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.
Working at university has made my vocabulary worse. I now wage my own vendetta against jargon, gobbledygook, and sentence structures that would make my sixth-grade language arts teacher cry.
Sure, I could blame the pedantry of the ivory tower or the
posturing of men and women trying to outdo each other with words
rooted in Greek and Latin. They tie their identity to these flashy
displays of learning: Their words and sentence structures are signals
that after a decade in post-secondary schools, indeed, they belong.
To be an intellectual elite is to believe that out of seven billion humans, you alone own the infinitesimal fraction of knowledge that will save humanity from itself.
In academia, identity is attached to superiority. To be known is
to be better than the rest, to have your papers more cited, more
read. To be an intellectual elite is to believe that out of the seven
billion humans on the planet, you and you alone own the infinitesimal
fraction of knowledge that will save humanity from itself. And what
better way to prove that than to hide your ideas beneath concepts and
language so convoluted, so abstruse that you may be the only human
being who truly understands what you mean?
Words Without Meaning, Without Truth
As Frederic Nietzsche points out, those who conceal their ideas
behind jargon and gobbledygook often do so deliberately. Ever the
linguistic magicians, they trade truth for illusion. He writes: “The
essential element in the black art of obscurantism is not that it
wants to darken individual understanding, but that it wants to
blacken our picture of the world, and darken our idea of existence.”
Nietzsche wrote this in 1878. He was a hundred years ahead of his
time, anticipating critical postmodernism before it became an
academic rage. The postwar generation scribbled pages of
unintelligible, useless prose that earned the ire of intellectuals
ranging from far-Left linguist Noam Chomsky to conservative political
theorists Michael Oakeshott and Leo Strauss.
Postmodernists deny reality and reject the possibility of
reliable, objective knowledge. For them, there is no answer just as
there is no spoon. Morals are relative. Existence is futile.
Aesthetic standards for art and beauty are impossible. Everything is
viewed with skepticism and irony. Nothing is what it appears—even
language itself. Think Fight Club. Think Matrix.
Darkened ideas of existence, indeed.
Postmodernism explained in three words: There is no spoon.
The Danish sociologist Jürgen Habermas observes the irony behind all this there-is-no-spoon nonsense: Anyone asserting language has no meaning must use language with meaning to defend their position. Habermas calls it a paradox. I call it dishonesty.
Bad Writing: A Simpler Explanation
During my graduate education, postmodernism and Marxism were easy
targets to blame for bad writing. These approaches allowed professors
to justify their hatred for capitalism and Western civilization while
simultaneously collecting paychecks for teaching students to question
all truth but their own.
Managing proposals for astrophysicists and virologists, I’ve had
to re-evaluate my earlier position. As the medieval theologian
William of Ockham reminds me, I need not come up with a complicated
explanation for a phenomenon when a simple one will suffice. In other
words, academics may simply be bad writers.
Researchers learn how to be a great researchers without learning
how to explain their research to both academic and lay audiences.
Quality writing is neither rewarded in peer-reviewed journals nor
considered in the promotions and tenure process. After all, why waste
time cogently articulating results and ideas when you can let your
data and neologisms talk for you?
Those not taught how or encouraged to write well at the last minute string together convoluted passive sentences that recall the words of English novelist George Orwell: “The writer either has a meaning and cannot express it, or he inadvertently says something else, or he is almost indifferent as to whether his words mean anything or not.”
The Curse of Knowledge
Academics spend almost all of their time with their own ideas in
their own disciplinary monocultures. To fit in, they use the same
jargon and awkward sentence structures. They forget the rest of the
world has no clue what their forced acronyms means or that words like
parthenogenesis could easily be rewritten as virgin birth.
Academics simply cannot imagine what it is like to not know what they know.
Much like country clubbers disconnected from the other 95 percent of income earners, academics have an impossible time appreciating and communicating with outsiders. They simply cannot imagine what it is like to not know what they know. They suffer from what Steven Pinker terms “the curse of knowledge.”
Thanks to obscurantism, to postmodernism, to the curse of knowledge, over the past few years, my writing has become less florid, more direct, more plain. I write with clarity. I strive for brevity. To be read is to not to have eyes fixed on your work; to be read is to be understood.
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.
