Sometimes It’s Just Ridiculous

May 30, 2007 at 10:37 am (Uncategorized)

I know it’s been a bit since I’ve posted, but I think I have a pretty good excuse. Andrew and Jay and I went camping over Memorial Day weekend. We were having a great time right up until the moment that a good friend accidentally spilled a pot of boiling water on me, leaving me with third degree burns on my leg and second degree burns on my side. It was a complete accident (which means, you know who you are, STOP feeling guilty), but it did put a damper on the weekend. The burns also have me laid up pretty good, which makes getting to the computer a challenge. But I will continue to post as often as I’m able. And we’re all looking forward to getting out camping again as soon as possible.

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The Perils of Feeling Good

May 21, 2007 at 4:40 pm (Uncategorized)

My sinus headache persists, along with the infection that causes it.  I wonder what’s the next weapon in the antibiotic arsenal I’ll be given.  Will my doctors opt for something nuclear, say, a little plutonium in my nasal rinse?  Maybe that will finally send this infection packing?  If only we had found WMD in Iraq.  I could have put them to good use eliminating whatever the hell it is that’s inhabiting my sinus cavity.

I’m open to drastic options because so far this infection has resisted every intervention known to medicine.  I was so desperate that today I went to a naturopath and had him stick four extremely thin Q-tips soaked in various oils up my nose into each distinct sinus cavity in an effort to get them to open up and drain.  I expected a miracle.  What I got was four Q-tips up my nose, the lingering smell of eucalyptus oil, and a smaller bank account.  I hope the healing comes soon.  Or at least that the headache goes away.

A few weeks ago, I would have grumbled about the infection, swallowed the various combinations of antibiotics prescribed to me, and waited for these bacteria to grow bored with the confines of my mucus membranes and move out.  But I wouldn’t have been as desperate (and impatient) for a cure like I am now.  I wouldn’t have gone in for my current heroic measures: the magic Q-tips; the saline sinus rinses; the gymnastic nasal sprays (I’ve been directed to take them hanging upside down like a bat so that the potions  can soak into the back channels of my sinuses); the improvised steam room I’ve made out of our shower.  I feel like I’m ready to be a coke head by this point.  There’s not much I wouldn’t shove up my nose if someone told me it would get rid of this infection.

There is exactly one thing motivating my more aggressive approach to the infections that I’ve become sadly accustomed to over the past three years.  I want my Remicade!!!  And I can’t have it until seven days after I finish taking whatever antibiotics I need to rid myself of this bug.  Because Remicade is such a powerful immune suppressant, it will allow any nascent infection to run utterly wild (and maybe even kill me).  So, waiting is the right thing to do.  Still, even if my infection miraculously clears tomorrow, I’ll be at best a week late getting my second infusion.

I almost terminated a longstanding friendship the other day, when someone casually asked me, “What’s the big deal?  You’ll get over this infection, and then you’ll get your Remicade, maybe just a couple of weeks late.”  I sputtered, “Big deal? Few weeks? Late?” before realizing that someone who doesn’t live in chronic town or have a loved one in chronic town, will never, ever realize how dearly we chronically ill folks cling to anything that looks, smells, or feels like a ticket out of this sorry place and back to the land of the healthy.  When you’ve felt like shit for three years, and then something proves to make you feel normal again – or even just something in what you vaguely recall as the general vicinity of normal – the thought of just “waiting a few extra weeks” will frazzle your neurons, spike your temper, make you figure out how to hack into the hospital’s imaging system to ensure that the CT scan they’re taking tomorrow to monitor the infection shows that everything’s “clean” – even if it isn’t.

Hope is a perilous thing.  Imagine a lifer, someone’s who has been in jail for twelve years or so, and then is given a four-hour reprieve from her jail sentence, before having to return for forty more years.  For four hours, she gets to feel the wind on her face; she gets to drink a cappuccino; she gets to smell the breeze and have people smile at her; perhaps she gets to browse in a bookstore or hug her daughter.  And then, it’s back to the clink.  Don’t you think the confines of those bars will feel worse after the few hours away?  When I let my inner drama queen run wild in the throes of my worst sinus-pressing headaches, I feel like the jail girl.  My one Remicade infusion was what took me away from the clanging metal bars, the institutional food, the single patch of light I saw through a narrow window.  But now, courtesy of the microbes in my mucus membranes, I’m back to having aching joints, no energy, and a sense that nothing will make this go away.  I’m stuck with my life sentence of multi-systemic sarcoidosis.

My friend, who I did not disown after all, is right.  I will get over this infection, and then I can return to the infusion center and happily watch the Remicade shut down my immune system (and my joint pain) for a few more weeks.  I will wait it out.  Maybe it will take an extra week, or two, or three, but I’ll get there.  In the meantime, I’ll fight the urge to scream at my wonderful doctor “I want my Remicade, NOW!” in exactly the tone Andrew uses with me before he’s sent to time out.  Because my vision of time out is an extra week without Remicade.  And I wouldn’t want that.

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Sinus Woes

May 17, 2007 at 5:56 pm (Uncategorized)

My body is currently doing battle against a raging sinus infection. I say raging because I’ve had the same symptoms on and off for about two months, and I can vouch by the quantity and quality of my snot that whatever bug is causing this is very angry– or at least very angry at my mucus membranes.

I am now on my third antibiotic in five weeks; even with this extra arsenal, my body is doing a rather shoddy job of overcoming the infection. Combined with the fact that both my mother and my doctor have ordered me to bed, and that looking at the computer screen contributes to one of the worst headaches I’ve ever had, I have decided to listen to the authority figures and go to sleep for a long time.

I will write anon, when I can see straight– and when I won’t feel compelled to discuss with the whole wide world the state of my mucus. And that will be a good thing for everyone.

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Cold Comforters

May 14, 2007 at 7:53 pm (Uncategorized)

Anyone out there with cancer? Well, I have news for you. Rather, Louise Hay, the author of Heal Your Body From A to Z: The Mental Causes for Physical Illness and the Way to Overcome Them, has news for you. I’m sure your doctors have explained that cancer occurs when an abnormal cell rapidly divides until it, and its fellow rogue cells, create tumors. Well, it’s time to cast off that tyranny of rationality. Cancer and other diseases, according to Ms. Hay, are caused by various types of wrong-thinking. In the case of cancer, “deep hurt, long-standing resentment, a deep secret or hurt eating away at the self, or carrying hatreds,” is the real culprit.

How about multiple sclerosis? I know several people afflicted with MS, including my Uncle Bill, who died a painful and lonely death in the seventies before the new treatments emerged that make the disease more manageable today. Current researchers have hypothesized that genetics, environmental triggers, or even a virus, cause MS. Nope. According to Ms. Hay, the “probable cause” of multiple sclerosis is “mental hardness, hard-heartedness, an iron will, inflexibility, or fear.” And while it’s been rumored that drugs such as Avonex, Betaseron, and Rebif can delay the disease’s progression, don’t bother taking them. Instead, counter your heard-heartedness with “a new thought pattern”: “By choosing loving joyous thoughts, I create a loving, joyous world. I am safe and free.”

It’s too bad Ms. Hay doesn’t have sarcoidosis listed in her book of diseases, the bad thoughts that cause them, and the good thoughts that will cure them. I mean, she included leprosy, heart disease, brain tumors, and liver disease, in her handy, little alphabetized guide. If only she could pinpoint my metaphysically naughty thoughts, I could save my insurance company a bundle on the new medication I’m taking. Years of research went into Remicade, and, after only one infusion, I feel better, but, what the hell, I’d be curious to know how I’ve made myself sick. She does have a section on arthritis. Since my sarcoidosis has lately been causing a rheumatoid arthritis-like inflammation, I figured the arthritis rules might apply. The “probable cause” of arthritis is “feeling unloved, criticism, and resentment.” My new thought pattern is: “I am love. I now choose to love and approve of myself.”

You’ll have to excuse me for a few minutes while I go kick a wall or scream into my pillow or express my rage in some form other than by hiring a hit man to appropriately execute Ms. Hay. Because Lord only knows what commissioning murder for hire will do to my thought patterns and what diseases that will cause. So I’ll settle for hoping that Ms. Hay contracts colo-rectal cancer, a brain tumor (which, according to her, is caused by “incorrect computerized beliefs. Stubbornness, and refusing to change old patterns.”), and a whopping case of leprosy, and that her doctors deny her all treatments except formulating new thought patterns.

I discovered the book from which I’ve been quoting when I was browsing the shelves at the bookstore. It wasn’t the first time I encountered Louise Hay; fifteen years ago, when I was in the midst of a profound depression caused by trauma, a friend gave me a Hay tape to listen to. She had a soothing, gravelly voice that commanded me that the Universe was my friend and that the Universe only wanted good things for me. It was pretty bland stuff, and, while it certainly didn’t exacerbate my depression, then-recent life events had convinced me that the Universe lets pretty awful stuff happen. The tape didn’t make me toss out my anti-depressants and shriek, “I’m cured,” but neither did it make me want to hire a hit man.

Heal Your Body From A to Z is a silly book, and I shouldn’t let it enrage me so profoundly. But plenty of people take silly things seriously, and I shudder to think of someone with a brain tumor lambasting herself for thinking the wrong thoughts and then repeating mantras (“It is easy for me to reprogram the computer of my mind.”) that reinforce the message that somehow she made herself sick. Being seriously ill takes up enough energy without spending extra time worrying about how you brought this on yourself. And it seems to me that this is exactly what Ms. Hay is encouraging us to do.

I get touchy when people begin lecturing me on the mind-body connection. This is not because I don’t believe that our thoughts can affect our body. I know perfectly well that constant stress can contribute to heart disease, and that current studies indicate the self-labeled optimists live longer than those who think of themselves as pessimists. Mothers lift up cars with super-human strength delivered by the mind; yogis slow their breathing to a virtual halt. I don’t doubt that our brains and our bodies are like a pair on a tandem bicycle. They are separate entities that are intimately connected. Sometimes one of these metaphorical cyclists pedals harder; sometimes the other is responsible for getting up the hill. For me, the trouble begins when folks don’t know when to stop. There is a difference between acknowledging that our mental state can affect our body’s function and insisting that our thoughts cause our body’s problems.

The new-agey, soothing tones that cloak this message feel to me like they’re delivering the same old message that people in trouble have had to hear for thousands of years. Louise Hay sounds like a kinder, gentler version of Job’s comforters – the three “friends” who show up after Job has lost his family, his farm, and his health (all because God makes a bet with Satan, who appears as an angel in this story; I repeat, a bet, a friendly little wager among colleagues) to let him know that it’s all his fault. Elihu, the last of these three irritating fellows to lecture Job, tells his afflicted friend that Job must have done something wrong, because God is righteous, that God is beyond our capacity to comprehend, and that God does not do evil. Sounds a lot like the Universe only wanting to give us good things, if only we’d stop blocking the love.

Luckily, not too many people have told me outright that I’ve made myself sick with a chronic and potentially fatal illness. I have had “friends” ask me about the “energy” I’m bringing to the process of being sick, to which I’ve replied, “Have you ever had every bit of your body hurt? Have you ever laid awake at night worrying that the cardiac manifestation of your disease will prevent your from seeing your son start kindergarten?” When they say, “Er, no,” I then remind them that I bring all kinds of energy to the process. I’m alive, walking around, and living with a gram or two of compassion, which is more than they can say.” (Truthfully, I have never really uttered these words to the “energy” folks. But now that I’ve thought them and written them, I’ll have them ready next time. Usually I’m just so shocked that someone could be such an asshole and actually articulate such asshole thoughts that my mouth drops open and I’m left speechless.)

Lots of other people, wonderful friends and family, pray for me in their own traditions. One woman sends me healing reiki energy. My brother Ken has continued his Lenten observances in my name. My parents have contemplative nuns pray for me. Eric sends “good vibes” my way. I like all these prayers and hopeful thoughts offered in my name. It makes me feel loved. It makes me feel not alone in this terrible process of disease. But when I start thinking about the God-illness connection too much, I can get just as squirrely as I do with then Louise Hays-ers. When I was in high school a young friend of my parents died a rapid and very unpleasant death from cancer and left behind two small boys. She had plenty of comforters of the Job model stopping by her hospital bed and telling her that she wasn’t praying hard enough or right enough; otherwise, God would have sent her a miracle and cured her. Apparently, God wasn’t in a miracle mood when Laura died – or when millions of other good and decent people die each year before their time. I don’t want to ask God for a miracle because if I don’t get one, does this mean I am undeserving or that God is fickle in delivering them?

And this brings us back to the mind-body people and their belief in the sufferer’s role in her own suffering. If God or the Universe or However You Want To Think About It truly is good and truly is capable of enacting amazing miracles and you end up dying painfully anyway, it must be your fault in some way. If this is your model, you end up either blaming the sick person (like Job’s comforters) or questioning the whole darn system (like atheists, agnostics, and religious dissidents everywhere).

The blame that some of the ultra-religious and the ultra-New Agey deliver to the doorstep of the sick and the broken really comes from a place of fear. Because – and of this I can assure you – no matter how many good thoughts you think, no matter how many prayers you toss into the sky, no matter how scrupulously you live your life – you will die. Given the advanced medical technologies of today, you’ll probably die of something chronic, or something that eats away at you a little more each day, like cancer. It’s awful and it’s wrong. We shouldn’t die, and the people we love shouldn’t die. And we shouldn’t get sick. But here’s the thing: it happens, no matter how many new thought patterns you evolve, no matter how stiffly you try to hold it at bay by wondering in the back of your mind what “so and so” did to deserve getting this. Was it a bad diet? Did they spray chemicals in the house? Did they carry shame in their heart? Did they pray to the wrong God? Or to the right God but not hard enough?

After Job’s comforters scuttle back to the rocks whence they came, God actually speaks to the tormented Job. What God says isn’t exactly comforting. Basically, He tells Job that Job, like all humans, is a piss-ant (my words, not the Bible.) In some of the most beautiful verse ever set down, God asks Job, “Who is this who darkens counsel, speaking without knowledge?” and then goes on to question Job, “Where were you when I laid the earth’s foundations…Who closed the sea behind doors when it gushed forth out of the womb, when I clothed it in clouds…Have you ever commanded the day to break, assigned the dawn its place…Have you ever penetrated to the sources of the sea, or walked in the recesses of the deep? Have the gates of death been disclosed to you? Have you seen the gates of deep darkness? Have you surveyed the expanses of the earth? If you know of these – tell Me.” In other words, God is transcendent and His nature is unknowable. In his speech to Job from the whirlwind, He doesn’t explain fairness or injustice. He doesn’t tell Job why he chose his most loyal servant to test his theories against Satan. God simply asserts that He is above comprehension, beyond the puny, flailing reach of Man’s mind.

For me, the message of Job (and of life) is that in the face of such an awesome, remote, and powerful force, we can’t expect answers or solutions that make sense. We are like algae living on a pebble in a pond, trying to grasp in the infinitude of the sea. We can only know in our hearts that we cannot understand the ways of God. In an odd way, when I’m able to remember this, I’m strangely comforted because I understand there’s no reason I’m sick, and there’s no reason someone else isn’t sick. And no matter how much I flail my algal self around, that’s not going to change.

Call me hopeless, but reminding myself of my puniness makes me a better person. I don’t play the blame game like Louise Hay. I don’t point my finger at those suffering. I might commission a murder or two of self-help authors, but, besides that, I’m fairly open to the notion that we – we humans – are all alone together, trying our best.

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Give Me an “R”; Give Me an “E”; Give Me an “M”…

May 10, 2007 at 1:34 pm (Uncategorized)

Yesterday I had the most expensive two-and-a-half hours of my life. I (or those acting on my behalf) have certainly spent more total dollars than last afternoon consumed – for instance, my wedding, my PET scan, and long hospitalizations have all cost more in absolute terms – but in a price per minute equation, I think I set a new personal record. $6,000 odd dollars for my first Remicade infusion. $6,000 to watch a bag of what looked like saline drip into my arm. $6,000 to sample the most powerful in the new line of anti-TNF agents that are proving effective against inflammatory auto-immune diseases such as sarcoidosis. My husband Jay kindly noted that we would save out insurance company a lot of money if I simply got infused with say, heroin or cocaine.

I’m not usually a superstitious person. I walk under ladders, have watched a black cat cross my path, and have even broken a mirror. (Hey, maybe that’s why my life sometimes feels like demons have possessed it!) But today, in the wake of my $6,000 Remicade fix, I am feeling touchy about pushing my luck. I am loathe to mention that I am feeling good. (Make sure to read the “good” with a whisper. We don’t want to summon forth the broken mirror sprites). The docs said that if the new treatment is likely to work, I should feel positive results sooner, rather than later. I awoke today and noticed that the joints in my feet weren’t throbbing. I also noticed that I could bend my fingers, and, as the day progressed, that my fatigue didn’t threaten to devour me in its gaping maw. It’s startling to realize that the way I remember feeling in pre-sarcoidosis days isn’t a false memory – similar to how we all start “remembering” high school as fun around the time we turn twenty-two. No, I actually did used to have energy and mobility.

I am not jinxing myself. I know I have a long road ahead with the Remicade to even determine if it works. Two weeks from now, I’m due for my next infusion. Maybe it’s not the Remicade easing my pain and fatigue today. Maybe some other poor shmuck broke a mirror and the naughty gnomes of chaos are visiting her today, only to return to my knuckles and ankles tomorrow. Maybe the good effects will wear off in a few hours. Maybe the stars have realigned in a new formation. Maybe I spontaneously went into remission at precisely the time they dripped $6,000 worth of immune-suppressants into me. Who knows? But if living in chronic town has taught me one thing it is this: I must appreciate every good day that comes. Extrapolating the causes and consequences of my good day is up to my doctors. My job is to live it.

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May 8, 2007 at 4:39 pm (Uncategorized)

Spring is coming to Montana. A few wild flowers are poking their fragile purple heads through the detritus of winter. The grass on the surrounding hills is turning a little greener each day. Unfortunately, at intervals much less predictable than the swing of the seasons, so am I. Just this morning, I had a terrible green attack at the gym, and no, I don’t mean that I was blooming along with the lawn. I was jealous.

Under the guidance of a physical therapist, one who knew me when I was a competitive cyclist, I’ve been slowly re-conditioning myself. It’s tough and slow going, especially since I’ve lost so much fitness and mobility in the wake of my sarcoidosis-induced joint inflammation. I’m impatient to regain all my strength and endurance quickly. Fortunately, Don, the physical therapist, is astute enough to recognize that plopping a former athlete on a recumbent bicycle with the generic words of wisdom to “go as long as you can without hurting yourself” (which is what I’ve heard from other physical therapists in the past), is like hobbling a cheetah’s or a greyhound’s front leg and then admonishing the animal to run, but not too fast. Before I started seeing Don I was oscillating between hour-long punishment sessions on the elliptical trainer and days of post-exercise, throbbing, swollen joints that compelled me stay away from the gym.

Don established some ground rules: 1.) No heart rate monitor allowed. Amazingly, this non-MD has been the first and only person among the host of cardiologists, rheumatologists, pulmonologists, electrophysiologists, and makeyouinsaneologists I count as my specialists, to tell me that taking a beta blocker like Toprol, as I do, makes workout heart rates irrelevant. It’s not like I didn’t inform anyone else that I used a heart rate monitor. I did, and they all instructed me simply to lower my target heart rate by twenty or so beats. Well, working out with my heart rate at this prescribed 120 beats per minutes turned my face a frightening shade of magenta and made me feel like I would go into cardiac arrest. Now, without the heart rate monitor, I am able to pay closer attention to the exertion of my own body, and I don’t feel light-headed when I leave the gym. Even better, I can come back for more exercise the next day. 2.) Start with twenty minute sessions, three times a week. Even if I felt good at the end of that period, I was still to stop. This rule is the most difficult for me. For dozens of years, I trained my mind and body to never be satisfied with an exercise status quo. However far and fast I was going, my urge was (and is) to go further and faster. “No, no,” said Don. “Stop listening to your old self. You just can’t do that now.” 3.) If I do anything that causes me pain that lingers for 48 hours after an activity, I’ve done too much and need to back off at the next session. With the exception of the three-hour hike last weekend that made my feet feel as though the bones had been pulverized for a good four days, I’ve been successful with this injunction.

Wonder of wonders, miracle of miracles. A little common sense has led to a whole lot less suffering. After three weeks on the sanity exercise plan (as compared to the self-flagellation “ride til you keel over” plan I devised for myself), I’ve built up from twenty minutes on the bike to thirty-five, and I’ve even added ten minutes on the arm bicycle to loosen my upper body joints. I’m not going to be setting land speed records anytime soon, but I do feel like my fitness is returning to me gradually–and that with time, and a small amount of sense, I’ll be back in healthier routines soon. Yes, I’m still seriously overweight. Yes, I’m still grievously out of shape. But, if I put one foot in front of the other, one day at a time, it’s enough. Right?

Truthfully, I can keep this perspective for about 12.3 percent of the time. And then I see someone else – someone who reminds me of how I used to be, or someone who I want to be, or someone who I think I should be, and my mind descends into chaos. In the midst of a green attack, I lose sight of who I am now and where I am now. For example, yesterday at the gym, I was contentedly spinning on the recumbent bicycle, admonishing myself not to go too hard, and happily listening to truly atrocious Romanian dance music on my iPod, when I looked up and saw a heavily pregnant woman walking briskly on the treadmill. She was slim (except for her baby belly) and dressed in clinging, black lycra. She looked fit and beautiful. And in one foul instant, I hated her, for being lovely and fecund all at once, and hated myself, for being unlovely and unfecund, just fat. “I should ride for two hours,” I thought to myself. “I have got to lose more weight.”

After my jealous fit passed, I grew sad, not only because it’s silly to double over with hate at the sight of a strong and healthy woman, but also because I used to be a strong and healthy woman and it was never enough for me. When I was pregnant with my son, Andrew, who is now three, I worked out five days a week; I took classes towards my master’s degree (in fact, I finished a final exam on Shakespeare’s tragedies as Andrew kicked me in the kidneys a few days before he was born); I worked on paid writing projects; I cooked and shopped and cleaned the house because Jay was working long hours in private practice; I walked the dogs twice a day; I wrote a birth plan and stockpiled food. I even had clingy lycra workout clothes. And did I see myself as the slim, powerful, lovely, busy woman I was? Nope. I was too busy finding faults with myself. One particular episode sticks in my mind. When I was about five months pregnant, Jay and I went for a hike in northern California. I was just beginning to develop a whopping case of sciatica because of Andrew’s in-utero position. We hiked for ten miles, and then I felt like such an out-of-shape wimp because that’s all I could do. Really, I’m not exaggerating how absurd I was.

My primary doctor here in Helena, a caring and methodical practitioner named Dr. Samuel, was herself diagnosed with a chronic illness and had to take a massive dose of prednisone for over a year. She’s better now, but she still carries an extra fifty pounds of steroid memories. One office visit, she asked me if I sometimes felt like I didn’t recognize the person in the mirror any more– after sarcoidosis and prednisone have wrought their changes on me. This is the kind of question that only someone who has experienced the shape shifting (both inner and outer) of illness could think to ask. “Yes,” I told her. “I wonder who this bloated person is staring back at me.”

However, after pondering my jealousy attack at the gym, I wonder if I have ever been able to recognize the competent and attractive person staring back at me in the mirror. Or have I always found my visage too fat, too lazy, too needy, too something? Even when I rode my bike one hundred miles and maniacally maintained a body fat of twelve percent (no mean feat for a young woman), I told myself I was too chubby. Even when I attended one of the best colleges in the country and got good grades, I told myself I wasn’t smart enough. Even when I got articles published and co-authored a book, I told myself I wasn’t really a writer. And now, even when I juggle motherhood, illness, work, a marriage, and other obligations, I tell myself I’m not doing enough, or I’m too fat, or if I somehow tried harder I could make this disease go away.

It occurred to me at the gym, as the atrocious Romanian dance tune on my iPod segued into an equally atrocious Polish dance tune and my feet kept spinning in time on the pedals of the recumbent bike, that I need to cultivate a new way of seeing myself and my place in the world. Perhaps the green of spring can connote more than the green-eyed monster of jealousy –the one that eyes all the sporty folks in our mountain town jogging up two thousand foot climbs on their lunch breaks – and wants to break their backs and then break my own trying to run up that hill. But this is not where I am now. Don is right. I do indeed need to stop listening to my old self. Let the green of spring bring in a freshness, a new light in my eyes – one that can recognize what an accomplishment it is for me to ride in place for thirty-five minutes, care for my son, walk with my husband around the block, and write an article. Now is the time to be green. And alive.

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May 2, 2007 at 3:59 pm (Uncategorized)

Something strange has been taking place. I’ve been feeling sort of (dare I say it?) well. Or, more accurately, well-ish. Now that I’ve typed those four letters in black and white, I’m worried I’ve jinxed myself. But I can’t really erase the hopeful concept of w-e-l-l that has been brewing in my brain, no matter how many times I hit the backspace key on my keyboard.

It’s odd how much better a person feels when she stops ingesting toxic chemicals. Who would have guessed that once I did away with my weekly dose of a drug belonging to a class named, literally “cell killers,” I would perk up a bit? It makes me wonder if I might be cured altogether if I stopped mixing Formula 409 kitchen cleaner with my morning coffee. All irony aside, since my doctors have declared my methotrexate/Enbrel regime a “failure,” I’ve been ordered to desist with all sarcoidosis treatment (except lovely prednisone) until I begin my Remicade infusions next week. My joints are more swollen; my sarcoidosis rash has gotten worse, my heart is thumping away like conga drums at odd intervals, and my liver levels are reaching for the starts…but, I feel well-ish.

I felt so well-ish, in fact, that I spent what would have once been a normal weekend with my husband, Jay, and my three-year-old son, Andrew. Typically I am so thoroughly exhausted by the process of being functional-ish during the week, that by the time Saturday rolls around, it hurts for me to move my feet in bed. So, Jay gets “Andrew duty,” while I remain under the covers, trying to find energy in fitful naps. The house is quiet – almost too quiet to sleep – since Jay and Andrew are usually off bicycling, hiking, skiing, swimming, at the library, or just outside.

Part of living in chronic town (living with an ongoing, serious medical condition) means talking with yourself. And, no, I don’t mean a self-dialogue of madness brought on by illness, though I have often felt on the brink of that sort of babbling too. For me, this more sane-ish talking to myself involves giving myself repetitive pep talks, along the lines of, “It’s better to miss a Saturday of fun with my son, if the rest I’m getting will allow me to be heathier for the next week, month, year, decade…” or “It’s really OK that I’m ingesting poison every week because ultimately this poison will not only make me vomit and lose some of my hair, but will also kill my disease” or “It’s not a big deal my doctors are calling my response to a new drug a failure. They don’t mean this personally, and it doesn’t mean I won’t succeed on my next treatment.” or “It’s fine that I’ve gained so much weight on prednisone. It’s better to be hefty than to keel over from cardiac sarcoidosis.”

On the weekends when Jay and Andrew were doing something I particularly enjoyed in my pre-sarcoidosis life, I would ramp up the amount and intensity of these silent pep talks. Saturdays were especially dreadful for me when Andrew was learning a new activity without me by his side, or when he would return from a hike with his Daddy smelling of pine needles, sunshine, and mountain air. The absolute worst was the Saturday that Andrew went downhill skiing for the first time – without me. I stayed in bed, with crippling joint pain, waves of methotrexate-induced nausea, and a bad-ass case of self pity. Even a full-fledged lecture to myself didn’t improve my attitude.

But this weekend, I could silence the voices in my head because I was actually out there with them, instead of laying a-bed, angling for a positive spin on a crappy situation. On Saturday, we rode our bikes to the season’s opening farmer’s market. Jay towed Andrew in the bike trailer, and with the seventy-odd pounds the trailer, the kid, and the farmer’s market chickens and potatoes added to his bike, I figured we were fairly well-balanced, given my prednisone weight gain. Later that day we went swimming, and the next morning, we went for a long hike, during which Andrew hopped out of the pack on his father’s back and hiked a couple of miles on his own short legs. The sun was shining; the breeze was light. Although the hills we hiked were just beginning to turn green and send out the first inquiring wild flowers of spring, the surrounding mountains were still majestically snow-capped. We are fortunate to live in a place of such stunning physical beauty, and I actually started to cry because it had been so long since I had been outside, noticing the world around me.

I cried for other reasons, too. Several times, during each of these special weekend days, Andrew went out of his way to gently pat me, or kiss me, and tell me how much he liked having me along. Jay says he has always talked to Andrew about how “Mommy hikes too” and “when Mommy is done being sick, it will be a lot more fun to go hiking with Mommy.” Apparently, Jay’s message had sunk in because Andrew was thrilled to have me along with them. My little guy wanted to keep me in his sight when we were biking, swimming, and walking. It was like he didn’t quite believe I wouldn’t just vanish mid-pedal stroke. Witnessing his delight in my presence made me realize – in a visceral way – that I wasn’t the only person who had been sad and sighing on the weekends when I was stuck in bed. I learned anew that you move your whole family to chronic town when the disease comes a-knocking. Just because I was by myself in bed on countless Saturdays, babbling truisms and trite-isms to myself, didn’t mean that my toddler and his handsome father weren’t dealing with voices in their own heads, feeling alone-ish and sad-ish and distinctly unwell-ish without me.

I hope the Remicade works. I am heartened to learn that my doctors will be giving me such a high dose of it that I won’t need to take the dreaded methotrexate along with it, as I did with the Enbrel. I hope the Remicade gives me the energy and the ability to bike to the ends of the earth with my boys, to hike up the hills and share Andrew’s wonder at the mountains vying with the sky. I hope not to be merely well-ish, but well. But I am quite content with being well-ish, even with being only sometimes well-ish. There’s a lot of world to show my son and share with my son when I’m out of bed and in the land of well-ish.

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