January 11, 2014

My Journey on Depo Provera, Part 2 of 3

While my rib was healing, I would spend hours walking the side-streets of Kalamazoo, reading a book to maximize time and keep me from my other form of self-medicating, alcohol. Soccer, running, swimming, cycling: It all came to a rib-grinding halt. And that was before the cold set in.

It's hard to explain the excruciating and explosive pain that is coughing with a broken rib, and my face was a constant wincing grimace as I skulked the backroads of my neighborhood. Slowly, my rib began to heal and I was finally able to get back into what I loved, but my muscles had atrophied despite my incessant walking, and I had this cough that I couldn't shake.

I pinned the cough on the cold and rib, combined with a Spring of snowy Michigan cycling. By May, when I moved to Seattle, I had gained about 7 pounds despite my incessant activity, and the cough was beginning to take a toll on my running.

August 2010

Mid August, 2:00 am was my first late night coughing fit. Then the fatigue set it, cloudy exhaustion like walking through a dream. Doctor after doctor diagnosed me with asthma, though we couldn't seem to find an inhaler that helped. I was continuing to gain weight, partially explained by my chronic fatigue and stunted running schedule. Cleaning solutions, dust, truck exhaust--everything set me off into a desperate coughing fit. The first time I hiked Mt. Si with my partner, my lungs were seized with overpowering coughing fits, and I was fighting a creeping anxiety attack that now insinuated itself into my growing list of symptoms. Shaking at the top of the mountain, gasping, I tried to hide my tears from my partner.

"When we get down to the bottom of this mountain, you're making an appointment with another pulmonologist." I made that appointment, and my new doctor gave me a battery of lung function tests. After passing each and every test in the 99th percentile for my age, my doctor was flummoxed. That's when I asked about food. I was breaking out in constant hives, and I had a feeling all of my inflammation could be connected.

"You don't think this is all related, do you?" My pulmonologist stared at me, waiting. His question was clearly rhetorical, but to appease me (and get me out of his office) he agreed to refer me to an allergist for testing.

Here's what I found out I was allergic to:

As a lifelong vegetarian living in a temperate climate, I knew that neither of these options were my culprit. "Guess you don't have hives after all," said my pulmonologist the next time I went in.

"But I have one right now, on my arm. It itches like hell!"

"No, you don't have hives. Just a heat allergy."

I raised up my sleeve and pointed at the large welt on my arm. "So what is that?"

He leaned over to look and let out a quick "hmph, huh" before turning back to his paperwork and writing out a prescription for another steroidal inhaler.

Stellar service, man. Thanks for listening.

August 2011

My asthma attacks are almost every other night. Each episode is the same: I go to bed exhausted and quickly fall asleep, only to wake violently an hour later, coughing wildly and clutching at my chest. I feel like I'm drowning. My stomach sucks in as I struggle for breath, and tears stream down my face. "Help me, please" I beg, in my mind, but all I can do is gasp and cough and sob and hope that this time, like the other times, the attack will begin to fade. "Please help."

Each time these attacks happen, my partner runs out to the kitchen to make me Theraflu. Neither of us understands how or why this calms me, but it does, and my partner sits next to me in bed rubbing my chest in small circles, holding me while I flail and heave, trying to keep air in my lungs, gulping Theraflu in between fits of coughing. Eventually the medicine begins to kick in, and the asthmatic fit begins to subside, and I sit hunched over in bed, completely drained, tears sliding down my face as I try to remain as still as possible. Still. Lifeless. Like I have expelled some core of my being and nothing is left but this wet, ragged body.

By now, my partner and I are researching alternative diagnoses during our every spare moment, and we find out that my theory about food intolerances is supported by what little research is out there on this new, contentious topic. I bring up the possibility to my otolaryngologist following my laryngoscopy.

"Well, your throat and esophagus are indeed inflamed. And it's very likely that the hives were your body's initial reaction to something it wasn't processing correctly, and it's turned into a systemic reaction. Actually, food allergies make a lot of sense." I could have kissed her. Woman doctors for the win.

A few days later, my fridge stocked with veggies and juice, I began a strict elimination diet.

September, 2011

I've dropped almost all of the weight I'd gained while sick. My asthma is almost gone, and my running pace down to a 7:30. When Jeff and I decide to hike Mt. Rainier, I practically run up the snowfield to the top.

By the end of the diet, I have a few foods that I suspect, but I'm in denial and confused by the fact that my hives never totally went away. I had also started my steroidal inhaler within a few days of my diet, so I can't be sure which solution had caused which change in symptoms. Hoping that the diet had reset my digestive system, I dove back in to the foods that I had craved every moment of the past two months.

Suddenly, my inhaler stopped working.

December 2011

Jeff and I head to Belgium for a quick trip to visit his best friend from Columbia. Land of beer and cheese and delightful little chocolate-dipped cookies with every cup of coffee, Jeff and I spend the first several days immersed in pastries and Trappist beer.

By the end of the trip, I'm desperate for a salad.

When I get back to Seattle, my health plummets. I develop the flu, am covered in full-body hives that whirl together into planets and constellations, am constantly hungry and bloated and dizzy. Fog and fatigue grip my brain so I can't hold a conversation or even complete a sentence, and I suffer panic attacks and anxiety so strong that I have to sleep on the couch, wrapped around my dog. The flu comes with ear infections and after a month of being ill, I wake up with half of my face drooping and numb.

My pulmonologist gives me a steroidal nasal spray. "You don't have asthma," he conceded, though he would now outright shoot down any suggestion that my onslaught in symptoms could be connected. I try the spray in desperation, but the side effects are too much for me.

March, 2013

I'm desperate, sick, barely functioning. I can't think in class, and my anxiety is accompanied by sudden shifts between depression and irritability. When I come home from school, all I can do is gulp down some Theraflu and fall into bed.

That's when I meet Dr. Deichert, a naturopath at Swedish Hospital, and he convinces me to try another, stricter, clinician-supervised Elimination Diet. I'm not thrilled at the idea; the last time I did this diet I went through severe withdrawal from sugar and bread products, and was miserable and hungry--if finally thin and active again. But I dive back in, and begin to tune in to each shift in my body and mood. The cough disappears, my mind and mood level out and clarify, and I'm once again hopeful, so hopeful, that I'm back to my old self again.

Then I add in wheat.

WORLD OF PAIN! The effects are extreme: Nausea/motion sickness, migraines, fog brain, GI issues. Asthma attacks followed by hives. I take wheat back out and everything clears up again.

Sweet merciful shit. I'm a fad allergy
I'm Gluten Intolerant. 

I'm also in full-fledged denial, so I continue to test and re-test wheat. At first, my symptoms always come in a particular order and within 3 days of wheat ingestion. I finally stop wheat all together, and the longer I'm off, the quicker and stronger my reaction becomes. By the end of the year, my reactions are immediate, and my Pavlovian Instinct kicks in. I no longer crave anything made with wheat, because all I associate it with is intense, week-long pain.

The hives are still there, spotting my arms now and again, and the cough lingers and slows me down, but I can run, and I can think, and I can sleep through the night, and I feel happy. Dear lord I feel happy.

Fuck gluten. I'll take Happy, please.

Summer, 2013

Something has changed... I'm not just reacting again, but now I'm hit straight in the gut. I'm cold all the time. I seem to cough every time I eat, and am developing new hives, blistered hives that itch and burn, rising across the tops of my fingers and back. I'm exhausted, yet my heart races at night, and I'm averaging about 4 hours of sleep each night. At the same time, my usually low blood pressure is now unusually low, causing nurses to pause and retest each time I go in for a check-up. I faint easily. The symptoms seem to abate for about a month, but I'm so busy worrying about being pregnant that I barely take notice.

I had missed my birth control shot.

A month and a half late, I finally get my Depo shot and head out to Twisp three days later to run Angel's Staircase with my man. I was anxious but hopeful -- my training hadn't gone well but the past couple weeks I'd been feeling a little better. 

It was a beautiful, painful, 7 hour coughing fit.



I was on antihistamines for the rest of the weekend, trying to keep my coughing fits at bay. It was like I'd walked right up into those clouds and never came down.

I began having anaphylactic reactions to everything I ate. My throat would swell shut, my eyes itched, my lips and tongue would swell up so much it alarmed my classmates. I started getting debilitating migraines, and my nausea was so severe that I was afraid I'd barf every time I got on the bus to go to work. All of the previous symptoms were there, too. They were unremitting, and I began to fear food, going the entire day without eating until I was safely home with my antihistamines, my boyfriend, and my bed. Then Jeff finally put everything together: My symptoms, the progression, the sudden new onslaught, the Theraflu and antihistamines and elimination diet, the timing when everything had started:

And we had a new, strong suspicion that my birth control had triggered it.

(If you have experience with gluten intolerance, histamine intolerance, chronic pain or birth control side effects, I'd love to hear from you in the comments section. I am here to learn from your journey, as well.)

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