A blog series about my struggle with autoimmune disease.
Autoimmune problems start slowly. Sneakily. Autoimmune is a ninja. By the time you realize you don’t feel well, it’s been hiding in the bushes for years, getting to know you and your body. If you woke up one day, as we do with the flu or a norovirus, and felt awful, you’d know you were sick. You’d know something was wrong, that your body was under attack. But when the symptoms come on so slowly that you don’t even notice them, it becomes a psychological game rather than a physiological one. Perhaps in September, you take a few extra naps. In February, you get your third bad sinus infection and bronchitis. In June, your bones hurt. In October, you spend an extra hour in a recliner. In January, you find yourself declining invitations from friends. The change happens so slowly that you’re not even aware you’re deteriorating. But after two years, you’ve gone from an active, happy person to an exhausted couch potato, and you can’t quite remember how or when it happened, but you don’t think you used to be this way, and you’re pretty sure you once had more energy, and some vague feeling tells you this shouldn’t be normal.
But the doctor’s tests say you’re normal. You went several times and returned home with assurances that your body isn’t sick. There’s no infection, no evidence of cancer. You’ve been tested for Lyme Disease and mono. Your thyroid is working and you’re not anemic. You have, however, been asked if you’re under a lot of stress and if your spouse is supportive and if you would like to try something to stabilize your mood. In the absence of any other diagnosis, you’ve probably said yes to the antidepressant, even though it nauseates you in the evenings.
My autoimmune ninja crept into my life in just this way. Quietly. I don’t even remember which symptom came first. Was it the neck pain or the heartburn? Was it the fatigue or the anxiety? The dry eyes or the stomach problems? Was it the sensitive teeth? The receding gums? Was it the bone-breaking pain of phantom influenza that came and went at random? Was it the foggy sensation that crept into my brain and made me forget a face I knew well, recall the title of a book I loved (mortifying in an MFA program), call Andy by his brother’s name, or follow simple directions?
I don’t know. But a year or two after Benjamin was born, I told my family doctor something was wrong. He felt knots in my upper back and neck and gave me injections of cortisone in these trigger points. He told me to take vitamins. He gave me an anti-depressant to help with pain and sadness. He adjusted my neck and prescribed a muscle relaxer.
I saw him many times over the next three years. Stomach problems. Migraines. Flu aches. Urinary tract infections. Back pain. Neck pain. Anxiety. Each time, I left his office with a prescription in my hand for a new pill. Each time, I left his office hopeful that I’d start to feel better and quietly certain I would not.
Eventually, my doctor began to mumble the word fibromyalgia when I’d see him, though he did so quietly. And he refused to write the word in my chart. He said that once the word was in my chart it would be there forever, on every computer and in every doctor’s mind when they treated me. Future doctors would be more likely to prescribe pain pills, or perhaps they’d be more likely to stick to the old theory that it was psychosomatic. I wondered if his reluctance held me back from treatment. Ultimately though, it didn’t matter because a year later his PA would unknowingly write it in my chart. That’s when I understood why he hesitated to commit the diagnosis to digital eternity. That day, I became not just Laura, but Laura Who Has Fibromyalgia.
I understood, once it was written down, that we become our medical conditions. On my own, I was still Laura. To my kids, I was Mommy. To the cat, I was still that clumsy idiot who puts food in the bowl way too slowly. To anyone with a stethoscope around their neck, however, I was “Patient presents signs of fibromyalgia.” That was me. Female, mid-thirties, family history of skin cancer, allergic to sulfa and Cipro, fibromyalgia.
The name of whatever disease you contract carries with it a new blueprint for your future medical endeavors. It’s fun with Greek and Latin. Once you have your very own algia or osis or itis in your chart, they send you to an ologist.
The gastroenterologist looked in my stomach no fewer than four times, took samples of my stomach tissue, and stretched my esophagus to help food go down. (Given that a hearty belch can still propel a Honeycrisp chunk out of my throat and 18 inches across the kitchen table, I’d call his endeavor a failure). He told me to take Prilosec, a proton-pump inhibitor, for my acid issues, which of course could lead to a decrease in bone density and early osteoporosis as well as a heightened risk for a C. difficile, but it was okay because there were pills for those things, too. I also needed to consider Zantac and Prevacid. And everything seemed “fine” to him, overall. No evidence of disease.
Back at my family doctor, I told the PA that my eyes were really dry. And when your eyes are drying out and feeling for all the world like they’re full of silica and charcoal, when you cry and press your sclera (the whites) into the cool mist of a humidifier for the entire length of January, they send you to another ologist. An ophthalmologist. He prescribed drops. He told me to use gel. He told me to use ointment so thick that I walked into a ficus one night. He told me to sleep with a humidifier, to turn off fans and block drafts. He pushed punctal plugs down into my tear ducts to keep the moisture from draining away. He gave me a prescription for Restasis. You know that eyedrop commercial with the pretty ophthalmologist who happens to look like a model? That stuff.
“Be warned,” he said. “It’s very expensive. And you won’t know if it’s working for at least 6-9 months.” I paid $120 for a one-month supply. Later I found out clinical trials had shown Restasis doesn’t even work for people with punctal plugs. When I asked him about it and the $1,080 I’d spent without results, he shrugged.
“I don’t know about that,” he said. “Come back in four months.”
My mouth dried out, my gums receded and exposed nerves. The fatigue worsened, the aches deepened into my bones. I asked my GP for a Lyme Disease test. And I asked to be tested for Sjogren’s Syndrome, an autoimmune disease characterized by dry eyes and dry mouth as well as fatigue and digestive problems. When the blood test detected antibodies for Sjogren’s–another official diagnosis–he wrote it in my chart. And so I became not just Laura with fibromyalgia, but Laura with fibromyalgia and Sjogren’s Syndrome. I became Laura, with autoimmune diseases. There it was, written in my chart. Plural.
There were other ologists: neuro (who insisted I had carpal tunnel and ignored my headaches), gyno (who told me I probably had a cyst and rushed out the door to deliver a baby), and uro (who laid me down on a metal grounding plate and cauterized the inside of my bladder without anesthesia). But the most important ologist for a person with autoimmune problems is the rheumatologist. They are supposed to be the hub of your autoimmune wheel, the doctor who takes over your care, who has spent a lifetime training and learning and trial-ing and error-ing.
I waited for six months to see my new ologist. When I arrived at his office, I had to wait for two hours. He came into the exam room, he reviewed my digital file in silence, and he produced a lab order for bloodwork.
He said, “Seems like Sjogren’s and fibromyalgia. We’ll see what the blood tests say. Come back in six months.” And then he was gone.
There’s a moment when I’m referred to a specialist, to an ologist, in which I’m flooded with hope. I hear my family doctor say, I don’t know how to help you, but here’s someone who can. Here’s someone with an answer for you, who’s spent his or her medical career devoted to people just like you.
But my ologist isn’t devoted to people like me at all. He’s devoted to diseases like mine. He’s devoted to the Latin words in my chart. I just happen to be the living host, the box that contains the puzzle in pieces. I’m far more interesting in my disassembled state.
Find the corner pieces first. Lay them out. Then search for the side pieces. Lay out your framework. Drink tea. Go for a walk. Come back to the puzzle in the future. Take all the time in the world because working a puzzle is a lazy affair, an exercise for a rainy Saturday afternoon when the world moves slowly and life’s urgencies have evaporated.
One piece every six months.
If he ever put the puzzle together, would it be me? Or would it be a Vitruvian Man, his muscles and joints glowing green to indicate a successful treatment of symptoms? Would it be a list of the pills he prescribed me? Would it be a featureless body and a littany of complaints checked off one by one, now addressed and nullified? Neck pain: Tramadol. Stomach issues: Prilosec. Insomnia: Ambien.
Patient’s quality of life: Perfectly acceptable.