What’s Wrong with You, Part Two: Algias & Ologists

A blog series about my struggle with autoimmune disease.

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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.

Tiny ninja is watching you

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.

You need a mood stabilizer.

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.

Punctal Plug

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.

Jump-start those oil glands with heat.

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.

 

What’s Wrong with You? – Part One

This is Part One in a series of honest blogs about my journey into autoimmune disease and my fight against it.

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I haven’t done a whole lot of blogging since the end of 2016. It’s not that life has been dull; quite the opposite, actually. I’ve just been too tired to blog.

Tired. Now there’s a loaded word in our culture. We use it a lot, especially when we exchange pleasantries when we bump into each other or on Facebook.

“How are you?”

“Fine. Just tired.”

“Worn out, today.”

“Man, I’m tired.”

We’re all tired. It’s sort of the American mantra. We pride ourselves on our exhaustion because it illustrates how damn hard we work, and if there’s one thing Americans love, it’s hard work to the point of exhaustion. I don’t know why. I’m guilty of it, too. I love opening my planner and seeing the entire week covered in ink, scribbles in every corner. Sometimes I’ll actually make checklists of things I’ve already done just so I can have the satisfaction of checking them off.  Write possum story? Check! Clean up dog vomit? Check! Got the mail? Check–I got the hell out of that mail, today.

Accomplishments make me feel valuable. But I don’t feel valuable these days.

Until now, I’ve only put snippets of this part of my life on the blog. A mention of autoimmune here, a quick joke about OCD there. I brush it off so you will brush it off, so you won’t think there’s something wrong with me on the inside. Because it’s embarrassing to be sick. Because it’s shameful to be resting. Because when you see me at Kroger, I look just fine, and how can anything serious be wrong if I look fine? (“Fine” is, of course, a relative term–sometimes I go without makeup and you go home and tell your family you had a Kraken encounter.) And because when I tell people I don’t feel so well, they inevitably ask me, “Well, don’t you take supplements?”

“Do you take probiotics? You should really be taking one a day.”

“Don’t you go to the gym? It helps your immune system.”

“You really should do yoga. Lift weights? Walk more?”

“What’s your diet like? I always feel sick when I eat crap.”

And even though I actually have been doing all of these things, eventually, the questions begin to morph into statements that contain just a hint of judgment:

“Boy, you sure get sick a lot.”

“They must have a room reserved for you at Med Express. Hah!”

“You know, too many antibiotics aren’t good for you.”

“When I get a cold I just power through it.”

“At least you don’t have cancer.” And this one is particularly awful because I tell myself the same thing whenever I feel like crap: Hey idiot, you don’t have cancer. You’re not dying–you’re just tired.

How do you respond to those statements when you know that, on the inside, something is genuinely wrong? I knew I was getting sick a lot. I knew I was too tired. And no matter how I fought back, nothing changed. What happens when you do everything right and still feel sick?  What do you do when you literally cannot summon the energy to change a light bulb, as I could not last weekend?

After a while, you start to get paranoid. After a while, you wonder if they think that you enjoy being sick, secretly. (Illness is no picnic around here: Shawn maintains a strict schedule of soup, tea, hot baths, and Vicks rubdowns for the unwell, and no, you may not decline.)

For years I’d had general body aches and mild to moderate fatigue. Enough that I felt like a real slacker compared to Shawn, a man born with more than enough energy to power him through life and parenthood. Several years ago, I started having neck and shoulder pain. Huge trigger points formed in my neck–I wrote about it here. My wonderful massage therapist worked them out, but they came right back. My chiropractor moved my spine. The pain refused to abate. Eventually, my GP gave me a fibromyalgia diagnosis, a pain disorder characterized by sensitive nerves and fatigue.

Additionally, I had the weakest immune system imaginable. I caught every cold my kids brought home, and it invariably turned into bronchitis. One year I had to take six courses of antibiotics.

Six.

The problems began to compound in graduate school when I found myself under intense stress. True to the American spirit, I couldn’t simply get through academia; I had to beat it into submission. I worked harder and longer and more intensely than I’ve ever done, for anything. I mean, I don’t even work that hard at being a mom (as evidenced by Benjamin’s report card, which says he gets so wound up in class that he destroys his projects before he finishes them.) And while I did well in my MFA program, halfway through I was diagnosed with Sjogren’s Syndrome, an autoimmune disease characterized by dry eyes, dry mouth, digestive problems, fatigue (yes, more!), and widespread pain.

Autoimmune issues are believed to be born of stressful events. In the last ten years of my life, I gave birth to two children, lost several dear friendships, was diagnosed with obsessive-compulsive disorder, and got a master’s degree. It was in the cards, I guess. The doctors told me that once an autoimmune disorder is diagnosed, it never goes away, and they tend to multiply as time goes on. Hashimoto’s, Scleroderma, Lupus, Rheumatoid Arthritis, Sjogrens, Multiple Sclerosis. You can only manage the symptoms. They said it will get worse, over time, and it’s not unheard of for a patient to die.

Well, they didn’t tell me that part, but research filled in the blanks. Dammit, WebMD. I just can’t quit you.

I think it’s time for people like me to
stop being quiet about what’s going on. Fear of being labeled a complaining wimp, fear of being pitied, fear of being judged have all kept me from really talking to people about what has been happening inside my body. No, I don’t want to run into you at CVS and answer, “Crappy,” when you ask how I am. I want to say, “Fine.” (Actually, I want to say, “I’ve just won a Pulitzer,” and smugly buy my Sensodyne.) But when I say I’m fine over and over and over, am I really adding anything good to my world? When I deny that there is something wrong with me, something that I believe affects far more people than we realize, am I missing an important opportunity to speak up and speak out? Am I treating myself like the wimp I’m afraid you’ll think that I am?

My silence buys me a pass to continue to feel sick rather than seeking a scientific answer. The more I say, aloud, “I am sick, I am in pain, I am not well,” the more real it becomes. When it’s real, I can no longer ignore it. When I can no longer ignore it, I have to act. Because this autoimmune problem, this deflated life, will kill me if I don’t. Besides, if I’m going to call myself a writer, don’t I need to use these words to add something to the world? You know, something other than stories about Ben and his hatchet collection.

But it’s hard to ask other people to give a hoot about me. We have a lot to focus on in this country, right now. I’m one tiny person who is, at least, still managing to get through her day. Why am I deserving of the time it takes to read a blog about a sore neck? This is why people keep quiet about their personal struggles, of any kind.

I wrote this blog a week ago but have not yet found the courage to click the publish button. I don’t know when I’ll publish it because I’m not quite sure I’m ready to talk about this. I’m not sure my words matter in the grand scheme of things and I’m not quite sure you won’t roll your eyes when you read this.

I went to a naturopathic doctor recently–not a hippie dippie crystal dealer, but an M.D. and a D.O. who have treated patients like me in their clinic, who have science on their side and a plan for me in mind. It’s another attempt at healing, and I am both hopeful that it will work and protectively skeptical that it will not.

I’ve been reading Sonya Huber’s Pain Woman Takes Your Keys and Other Essays from a Nervous System. She writes far more beautifully about chronic pain and autoimmune disease than I ever could, but she has also inspired me to do the same. I want to write about my journey, a chronicle of sickness and the quest for health. And then I get afraid and close the laptop for another day because I don’t want my headstone to read HERE LIES LAURA: she was sick and tired and forced everybody to read about it.

If you promise to be understanding, I promise to be honest. And funny.