It sucks having an autoimmune disease. It sucks having it be in remission and it sucks trying to find the balance between abject fear of relapse and a normal, healthy life. It sucks having a rare autoimmune disease because no one really understands how much it sucks.
There was an article in Self Magazine's March 2007* issue that said it very nicely: ...with severe autoimmune illness, you get to go through all the official cancer crap without getting any of the cancer credit. There is no pretty ribbon to adorn your lapel. You do not get a story line on Sex and the City, nor do you rock out at the Grammys. You cannot purchase lovely pink products to help find a cure.
Not to belittle people who have had cancer - it's not easy dealing with that either - but do you know how many time I have wished that I had cancer instead of Wegener's? It's not easy, but it's much easier for cancer people because they have a gigantic support system and publicity and just tons of people they can relate to and share their experience.
I know that makes me sound like a terrible person, but it's really true. Cancer survivors also have the joy of not worrying if every cough, headache, nosebleed, earache or joint/muscle ache is a symptom of their cancer coming back. I do. It sucks.
A friend of mine pointed out the other day that I let Wegener's Granulomatosis be a fairly major thing in my life (well, no shit!) and that I should try to make it influence me less or not at all. Because whether or not I have a relapse is out of my control, he essentially said I should ignore the disease. His sister has had cancer and he used her as an example of how one should cope. He actually kind of pissed me off because he implied that I was a slave to WG and that I should really just be passive about it.
That's not really a plausible idea. I have to pay very close attention to any symptoms that might indicate a relapse because, while I can't control if a relapse happens, I can control how soon it's diagnosed. Catching a relapse early could save me from being on dialisis for the rest of my life or keep my nose from collapsing completely. I've found a few support groups online too. It's comforting to have found people who went through something similar, and it's helpful to be aware of what I can maybe expect if I do have a relapse. Not actively dealing with WG is likely to be more detrimental than not.
The truth is I don't really let it have that much influence on my life. If I were to really let Wegener's control my life, I would be a total hypocondriac and would never do anything but worry about it. I do very normal things for a person my age. There are a few things I don't do because they would increase the risk of me getting sick, but they're kind of stupid things to do anyway. I don't even talk to most of my friends about it because right now, it's not a really big deal. Occasionally they'll ask me about it, and I'll tell them, but I seldom bring it up.
Blah! I promise my next blog will be happy. This one and the one before are a bit ponderous.
*I couldn't find a link to the Self article itself that didn't require some sort of password. I've posted it as a comment though (it's kind of long so I don't want to put it on the main page). I highly recommend reading it; it's a great article.
Wednesday, May 16, 2007
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The enemy within
How do you fight an illness that makes your own body destroy itself? One woman's war with a rare autoimmune disease
By Wendy Shanker
Self Magazine
From the March 2007 issue
If cancer is a playground bully you need to stand up to, autoimmune disease behaves more like the mean girl in the cafeteria. There's no reason for her to pick on you, but she does her nasty work subtly, tricking some of your cells into mistakenly attacking others until you get sicker and more unsure of yourself and your body. There's no single enemy, no malignancy to rally against. In a way, you are what's wrong with you. And there's no one to blame but you. Autoimmune disease is like a bout of low self-esteem that's gone completely off the rails; it's hard to love and have compassion for yourself when it's you you're fighting.
I have a severe case of a rare, incurable autoimmune disease called Wegener's granulomatosis, which inflames the walls of the blood vessels, depriving the organs of blood and leading to the destruction of tissue and cartilage (in my case, my sinuses, lungs and kidneys). No one knows how you get Wegener's, which is in the same family as lupus and multiple sclerosis, or how to cure it. So doctors treat it like cancer, with a combination of steroids and chemotherapy, hoping to force the disease into a long-lasting remission. Of the approximately 23 million Americans who have autoimmune diseases, a disproportionate number are women. Many are in their 20s or 30s, their prime childbearing years. And most of the women I've talked to with mysterious illnesses such as these have had their initial symptoms misdiagnosed or dismissed as hypochondria. The guilt that follows seems so inherently feminine to me. Autoimmune disease: strong enough for a man but made for a woman.
I'm grateful I don't have cancer, of course. But with severe autoimmune illness, you get to go through all the official cancer crap without getting any of the cancer credit. There is no pretty ribbon to adorn your lapel. You do not get a story line on Sex and the City, nor do you rock out at the Grammys. You cannot purchase lovely pink products to help find a cure. There is a Wegener's support group and a bigger vasculitis patient network. But because Wegener's attacks different systems in the body, sufferers don't always have symptoms in common. Our meetings look like a gathering on the Island of Misfit Toys. An oxygen tank here, a wheelchair there, a tracheal tube here, a missing nose there—or not there, as the case may be.
My Wegener's debuted in 1998, when I was 27. I had a sinus infection that wouldn't go away. A doctor eventually biopsied a tumor they found in my sinuses, which revealed a mass of inflamed cells identified as Wegener's. A rheumatologist started me on a low-dose regimen of the steroid prednisone and a chemo drug called methotrexate, which basically kept symptoms of the disease (sinus problems and joint pain) at bay. I had a few sinus infections and a bit of aching from time to time, but nothing so bad that it stopped me from working at my day job as a TV writer, hitting the gym or living the high life in New York City.
Things were fine. My main problem back then, I thought, was that at 221 pounds, I was too fat. Like millions of women, I decided that I would never have the job I wanted or the man I wanted or the life I wanted until I got thin. So in 2001, I took all of my savings and went to a fat camp for grown-ups, determined to change my body and my future. I paid $10,000 for a month of supervised dieting and exercise and lost exactly 2 pounds. Yep, that's $5,000 a pound. In a way, it was worth it, though, because the adventure led to the epiphany that changed my life: My body was fine the way it was, my blood pressure and cholesterol and heart rate healthy. The number on the scale was just a number that had nothing to do with my personality or my future. For the first time in my life, I felt connected to my body and was able to let go of the hatred I had for my curves. And, to my delight, I got a deal to write a book about body image, which I called The Fat Girl's Guide to Life. It was published by Bloomsbury USA three years later.
Awaiting the book's publication, I welcomed my strength and my size and jumped into life, working hard and partying plenty. Maybe I partied a little too hard, though, because I started to get these headaches. And I had trouble hearing out of my right ear. And my nose looked like it was caving in. Come to think of it, I was taking way more than the celebrity dose of Vicodin every day, and the sinus pain still wouldn't go away. And damn, I was tired. Incredibly tired. Finally, in November 2002, the headache pain got so intense that I went to the emergency room and begged the resident to please take me out in a yard with a rifle and shoot me. He made me have some X-rays and CAT scans instead. It hadn't even occurred to me that Wegener's might be afoot again.
I was at work in the TV studio when the call came. "Are you sitting down?" my doctor asked. He said that Wegener's was causing my exhaustion, hearing loss and pain. The disease was eating away at the cartilage in my ears and nose, which was becoming smaller and more upturned. It had also spread into my lungs and my skull, and I would have to do much more aggressive steroids and chemotherapy for the next few months to fight back. My head was reeling.
I started chemo again the next month, and stayed on it for almost a year and a half. The chemo and the disease itself made me so sick that I had to leave my TV job. I checked in and out of hospitals every few months with some emergency: a spinal tap, vertigo, a liver biopsy, tubes implanted in my ears and my eyes. You name it-they found new ways to torture me every day. The massive doses of steroids gave me a moon face, bloated my body, added a hump on my back and dusted a teenage horror of cysts across my face and neck. Another drug caused an allergic reaction all over my torso that itched like crazy. I grew fuzz on my arms, shoulders and face. The steroids made me feel manic and nutty and delusional, and I began to see little starfish people dancing around my friends' faces. My hair fell out—but not all nice and cute and bald and sexy. It was more like I lost clumps from the top of my head. Forget about dating: I felt about as libidinous as Ellen DeGeneres in a room full of Chippendales dancers. I wasn't sick enough to die, but I wasn't well enough to live my normal life.
I feared the treatment might be worse than the disease. With all that chemo, was I kissing my fertility good-bye while opening myself up to a lifetime of secondary illnesses such as cancer? Daily life was also hard. My usual exercise routine—something that kept me sane as well as fit, if not thin—went out the window. It was all I could do to shuffle from my bed to my bathroom. Plus, the chemo killed my taste buds so everything tasted like sandpaper. The only foods that I could stand were cheese and ice cream. So I ate a lot of cheese and ice cream, because I could taste them and because I was miserable, and to deprive myself of cheese and ice cream at that point felt like insult added to serious injury. My weight ballooned. My bra went from a 38DDD to a 42G-G, as in, Oh, my God, my Gazoons are Gargantuan. I looked in the mirror at a bloated, scarred, fuzzy, balding, pug-nosed monster and no longer saw myself. All the encouragement and advice about positive body image that I had written in my book felt like lies. I could find no beauty, no self-respect. Just when I had come to peace with my body, the treaty was broken by this evil, psycho disease.
In April 2004, The Fat Girl's Guide was published. It would have been my dream come true, except my illness turned it into a nightmare. Finally, I was able to share my message with women across the country and maybe give someone somewhere a well-deserved boost of self-esteem, but I was terrified that people would get confused and think my current features were caused by excess flesh, not illness. I looked like a completely different woman than the fat, pretty one in my book-jacket photo. So I avoided contact with my publishers and publicists. I skipped photo shoots. I went on The View wearing a wig and nearly threw up on Star Jones. I passed out in the car on the way to and from book readings. I wore reading glasses to cover up the space where the bridge of my nose used to be and sweated like crazy in overheated bookstores wearing long shirtsleeves to cover up the bruises in my arms from the medication needles. Worst of all, I felt like a hypocrite telling other women to love their body when I felt so resentful of my own.
I tried every alternative to get better. A mystical masseuse who was giving her cat an abdominal massage as I arrived for my appointment. An Ayurvedic healer in New Mexico who gave me my very own Sanskrit mantra to connect body and mind. A doctor in Michigan who shot me full of Pitocin, the drug they use to speed up labor, in theory to hurry illness out of my bloodstream. An alternative healer who told me that a blockage in my "third eye" (who knew?) was inhibiting my intuition and making me sick. I enrolled in a double-blind trial of an experimental drug that didn't work. I prayed at the grave site of a Hasidic rabbi in the middle of the night. Buddhas, mandalas and a saint or two made their way to my bookshelves. Hey, can't hurt. I got antidepressants, acupuncture, acupressure and acute anxiety. What I didn't get was a remission.
After a year and a half of trying drugs and treatments while promoting the book, my brain finally checked out. In April 2005, the intense head pain would no longer abate. I flipped the switch from "Wow, this situation sucks" to "Hey, I'm never getting out of bed again." When I'd first become sick, friends told me I was strong and brave for pursuing treatment and trying to maintain my usual lifestyle. I simply saw no other choice. Now I'd discovered a new option: deep and permanent bonding with my pillow, bra-free, 22 hours each day. I wanted to avoid undergarments and eat carbs and ignore everyone. I spent five weeks in bed, just lying there and staring out the window. I didn't answer the phone, didn't reply to e-mail and didn't leave my house. Every once in a while a friend or neighbor would drop off food. I eventually dragged myself to a shrink to get some new and more intense antidepressants and attempted to make some money from freelance writing assignments. Mostly I watched reruns of Felicity—I'd TiVo'd four seasons' worth and watched them for two hours a day in chronological order. Felicity and her friends were the only things keeping me connected to normalcy.
My time was supposed to be now. I was 33. I was supposed to be singing the body electric. I should have been taking tap lessons, rolling my own sushi, helping the homeless—not sitting in the oncologist's office having a chemo infusion. I adhered to a strict bagel-and-macaroni diet. Totally unhealthy, bad for my weight and, I'm guessing, it even aggravated my disease. It reminded me of how I used to eat when I hated my body for being fat, how I'd foolishly tried to use food to make myself feel better.
I thought I'd finally beaten my self-criticism when I accepted my body, but I found myself asking, Is this illness my fault? Is it because I'm fat? Is it because I'm weak? Is it because I ate a bad burrito in 1995 or used the wrong kind of paint in my house in 1997? And even nastier, the mean-girl voice began to whisper inside my head: "You're not trying hard enough to get rid of this. You're not doing everything you can do. You don't want to get well...." I used to hear that same voice when I chastised myself for my weight. This illness followed the same pattern as my chronic dieting failures: the ups and downs, the crazy methods, the worthless advice from your neighbor's best friend's sister-in-law. Spending all that time, money and energy, trying and failing, again and again.
All Sick Girl stories, like all Fat Girl stories, are supposed to have happy endings. Fat Girl loses weight and lives happily ever after. Or, in my case, Fat Girl stays fat and learns to love herself and lives happily ever after. So what about Sick Girl heals and lives to a ripe old age? Or, Sick Girl stays sick but learns the true meaning of life, friendship, etc., and dies in a big ball of bliss? The truth is, I'm in the middle of a murky tale with poorly defined plot points that could go in any direction.
A remission in the fall of 2005 lifted me out of the blue, and I felt better than I had in years. Then last November, I had to go back into treatment once more. For now, I'm done. I could be stuck in limbo forever, but because I'm a writer, why not give myself that happy ending? Maybe I'll be in the hospital and meet a hunky hematologist with whom I'll later elope. Maybe I'll start a run and a fund and sell purple Cuisinarts to raise money for research and we'll discover a cure. I simply don't know.
Whatever happens next, I must heal this wound and find my beauty again. I need to relearn the lessons I taught myself about my weight and apply them to this disease: Listen to my instincts. Move my body. Speak to myself with kindness instead of cruelty. I'm trying. I'm learning how to modify my all-or-nothing attitude. I'm mixing Western science with Eastern philosophy (and a lot of black humor) to find a prescription that works for me.
There is one shining light, which has nothing to do with me, and that is the generosity of friends, the gestures of family, the determination of doctors and the prayers of strangers. They don't give up on me, even when I can't call back or don't respond. I panicked when I realized that I could never repay that much kindness. I've since discovered that good people give purely because they want to. And so I will give back.
As of this writing, I'm facing a whole list of repair surgeries I need to undergo, starting with my nose reconstruction. Did I mention that I lost my sense of smell? And that I can't hear out of my right ear? But that means I can't hear that mean cafeteria girl's whispers. Which is good. Because that silence is giving me some room to fight the bigger, badder bullies. That might just be why I'm still here.
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