. Three weeks ago, I also had an EKG indicating my heart is very healthy.
Short-Term Possibilities: Medications
Ironically, the very drugs designed to keep my immune system at bay and help me breath can also cause lung damage. Methotrexate has been known to cause interstitial lung disease. So too have many anti-inflammatory drugs used to control autoimmune diseases, such as rituximab (Rituxan).
Azathioprine, the medication I am currently taking, can cause chest pain and increase your heart rate. Of course, those are also symptoms of dermatomyositis.
I returned to my rheumatologist earlier this week because I thought the drugs were causing the issues. He disagrees and believes my symptoms could be stress and anxiety.
Reversing the Cause and Effects of Breathing Difficulties
Two days later, after experimenting with taking the drugs at different times of day, I’m convinced we’re both wrong. I reversed the cause and effect, leading him to look at my symptoms as drug related rather than effects of the dermatomyositis itself.
I reversed the cause and effect of my breathing difficulties.
Azathioprine seems to clear up my rashes and keep my immune system from attacking my chest and shoulder muscles. But as soon as it wears off, the chest tightness and shortness of breath return. I get headaches. My heart speeds up. I become fatigued and want to head to bed.
In time, I think my doctors and I will fix this. Increasing the dose staved off the breathing difficulties all day, then they start to get better again a few hours after the drugs leave my body. Plus, switching medications is very hard on any body being attacked by its immune system.
Tapering down my corticosteroids and battling a run-of-the-mill cold while on immunosuppressants have left me exhausted this week.
Corticosteroids like prednisone are a first-line treatment for dermatomyositis and other autoimmune diseases but they can have serious side effects, especially when used over multiple months.
Side effects of corticosteroids
No one should be on moderate to high doses prednisone or any corticosteroid for forever. Long-term corticosteroid use has several side effects: cataracts, bone loss, easy bruising, muscle weakness, weight gain, high blood sugar, psychosis, infection, and heart disease. People with healthy immune systems should not use them more than a couple weeks. Not unlike heroin detoxification, anyone who does use them for more than a few weeks has to taper down to lower and lower doses until you ween yourself off them.
Interestingly, even short-term steroid use has positive temporary side effects: namely, steroid euphoria. When you take the drug, you feel happy, positive, like you can conquer the world.
You can also have surpluses of energy, functioning on five to six hours of sleep just fine. I actually started this blog last July, during one of my steroid highs.
Corticosteroids screw with my mental health
As you taper down, each subsequent smaller dose deprives you of that drug-induced happiness. Much like someone weening themselves off opiates, you become physically depressed.
For almost nine months, my doctors have been varying doses of corticosteroids, trying to ween me off, only to put me back on moderate doses when my other medications fail.
This has been a mental and physical health nightmare, causing me to feel, at times, bipolar. One month, I get 30 or 40 mg of prednisone each day. The next, I taper down to 20 mg. At one point, I was on only 12.5 mg per day. Lately, I am down to 17.5 mg, leaving me feeling depressed.
Battling a common cold while suppressing my immune system
I also had a cold this week, my second of 2019 (the last ruined my New Year and my vacation). Just the usual symptoms: nasal congestion, ear and headaches, dehydration, fatigue.
Unlike people with healthy immune systems, my body seems to slow down more when I get sick. Several of my coworkers were still functioning the whole week while infected with the same virus, while I had to take a day and a half off work. Tuesday, I did nothing but watch YouTube videos of chef knife reviews. I have not been to the gym in a week. I ate junk food trying to make myself feel better.
Positive note: Even if immunosuppressants like methotrexate, azathioprine, and hydroxychloroquine leave me down for the count when a cold strikes, prednisone is like Aleve (naproxen) or Advil (ibuprofen) on steroids (pun intended). I barely notice nasal congestion or ear aches after I take prednisone in the morning. At night, however, I struggled to breathe normally.
I feel much better today, but now I have a new concern: a new, unexplained allergic reaction.
An estimated 16.1 million Americans struggle with depression, according to the Anxiety and Depression Association of America. Few of those want to admit it. Fewer still want to talk about it.
Trying to explain the anguish and hopelessness inside you to those who have never battled mental illness is like a woman trying to explain the pain of childbirth to a man.
Sometimes people sense those overwhelming feelings of sadness, especially if you seem gloomy or unusually slow or uninterested in much of anything. But for many, such obvious signs are buried behind much more subtle symptoms. Some overeat. Some don’t eat at all. Many lose sleep. Others are always tired and sleep too much. More recently, psychologists have begun recognizing rage, anger, and irritability as symptoms of depression–especially in men, but also in women.
Trying to explain the anguish and hopelessness inside you to those who have never battled mental illness is like a woman trying to explain the pain of childbirth to a man.
Worse still, many turn to alcohol, drugs, work, and other addictions to bury their depression, anxiety, ADHD, or other mental disorders. When addictions cease to smother the pain, suicide becomes the last resort to make it all go away.
Depression and the American rock and metal scene
Among the most famous is Nirvana legend Kurt Cobain. A chronic drug and alcohol user since age 13, in 1986, he started using heroine. By 1990, recreation became addiction. Unlike softer drugs, repeated heroin use changes the brain’s structure and physiology, creating imbalances that are not easily reversed. Cobain’s brain became dependent on the drug, then developed a tolerance that made it almost impossible to ever deliver enough of the drug into his body to stay happy and alert. Eventually, overcome with mental, physical, and chemical depression, he shot himself.
Chris Cornell’s voice on Temple of the Dog’s “Hunger Strike” shows the pain he experienced most of his career that eventually killed him. The song is a favorite of mine and represents the best of grunge and has helped me get through some rough times.
Cobain is hardly alone among rockers and metalheads. Soundgarden and Audioslave frontman Chris Cornell struggled with depression most of his life until hanging himself in a Detroit hotel room at age 52.
Linkin Park’s Chester Bennington hung himself only months after Cornell, on what would have been Cornell’s 53rd birthday. Stone Temple Pilot’s Scott Weiland battled substance abuse for much of his career and a year and a half before Cornell died after overdosing on cocaine, ethanol, and methylenedioxyamphetamine (MDA).
At the core of these singers’ struggles, as a psychologist once taught me, are feelings of hopelessness. Little brings you happiness. Nothing seems to change. You feel trapped, perhaps useless, unwanted, unloved–even if you are adored by millions.
What causes us to feel hopeless?
Exactly what causes those feelings depends on the individual, but for many, myself included, we feel as though we are running from our pasts, from memories we long ago repressed, from demons we thought we exorcised on a therapist’s couch.
Some, like Cobain, have a family history of depression, suicide, and substance abuse, likely indicating an underlying physiological problem with the brain. For others, like Weiland, are simply unable to cope with terrible traumas and unprocessed memories of rape or abuse. Others still suffer from both.
Many have no idea most depressed people are in so much pain– even singers, musicians, writers, and artists whose lyrics, music, themes, and styles can be dramatic, morose, and hint at, if not signal mental anguish. Often, nobody knows until it’s too late. Our culture needs to change that.
Finding inspiration in those who have struggled
The past several months, I was inspired, though not surprised, to find these themes not just pop up, but humbly honored at rock and metal concerts. Dexter Holland of Offspring paid tribute to friends he lost. From Ashes to New dedicated multiple songs to Chester Bennington, citing him as a major influence and calling him a friend. Breaking Benjamin similarly called out struggles with suicide and depression. Five Finger Death Punch discussed substance abuse. Their lead vocalist, Ivan Moody, shared his own struggles and recent decision to stay sober.
Disturbed truly went out of their way, airing the numbers for mental health hotlines as they paid tribute to all that rock and metal have lost over the past few years to suicide or substance abuse as they played their ballad “A Reason to Fight.” While some have been critical of the track, calling it too much of a departure from Disturbed’s iconic twenty-first-century metal sound, I love the song. Hearing it live with candles and a supportive audience that clearly had many battling their own beasts inside.
Depression: You should talk about it. With the help of friends, family, therapy, medications, support groups, and hotlines, you can win the battle. I am proof of that.
In Disturbed’s words:
Don't let it take your soul, Look at me, take control We're going to fight this war This is nothing worth dying for
Are you ready to begin This is a battle that we are gonna win
Last week, at my annual check-up, my internist reminded how rare dermatomyositis is. He told me he had not seen a patient with the autoimmune disease in his 30-year-plus career. That includes his stint as a pharmacist.
He also relayed my dermatologist’s reaction when he first diagnosed me: “You won’t believe what this guy you sent me has.”
Like my internist, my dermatologist has been in practice almost 30 years and has not seen more than a couple cases of dermatomyositis. That was why it took him about two months to come up with the correct diagnosis. If not for the woman with him that day, it may have taken him longer.
https://www.youtube.com/watch?v=5ks-NbCHUns
Interestingly, legendary opera soprano Maria Callas had dermatomyositis. So did four-time Academy Award winner Lawrence Olivier, who many regard among the twentieth-century’s greatest actors. See him in Shakespeare’s Hamlet (1948) above.
An Opinion from a Consulting Dermatologist
The day he diagnosed me in July 2018, another doctor was present. I cannot remember her name or her specialty. My internist last week explained she was some sort of a consulting physician on rare dermatological diseases.
After reviewing my case file, she examined my rashes. I told her and my dermatologist about the trouble breathing and my blood tests, which showed elevated antinuclear antibody. I mentioned my internist’s suspicion I had lupus.
She then asked if I had trouble walking up the stairs. I said no.
She again examined the rashes on my fingers, neck, and shoulders. I now know what she was looking for: Gottron’s papules and a shawl rash–both diagnostic indicators of dermatomyositis.
She then walked back toward the computer and exchanged words I could not hear with my dermatologist. Five seconds later, they approached the front of the exam chair and suggested dermatomyositis.
“What in the world is that?” I asked them.
Too Rare—Even for Dr. House
Being an insatiably curious House, MD fan with an Internet connection, I had heard of most common and obscure autoimmune diseases, from rheumatoid arthritis to sarcoidosis to Behçet’s.
Dermatomyositis is an autoimmune disease in which your immune system attacks your skin and muscles. It is among the rarest autoimmune diseases on the planet, affecting 16,000 people in the United States and as few as five in a million people worldwide. Dermatomyositis with little to no muscle involvement, such as mine, presents in only 5 percent of those cases.
Dermatomyositis makes only one appearance in all eight seasons of House: a passing suggestion from Dr. Lawrence Kutner when the team tries to figure out what killed former team member Dr. Amber Volakis (Season 4, Episode 16, “Wilson’s Heart.”). Of course, Dr. Kutner is wrong. I can’t help, however, thinking the writers missed a great opportunity for a final, correct diagnosis for another episode.
