Scenes from a Mystery Illness

I ran my half marathon in June 2011, and now it’s August and I haven’t run much since. I’m feeling a little gross about myself and a lot out of shape, so I start running again. I’m pretty determined about it this time, and start meeting up with Minnie three days a week for cross-training. For the first time I am mixing cardio with strength training and it seriously works. I feel great, but sometimes, out of nowhere, my left side starts hurting. Shooting pain, awful hurting. I chalk it up to over-training and try to cut back. I notice it, but mostly I don’t.

It’s two days before Halloween and the traffic and weather are so awful that I nearly get hit twice driving to the clinic. I need my annual exam, but the closest doctor’s office in my insurance network is over 130 miles away. When they take my blood pressure it’s soaring, and I have to meditate a minute before they take it again. Low, they say. Normal, I tell them. The doctor finishes my exam by pressing along my belly for discomfort or pain. On the left side I gasp and recoil. “That’s no good,” she says, pressing over and again. She presses further up my abdomen and it still hurts. “Oh nevermind,” she says. That’s not her jurisdiction.

I get home from the clinic, and sit down with my laptop. Useless fact: my laptop is named Sony-Bono. I google left abdomen pain, just to have my recent searches pop down to reveal that I have made this search before. In not noticing my pain, I’ve phrased this question to google 10 different ways. I call my doctor, and request a day off work. I’m driving 130 miles.

My doctor and I chat a second. He presses my abdomen this way and that. He asks me to get my blood drawn to help rule out ovarian cancer. This will be the first of many blood draws I am given to rule out one cancer or another. I didn’t know it was an option. Diagnosis: Ovarian Cyst. He schedules me for a pelvic ultrasound. It’s Friday morning, but they won’t see me until Monday. I’m using sick days I haven’t even earned yet. I tell my mom I’m not sure I’m going to go. I need to get back to work, and the insurance I get through my job instead of through my parents will start in a month. It’ll be based in Seattle, and I’ve managed to live this long with the pain.

I’m 17 miles outside of Portland on I-5 when my side sets on fire. The pain is insane, triggered by nothing, and debilitating. I pull off the freeway, panting like I’ve run at top speed, and cry until the pain lets up. I’m not going to make it home. I cautiously navigate myself back to my parents’ house, call my guy to explain why I don’t think I’ll be bringing the car back on my own, and cry until the pain stops.

My guy sits in the waiting room and they lead me to the ultrasound room. My bladder is impossibly full. They make you drink 32oz of water right before your appointment, and they’re always running late. They do the ultrasound, and I begin to understand why so many women lose all shame after pregnancy: Your body is not your own. When it’s over they tell me I’ll hear from the radiologist by the end of the week. He calls the next day. Everything is normal. Not an ovarian cyst.

I’m hurrying between sessions at a conference we’re hosting in Victoria, BC in November when my side pain becomes so severe I have to stop and sit down. I press my fist into my side hoping the pressure will help. This happens several times a day.

It’s the last day of November and my new health insurance kicks in tomorrow. I wake up dizzy. Just lying in bed I can tell something isn’t right. When I finally get up to walk across the room, I tip over. I can’t walk in a straight line. I can’t focus my brain on anything. When I lay down I want to throw up, but mostly I want to sit very, very still. I call my advice nurse who asks me series of questions about what I am experiencing. She tells me to hold a moment, “I just need to see if they want me to recommend you go to urgent care or the ER.” They choose urgent care and for the first time explain to me how I can get care in my own city instead of driving to the next state. I’m swept right into urgent care, and after one look at my blood pressure, hooked up to an IV and heart rate monitor. The numbers popped up on the screen. Low, they say. They’re right, it’s low. They’re concerned with my dizziness; I’m intent on having them figure out my side pain in the process. I take in fluids and they schedule me for a CT. They bring me a warmed blanket every time they check in on me. Diagnosis: possible kidney stones. They take me for my CT. The doctor comes back with the news: Not kidney stones. I do have a slight infection he says, and prescribes me an antibiotic before sending me home. For the second time, my guy has had to work from a hospital waiting room. This will become a weekly occurrence for him.

The antibiotic they prescribe for my slight infection is Cipro, the antibiotic used for anthrax exposure. They caution that it might cause your Achilles tendon to rupture. It makes all of my tendons ache and for the first hour after taking it I am flush and get hot all over.

Finally, my insurance kicks in and I make an appointment with a doctor recommended by my co-worker. She can’t see me until February, so I choose someone else. She listens intently to my journey and shares all her thoughts with me. She wants to run a few tests. She suggests a screening for possible cancers. She asks me about my guy and our sex life, and gently as she can says we should do an STD test anyway. I don’t care–at this point my body isn’t my own, it and my whole life belong to an illness I can’t define. Plus, I’m not worried about the outcome. Diagnosis: possible STD. She takes her tests, sends me to get blood work done, and tells me to try a fiber supplement. Come back in two weeks.

….

It’s not an STD.

….

I have my bloodwork done for my life insurance physical. They mail you the results so you can see exactly what your blood says about you. My good cholesterol isn’t where it should be, but otherwise on paper I look perfect. They tell me I’ll have to pay more for my life insurance because of my weight. I wonder how actually obese people afford this shit.

I quickly run up my deductible. It’s the last month of the year, which means it’s about to reset. I’ll run that one up too. Even with insurance I am overwhelmed by medical bills. I can’t imagine doing this uninsured. I think that in that case you can’t afford to try to diagnose something that isn’t killing you.

….

It’s Monday which means it’s time for a ridiculously long staff meeting. My side shoots with pain and I quietly clutch it hoping it’ll go away. This happens six, seven, ten, twelve times a day. I don’t see many of my friends in the evenings because after an entire day in pain, I don’t have the energy to do anything.

….

My doctor is stuck. She refers me to a specialist who I won’t be able to see for over a month. In the meantime she asks me to try a change in diet. Diagnosis: gluten intolerance

Nothing makes you want a sandwich like giving up gluten.

….

I meet with the gastroenterologist. She asks some questions and makes some suggestions and then decides on surgery.  They’ll go in, she tells me, and see if they can see the source of my pain and ensure my intestines are free of tumors and blockages. She sends me for a blood draw.

It’s the day of my surgery and we awake to four inches of snow at the top of a Seattle hill. I drive. At the bottom of the hill the light turns red and I ease onto my brakes but we keep going on through. Luckily we’re the only car driving snowy roads at 6:00 am. We park downtown and climb the hill to my hospital. Seattle is all hills. They check me in. I’m weak because I haven’t eaten in over a day.  When they take my blood pressure they tell me it’s normal. It’s high, I tell them. They put me under and then I’m coming to. They give me a carton of apple juice and the surgeon says everything looked good. My guy doesn’t know how to drive in the snow but he does it anyway. I spend the rest of the day lying on my couch watching snowflakes.

I go in for my follow up. She tells me their best guess. Diagnosis:  seizure of the large intestine. I am given a muscle relaxant to try for thirty days. It won’t help.

My guy’s coworker invites us to her home for Passover. We arrive with three bottles of my favorite wine in tow, and her grandmother is worried we’re going to expect a full-on Passover. We don’t. We eat a delicious dinner, and hang out talking and drinking. I get quieter and quieter, my answers shorter, just smiling and watching everyone else talk. My guy gives me a look, and he knows. “It’s getting late,” he says, and he takes the lead with our goodbyes. I thank everyone. They close the front door behind us. As we walk across the lawn, I crumple. “I knew you were hurting,” he says, wiping my tears and helping me to the car. This happens a lot — I get quiet until I’m away from my friends.

I am given a low dose laxative to try for thirty days. It won’t help.

….

Spring has arrived and it’s not like a Seattle spring at all. It’s warmer, sunnier, and brighter. I am riding a rented bike through the fields of tulips in Mt. Vernon with two of my best friends. We’re peddling along, me in the front, when my pain comes fast and hard. I slam on my breaks causing a pseudo pile-up behind me while I crumple in half. Nothing is a risk-free activity.

….

My doctor tells me that my last medication option is a low dose antidepressant to help me better ignore the pain. I make an appointment with a naturopath.

….

The naturopath draws blood. She asks me to try the elimination diet. She keeps saying it’ll help to heal the gut, waving her hand around her abdomen. I’m not allowed to eat corn, soybeans, gluten, citrus, dairy, nightshade vegetables, meat, fish, sugar, caffeine, or alcohol.

….

I’m crying in a parking lot off I-5. After two weeks on the elimination diet, I’m asked to do a week more. I feel so stupid, sobbing, but it’s hard. It’s hard to not be able to eat. It’s hard to go to the doctor every two weeks. It’s hard not knowing when it’s going to start, or how long it will last. It’s hard to devote my life to something I don’t want in my life at all. “I want to stop now,” I tell my guy. It’s become an obsession. He’s stroking my hair. He’s exhausted by this too. He always looks at me with barely masked concern; if I touch my side, his eyes follow. “Okay,” he says. “You can take a break.”

….

I am at work, thinking. Thinking about the idea of being in pain forever. Of never understanding why it happens, or how to limit it. A coworker asks what it’s like; If it hurts all the time. I tell her it’s like someone has their hand wrapped around your wrist. You feel it and it’s unpleasant but it isn’t really stopping you from doing anything. And then it’s like for no reason, with no provocation, just for the hell of it, that person sharply twists your wrist, trying to break it. The enormity of a life in pain looms over me, and I can’t breathe. I text Minnie, “what does a panic attack feel like?” I explain my feelings to her over chat.  “Get out of your office now,” she tells me. I eventually do.

….

Diagnosis: severe vitamin d deficiency. My naturopath says it probably has nothing to do with my side pain, but she thinks it’ll help with my fatigue. I start taking a supplement.

….

I get the pain less. It still comes, but only two, three, four times a day. And I am less tired. I don’t know that it means much.

…..

I take a break from doctors in favor of work. People ask if my pain has gone away. No. I’ve just learned how to live with most of it. I still find myself pressing my hand into my side multiple times a day, trying to limit the severity of the attack. There’s no such thing as a trigger.

….

Today it really hurt three times. That’s technically an improvement. Tonight it will set aflame in a way I haven’t felt in weeks. I am still navigating the ins and outs of managing a pain I don’t understand. Parts of my diet have changed permanently. My daily supplements and vitamins seem to help my general overall health and even seem to temper the attacks of pain, but they cost a small fortune. I have high hopes it’ll work itself out over time. I tell everyone I’m going to run my next half in October.

Megan likes doing things, and is finally mastering doing them despite the pain.

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11 comments

  1. Michelle · · Reply

    So proud of you for handling this with grace and putting your story out there. You should submit this to a website like xojane–it seems kind of up their alley. As Scott would say, you could go “full-on hippy” and try acupuncture or something–he’s so helpful.

    1. I have considered the acupuncture route. Right now I have to go to this internal masseuse.

      Someday maybe I will try to write elsewhere, but for now it’s so hard just to put it here!

  2. FWIW, acupuncture has helped me some. I think mileage can vary, but it’s good for people in general. I believe it improves overall health.

    I know how you feel. It seems horribly unfair. Maybe if you read my blog, it might help. Maybe. 🙂

    We should talk sometime. Hang in there.

    1. I do read your blog! It’s a strange thing, when your body stops being yours and starts belonging to something you don’t want and aren’t okay with living with. You have it much worse then I do though, and that’s awful.

      I think the silver lining of this for me has been a general collection of new things that do improve my overall health (but then I remember that it’s actually held me back from a lot of runs I would have taken, and life I would have lived but I was much too tired, and well that pissed off feeling comes back!)

  3. Debbi is so right: It seems horribly unfair to be young, “healthy” on paper but have to deal with pain and undiagnosed ailments. I went through a very similar ordeal last year and, while it continues, I am pretty much where you are — ignoring it as best I can and trying all I can to minimize it. The only thing I’ve found to be of much help is a medication called hyoscyamine, which helps relieve/prevent the spasms.
    By the way, you are an excellent writer. I wish you all the best.

    1. Thanks so much for your kind words! It sucks that you’ve had/continue to have a similar experience. It gets so exhausting to keep putting in the time/money/effort just to be told over and over that you’re fine, when you’re obviously not!

      Hopefully we can just keep our heads up, and ignoring it really will make it go away!

  4. Amanda · · Reply

    Beautifully written! I’m so sorry you are going through this and so proud of you for pushing through and finding a “silver lining”. I admire your tenacity.

    1. Aw, thank you. I have been so moved today by everyone’s kind words/support/encouragement of my health and my writing! My life is filled with such great people.

      It’s so day-to-day. Some days the silver lining is all I stand in, and I can power through even when pain threatens to end my tennis game. Others I am all dark clouds. This was the hardest piece for me to write, and but I am so relieved I could share what I was feeling and have been experiencing.

  5. […] Scenes from a mystery illness. (via The Friendship Shore) […]

  6. […] Scenes from a mystery illness. (via The Friendship Shore) […]

  7. […] post is a repost of a piece I wrote for The Friendship Shore. I am including it here because the management of my side pain/illness is […]

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