Prednisone Partners

June 27, 2007 at 1:23 pm (Uncategorized)

Jay hurt his back last week playing basketball. Given his history of lower back injuries (he ruptured a disc playing rugby in college) and the fact that his current episode caused pain to shoot down his legs, his doctor decided to act aggressively. In addition to prescribing various pain killers, muscle relaxants, and a non-steroidal anti-inflammatory drug, the doctor also gave him a week’s worth of prednisone to take.

Now, I am not one to rejoice in another’s suffering, especially when that suffering involves ingesting prednisone. I once heard a doctor describe prednisone as “the devil’s wonder drug.” It’s the perfect definition that embraces the humble corticosteroid’s contradictions. Prednisone carries with it a host of potential nasty side effects: increased appetite, water retention, loss of bone density, cushingoid syndrome (a puffy, moon face), increased risk of diabetes, insomnia, mood swings, and, in a lucky few, full-blown psychosis. The bitch of it, though, is that prednisone works – and does so cheaply. Doctors prescribe it for a variety of inflammatory issues: strained backs, sarcoidosis, adult chicken pox, severe asthma, and chronic sinus problems, to name just a few. I even know of someone who recently took two weeks’ worth of prednisone for a sore tooth.

Even though I was upset that my husband was in enough pain to warrant taking prednisone, I was also almost relieved that he was going to experience the drug that has been the bane of my existence for the past three years. I certainly wasn’t seeking company for my misery, but I was intrigued with the idea that my husband – the one who has been closest to my illness and the various treatments my physicians have lobbed at me – would finally get a chance to truly understand prednisone. As much as Jay empathizes with me for having to ingest a drug that has bloated me beyond recognition and that plays with my moods as surely as a concert violinist works the strings of a Stradivarius, the truth is that empathy and understanding, by necessity, stop short of first-hand experience. I wouldn’t have admitted even to myself that the prednisone prescription in my husband’s hand seemed like an opportunity for me to have a companion in my illness – not next to me holding my hand, as he always has, but in the thick of it with me.

It was pretty clear from the outset, however, that Jay’s prednisone experience would be different than mine. For one thing, he got a nice, pre-packaged week-long assortment of pills of various doses. I get giant bottles with infinite refills. His maximum dose was on the first day, when he took 24 mg., and after that he tapered down to 1 mg. on the seventh day. I, on the other hand, have been on prednisone for over three years. I took 40 mg. for about a year, and after patiently working my way down to 20 mg., I got stuck. Whenever I dropped below that amount, my disease flared. At last, with the help of Remicade infusions, I’ve dropped my daily prednisone dose to 10 mg. Assuming my good luck lasts, I’m supposed to now take one milligram less of prednisone with every Remicade infusion. This means, assuming I’m able to get my Remicade infusion regularly every six weeks, that I’ll go from my current dose of 10 mg. to the 1 mg. (which Jay accomplished in a week) in a mere 54 weeks. In other words, I have over one more year (best case) before I get off the devil’s wonder drug.

Even though Jay’s trip to Prednisone Land was short, it did give him a sense of the drug’s side effects. “I am so hungry,” he said, as he padded into the kitchen an hour after a big dinner. He ate an orange. And then he ate another orange. And then he ate a baked potato with salsa. “I’m still hungry,” he said incredulously. “Nothing I eat satisfies me.” A little while later he ate a trough-sized bowl of cereal, before he finally went to bed, grumbling along with his stomach that he was hungry. Ah, yes. That would be prednisone. I gained over 70 pounds taking it. After three months of dieting, I’ve dropped seventeen of those pounds, but I still am so hungry that I half believe I could eat my arm in the long hours between lunch and dinner.

A doctor once told me that the prednisone didn’t make me gain weight. All it did was increase my appetite. I succumbed to my appetite and ate the food that made me overweight. His point was that the prednisone didn’t make me fat, but that I had made me fat. I suppose this is true. But it did feel like he was intellectually sparring with me about the primogeniture of chickens and eggs, meanwhile kicking me in my metaphorical nuts. He had a medical degree, but obviously not much in the way of innate intelligence, since he really pissed off a fat woman with a giant appetite, who could have easily eaten his arm instead of her own. Despite my anger and my thoughts of cannibalism, my encounter with this doctor (whom I should have left one-armed for principle’s sake) left me wondering if I wasn’t simply weak-willed. But, then, seeing Jay empty the contents of the entire refrigerator into his mouth in the space of about three hours did my heart (and my self-esteem) a good turn. If my husband – a man who actually doesn’t like the taste of butter and who thinks a perfect snack is a grapefruit – is prompted by prednisone to eat three slices of pound cake, then maybe I wasn’t a fat, lazy slob. Maybe the prednisone did affect me.

I have never felt a hunger like that induced by prednisone. I’ve had plenty of opportunities to work up an appetite in the past. I’ve ridden my bike over a hundred miles. I’ve hiked close to thirty miles with only a couple of Power Bars for sustenance. For a period of two weeks in high school, I stopped eating breakfast and lunch. Once I got a terrible stomach flu that prevented me from eating for several days. But before I started taking those oblong, white prednisone tablets, though, I had never experienced hunger at such a voracious, ferocious, arm-eating level. Prednisone hunger is bottomless. You can put off eating in the name of self-discipline or weight loss, but you simply cannot get away from the wrathful hunger. Normal people (past incarnations of myself included) can distract themselves from their stomachs when they’re on a diet. Prednisone hunger brooks no distraction. When you’re not eating, you are either dreaming of food, plotting your next meal, or feeling your insides twisting and writhing as though some demon were down there stabbing them. When, at last, you say, “Fuck it,” and eat, prednisone hunger will not go away. Eat a cake, and you’ll think, “That was a small cake and I’m still hungry. Do we have any larger cakes around here?” Eat a side of beef, and thirty minutes later, you’ll be back in the kitchen, looking for the rest of the damn cow. Experiencing prednisone hunger feels like you’re throwing marshmallows at Godzilla. “You call this a meal?” Godzilla bellows. “Forget the fluffy treats. Get me a small city, and I’ll be sated.” So you feed your inner Godzilla Dayton, Ohio, but he consumes it (and its suburbs) in a matter of moments, and then just demands Tokyo or Mexico City. There’s no satisfying Godzilla, especially when he’s on corticosteroids.

Jay also quickly noticed the flip side to prednisone hunger – prednisone nausea. If you dare to let your bloated prednisone belly empty, not only will it grind its teeth and demand a jar or two of frosting (hold the cake), it will also make you painfully, horribly nauseous. If I take my prednisone pills on an empty stomach, I’ll be sick for the whole day. If I skip a meal, I’ll be sick for a while. I have dry-heaved up bile on countless occasions since I’ve been on prednisone. It’s as if my prednisone stomach digests every shred of food in 8.3 seconds, and then spends the rest of the day producing vast quantities of digestive acid. In summary: prednisone make you want to eat every thing in sight, all the time; if you succeed in mastering this hunger and not eating for every waking second, you’ll soon be doubled over the toilet, retching up an ugly liquid that sears your throat.

Prednisone doesn’t only lay claim to the realm of guts and food, though. Some of the drug’s most pervasive and troubling side effects are related to mood. Jay claimed not to have experienced any of the psychological side effects of prednisone, such as irritability, moodiness, insomnia, or depression. I won’t argue with him too much on this point, except to note that he was awfully grouchy for a week. I understand him. Who wants to admit that her state of mind – her very human nature – can be turned upside down by a handful of cheap pills? Not me. (And apparently not Jay either.) But the truth is that I am a different person when I take high doses of prednisone. Remember that seminal anti-drug commercial from twenty years ago? “This is your brain,” the voice-over intoned, as the camera zoomed in on an egg. “This is your brain on drugs,” the booming voice continued, as the egg was cracked and fried in a sizzling pan of oil. Maybe they could somehow include the commercial on the prednisone’s pill bottle warning label. At the very least, then you could dream of fried eggs when you get extra hungry and want to kill someone – a common emotional combination for my brain on prednisone.

Prednisone has done the emotional equivalent of take away my sea legs. Little swells, small hiccups of the ocean that I once considered a normal part of the voyage of life, now make me want to abandon ship, kill the crew, or else hide in my cabin with my head under the pillow. Everything bothers me. Small things make me so angry I literally can’t breathe. I’m ashamed to admit precisely how small: Jay rustling the newspaper, or not turning the key in the car ignition so that I can open my window before he messes with the stereo, or washing the dishes but not cleaning the sink. I almost strangled Andrew the other night when he drove his miniature taxi into my ankles. Other small things make me so sad I also can’t breathe. Any television show or movie that involves a sick or dead animal or child will leave me weepy for days. Small rejections (the daily diet of writers) make me want to stay in bed. Other oddly intense moods come and go. If my mother has a strange tone in her voice on the phone, I’ll worry all day. Is she sick? Is she upset? I spend inordinate amounts of time worried that people are angry with me. Occasionally I can muster the courage to ask the person, and they always give me a look like I’m a Martian. Usually, though, I worry in silence. Stress sets me over the edge. I – who was once a highly competitive athlete – can’t stand any kind of pressure. Deadlines for a volunteer assignment with a local charity left me actually sweating. I lay awake at night and fret about my disease, my prognosis, my death. Appointments make me nervous, even if it’s just to get my hair cut. Do I really want to do that? What am I giving up by going?

I think I do a pretty good job of hiding how terrible I feel most of the time. Sarcoidosis has left me feeling physically crummy much of the time, but I’ve become fairly adept at not complaining about the constant, aching pain in my hands and feet. Who knows exactly what portion of mental anguish is caused by prednisone, and what is the normal chemical soup of my own busy brain? Either way, I’ve applied the lessons I’ve learned with my body to my moods. I don’t want my three-year old son to spend years in psychotherapy because his mother spent his entire childhood either complaining about how awful she felt or acting angry, depressed, or weird.

I thought Jay’s time on prednisone would give him an intuitive understanding of the vicissitudes of my prednisone-addled moods. Maybe it did, but my hunch is that his most significant take-away message from prednisone is that the drug makes a man hungry. For Andrew’s sake, it’s a good thing that Jay finished his course of prednisone. Imagine two parents spinning on the surging tides of adrenalin the drug produces. We’d have to start saving for therapy now. Nevertheless, it’s hard not to be envious that Jay could simply stop taking the drug. Of course, I wouldn’t want Jay to have to stay on prednisone. I love him and would never wish suffering on him. Plus, we’d probably eat ourselves into bankruptcy.

But it was odd, after three years of going alone, suddenly to share this piece of my life in chronic town with my partner; it was odder still to feel a sense of connection over something as strange as a pill and the appetites and moods it brings; and oddest yet to feel a little lonely and bereft when he successfully tapered off the prednisone and I am left swallowing the same dose every day, counting the 54 weeks until my body will hopefully be wholly my own again.

Having Jay take the devil’s wonder drug made me feel less alone with my prednisone bottle. It’s silly, but it’s true. But it also, ultimately, made me feel more alone with my disease. It wasn’t solely a matter of Jay being able to stop taking the pills. Mostly it was because I thought that by the simple act of ingesting a pill, Jay would gain almost magical insights into what it means to be chronically ill. A sore back and a week’s worth of corticosteroids can’t convey the fears, feelings, and state of being that comes with being unwell in a healthy world.

I don’t think it’s a coincidence that Jay and I had one of our worst fights on Saturday, as he neared the end of his prednisone course. Like all meaningful fights, this one lurked behind silly surface causes – in this case, that I had felt obligated to have a dinner party on Saturday evening and that he had invited an extra family at the last minute. I love having people over and sharing our home. But I haven’t been feeling well lately. Cooking and cleaning for others is a lot of work, and adding the additional people only upped the pressure I felt. “I am not like you,” I screamed at him a couple of hours after our guests departed. “Do you know how much it takes out of me to do this?” Of course he said he was sorry, and of course we kissed and reconciled. But I felt the gap in our lives as rawly as your tongue finds the hole left by a tooth. He doesn’t understand how exhausting a simple dinner party can be for someone with this disease. Thank God he doesn’t. But he doesn’t.

“You have to tell me how you’re feeling,” Jay told me in the aftermath of our fight. “I can’t read your mind. I don’t know when you’re feeling bad, when you’re feeling up to having company.” He’s right, but explaining how I feel gets to be too much work. Maybe it’s easier to let a gap grow then to spend my days reiterating the mournful mantra of, “I’m tired. I don’t feel well. I’m hungry. I’m nauseous. I don’t feel well.” In the hidden folds of my mind, I had hoped somehow that by becoming prednisone partners, by both of us having to take the same drug, that we would become disease partners. Just as he would grasp the extent of the inner Godzilla hunger, so he would comprehend how the prospect of folding the laundry is sometimes enough to send me to bed, overwhelmed and worn out by daily life. I suppose prednisone would truly be the devil’s wonder drug if seven days of it could allow souls to elide. Would I strike that Faustian bargain? Would I let him succumb to hunger and depression for his thorough understanding?

I suppose it’s a good thing I don’t have that choice. None of us do. All we have are our hearts to share, our thoughts to express. There’s nothing magical about communication. I just need to say the words again: “I’m tired. I don’t feel well.” I need to say them even when it feels like too much work to utter them. I need to say them even when I wish they weren’t true. I need to say them even when speaking them makes me cry. Because otherwise I have no partner but the prednisone, and this relentless hunger inside me.

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June 19, 2007 at 5:12 pm (Uncategorized)

If you ever need a refresher course in high school physics and the concept of entropy, I would highly recommend attending a pre-school T-ball game. You’ll lose any doubt you might have harbored that the natural order of the universe is indeed to disorder and chaos – especially when you watch the infielders discard their gloves in favor of digging in the dirt, the outfielders twirl in circles until they want to puke, and the batter (my son) refuse to relinquish the bat and then chase after the ball he just hit instead of running to first base. Halfway through the game most of the 3-5 year old set had left the field altogether in favor of the playground fifteen feet away.Last night we attended our second-ever practice of Andrew’s T-Ball team – the Mariners. What was almost as interesting as watching the festival of aimlessness on the field was gauging my internal reactions to it. Totally unbidden sentiments came to my mind (and almost to my mouth). I found myself thinking things my parents used to say to me at swimming meets (when I’d try an experimental version of the breast stroke mid-race) or at bicycle races (when I’d pull my foot out of the toe clip at the start of a sixty-mile race and decide I just didn’t feel like finishing). I always vowed that I would be a different sort of parent at sporting events, but, then, I found myself telling Jay, “I didn’t spend $55 for Andrew to dig in the dirt in the middle of practice,” and calmly, but very icily, informing my son that we would leave immediately if he didn’t stop spinning around and not paying attention. Worst of all, when Andrew was insisting on flinging his $20 glove off and starting on a digging project about three feet from third base, I told him, “Babies dig in the dirt instead of playing T-ball. If you want to dig in the dirt, we’ll have to transfer you to the Baby T-ball League.” Excuse me? Who is this mad sporting Mom and how can I get rid of her?

I am a very competitive person. I always have been. Being this way has its advantages, particularly in athletic endeavors. I don’t think I would have ended up a national-class cyclist if I didn’t have the drive to win. Competitiveness becomes ugly, however, when it turns to proxies. There’s nothing worse than a parent fulfilling her own ambitions through a child. And I caught myself doing this last night at the Little League field. One of Andrew’s teammates is a little boy named Jackson, who, although he is only four, is a highly skilled T-ball player. That kid can throw, field a ball, and run the bases. He even had cleats on, for God’s sake. And for a few moments, I hated him for no other reason than he was better than my son. Talk about ugly.

Eventually Andrew figured out what was unfolding on the field – sort of. He stopped pursuing his own ball when he was batting. He started to like whacking the ball off the t-stand. His last time at bat, he even grasped the concept of running from base to base, instead of stopping in random places and admiring the clouds. I’m fairly certain that most of these kids are too young for a game as complex as baseball. Plus, truthfully, it’s a boring activity, what with all that waiting around in the middle of a field for a ball to maybe come flying your way. Andrew didn’t try to hide his boredom. “Why do I have to wear this glove?” “Why can’t I stand over there?” “Why do I have to throw the ball there?” were questions I heard over and over again. Mostly, he was adamant that he would have a lot more fun if we would just let him sit in the infield and play with imaginary trucks in the abundant dirt.

Sometime near the end of the practice, I began to wonder why I was upset he preferred to ponder the clouds and dig a trench instead of fixate on some other three-year old’s hapless efforts to hit the ball. All too soon, he’s going to start school, and then he’ll spend far too much time worrying about what the other kids are thinking and doing. In one of those rare but necessary epiphanies of parenting, it dawned on me that in a couple of years, he won’t want me to hold his hand in the outfield and find shapes in the sky with him; instead he’ll scowl at me and demonstrate how utterly embarrassing his mother is to him. Rather than spend his T-ball practice worrying about why my beautiful son isn’t as attuned to the game as Jackson the T-ball Star, shouldn’t I should appreciate Andrew’s capacity to have fun in his own way?

The scenario reminded me of how Jay and I used to obsess about Andrew’s sleeping habits. We worried and stressed about him crawling into bed with us in the middle of the night and cuddling between us until morning. But, after hearing about my friends letting their kids “cry it out” in their rooms all night long, I knew I couldn’t go down that path, and that perhaps the only “problem” in our situation was my perpetual fretting about what other people thought about Andrew’s habits. The sleep solution we had settled on – the first half of the night in his room, the rest in ours – works for him and it works for us. Who cares what the experts say? After all, he’ll sleep through the night in his own bed sometime soon. And when he does, I’ll miss waking up to his golden head tucked into the pillow next to me and the smell of him that is part strawberry shampoo, part dirt, and part boyish sweetness.

The other piece of my “a-ha” moment was the realization that my coming to terms with (or adamantly not coming to terms with) Andrew’s on-field attitude won’t make a whit of difference. No matter how many lectures I deliver, he will be the T-ball player he’ll be. I can encourage him; I can try to motivate him; I can cheer when he remembers to drop the bat and run to a base, but I can’t make him into someone else. If I try too hard, I’ll just make him fear and resent me.

I feel like I’ve been learning this same lesson over and over during the past three years, ever since I became a mother a scant three months before I was diagnosed with sarcoidosis. Being sick and raising a child are usually on opposite ends of the emotional spectrum. With the rare exception of a T-ball game now and then, and a few mornings ago when Andrew told me he didn’t love me anymore, I’d count my moments with my son as the best in my life. My time in hospitals and worrying about my life have been some of the worst. But kids and life in chronic town share one underlying theme: they make me realize exactly how little control I have of how and when things occur. For a dogged control freak like me, I’ve had quite the bludgeoning in the lesson of letting go of expectations – when it comes to my health or to my child. I can plan all I want, but my body does what it wants. It doesn’t matter if we have airline tickets or a reservation at a restaurant, because when I’m sick, I’m sick. So, too with my boy. I thought he would be a T-ball star because he’s athletic and spunky and smart. Instead he’s pretty much acted like he has autism or else an invisible construction business in the infield. And there’s not a whole lot I can do about it.

My new and revised goals for Andrew’s first official T-ball “game” on Wednesday are to confine my negative thoughts about his teammate Jackson to the fact that he has a better name for a dog than a boy. (I’ll also console myself with the knowledge that Jackson has two older Little League brothers. I’m going to assume he’s inherited that wicked arm.) More importantly, I’ll be there to support my son. Really support him, instead of expecting him to act life a small version of myself. I’ll encourage him to leave the digging for the sandbox, but I’ll keep my snarky comments to myself. And I’ll remember to feel honored when he wants to look at clouds with me. Clouds are chaotic too.

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Narrative Flow

June 18, 2007 at 3:13 pm (Uncategorized)

I receive the most amazing e-mails from folks who read my blog. Many of them offer me support; a few pass on some much-needed perspective on child-rearing. While they all share a street address in the city of chronic town, the folks who write to me are otherwise a diverse group. I hear from young men and older women; some live on the west coast, others on the east, and one in Australia; a few people have just gotten a sarcoidosis diagnosis, while others have struggled with this disease for decades; I’ll occasionally hear from a person with cancer, or M.S., or some other long-term disease; and a few times, I get notes from the family members of someone with sarcoidosis.

Whatever their differences, these people all share one common trait: they want to tell their stories and know that someone is listening, that someone will understand – or at least try to understand. And I’m no different. That’s why I labor on this blog when I could be writing snappy pieces about irrelevant topics for small amounts of money. But writing about sarcoidosis and the changes it has brought to me is sometimes the only way I know how to make sense of it all.
I believe that we all construct the narratives of our lives. What do I mean by this? Well, I should start off with the giant caveat that I was schooled in the philosophy of post-modernism. Although I got my degree in history from U.C. Berkeley, I didn’t actually learn much history of the kind we all were taught in high school – you know, important dates, important events, important trends in world history. Instead, what I took away from Berkeley is the understanding that the events we consider important are important precisely because we have chosen them to be so. In other words, there’s not this inherent “greatness scale” that accompanies one person’s life and not another’s or one event and not another. So, while we like to blare the trumpets whenever we mention, say, the Magna Carta, as some big, important step in the road to democracy, and some big, important event in and of itself, it’s essential to remember that the connection from the Magna Carta in 1215 (which was actually a document that shored up aristocratic privileges) to the U.S. Constitution is only a connection because we have decided to make it one. Plenty of people with Ph.D.s would argue that the Great Peasants’ Revolt (also knows as Tyler’s Rebellion) of 1381 advanced the causes of democracy in the long term much more than a bunch of lords protecting their lordly prerogatives in the Magna Carta.

“Very nice,” I can hear you thinking. “I’m looking for information about sarcoidosis and this weirdo is giving me a history lesson based on the principles of Michel Foucault. Now what does this have to do with e-mails and illness?” Well, if you imagine that just like historians choose to connect various threads to make a coherent historical narrative, so do we, as humans, connect what could be construed as random events to make a cohesive narrative of our lives. Whether or not we do it consciously (and it’s usually unconsciously), we tell the stories of ourselves by connecting certain dots and leaving others out. One person will tell you she became a painter because of a special art teacher in fourth grade; she links these two events, leaving out the equally special high school English teacher that made her think about becoming a novelist for a few months. Another will tell you that his marriage ended because he is the child of divorce. From the countless – indeed seemingly infinite and often chaotic – moments that comprise our time on this earth, we each construct and then tell the stories of our lives.

But what happens when a significant, intervening event – like being diagnosed with a serious and chronic illness – occurs? As all of us in chronic town know, getting news like this pretty much flushes down the toilet whatever conceptions of ourselves we harbored. Everything changes, and it changes quickly. Once the doctors tell you not to count on seeing your son graduate from high school, you realize you have very little control over what I fondly refer to as BAE –Big Ass Events – or, the matters of life and death.

As an added challenge, when you get diagnosed with a disease like sarcoidosis, you don’t even get to benefit from the pre-conceived stories of illness that come with diseases like cancer (which I’m sure are shockingly annoying to have to hear, if you have cancer). But, everyone knows about cancer; we all understand what those yellow, LiveStrong bracelets mean. People with cancer aren’t “sick” in the common parlance, they’re survivors. The general population comprehends cancer treatments and the sometimes horrible impact they can have on the human body. But tell someone you have sarcoidosis, and they’ll first squint at you like they can’t quite get your face in focus, and they’ll say, “You have what?” After you repeat, “sar-coi-dosis,” nice and slowly, they’ll squint again and say, “Well, what’s that?” Like you are personally inconveniencing them. And then you get to explain for the seven millionth time what sarcoidosis is, and all the while, you can just see them wondering if it’s a “serious disease.” Sometimes they’ll mention, “Well, you don’t look sick.” I actually had someone ask me in the grocery store if it was a “real illness, the kind that can kill you.” If only, if only, I was quick on my feet and had thought to tell them that, “No, I suffer from a fake disease.” It’s all a bit jarring – first, having your life made incomprehensible to you by disease, and then having society at large grapple with your confusion.

I do know that I am one of the lucky ones. I got diagnosed with sarcoidosis promptly, and my local doctors had the good sense to send me to specialists who had expertise in my (primarily cardiac) manifestation of the disease. Unlike other stories I have heard, I didn’t have to beg my doctor to explain why I couldn’t breathe and why all I wanted to do was sleep for sixteen hours a day and get told there was some underlying psychological cause. However, I do get dozens of notes on this theme. One woman with pulmonary sarcoidosis was having heart episodes that made her pass out, but her doctor continued to tell her that she had a mild form of the disease and then refused to order the requisite testing to make sure she didn’t have cardiac sarcoidosis. Others have to fight to get medication; or fight not to be directly pumped full of prednisone four minutes after being diagnosed.

I’ve also been fortunate to have friends and family who don’t make it their life mission to minimize my illness. I’ve heard from more than one woman about spouses yelling at them for not being able to work; another person who did manage to drag herself to the office on a regular basis got fired. And now that everyone is so internet savvy, there are plenty of people who type “sarcoidosis” into a search engine, and read the first (and only the first) paragraph of the disease description, which invariably states that most forms of the disease are mild and spontaneously remit. Just what you need, another idiot who thinks he’s an expert on your disease. Luckily, no one in my life tries to tell me my illness is no big deal. But other folks aren’t so fortunate. They have to justify being sick to the people who are supposed to love them and care for them.

I would stop being sick in a heartbeat. I think we all would. I want my heart back; I want my joints to stop throbbing in time with my pulse; I want to stop getting experimental drugs that might cause cancer in a few years; I want to stop spending every spare moment in a doctor’s office; I want my parents and my husband and my son to no longer have to worry about me; I don’t want Jay to lay awake at night checking to make sure I’m still breathing. Illness is not virtuous, nor does it make us so. But I don’t have much choice in what illness was assigned to me. All I can do now is try to make sense of it, to try to learn from it, to try to rewrite my life’s narrative in a way that makes room for my illness. I am not now the same person I was before I first heard the term sarcoidosis. Fear of death, the ongoing traumas of this disease, have changed me irrevocably. But now it’s my job to lay claim to those changes. Writing is my way to connect. Writing is cathartic and calming. It helps me explain to myself who I am now. And reading the kind and wise words of you all has helped me too. I feel like together, in this online community, we can sift out the chaos, we can be heard, and we can re-find and redefine the thread that defines us.

Feel free to post comments, or write to me at

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June 14, 2007 at 4:03 pm (Uncategorized)

“Today I am going to be much too busy to play,” my three-year-old son, Andrew, told me this morning. “I am going to be weeding and weeding the whole day. I am going to dump many wagon loads of weeds.”

From what fertile field did Andrew’s newfound horticultural impulse grow? I’d like to blame his interest in weed control, planting, and watering on a visiting grandparent or on a young buddy whose parents are avid gardeners. But, no, it’s me Andrew has seen, spending hours in our yard, pulling out three years’ worth of weeds, trimming the sprawling apple tree, and plucking the dead stems out of the poppies.

As loyal readers might remember from a blog entry I wrote last summer, gardening has never exactly been my forte. I’ve liked a lush lawn and a well-planted garden as much as the next person, but I’ve never made having a nice yard a priority. In the past, if I had a spare few minutes, I would have picked up a book, called a friend on the phone, gone for a walk, or pretty much done anything besides stoop down and yank out handfuls of unruly weeds. My husband Jay has shared my disdain for yard work. While the other men of the neighborhood seem to like nothing more than revving up the weed whacker in the early hours of a Sunday morning, Jay claims still to be traumatized by compulsory adolescent weeding. (I used to have a lot more sympathy for him until I recently learned that his parents paid – paid, I said – him to weed.)

However, a couple of months ago, Andrew’s wonderful babysitter, Andrea, introduced the idea of a vegetable garden. My son loved the concept of growing food from the ground. Andrea agreed to do all the work. They took on a substantial job. The vegetable bed was so overgrown with weeds, that it took days of hoeing, digging, and ripping to clear it. Then Andrea had to erect deer-proof fencing. Propelled sheerly by the guilt of letting this heavy work fall all on Andrea, I went out in the back one Friday evening, and started hacking away at the unfinished section of their vegetable bed. It was tough going. Given three years’ worth of license, the weeds had established root systems that felt and looked more like concrete bunkers than plant material. Jay came outside to watch me work, and soon gave me a look like he either wanted to check me for a high fever or else run away, far from the bags overflowing with weeds.

But I liked it. It surprised me how much I enjoyed clearing the ground and making way for new growth. I liked it so much that I returned the next evening. And then again. Once Andrea and Andrew’s vegetable bed was finished, I started weeding along the side of our long driveway. Beneath the mats of wild greenery, I found irises, desperately in need of the light the weeds were blocking. I noticed that the apple tree was producing fruit. A rhubarb plant sprang to life in the back yard. I borrowed a friend’s lawnmower and tackled the thigh-high weeds that had made our entire backyard nothing more than a hangout for snakes and deer. In the process of mowing, I uncovered enough deer poop to sculpt a small mountain. Then I started clearing out weeds in our front yard. With a few more days’ effort, we might no longer have the worst yard in Helena.

We’re lucky that the previous owners had been astute and environmentally conscious gardeners. Beneath our tenancy of neglect are the remains of their carefully crafted plan. Most of the front is xeriscaped, a fancy way of saying that it was planted and designed not to need irrigation. All I’ve had to contend with are the ambitious weeds poking up through the mulch and rocks in front. There are lovely perennials– poppies, lavender, irises, a flowering yucca cactus, a massive oregano bush, and a bunch of other plants I can’t name – that have emerged, unbidden. My sole focus has been yanking out the weeds that distract from these beauties. So far, I’ve filled about 15 garbage bags of weeds. I feel like I haven’t even made a dent.

But I like it – that’s the very odd thing. Before this strange new period, I’d never done an honest day’s yard work in my life (except when I was forced – unpaid, thank you very much – to mow the lawn or rake leaves as a kid), but I find myself making up excuses to go outside and weed. My zeal has even shocked the neighborhood. “What happened to neighbors I knew and liked,” the man next door said, when he came across me rooting among the irises. “Did aliens abduct you?” Then he offered me some chives and cabbage seedlings.

I don’t think I would have enjoyed trying to tame the thicket of our yard if I hadn’t been forced into chronic town, or life with a chronic illness. Ever since I was diagnosed with sarcoidosis three years ago, I have had a difficult time finding a way to be outside. Before I got a disease that damaged my heart, lungs, and joints, Jay and I spent as much time as we could hiking. We would meet after work to climb the steep trails of Mt. Helena and Mt. Ascension – two of the peaks that frame our small city. Or we would go on long bike rides into Helena’s valley, where we would whiz past farms and fields of cattle. (Unfortunately, many of these family farms are now being rapidly subdivided in new housing). When we moved overseas to a small Pacific island nation Palau, we shocked the local folks by riding our mountain bikes in stifling tropical heat on the bright red dirt roads that cut through the jungle. We also kayaked and camped along the entire length of the country, sometimes paddling over twenty miles a day. I love being outside. I love the warmth of the sun on my skin. I love the smell of pine needles slowly drying over the course of the summer. I love hearing the birds in the trees above me. I love the feel of my feet in the dirt.

But ever since I’ve gotten sarcoidosis, I haven’t had the physical capacity to go on jaunty hikes or bike rides. I’ve gained so much weight on the prednisone that I huff and puff on our stairs. I can’t imagine scaling a mountain. Plus, we had a child at almost exactly the same time I was diagnosed. Even if I had never become ill, I’m sure we would have had a much harder time backpacking across a national park with a young boy, or carting him along for a twenty-mile hike on a Saturday. Unfortunately, I’m not much of one to go outside and sit and read. I need to be doing something, or else I just fixate on the sun possibly giving me melanoma or on how I should be walking some of my extra pounds off instead of staying parked on my tush. Oddly enough, gardening brings me outside and provides just enough activity that I don’t feel decadently lazy, but not so much activity that I’m sore and can’t move the next day.

Even better, doing yard work allows Andrew and I to be outside together. While Jay is healthy enough to go hiking with him, I am proud to have found my own way to interact with Andrew outside the walls of our home. Andrew putters in the mud, while I work. He digs trenches with his assortment of toy earthmovers, and then fills the ditches with water. He brings out “our materials,” as he calls the rake, shovel, and hoe. He bears buckets of sand from his sand box and then calls me over to try his imaginary “tomato soup.” He loves loading up his red Flexible Flyer wagon with weeds and then towing the wagon over to the “flower mill.” That’s not a typo. I made the mistake of assuming he was pretending to be taking the detritus of our yard to the flour mill. But, no, Andrew was quite specific that at his mill, weeds are converted into flowers. If only. As much as I used to dread the prospect of weeding, I have found that gardening is a blessing: it has allowed my son and I to talk about flowers blooming and trucks digging in an unstructured way. I can explain how plants need sunlight and water to live. “Just like me,” Andrew exclaimed on hearing his first botany lesson. He does his work; I do mine. It’s better than me following him around the yard trying to organize his play, like I used to do. Three year olds need time to get dirty, stir up mud food, and pester their mothers to keep filling up the watering can “just one more time.”

The other unexpected joy of doing yard work is that it gives me a sense of accomplishment. As all of you with chronic illnesses or living with someone afflicted with one know all too well, so much in chronic town remains undone. I could fill several volumes with ideas for writing projects I don’t succeed in even beginning. Jay has hundreds of home improvement projects that are thwarted by my trips to the emergency room to check an episode of arrhythmia or by my needing to spend a Saturday in bed instead of staining the deck. Maybe it’s silly to content myself with entirely clearing a patch of weeds, instead of pushing myself to do something of more “value.” But the activity of gardening clears my head and energizes me, instead of exhausting me to the bone like trips to the gym do. Plus, I get to take out frustration on the concrete roots of the weeds. “Stupid sarcoidosis,” I think loudly in my head, as I hack at the greenery as if it were a rattlesnake, not a hapless patch of dalmatian toad flax. However funny I must look whispering and flailing at my weeds, red-faced from the exertion of turning over the earth, it helps. (I read recently about a study that showed that gardening lowers blood pressure, too.)
My time in the yard also connects me to something beyond myself. I’m not saying that I’m chatting with God in the backyard (I’m pretty certain even God would want me to complete a few more weeks’ worth of weeding before tromping around in the tall grass), but I do feel a little less scared of dying from this disease when I ponder the interconnectedness of the small universe beneath our apple tree. I am definitely not going to morph into one of those gardeners that go for perfection. I don’t want to be spraying pesticides in the name of having straight rows of flowers. I just want to be out there, digging my fingers into the dirt, trying not to hack a worm apart inadvertently with my shovel, or bury a ladybug beneath a mound of weeds. I’m not going to follow the sorry example set by our city commission, which last week voted to approve a “deer management” plan that involved luring deer to city parks and then shooting them at close range. It was mostly the lawn nuts who yelled loudly enough to get this plan enacted. I like watching the deer and knowing they, me, and the burgeoning crab apples are somehow linked.

I suppose the biggest lesson to take away from my newfound hobby is that living in chronic town necessitates change. Right now, I’m not up for climbing mountains or racing my bike. I hope to someday be ready to do so again. But, as much as I miss my more macho pursuits, I have to admit that the view isn’t bad from the back yard, and I feel at peace with myself (unless I’m imagining a weed as a granuloma in my heart). I’m also proud of myself for being willing to try to change. I could just sit inside and feel sorry for myself, so I’m glad I’ve been able to let myself explore new turf.

To survive in chronic town, we have to set aside (temporarily, I tell myself) pieces of ourselves. But if we’re lucky, new loves and new joys will grow in the empty spaces. There just might be a flower mill waiting to convert the weeds of our sickness into blooms of new life.

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Mommy Angst

June 12, 2007 at 1:53 pm (Uncategorized)

I have a confession to make. My son is behaving wretchedly. Not just to anyone, mind you – only to me.

Seemingly overnight, my tow-headed toddler has morphed into a full-fledged boy who acts perennially angry with me and confines his responses to the hostile variety. I’d say he’s a brat, but he’s ridiculously sweet to everyone else. Even the doctor at the emergency room that examined him for burns after our camping fiasco a couple of weeks ago told us he wanted to adopt our kid. “What a wonderful boy!” he said, just a few minutes before Andrew hissed at me that I was “nothing more than a bossy boiler” (a reference from one of the infinite number of Thomas the Tank Engine movies) in a tone that could freeze water on a summer day.

At least I had the sense to look things up in a book. (Whatever character flaws I might possess, I do not suffer from a fear of reference material. Present me with any problem, and I’ll look it up somewhere.) I’m partial to the child development series by Louise Bates Ames. Even reading the title was a relief – Your Three Year Old: Friend or Enemy. “Wait a minute,” I thought, in one of those moments when discovering others’ misery is as comforting as a cup of cocoa on a rainy day. “You mean other mothers are ready to add Junior to their list of mortal enemies? You mean other mothers look at what was once their sweet baby and wonder where this sassy, unfriendly, belligerent, monster came from?” Apparently, they do.

According to the book, three-and-a-half is a lot like thirteen in terms of human development. Kids desperately want to separate from the person who most represents their dependence: Mommy. The problem is that even though a three-and-a -half year old like Andrew has far more verbal and motor skills than he did a year ago, he’s a long way – a very long way – from independence. The world is still a scary place; he still falls down frequently; he can’t pour his own milk when he’s thirsty, or draw his own bath when he wants; he can’t drive (which especially chafes Andrew); he can’t make us play “Bear Necessities” over and over again on the iPod; and he can’t make me sit in his sandbox with him for seven hours at a stretch. In short, he still needs us – especially me. Sometimes, he’s okay with that, but, on other occasions, when I make him put on his shoes when he doesn’t want to, or I forbid him from throwing rocks at the cat, he turns into an unpleasant being. I half expect his head to start spinning around, a la The Exorcist.

But like so many other aspects of life in Chronic Town, the issue of my three-and-a-half year old becoming bratty has taken on resonances that drown out the situation itself. Mostly, I worry that Andrew is having an especially difficult time with me now because of my illness. Although my recent burn drama had nothing to do with my sarcoidosis, I don’t think Andrew could tell the difference. After all, I was ordered to stay in bed – just as I have been after liver biopsies, pneumonia, surgeries, doses of methotrexate, etc. And just like on those past occasions, he spent much of the day plotting to get into bed with me, and, once he was snuggled next to me, he was warned not to jostle me, not to touch my leg, to let me rest, and so forth. When I was finally able to be up and around this week, Andrew expressed his true feelings about the entire ordeal: “Stupid burns, keeping Mommy in the stupid, stupid bed.” I swear I heard something break inside my chest when he told me this.

I don’t want Andrew to hate me because I’m sick more often than his friends’ moms. I don’t want him to resent the time I need to spend resting or recuperating from my illness. I don’t want Andrew later to look back on his life, and draw from the hazy memories of his early childhood only the sense that his mother was in bed, kept away from him by illness and a concerned father. I know he doesn’t have the emotional or intellectual wherewithal to make many distinctions yet, but I continually try to help him understand that I love him and I want to be with him every second of the day, but sometimes, I just can’t. And that’s not his fault. And it’s not my fault. But who knows what sticks to and what slides away from the busy brain of a pre-schooler.

There’s really not much I can do except worry. I also remind myself daily not to treat Andrew with kid gloves because I assume that every bit of his bad behavior or sassiness stems from some unconscious fear of my illness. Sometimes kids are just rotten. So, I strive to swallow my anxiety, and send him to time-out when he needs it – and myself to bed when I need that. I just wish that not everything in my life was shadowed by sarcoidosis. The truly crummy thing about living with chronic illness is that the tentacles of fear, anger, suspicion, and anxiety touch everyone and everything. Maybe there’s a book to look that up in.

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Burned Out

June 5, 2007 at 3:01 pm (Uncategorized)

“We’ve got to figure out a way to get the bulls-eye off your back,” a friend told me when learning about my latest mishap. Another person jokingly told me that he’d rather not stand next to me, in case he was around when the asteroid that was bound to crash down from of the sky onto me finally landed, claiming him as some sort of collateral damage.

Today is the first day since I was burned on a Memorial Day weekend camping trip that I’ve been out of bed for longer than it takes to use the bathroom, hobble downstairs for a meal, shuffle out to the car to get my daily bandage change at the hospital or have a doctor poke at my wound. I’ve spent a lot of the past week reading (four thick novels, several magazines, and a nonfiction book); watching bees crawling on my bedroom window and calling for my husband Jay to clamber up on my desk to catch them and release them outside (it’s spring here, and I’m relating to the vulnerable among us–even if they do have six legs); talking on the phone (re-telling the story of my third degree burn); and trying to prevent my busy three-year-old from colliding with my giant wound when he pops in to hug me. Mostly, though, I’ve been feeling sorry for myself.

Self-pity takes up a great deal of time and energy. For much of the time I’ve resided in chronic town (the three plus years since I received my diagnosis of sarcoidosis), I’ve done a fairly good job of keeping the “woe is me” line of thinking to a minimum. I’ve accomplished this by being busy. Having a busy and bossy three-year-old does wonders to stave off wallowing. Andrew makes sure I don’t have the opportunity to lay around and feel sorry for myself. Whatever thoughts I have had on the lousiness of my life, I’ve tried to sublimate into this blog, which I consider an effort to build community, spread the message about what it’s like to be sick all the time, vent, and maybe, someday, get a book deal.

Unfortunately, the burn and the doctor’s subsequent orders to stay off the leg until it has started to heal, have meant that I’ve had entire days with nothing to occupy me but my brain. Rather than using this thinking time for something useful, say, to figure out a parenting strategy for Andrew’s bad case of “I’m-almost-three-and-a-half-so-I-don’t-need-to-listen-to-you-anymore,” or to jot down notes for an article, I’ve put my head to work enumerating all the ways my life is tough, my lot is hard, and my luck is bad.

Today I awoke near noon, with a throbbing headache and the realization that I am really, really sick of myself. Since it looks as though the burn is not going to get infected (everyone’s main concern, because the Remicade and prednisone have left me so absurdly immuno-compromised) and since all this thinking in circles has left me dizzy, I decided to rise and, if not shine, then at least rise and hobble around. I swept the kitchen floor, checked my e-mail, and thought that perhaps my on-line friends might like to know that I’m still alive. I am.

When I was horizontal for seven straight days, I spent a lot of time wondering if I am unlucky. At first glance, it does seem as though more lousy things do indeed happen to my family and me. Of all the people in the campground, I’m the one to be burned. Of all the people in the world, I’m the one to come down with the worst form of a weird and incurable disease. Our plumbing floods our house; we’ve had two major car crashes in 18 months; any medical procedure performed on me backfires; and so on. And on.

“You must have been a lousy person in a past life,” a friend told me, in an effort to get me to laugh. “I mean, some kind of horrible Chinese overlord or medieval baron who oppressed the peasants and raped their daughters.” I chuckled dutifully, but, truthfully, similar thoughts have crossed my own mind, in an unfunny way. Am I paying for something? Am I receiving my fair share of troubles? Even Jay, my staunchest advocate of the rational, asked me if I felt like I was being punished for something.

Now that I’ve seen a view of the world beyond that afforded by my bed, I’ve returned to my senses. There is no profit in this type of thinking. I refuse to believe in a world where camping accidents are overseen by forces of history and God. That type of thinking is at its best, magical, and at its worst, solipsistic. I am not unlucky. I am not being punished. I simply had a mishap – one that could have been much worse, especially when you consider that Andrew was sitting on my lap when the pot of boiling water headed our way. The only difference between me (as well as you, other denizens of chronic town, by the way) and the rest of the healthy world is resiliency. The same crap happens to everyone – at least, everyone who dares to venture outside their house. But when you are chronically ill, you spend much of your time dealing with issues of health both major and minor, even on good days. So when the inevitable, picayune traumas of life occur, they feel that much more oppressive. Plus, when you are chronically ill, every accident becomes more potentially complex. Everyone took my burn so much more seriously than they would if I didn’t have a multi-systemic disease that was being treated with hardcore immune suppressants.

It’s time for me to return to bed and elevate my leg again. But for the next few hours, I’m not going to host any pity parties. I’ll meet the next “poor me” thought that passes through my head with a truthful response: I have a doting, kind husband; I have friends calling to help us through this hard time; I have a beautiful, healthy, precocious boy, who tells me loves me at least twice a day; I have a nice home with views of the mountains; I have health insurance and enough money in the bank to pay for medicine; I have extended family offering to fly out from Kentucky or drive out from Billings to help. I am lucky – asteroids be damned.

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