February 20, 2008 at 1:56 pm (Uncategorized)

I want to thank Paul and Nelda and Nancy and all the other people who wrote in response to my last posting either by commenting on the blog or e-mailing me. “Careless” was a difficult piece to write, but even more challenging to broadcast to the world. Knowing that I’m not writing into the void—and also that other people understand and relate to the less savory aspects of living with a chronic illness—is a gift.

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February 15, 2008 at 2:48 pm (Uncategorized)

One recent night, long after my husband, Jay, and my son, Andrew, had gone to sleep, I found myself standing in front of the refrigerator, wolfing down hunks of the apple pie a well-meaning friend had brought us.

I wasn’t hungry, and the pie, although delicious, didn’t satisfy a particular craving I was having at that late hour. Nor was I savoring the experience of eating it. I didn’t warm a slice in the microwave, garnish it with a bit of whipped cream, and sit at the table to let the flavors of the flaky crust and the tart apples wash over my tongue. Nope, I deliberately stood, half-bent over the ice box, as if a tsunami might come and wash it away, and scooped pie with my fingers. I half-listened for Jay to come down the stairs and see me in the bluish glow of the appliance’s single light bulb with handfuls of forbidden food. See, I’ve been diagnosed with diabetes, and apple pie is not exactly on the Top Ten List of diabetes-approved foods.

The picture I am painting is not a pretty one. I’d rather my readers — both those I know in person and those who have come to know me only in cyberspace — not see this ugly side of myself. But whether or not the image of a fat woman uncontrollably wolfing down pie is pleasant or cheerful, it is true and it is real, and not enough people talk about what is true and real in chronic town. Also, I know I am not the only person who engages in rampantly self-destructive behaviors even though at three o’clock in the morning, with a handful of pie, I sure felt lonely.

I am an overweight — no, to be fully honest, a fat — diabetic on enormous doses of steroids. I am nearly eighty pounds heavier than I was before I was diagnosed with sarcoidosis four years ago and started steroids. My body valiantly tolerated fluctuating doses of prednisone for those years without becoming insulin-resistant, but a recent boost to 80 milligrams of prednisone (necessitated by a sarcoidosis flare-up in my cranial nerves and bones) has apparently pushed my endocrine system over the edge. I, like millions of others, am now a diabetic. My physician told me to check my blood sugar six times a day, record and count my carbohydrates, and inject myself with rapid-acting insulin before every meal. The doctor sent me to a perky diabetes educator at the hospital who determined my carbohydrate range for each day. She encouraged me to keep a food log and measure and define the amount of every morsel I put between my teeth.

I’ve been having an extremely hard time with this new food regimen. Eighty milligrams of prednisone makes a body plenty hungry, but still, I tell myself, I should be able to manage. I’ve done more difficult things than eschew pasta and chocolate chip cookies in the name of fighting this disease. I took methotrexate and wanted to barf for days on end. I injected myself with Enbrel and watched the needle marks well into six-inch painful “injection-site reactions.” I’ve put off trying to conceive or adopt a much-wanted second child. I’ve undergone almost every kind of cardiac testing known to the field, including two heart catheterizations, and even geared myself up to have a defibrillator implanted in my chest, until the doctors blessedly decided that this could be postponed. I’ve strolled through hospital halls from Montana to Mount Sinai in New York with my ever-enlarging ass hanging out the back of insubstantial gowns to have my lungs, liver, heart, brain, and nerves, biopsied or evaluated. I snort saline solution thrice daily to ward off sinus infections. For six months I breathed into the rubberized mask of BIPAP, a sleep apnea machine, when my cardiologist thought that my right-heart enlargement might be aggravated by possible sleep apnea. It wasn’t. You get the idea. I’m not opposed to the idea of compromise or personal inconvenience in the name of getting well. Except, apparently, when it involves carbohydrates.

It baffles me because I’ve always been such a good patient. Why then, do I chafe at my carbohydrate restrictions? Why do I take my doctor’s orders as a personal affront—or, rather, almost like a challenge? Compared to the lovely day when I had a dual endoscopy/colonoscopy, a few less pieces of bread should be a piece of cake — or maybe pie. Yet I want to — almost need to — break as many carbohydrate rules as possible, to wallow in the glory of pasta, bread, and dessert. I stave off the desire most of the time. But I break down too often. I’ll eat seven cookies in quick succession, or half a pie in the middle of the night. I’ll loathe myself for being such a bad patient. I vow, never again will I do this. Until the next apple pie or batch of cookies arrives.

I’m not so clueless as to think my problems are about an unfulfilled sweet tooth and a hearty appetite. My sugary binges are all about control or the total lack of it. Oddly enough, I once witnessed this scenario of a diabetic disobeying doctors and damaging herself from the other side. I was on the outside, living obliviously in the the land of the healthy. Although I didn’t fully understand the situation then, revisiting it now helps me make sense of my own erratic behavior.

A few years ago, Jay and I took spinning classes at the local gym. The instructor was a bike racer and a good one at that. But chatting after class one day, as we wiped the sweat off our stationary bikes, he mentioned that he hadn’t always been the thin, muscular, motivational guy who spent his lunch breaks leading group stationary cycling and his Saturdays slogging out hundred mile rides on Montana highways. He had been overweight, listless, a smoker.

I ended up hiring him as a personal trainer to put together a strengthening program for my own bike racing season. We never became friends, exactly, but as I gasped beneath heavy squat racks and lunged forward with a bar on my shoulder, we’d swap a few personal details. He liked to hear stories about my glory days as a cyclist, back when I trained with the big wigs at the Olympic Training Center in Colorado and met (and raced against) some folks who went on to become pretty famous in cycling circles. I wanted stories from his day job as a drug and alcohol counselor. Truthfully, though, besides a passion for going fast on two wheels and for hearing tales about people skating (and crashing) close to the edge of their choice, we didn’t have much in common. That’s why I was surprised when one day, as I was in the midst of some torturous exercise, he turned to personal matters and said that his marriage was falling apart. His wife, he said, hadn’t made the transition from plump smoker to lean, mean, cycling machine as he had. She was a diabetic, but she took very bad care of herself, he said. It had become too painful for him to watch her health deteriorate while his soared. He was moving on. They divorced a few months later.

His pain was real, and my sympathy for him was genuine. As to her, though, I was a simpleton in the realm of compassion. “Why doesn’t she just lose weight and take her diabetes medications and go on bike rides with him?” I wondered, with the befuddled earnestness the healthy sometimes carry with them onto twisted streets of chronic town. How could she sit back and eat sweets while her husband packed his bags and the diabetes destroyed her nerves? Didn’t she have any self-control?

Back then I didn’t understand how chronic illness can turn everything on its head and warp the meanings of our intentions and actions. Trying to understand why you do something — or what something means — is a lot like excavating an ancient city the polis of the self. But instead of chipping away through rocks, pottery shards, and the detritus of daily life that remains, you have to get beneath the mood-altering medications, chronic pain, endless medical tests, ongoing fear, surgeries, hospitalizations, and the looming thought of death. Then you’ll reach the place where reason and reasonableness and reasonable behavior don’t always reign. You’ll be far below the strictures of logic. You are at the base layer of chronic town. You’ve dug down to control.

In this place, sometimes the only way to regain a piece of control, sometimes the only way to survive the weight of illness is to abdicate control to grab a handful of pie and not do the very things to care for yourself. When your body is no longer your own, when it is assaulted by disease, pumped full of drugs, and prodded on a regular basis by a parade of white coats, reclaiming control means eating the pie. With each bite, you say to yourself and the faceless white coats in your mind, “This is mine.” My spinning instructor’s wife probably felt both her least and most in control of her diabetes when she cheated on her carbs and chose a Seinfeld re-rerun over an aerobics class with her husband.

Funny isn’t it, how that simpleton’s compassion can come back and bite you in the ass? Now I’m the diabetic with a super-fit husband. Jay has shown only unconditional love and support, but I can’t quite believe that some day he won’t head for the hills with someone who can match his aerobic capacity. I know that Jay wants me to take better care of myself on the blood glucose front. I should be logging every carbohydrate I chew and calorie that I ingest. I should be losing weight — or at least giving it the old college try — so that my beleaguered body might have an easier time withstanding the ravages of both my disease and its treatment. But here’s the rub. I don’t want to. And it’s not like I’m thinking “I don’t want to” with an adult’s reasonable tone. My inner voice is akin to Andrew’s when I’m forcing him to floss his molars or blow his nose. The voice is loud; it’s petulant; and it adores apple pie. I don’t want to.

It makes sense that my new food restrictions chafe with extra force. Plenty of people struggle with making the shift to a diabetic diet, even if they haven’t had four years as a medical pin cushion as a run-up. Food taps into our primal selves. It is linked with our survival, our communities, our cultures. I wrote my undergraduate thesis on medieval women mystics who used their bodies — especially by withholding food (even to the point of starving themselves to death) in their spiritual practice. For them, going without food was a vehicle that drove them closer to God.

And, as every anorexic worth her salt can tell you, food — perhaps because it links into a nerve center as complex as it does — is about control.

Pardon a little excursion down a self-pity path, but I have no control — zero — in my life now. Because my immune system is so weakened from the daily bombardment of prednisone and the monthly one of Remicade, I have been ordered by my doctors to avoid coming into contact with potentially sick people (i.e., the world). I’m lucky to have good enough friends that I’ve had lots of visitors, but still, an outing to the grocery store sounds downright exotic. Even if I wanted to break out and head to Safeway, I’ve been forbidden to drive because of my sarcoidosis-induced vertigo and the cocktail of drugs I swallow every morning. If I bribed the babysitter to drive me, I can’t be in the car (even as a passenger for more than about ten minutes) before the seasick feeling sets in. I have to cover my eyes with a shade like some Victorian neurasthenic and pretend I’m not moving through space at what feels like disturbingly impossible speeds. As I’ve mentioned in earlier entries, the new neurological impact of my disease has made it difficult for me to read or write. Since I’m a writer, I’ve lost my income (which was never that grand to start with, I admit, but still, it was mine). The horrible headaches keep me bedridden and unable to care for my kid. I listen to expensive, but very good babysitters, raise him.

Since nothing in my life feels like my own, you would think that being able to control one aspect of my illness — my food and its direct impact on how I feel — would make me want to count every carbohydrate that even thought about sneaking into my body. You would think that I would want to chew on nothing but celery and cabbage in the hopes of reclaiming my face, which, with the prednisone bloating and the extra weight, is unrecognizable to me. (I have no neck, and it looks as if I’m storing up acorns in my cheeks. ) But, no, I want to eat spoonfuls of cookie dough, chased with pound cake and a bag of chips. I am ashamed to be such a bad patient, such a bad person, such a fatty. Who knows? Maybe being able to loathe myself on cue is my way of asserting my autonomy.

I wish I could close this essay on a hopeful note, that I could tell you that I have figured out a way to turn the feeling of being completely out of control in my body, in my life, in my marriage, in my family, in my world in a new direction. I am doing the best I can. I record my bloods sugar levels and I loosely log my carbs. I try deep breathing exercises when Andrew and the babysitter are making cookies. But yesterday, when my doctor called to tell me that I might need to get a bronchoscopy (where they run a tube down into your lungs) to isolate the pneumonia bug that seems to be resisting all the best antibiotics they are shooting into me, all I wanted to do was head down to the kitchen and shove something sweet into my mouth. I didn’t, but it was a close call. I found out later that I don’t need the bronchoscopy because the CT scan showed improvement. I would have endured the tube in my throat and the indignities of minor surgery. But I’m not sure I could have done it without a cookie beforehand.

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Long Time No Blog

February 11, 2008 at 5:12 pm (Uncategorized)

Sometimes I wonder if we didn’t get our geography all wrong. Maybe the world is flat, like medieval cartographers once imagined. I certainly do feel as though I have fallen off the edge of a flat planet. But there aren’t puffy clouds and cerulean skies to greet me on the windswept end of the land – only a sick room I’m not leaving, strange manifestations of a strange disease, and my once familiar life becoming more distant, more like a movie I watched a few months ago. The round earthers have never made it to Chronic Town, I guess, where many of the streets drop off into oblivion and the rules that govern the rest of the world don’t apply.

My personal world narrowed even more a few days ago when I was hospitalized with pneumonia. I caught a cold from Andrew, my son, who at four, is a walking virus. The cold became what I thought was a sinus infection, and my doctor prescribed a course of antibiotics. The only weird thing was that I couldn’t breathe walking up the stairs. I’d rest at the top landing, panting, as though I had just scaled the mountain behind our house. I was irritated when my doctor ordered a chest x-ray. How could I have pneumonia when I wasn’t even coughing?

I did have pneumonia. (The coughing came later. And plenty of it.) My doctor called at six in the evening with the results of the chest x-ray and the order to go to the hospital for admission. I was napping, and our babysitter was about to leave. The pneumonia was mild, the doctor said, but the high dose of prednisone and Remicade I take, supposedly to cure my sarcoidosis, make lung infections particularly pernicious and particularly quick to become deadly. She said that once she had dallied a day before hospitalizing a patient with a chest x-ray and a medicine cabinet comparable to mine. In twenty-four hours that poor fellow’s pneumonia had blossomed into tuberculosis and pneumocystis pneumonia (a lung infection more common in AIDS patients.)

So, we went to the hospital. But not before I had to explain to my son in my brightest tones possible that Mommy had to go sleep in the hospital to have special medicine put in my veins. He was understandably resistant. After all, the last time I went to the hospital, I stayed there for days, and came home a changed mother – one with constant headaches and balance problems. “No,” he sobbed, clinging to my leg, “I don’t want you to leave.” That did good things to my Mommy guilt stockpile. Meanwhile, Jay called my parents to deliver the news. Without us even having to ask, they packed their bags and prepared to make the four hour trip the next morning. Upon learning that Grandma and Grandpa were coming, Andrew stopped crying and started celebrating. (I was glad for his mood shift, but, still, is my son so cheap that even the promise of grandparently doting quells his fears of going motherless?) I packed a bag slowly. I even made a pot of coffee and frothed up for myself a passable sugar-free vanilla latte before we headed out the door.

The sheer banality — the lack of sturm und drang — was disconcerting in itself. Usually, trips to the hospital are adrenaline-laced. In November, I thought I was having a stroke as Jay sped down darkened streets in the middle of the night to deliver me to the emergency room. In happier times, we had both sweated and stressed our way to the hospital for Andrew’s birth. But this was so bland, so blasé, so terribly everyday. Then it hit me. Yes, every day. This is my life now in Chronic Town. Routine hospitalizations, constant medical disruptions. Jay told me later that our babysitter, who has only worked with us for a few weeks and doesn’t know how frequently some health crisis erupts with us, was terribly worried and upset. Hospitals mean death and disease. Poor Rebecca must be very sick, right? I guess. But it’s as if all Jay and I could muster emotionally, once we calmed our son, was a shared shrug and a cup of coffee.

I only had to stay in the hospital for three nights. Pumped full of antibiotics I can’t pronounce, much less remember, I returned home to my bed. The irony is that some of the problems that plagued me since my last hospitalization and my latest flareup of sarcoidosis in my brain had seemed to be easing somewhat before the pneumonia. I could read part of a magazine article with only mild sea sicknesses ensuing. I could work at the computer for close to an hour a day and was chipping away at some essays to post here. And doing so didn’t make me either throw up or fall over (as long as I didn’t push it too much). Best yet, the day before the pneumonia struck, I had taken a walk with Andrew and Jay. This was the first time, since before Thanksgiving, that my small family had simply ventured forth for fun – to tromp in the snow, to begin building a snow fort, to make up stories as we walked on the squeaky winter ground. The sunlight didn’t blind me, and my balance was nearly steady.

I feel worse again now. Who knows if my returned neurological symptoms are from the drugs they gave me in the hospital, the stress of being in the hospital, or simply from missing a dose of Remicade? Maybe all the coughing is just making my headache worse, or the quantity of phlegm in my head and sinuses is re-impinging on already inflamed cranial nerves. Your guess is as good as mine – or my doctors’. Once, this loss of momentum would likely have bothered me much more than it is now, and I would have pitched an inner fit. Once, I would have been more concerned that my pneumonia isn’t really improving and that I had to return today to the doctor for new IV antibiotics (outpatient luckily). But all that struggling and worrying feel like too much work, here at the end of one of Chronic Town’s streets. Illness has become our way of life. It has become normal – a virtual routine for me, my husband, my son. And that bothers me more than the thought of free-falling off the edge of our supposedly round world.

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