What’s In A Name?

February 28, 2007 at 10:44 am (Uncategorized)

When I departed for Philadelphia a week ago, I left behind me at home my husband Jay and my son, Andrew. Except Andrew wasn’t responding to his given name. “I’m still Rocky,” he would correct me when I made the mistake of calling him Andrew. It wasn’t just me who was finding this confusing. “I’m not Andrew anymore,” he told anyone we encountered, including random strangers at the park. “My name is Rocky.”

Because I pride myself on being the type of mother who won’t blow a gasket about things like a toddler’s name change, I made my farewells to Rocky and Jay and boarded the airplane. But when I returned home, Andrew/Rocky informed me that I could now call him Dexter—after a portly pig in the Fox book series he particularly likes. It was wonderful to be back with my family, even though the smallest member of it alternated between telling me to call him Dexter and then cooing about how much he missed me. It was a little hard to keep up.

Then, the night before last, Andrew/Rocky/Dexter and I read Dr. Seuss’s The King’s Stilts for the first time. My son was captivated by the hero of the story, a brave young boy by the name of Eric, who saves the day (and the mythical kingdom of Ninn) by outwitting the evil Lord Droon by returning to King Bertim his beloved bright red stilts. We closed the book, and I kissed Andrew good night. “My name is now Eric,” he said. “Good Lord,” I thought. “This is beginning to sound like a disassociate disorder.”

In truth, I don’t think Andrew/Rocky/Dexter/Eric suffers from any type of disorder, disassociate or otherwise. I love the fact that my son is creative, that instead of watching television, he would rather spin a tale about when he was a “little baby,” or when he was an astronaut, or about the other adventures he concocts in his mind. The kid clearly doesn’t suffer from limited horizons. This morning, for instance, he told me that we had to hurry through breakfast so that we could bring his stuffed horse to the airport to make his “4:44 flight back to Dayton, Ohio.” When I asked him obtusely why horse needed to go to Dayton, Andrew told me with barely retrained impatience that “horse forgot his iPod there.” Of course. How silly of me.

I marvel at Andrew’s imaginative capacity to move between worlds. This morning, as we cuddled together in bed, he made a rabbit den in the covers, and told me that he had gone to the pet store yesterday and bought a baby brother bunny and a baby duck. The other day, he said he was a baby camel and asked if I would keep him as a pet. He’s constantly fighting pitched battles against creatures from his books. Any mundane object becomes a magical toy in his hand. He simply has to sit on the couch to fly off to another city—and hopefully, he’ll soon soar to more exotic destinations than Dayton, Ohio. He’s no different than other children, I know, but he is my child, so of course I think he is different—and amazing.

I envy Andrew’s ability to take on and cast off identities as easily as I slip on a scarf. Since I am all grown-up and affixed more firmly to the adult world of paying the bills, making the beds, and preparing supper, it’s a little harder for me to decide for a day that I will be someone else. But I wish I could, especially when the someone else I would choose to shrug off like a coat that really doesn’t fit is the woman who spends so much of her time sick.

When I came back from Philadelphia, it took me a couple of days to shake the strands of medicine and sickness from me. This wasn’t because I received particularly dire news there. Really, the visit went well. The most important test, the cardiac MRI, showed that the sarcoidosis is not currently active in my heart, even though the disease is active in my joints, liver, and spleen right now. Both the cardiologist and the pulmonologist who oversee my treatment felt that I stood a good chance of pushing the disease back with the combination of prednisone, methotrexate, and Enbrel I’m currently taking. So, while I didn’t get a clean bill of health, I certainly could have received worse news. It’s much better to have sarcoidosis inflaming your joints than interfering with your heart’s ability to beat properly, right?

But even though my news was neutral, being a patient means donning a mindset just as surely as Andrew does when he becomes spunky little Eric. In Philadelphia, I focus on extracting every little bit of information I can from the various doctors I see. I write extensive lists of questions; note every symptom I’ve experienced since my last appointment; problematize every drug they propose giving me and then problematize them not giving me more drugs; I question whether the results from diagnostic tests such as the MRI can be fully trusted. In short, I am a colossal pain in the ass, focused entirely on myself and my needs as a physical human being who is decidedly not interested in dying or becoming sicker.

Then, presto, thanks to the wonders of modern air travel, I am home in the arms of my husband, and my little boy is pressing his flushed face against mine and telling me ten thousand things about what happened when I was gone. He is carrying an enormous bouquet of roses and daisies and is bellowing in my ear that he is now Dexter and that he made me a banner and that he missed me and that we should go get hot dogs for lunch. This is where I want to be, and this is who I want to be. But it is exceedingly difficult to become just his Mom again, to let go of the tightness and the fear and the hardness I need to carry with me in Philadelphia. I can’t speed between selves like he can. Instead, I feel like I have to bully the medical patient self out of me.

But, I don’t really have any choice about the matter do I? I can shake, shake, shake the cobwebs of illness off me, and maybe Andrew will notice a few, still clinging to me. “And what of it?” I’m able to ask myself on good days. If I can keep track of the Andrew underneath Rocky, Dexter, and Eric, he too can remember that his Mom hasn’t disappeared on the days when she has to stay in bed. He’s a bright kid, after all. I need to trust he can get it.

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Are Cheese Steak Sandwiches a Weight Watchers Friendly Food?

February 19, 2007 at 9:56 pm (Uncategorized)

“It’s sad saying goodbye to Mommy,” Andrew said this evening.  The tears made his giant brown eyes look even more liquid than usual.

“I know, sweetie,” I told him, and then I rehashed the myriad ways that me leaving for a few days was actually going to be a lot of fun for him.  After all, his father is going to spoil him rotten (so far, I’ve overheard at least four planned outings that involved either whipped cream, sugar, ice cream, or all three); his grandparents are arriving on Wednesday and will spoil him rotten; Andrea, his buddy and babysitter knows I am leaving and will likely spoil him rotten; at this rate, it won’t surprise me to learn that Kate our cat has baked him fish cupcakes or some such thing.

Truthfully, though, I didn’t feel much like a cheerleader tonight.  I leave early in the morning for a medical trip to Philadelphia.  For the first time ever, I am going without Andrew or Jay.  I’m lucky that my good friend Amy is meeting me in the City of Brotherly Love to help me navigate the unnavigable streets and to provide moral support at my doctors’ visits.  I wasn’t supposed to return to Philadelphia until next month, but with all my new symptoms and with all my new medications, my doctor told me to come back sooner.  Plus, how long can a gal go without having contrast dye injected into her veins and spending an afternoon in an MRI tube?

I know it’s a good decision to leave Andrew at home.  My extra-complicated liver biopsy gave him plenty of opportunities to see his mother sick, enfeebled, and in a hospital.  He doesn’t need to worry about my health any more than he already does.  (Yesterday he ordered me “back to bed” when I was up and around in the kitchen.)  Also, the little fellow is over three years old and has only been away from me for one night.  I think it’s an important step in his development to separate from me a little.  Still, I’m going to miss him, and he’s going to miss me.

Part of why I like being with him during these doctor-fests is that he keeps me sane and focused on what is important (him), instead of falling into a pit of anxiety about what might happen or what could happen to me.  Doctors, as I’m sure most of you readers know, have a unique ability to make things sound dire, and then tell you to go home and stop worrying.  But it would be selfish to drag Andrew across the country for moral support.  Still, I think I’ll be crying more than he will be tomorrow when I board the plane.

I’ve been making these pilgrimages to the specialists for so long that I don’t actually get nervous anymore.  I simply dread the whole process – the scheduled testing, the unscheduled testing they always decide to do at the last minute, the same set of questions from different doctors, the aforementioned dire news, and then the aforementioned pseudo-soothing words.  I’m thankful I won’t be alone.  But I will miss my boys.  Jay knows just when to hug me, when to leave me alone, and when to get Starbucks, in addition to rarely getting lost.  Andrew knows how to get excited about a delivery truck at the hotel, the thought of a dip in the pool, and junk food from a restaurant.

I hope I get good news.  But, as I’ve said before, it’s difficult to discern what actually is good news when it comes to this disease.  So, I will hope instead that Amy and I have a good time between appointments, that the doctors are compassionate and knowledgeable, that they agree I am on the right course in terms of medication, that we only get lost three or four times a day, and that I don’t gain back the paltry ten pounds I’ve lost on cheese steak sandwiches (one of God’s grander creations).  And, of course, that Andrew misses me just enough, but not too much that he can’t enjoy the cat’s kitchen creations.

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Mom and Dad

February 15, 2007 at 2:05 pm (Uncategorized)

The other night when Jay and I were taking turns trying to coax Andrew to sleep (which is only slightly more difficult than extracting blood from a stone, passing a camel through the eye of a needle, or avoiding the eight million pounds of Valentine’s Day candy in our house), Andrew started complaining that his leg hurt. This is the third time he’s mentioned his leg, and he was insistent that it was painful. He clutched at his little calf and whimpered. Jay and I tried giving the ache magic kisses; we rubbed the sore spot; and I even put on one of Mommy’s magic, invisible Band-Aids, which, as everyone knows, are laced with super special healing powers. Nothing worked.

Eventually, Andrew dropped into sleep out of sheer exhaustion – the only way he ever falls asleep. I, however, lay awake long into the night, worrying about Andrew’s leg. Since he’d complained about it before, and since I couldn’t see any bruising or injury, I did what I do best – imagined the worst. “Oh. My. God,” I said to Jay, who I had to poke back into consciousness around two A.M. “I think he has bone cancer.” My husband has many wonderful qualities, not the least of which is his ability to make me realize that most of the horror stories I conjure in my head in the wee hours of the night are just that – stories an anxious mind creates, not anything akin to reality.

Still, during the time between when my imagination convinced me that my three-year-old son had a terminal illness and when my husband convinced me that I was being insane, I genuinely suffered. The thought of anything hurting Andrew – especially something so awful as disease – made my stomach writhe and my pulse accelerate. By the time I nudged Jay, I was panting and covered in a cold sweat.

As I waited for my blood pressure to return to normal, I had an epiphany. Even the thought of harm to my son was excruciating. Imagine how my parents feel, knowing that their child is sick with a chronic, and potentially fatal, illness which requires her to take medications with a host of frightening side effects. I am sure that my parents did just as Jay and I do when I was a baby and a toddler and a child: they pushed any thoughts of illness or tragedy or trauma visiting me or any of their children into the dark and hidden folds of their minds, where they thought they could smother these fears into never occurring. “That can’t happen,” they probably whispered to themselves, just as I do, when I can’t prevent myself from thinking about Andrew getting sick or dying or suffering in any way. “That won’t happen. I won’t let that happen.”

Illness can make you into a narcissist. Illness requires that you focus on your symptoms, on the state of your health. Since so much of the practice of medicine is subjective (“How do you feel today?”; “Does this new treatment make you feel better?”), you must pay some attention to your body and its workings. But it can become difficult to close that inward eye that attends to your own needs. Once this eye has taken stock of your health, it tends to turn its unblinking gaze outside and start assessing the whole world by its own solipsistic terms. Without intending to, you’ll find yourself making everyone and everything just another player in the great drama of your illness. And that’s a shitty thing to do.

I know how difficult it is for me to have sarcoidosis. I’m usually pretty good at recognizing the toll this disease takes on my husband and my son. After all, I can see the visible evidence on their faces – Jay’s grey mask of fatigue or Andrew’s paralyzing fear at his mother in a wheelchair. I also try my best to be aware of the countless ways our family and friends help us deal with my illness. But sometimes I lose sight of just how much my health worries those who care about us. Especially my parents.

Throughout this blog, I’ve tried to pay tribute to the generosity of our friends and family. We’ve receive financial help, a car, hot dinners, gourmet meals in a box from a far-away friend, and prayers. People send me books they think will inspire me; other folks go along to doctors’ appointments with me or trips to the emergency room when Jay is unavailable. No one, though, has done more for us than my Mom and Dad. I’m afraid to even list all that they have done, because I’m pretty sure I’ll have forgotten something. What they have done – ranging from spending weeks at our house helping out with Andrew when I’m sick, to scrubbing our bathrooms, to accompanying us to Denver, New York and Philadelphia to see specialists, to making these medical trips fun and not scary for Andrew, to bringing me flowers after surgery, to holding my head while I vomit from new medication, to buying me clothes and a warm coat in my new, post-prednisone size so that I don’t feel loathsome and fat, to framing pictures and hanging them on the walls of our new house so that it feels like home, to taking in our beloved dog, to packing and unpacking boxes in three different moves, to cheering me up when I need to be cheered up, to letting me cry when I need to cry, to telling off a doctor who isn’t treating me right, to researching my disease, to bullying me into taking better care of myself – is keep us sane.

They have walked with us every step of the way. And that certainly has made things immeasurably easier for us. But I have no doubt that being so much a part of the illness of their child has terrified, saddened, and angered them. We can’t take this away from them. All we can do is thank them and learn from them. If there comes a day when Andrew needs more than an invisible bandage, we’ll know what to do.

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I’m Afraid

February 13, 2007 at 6:20 pm (Uncategorized)

It doesn’t seem so long ago that I was first diagnosed with sarcoidosis. Out of the swirls of the anesthesia fog, the surgeon’s pinched cheeks and beaky nose slowly came into focus. “Good news,” he said. “It’s as we thought. The biopsy showed it was just sarcoidosis, not lymphoma.” He dissolved back into fog as suddenly as he had materialized, and I fell back into the dreamless post-surgery sleep that feels more like death than dozing. But I was relieved. “It’s not lymphoma. Not lymphoma. Not. Lymphoma.”

The fear I felt before the biopsy on my enlarged lymph nodes was like nothing I’d ever experienced. I had been in some pretty frightening situations before this. But now I had a child – a three-month old dumpling of a boy with dark, red hair and a smile so pure it was almost inhuman. Just as I was getting to know my son Andrew, to comprehend that I would have the privilege of sharing his life, I was told that I might have lymphoma. Cancer. The fear I felt was like a razor. It cut into my guts and my brain. The fear completely took me over. I could not settle myself. I could not push away the thought of cancer eating me away and then devouring my relationship with my son. Finally I had done something right. I had become a mother. “And now you’re going to die,” the fear said, in a sing-song voice. “Now, you’re going to die.”

“It’s just this weird disease called sarcoidosis,” we told friends and family after the biopsy. Yet every time we delivered the good news that I didn’t have cancer, we had to glance down at a sheet of paper on which I had scrawled the name of my new illness. Sarcoidosis. Our tongues tripped on this odd word. We should have paid attention to our mouths fumbling the diagnosis. Maybe it was some kind of sign, some physical manifestation that it wouldn’t be smooth sailing on glassy seas. But we didn’t. “Yeah. Sarcoidosis. We never heard of it either,” we said. “But apparently, it’s not that big of a deal. Over half of the cases just spontaneously remit. I won’t need medication. I’ll be fine.”

I recovered from the surgery and from the terrible fear. Suddenly becoming conscious of my own demise had sharpened my senses of the every day things around me. The wooden floors of our bedroom gleamed in the sunlight as though they were alive. Books and movies brought me to tears, as did simply watching my son learn more about the world. I felt like I had been given a new lease on life, that I had dodged the proverbial bullet, had gotten a second chance.

A few weeks after the surgery, I started to experience weird symptoms. My left leg would tingle as though my foot was falling asleep; then it would go numb. I tripped over that leg constantly and one time even fell down a flight of stairs. Then the left side of my face went numb. I ignored these omens, telling myself I was simply having a late reaction to the anesthesia or to childbirth. Then, my heart began behaving oddly. I would have episodes where it was beating so quickly I thought it was going to jump out of my chest. The room would reel, and the palpitations would leave me covered in a clammy sweat, my stomach roiling in nausea.

“Call the doctor,” my husband Jay told me. So I did, fully expecting he would tell me to stop being such a hypochondriac and to get on with my life. Instead he ordered a battery of tests that showed abnormal heart rhythms and likely neurosarcoidosis. Suddenly, no one was telling me that sarcoidosis was no big deal – at worst a nuisance I was lucky to have instead of something more serious. Now I was sent off to a hospital that specializes in sarcoidosis. And my life in Chronic Town began.

Three years later, that fear I felt when I thought I might have lymphoma has returned. I wonder why, after so many months of dire diagnoses and difficult medications, I am suddenly seized by the fear again. I’ll try to run away from it by shoving my nose into a book or watching a mindless movie, but I can still feel it moving inside me, fluttering in my guts like a fetus demanding to be born. What is this fear? Maybe if I can break it down into its constituent parts, I can understand it. Maybe I can ease it away.

I’m afraid of this disease.
I’ve been struggling with it for over three years, but all of a sudden, I feel defenseless. Maybe it’s because, for most of my time in Chronic Town, I’ve been able to spend my days in denial. While the Freudians might take issue with denying the reality of life, I think it’s actually much healthier not to dwell too much on the disease. I have a toddler and a husband and a life I want to live. Sickness keeps me from being a good mother, partner, writer, and human being. So I have deliberately chosen not to give sickness too much room in my life.

Until recently, I think I’ve been quite good at denying sarcoidosis. One way has been shunt my fear into anger. For instance, I’ve taken such an enormous dose of prednisone for so long that I’ve gained a significant amount of weight. Rather than brood about my disease, I’ve brooded about my thighs. I’ve gotten angry at being fat; I’ve gotten angry at the doctors who prescribed the drug; I’ve gotten angry at myself for eating a slice of chocolate cake to comfort myself. All that anger has been a colossal distraction. In a good way.  I’ve also distracted myself with the business of living. I pushed myself to work out at the gym several times a week; I taught writing classes; I started this blog; I wrote articles for work. I made myself so physically tired, I forgot about being sick.

But, after what feels like the shortest remission in the history of the world, my sarcoidosis has come back with a vengeance and has wreaked havoc on my joints. Now just getting around the house is difficult and painful. I can’t imagine spinning the elliptical machine at the gym or hiking up the steep streets around our house. I feel so crummy I can’t summon the energy to teach or to do much writing. Suddenly, at the exact moment when I feel much sicker than ever, I also have much more time and emotional space to be sicker. Without my ardent busy-ness, I have wandered into a vast territory in which to become afraid, to ponder the incredible uncertainty of my life.

The new symptoms I have are much more debilitating on a day-to-day basis than any I’ve had before. I’ve never felt well since my diagnosis, and the cardiac symptoms of the past were certainly terrifying and upsetting, but they were intermittent. I was able to move and to exist like a normal human being. For the past couple of months – especially since the debacle of my liver biopsy of a few weeks ago and the attendant internal bleeding – I’ve had to spend at least a couple of hours each day in bed. Being in bed and, when I’m not in bed, hobbling around the house as if I have glass stuck in the bottom of my feet, doesn’t do much for my self-esteem. I feel like a failure. I feel like an invalid. I feel like I am being weak, that I am letting the disease win. At times, I feel like the all-too-happy-to-be-a- helpless-invalid-in-bed character played by Barbara Stanwyck in Sorry, Wrong Number. I loathe myself for needing so much rest, and just when I muster up enough compassion for myself to remember that I am actually pretty sick, it occurs to me that I no longer know myself. My own life has become unrecognizable to me. Who is this woman who is exhausted by simply being out of bed for much of the day? Where is the person who roamed the world, who hiked for twenty miles, who couldn’t wait for each day to start?

I’m afraid of my new medications. I haven’t yet been able to take Enbrel, the anti-TNF injectable protein, because my insurance company is still mired in the approval process. (I can’t say I blame them, since the drug will cost over $1,500 each month.) But I have gotten a packet of information about the medication and the host of horrible side effects and potential adverse reactions it carries with it: contracting multiple sclerosis and other demyelinating disorders; contracting lymphoma and other malignancies; congestive heart failure; rare blood disorders; serious, fatal infections; and so one. I’m already constantly sick because the prednisone is inhibiting my immune system, and now I’m supposed to take prednisone, methotrexate, and Enbrel? I feel as if I am being skinned, and then sent out into the world with the warning not to touch anything sharp. I am shutting down a key component of my immune response. This can’t be good for my health.

I am afraid of being afraid. People don’t respond well to other people’s fears. In our winner-take-all culture of combative capitalism and tough-love foreign policy, we don’t like to dwell on the weak amongst us. You aren’t supposed to be sick, and if you are sick, then you certainly are not supposed to talk about it and fear for your life. There’s plenty of sickness everywhere, but most folks focus on cancer, which I think is the defining disease of our era. More people in the world die every year of AIDS, malaria, and common intestinal problems that stem from not having access to clean drinking water. But the numbers don’t mean anything because cancer is all we talk about. We wear pink for breast cancer, or yellow for Lance Armstrong’s cancer organization; we walk for hope and bare our bald heads, but we don’t complain about having cancer and we definitely are not afraid of cancer. We’re all supposed to be mini-Lance Armstrongs. Upon his diagnosis of testicular cancer that metastasized to his brain and lungs, Lance didn’t turn into a fraidy-cat. He fought. And he won. Even when we talk about illness in our culture, we speak only of survivors. We don’t suffer from anything; rather we survive. We’re all survivors. Sometimes I wonder if we’re talking about the legions of the walking wounded or the contestants on that seminal reality-show, but does it matter? After all, we’re winning; we’re surviving.

But I’m afraid. I don’t feel like a Survivor. I’m afraid my un-trendy disease that no one has ever heard of is going to slowly eat away at me, one organ at a time. I’m afraid it will cause my heart to stop beating, or my liver to erode. I’m afraid it will infect my brain and send crossed signals. I’m afraid it will gnaw at my lung tissue until I gasp for air. I’m afraid I’m dying.

I’m afraid I will never come back from this illness.
Being ill sucks you in and changes the way you look at the world and your place in it. I have met other chronically ill people who wear their sickness as a badge of honor; they define themselves by being sick, and the symptoms of sickness give shape to their days. I think I am lucky to have a vibrant toddler around me, who reminds me that there is more to me than the medications I take and the physicians I must visit. Andrew demands that I roll around in the snow, whether or not I feel well. He forces me to leave the house and show him the world. We go to birthday parties, and we go ice-skating. We make cookies and eat the dough. But even with Andrew pushing me to be just another Mom, I can feel the sickness altering the way I think. With all the immuno-suppressants I take, I’m afraid of catching a cold and having it turn into a walloping, serious infection. I worry when I touch the handle of a shopping cart, when one of Andrew’s buddies has a runny nose. There is a piece of me that wants to stay home in a bubble of sanitized space. I am becoming afraid of the world.

I am afraid of what this illness is doing to my marriage.
No one could ask for a more supportive partner than Jay. I’ve read of other sick people who have horribly insensitive husbands or wives. In addition to being ill, they have to deal with an oaf telling them there is nothing really wrong with them or that they should stop complaining. They don’t get extra help around the house, nor do they get any love or sympathy. Jay, on the other hand, does every conceivable thing he can to make my life a little easier, ranging from taking over laundry duty to using his vacation days to spend at doctors’ offices to making sure I get sleep on the weekends to spending every available dollar on the best health care. And he never complains.

Still, there are times, like after my liver biopsy when I was ordered to stay flat in bed for a week, when I saw the glazed look in his eyes of raw fatigue and overwhelmed-ness. He has stuck by me, even though his once-independent wife has become unable to work, and his slim bride has ballooned into a different-looking woman. “None of that matters to me,” he has told me on numerous occasions. “I love you.” And I believe him. But I also know that it must fill his heart with sorrow and regret at how much I have changed and how much our lives together have changed.

My mind has turned to thoughts of winter, since we’ve had several inches of snow in the past couple of days. I remember an afternoon, long before Andrew was born, when Jay and I went for a hike in early spring in Lake Tahoe. We walked for ten miles in unbroken snow. The sun illuminated the snow so that it looked like we were traipsing through billions of individual crystals. It was one of the most beautiful things I’ve ever seen. We ate snow, and flopped in the snow, and watched the dog run in circles around us in the snow. And then, since we were in such good shape, we decided to run intervals up and down a snow-covered hill. Up to the top we’d sprint, and then, with the cold air searing our lungs, we’d lope down and do it all again. In the scope of the adventures Jay and I have had together – eating live grubs in Thailand, driving alone in the mountains near Burma, motorcycling around the Cambodian country-side, living for over a year on a tropical island, hiking in Vietnam, scuba diving on the Great Barrier Reef – dashing up a snowy hill in the Sierra Mountains shouldn’t seem so special. But it does, not least because it is so emblematic of the small things Jay and I have lost. We’ve been told not to have another child (at least not for a while); we’ve been told to curtail our travels so that we’re always close to a major medical center; we’ve been told we may not go live abroad right now. These are all big losses. How can Jay not mourn these things? And how can he not miss walking in the woods with me? How can he not miss the small things we shared every day?

I’m afraid of not really living. I’ve never been what you would call the most cautious person. An indicator of my character is that the first time I went downhill skiing, I couldn’t be bothered to learn how to slow down by carving turns as I progressed. Instead, I pointed my ski tips straight down the mountain. Even after I learned how to slow down and stop, I preferred the fastest, most heart-stopping path down.

I’ve made more than my share of stupid mistakes with my impulsive streak. I hiked and skied and cycled the cartilage in my knees into nothingness. I’ve contracted every bizarre travel illness you can get. I’ve ruined the productivity of many a day by staying up all night dancing. I used to choose cigarettes and coffee over food . I wrote too much bad poetry. I fell in love too quickly. I used to drink until the room spun around me – and then I’d start sipping the vodka instead of chugging it. Most of my wildness had passed by the time I met Jay, and I have no urge to return to it. But, still, I feel as though I must apportion my life now. Every thing I choose to do exacts some toll on my health. If I expend energy today, I’ll pay for it tomorrow. Always thinking about the consequences of every activity deadens me. To paraphrase T. S. Eliot, I must now measure out my life with coffee spoons.

I’m not sure where my fear will leave me. And I’m not sure how much space to accord it. I’m still partial to the strategy of my youth – point the skis down the mountain; don’t think; just go down, through the fear, without stopping. There’s wisdom to this notion of moving through fear to some other side. But I’m afraid of that other side. I wish I could follow the advice of Marie Curie and say, “Nothing in life is to be feared. It is only to be understood.” But I don’t believe that. I can taste the fear against my teeth. So instead, I’ll remind myself of the words of Eleanor Roosevelt that I have posted on the wall next to my computer: “You must do the things you think you cannot do.” And that includes being sick.

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I’ll Never Complain About Prednisone Again – At Least for A Day or Two

February 8, 2007 at 5:37 pm (Uncategorized)

Much of my life for the past couple of years has been shaped by sarcoidosis. I don’t like this fact, but it’s reality. My reality. I’ve gone from someone who couldn’t remember to keep my annual physical to someone who can fill out those doctors’ questionnaires in my sleep and administer my own neurological exam. I could probably start my own IV and run the MRI machine, too. When I was first diagnosed, it took me a good couple of months to memorize the name of my illness. “Sarc- something,” was how I thought of it until this odd word settled itself permanently in my brain. But now, my family and I have spent an inordinate amount of time and money tracking down “sarc-something” specialists, attending conferences about the disease, and researching it in libraries and on the Internet. I think I know as much about this disease as anyone else does, except for the “sarc-something” gurus. Not that this knowledge has translated into better health. Try as hard as we might, my husband and I end up making plans (or more likely canceling them) around my illness and the host of physical problems it carries with it.

Being sick involves losing control. You lose control of your time in the seemingly endless parade of doctors’ appointments and tests to monitor your condition. My calendar all too often looks like a fantasy of the American Medical Association with three or four appointments a week. Then, you end up losing hours, days, or weeks to the sickness itself. Sarcoidosis makes you feel lousy—always tired, achy, and ill. The medications to treat it inhibit your natural immune system, so you catch a host of ailments, ranging from colds to stomach flu to pneumonia, and every bug you encounter takes you twice as long to fight off. Sometimes even the tests to monitor your illness make you sick. I’m still reeling from the liver biopsy a couple of weeks ago. It was just another “routine procedure” that my body, weakened by both disease and treatment, struggled with. I ended up bleeding internally and in bed for over a week.

This week, I’ve been able to lose control in a whole new way. Since the illness – despite all the prednisone – seems to be having delusions of grandeur and wants to find new and exciting parts of my body to colonize (I feel like Congo after the arrival of the Belgians), I’ve started new medications. On Tuesday, I took my first dose of methotrexate, a drug first used as chemotherapy, which also works against autoimmune diseases. Then next week, since my tuberculosis test came back negative, I’ll start taking Enbrel (an injectible anti-TNF drug in the same family as Humira—the one I mentioned in my last posting. The doctors opted for Enbrel instead of Humira for me since Enbrel is faster-acting and also leaves your system more quickly if I need to stop taking it because I get an infection).

The flip side of losing control with an illness is convincing yourself that you haven’t. For me, rebelling against treatment helps me remember that there is a me apart from the drugs and the sickness. There is no such thing as a magic pill—a drug without side effects, and anyone who is seriously or chronically ill takes medications that, while therapeutic, have a host of lousy side effects. As I’m sure you’ve noticed, I have occupied most of my first three years as a sarcoidosis patient absolutely hating prednisone and what it has done to my body. I gained more than seventy pounds on that drug, and, while it seemed to control the sarcoidosis in my heart, it has done little to stall the disease’s progression in my joints and in other organs. I’ve always taken the prednisone as my doctors have directed, and I’ve always been grateful that it prevented the sarcoidosis from permanently damaging my heart. But this hasn’t stopped me from despising every one of those white pills. Really, it’s not all that different from an unhappy sap taking out his bad day on his wife, child, or dog. Sometimes, unhappiness and hate just needs a target. I’ve avoided beating my son or yelling at my husband. But I have hated prednisone.

That is, until Tuesday, when I took my first dose of methotrexate and spent most of the day thinking that if I moved a centimeter in bed—even by turning over—I would first barf all over the place and then instantly die. I was nauseous, and my head felt like it was being split in two. It was like the flu times forty. I am incredibly thankful that my parents encouraged me to stay with them when I started my new drugs, since my babysitter is in Hawaii and my husband is out of town for work. My parents have literally kept me alive for the past couple of days. Not only did my mother force me to choke down a few pretzels, but she and my father kept me from swimming away in a sea of hopelessness and helplessness.

“Crap,” I thought when I awoke this morning and the light still hurt my eyes and my stomach still felt like I was on a boat in a hurricane. “This makes the prednisone look good.” Prednisone did make me want to eat every minute I was awake, but at least it didn’t make me want to stop living too often.

I called the doctor this morning and made sure everything I was experiencing was normal. It is. Hopefully, I’ll get used to the methotrexate and then I won’t feel so bad when I take it every week. Hopefully. And hopefully the Enbrel won’t have a ton of side effects either – beyond, of course, the risk of multiple sclerosis, lymphoma, blood disorders, congestive heart failure, and life-threatening infections they warned me about. The real pisser is that I have to stay on the prednisone, along with the methotrexate and the Enbrel, until it’s clear the new drugs are working.

But, hey, who’s complaining? Not me. I’ve learned to be careful what you wish for in the realm of pharmacology. I asked to be given the opportunity to get off the prednisone. And now the thought prednisone by itself feels like a luxury—the halcyon days of yore when I had appetite and energy. Sigh. But at least I have a new kind of pill to hate.

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