In the days after I was diagnosed with dermatomyositis, I had no idea what would happen to me. I knew little about autoimmune diseases, and this one was about as rare as they come.
To ease my
trepidation, I ordered hot and sour soup from our local Chinese dive.
I shoveled and savored spoonful after spoonful—as though the final
slurp would be my last. My worries about life’s daily helping of
bullshit melted away. My girlfriend’s concerns about her bridesmaid
dress seemed trivial.
I recalled the
articles, statistics, and prognoses I read online and pondered what
the rest of my life would look like. Would the few available
treatments work? Would I be on prednisone for a decade before dying
of liver failure or Cushing’s disease? Would I make it another five
years?
Fast forward eighteen months: My concerns, though understandable, could hardly be justified. Not one of my eight doctors was worried about premature death. Most said the condition could be managed. And it has been—without prednisone.
Before
dermatomyositis, I often let my anxiety determine my future: I spent
my days waiting for the next paycheck, for the next vacation, for
life’s next major milestone. I spent my nights tossing and turning
over what was to come. Like a fortune teller, I feigned awareness of
my future. Like a prophet, I predicted imminent doomsdays if my plans
fail to come to fruition.
Having
dermatomyositis has taught me I cannot hang my happiness on some
idealized future. Come what may, I have to accept myself as I am and
my life as it may be.
As that bowl of hot
and sour soup taught me, life is full of small victories and everyday
joys. One would think someone like me, who indulges in fine wines,
whiskeys, and world cuisine, would celebrate those happy moments. But
the small things in life are easy to forget. And sometimes, those
small things are the best part.
The red-blood-cell scare ended up being little more than my body’s Halloween prank. Not only were the ultrasounds of my kidneys and testicles normal and clear, but at my follow-up visit, the urologist did not detect any blood cells in my urine—red or white.
Doctors can be
paranoid and order premature tests. But given my medical history, I
should hardly be surprised. Better safe than sorry, as they say.
Good news: I avoided
having a catheter shoved up my urethra. And this latest medical
anomaly had nothing to do with my autoimmune condition.
Bad news: My prostate is once again playing tricks on me. The ultrasound showed no inflammation. Blood and urine tests ruled out an infection. Even with the $171.8 billion the United States spends each year on medical research, doctors have no proven explanation or treatment for the most common urinary tract problem for men under age 50—at least, not without evidence of an infection. Indeed, the prostate gland seems to have a mind of its own.
Horror films with homicidal clowns and chainsaw-wielding serial killers define Halloween for most. But for me, with my health issues, little is more frightening than an abnormal medical test: This week, red blood cells showed up in my urine.
What exactly this means is any doctor’s educated guess. The urologist ordered ultrasounds of my kidneys and testicles, but since I have to wait a week for them, I’m obviously not dying. He also wants to shove a catheter up my urethra with a camera to check my bladder. Fuck that.
Best case scenario, red blood cells in my urine are just that. Maybe I worked out too hard Monday night before the test. Maybe my prostatitis from three years ago flared up.
Worst case scenario, I have kidney disease or cancer. I’m trying not to focus on this because I’ve had my blood tested so many times the last year, doctors would have likely seen something earlier.
Waiting, yet again
Nonetheless, waiting for test results, yet again, sucks. My heart pounds. My mind wanders. My own House episode continues.
I wonder what a couple tests mean for the rest of my life. Is my autoimmune condition destroying my kidneys? Are my medications to treat it affecting my kidney or bladder function? Is this just a fleeting result with little consequence after this week ends? Is my anxiety for naught?
Yet again, I wrestle with existence, with the purpose of life amid a universe that so often seems to bring only suffering. Sure, I’m not alone. I have coworkers with their own autoimmune conditions. I have Facebook buddies with diseases rarer than my own. I even have a good friend struggling with a much more daunting medical issue and awaiting his own prognosis this week. Clearly, the universe does not discriminate.
But are we, as humans, really meant only to survive? What of happiness? Can we really ever flourish when each day brings a new anxiety of its own, when life becomes a series of test results and visits to specialist after specialist, each one delivering another worry, another reason to fret?
Ancient wisdom for the diagnostic life
Western religions teach us not to worry. Christ tends to his flock. Yahweh watches his people. Allah blesses those who believe. Good triumphs over evil. God provides. But what comfort is heaven when you’re trapped in diagnostic purgatory, hoping you don’t end up in oncological hell?
The Stoics teach us to seize the day as it comes, to immerse ourselves in the moment.
“True happiness,” writes Seneca, “is to enjoy the present without anxious dependence upon the future, not to amuse ourselves with either hopes or fears but to rest satisfied, for he that is wants nothing.”
Such advice is all fine and well for the healthy, even for the unhappy or the unemployed. But those ancient words ring hollow when “he that is” cannot be.
Chronic fatigue has made weeknights rough lately. Despite ritualistic adherence to my azathioprine and hydroxychloroquine, my autoimmune disease zaps my physical and mental strength before the day ends. The moment my right foot crosses the threshold into our condo, I want to collapse.
Eight-hour workdays leave me feeling like I spent them picking anthracite from the walls of an Appalachian coal mine. My muscles feel like they’re sagging—even though I have gained strength. I gulp ultra-caffeinated preworkout energy boosters to start and finish my days.
Sports injuries have forced me to cut back on gym sessions. Between plantar fasciitis in both feet and extensor tendonitis in my right foot, I’m surprised I can stand. And of course, my inflamed lower spine aches and causes me to slouch.
Admittedly, some of this will get better. Sports injuries can be avoided with proper stretching and icing. I have scheduled monthly massages to repair my muscles and soothe my spine. And I’m only three months into a new job—every day feels like a full load of college classes, everything a lesson.
But for those like me with an overactive immune system, feeling tired and stressed can easily escalate to feeling exhausted and overwhelmed. Since stopping steroids in August, I feel like I’m walking through life perpetually sick, minus the drippy nose and sore throat.
I sometimes feel demotivated and depressed despite being otherwise happy with myself and my life. I can’t concentrate enough to read. I don’t have much energy to write or play guitar. I’m embarrassed to admit it took two hours over two evenings to pen even this.
I finished the latest seasons of Netflix’s best shows (Lucifer, Sex Education, and Derry Girls) months ago. Amazon Originals have never held my interest. The NFL airs the least exciting games of the season on weeknights. I have no energy or focus to start my Disneyland-ride-long cue of Great Courses lectures.
Nonetheless, I’m trying to stay positive. I’m trying to meet my goals. I’m trying to reignite my passion to write. I don’t want to make life one long binge watch.
I recall all the great things that have happened since this disease began—a new condo, a new job, a new guitar, another year with my girlfriend. I even earned the next certification level for proposal management. Come to think of it, while these summer months have been a drag, I’ve actually accomplished a lot in the last 18 months. I just wonder, as I did months ago, how much of it was me, how much was the prednisone. Has chronic fatigue become my new normal?
Starting a new job when I have an rare autoimmune condition has been exciting, but frightening. I wondered if the insurance would be good enough, if my coworkers would understand, if my boss would wonder why I needed three afternoons off my first month there.
As I interviewed via Skype with my future boss, her boss, then my assigned market segment leader, I wondered if they knew, if they could hear the anxiety in my voice, if they could see it in my face. If they knew, would they think me incapable, too much of a risk?
Just before July 4, I made it to the final interview with the vice admiral of the company. Perched across from him in a window-seat of a downtown Phoenix high-rise, I was reminded how different in-person meetings are. We both seemed more human, as though each of us could sense the bioelectricity stored in our cells and moving across our nerves. We shared a strategic vision for sales and a dislike for bullshit and sugarcoating.
After a 45 minutes, he all but offered the job. At that point, I had no choice: I to ask about health insurance. I let him know how important it was for my dermatomyositis.
He took no issues with any of it and summarized the benefits package. He even shared his family’s own struggle with kidney disease.
The autoimmune sales team / support group
Fast forward three weeks. I flew to New England to eat breakfast with my new boss for the first time. She had a jovial, energetic personality and an openness few directors believe they can afford.
On placing her order, I discovered she has celiac disease, an immune reaction to gluten, the protein found in wheat, barely, and rye.
Hours later, I learned my East Coast sales manager counterpart has psoriasis. Two weeks later, I learned my boss’s boss–our chief marketing and sales officer–suffers from rheumatoid arthritis.
Schadenfreude be damned: Hearing my new bosses’ and coworkers’ assorted plights filled me with joy. Joining the team was like joining a support group for people with autoimmune conditions.
At last, I thought, people who understand what life is like for those of us who itch and burn and ache, who visit three specialists five times a year, who track and take as many pills as people twice our age, who wake up asking the gods what fresh hell our body will bring us today as we scour our cabinets for modern medicine’s half-assed attempts to make us look and feel normal.
I shared my condition with them. I explained my appointments. Far from upset, my team members were kind, sympathetic, and curious.
Like my last job, insurance is amazing. And we can take sick time for appointments. I have nothing to fear.
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.
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.
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.
