Sorry State

March 27, 2007 at 12:01 pm (Uncategorized)

The other night, Andrew fell out of bed and whacked the side of his head. The thud of his skull hitting the wood floor was enough to send me running to him from my own bed across the hall, even though it took him a few seconds to fully awake and start screaming.

I immediately scooped him up and held him close to me. In an effort to reassure him, I told him that he had just fallen out of bed. As I lowered my mouth down to his little ear to kiss away the ouchy, he stopped crying long enough to stutter, “I’m sorry, Mommy.”

I’m sorry? For falling out of bed? When I heard this, it felt like my heart skipped a beat or two. Of course, I immediately told him that he had absolutely nothing to feel sorry about. “Falling out bed is an accident. It’s nothing to be sorry about,” I said a few times. But throwing an excess of words at my whimpering three-year old did nothing to warm my own blood or slow my heart.

As a parent, there is nothing more dreadful than realizing that your actions do indeed speak louder than words, that your child is learning how to approach the world and his place in it not by the careful speeches you deliver but by the unthinking ways you yourself behave. And Andrew’s mournful apology was a perfect example of behaving exactly like his mother.

I probably say I’m sorry on average a half dozen times a day. This over-abundance of apology might make sense if I made a hobby of offending people, firing a rifle in my yard, deliberately backing into cars in parking lots, crank-calling businesses, pulling the tails off cats, kicking people in the knees, or other such behavior. But I think, on the whole, I’m a relatively decent human being, who usually does nothing worse than tell the occasional white lie, get grumpy with my family, or miss an appointment from time to time.

Yet I am always apologizing. I am sorry for not being more involved with friends’ organizations, sorry if our babysitter has to unload the dishwasher, sorry if my parents come to help, sorry if I’m upset and need to talk to Jay on the phone, sorry if I don’t feel up to cooking dinner, sorry if I need to go to the doctor, sorry that I’ve gained weight, sorry if Jay has to do the laundry, sorry I don’t write more on the blog, sorry our house is cluttered, sorry that I need to nap, sorry the cat loses her collar, sorry I don’t have the energy to teach a writing class, sorry I’m not reading more serious books, sorry my hands hurt and I complain about it, sorry I don’t return e-mails promptly, sorry I don’t feel like watching television most evenings, sorry I don’t write thank you notes more promptly and call people back right away, sorry I spend every spare dime on expensive medical care, sorry my cabinets look like a hurricane passed through them, sorry I’m worrying people, sorry that I don’t take Andrew hiking, sorry I need to have expensive dental work performed, sorry that I need help caring for my son, sorry there is a film of ickiness on the bottom of the trash can that I don’t feel capable of cleaning, sorry that Andrew has bratty spells, sorry I don’t always recycle every bit of newspaper or cardboard, sorry I can’t have a real job right now. I am so sorry– for anything not perfect (large or small) in my world.

In a rational moment I can see what this is: bullshit.

I doubt I’m the only person in chronic town who spends half my life apologizing for being sick. And I also doubt I’m the only mother in the world who twists herself into a pretzel for not being able to do it all – all the time. But I’ve been an over-apologizer my entire life, long before I became ill and long before I became a mother. Getting chronic sarcoidosis and a kid has only made my natural tendencies excessive. What Andrew did the night he bonked his head and then apologized for it was hold up a mirror. If I rolled out of bed, or rolled my car, I, too, would first and foremost say I was sorry.

The fact that I always say I’m sorry is no one’s fault but my own. And before I curl myself up into a little ball of self-pity at how sad it is that I feel so sorry, I need to remember that what underlies my omnipresent apologies is ego. Somehow, getting really sick and almost simultaneously having a child, hasn’t yet made it abundantly clear to me that I am not the center of the universe, that I don’t have the power to live forever and live perfectly – if only I would just try harder, try better, and stop making mistakes. For me to stop saying I’m sorry all the time, I need first to accept the imperfections in my health, my career, my relationships, and my home. Or maybe that’s too much to bite off at one time. Perhaps I should first accept that not all imperfections in my health, my career, my relationships, and my home are my fault. But this will entail that I let go of some control, let go of some fear, let go of some pieces of myself.

When Andrew told me he was sorry for falling out of bed, my first inclination was to tell him how sorry I was for always making him sorry. But that’s no place to start. Next time, I will tell him that people fall out of bed. And there’s not much to do about it except kiss the sore spots and love one another – bumps and all.

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Methotrexate Daze

March 21, 2007 at 5:32 pm (Uncategorized)

 

 

heads12.gifI know I haven’t written in a while. I also haven’t done a lot of other things, like work, walk, cook a meal, or be awake for more than three hours at a stretch. I’ve had a headache that felt like someone buried a battle ax in my skull, along with nausea, full body aches, frequent trips to the bathroom, and an overwhelming desire to lay perfectly still and move as little as possible. It’s methotrexate days!

 

Treating autoimmune diseases like sarcoidosis is a funny business. True, there are some folks who believe that an underlying infection is the cause of the disease, but most conventional theories and treatments see the body’s own immune system as the problem. For now, I’m following the old school approach for treating my disease, which relies heavily on curtailing my supposedly overactive immune system. After prednisone (a corticosteroid that acts both as a massive anti-inflammatory and an immune suppressant) failed to control the sarcoidosis, my doctors switched me to a new combination of more powerful immune suppressants – methotrexate and Enbrel.

 

Methotrexate is a cytoxin – literally “cell killer” – which is also used as a chemotherapy agent. Of course, I take a much lower dose than a cancer patient, but it still wreaks havoc on me. I seem to have gotten every possible side effect – headache, nausea, vomiting, diarrhea, malaise, and tiredness. I take my weekly dose on Monday, which in the five short weeks I’ve been on this new regimen, has become a dreaded day. Sometimes, I feel better by Tuesday, but during other weeks, the side effects are more severe and linger for days. This is one of those weeks when I’m only just feeling somewhat human just in time for the next Monday and the next dose of methotrexate.

 

I sometimes wish the process of taking methotrexate was more difficult. I know that sounds odd, but I would find it easier if I had to inject the methotrexate, like I do the Enbrel, or even go to the hospital to have it infused, as I would if I were taking Remicaid. Somehow, this would make the multitude of unpleasant side effects feel more logical and more expected. But instead, I simply swallow small, oblong, pale yellow pills. They are at worst bland looking, and, truth be told, they are almost pretty in a way reminiscent of Easter eggs.

 

Because of the treatment path I have chosen to follow, I need to take the methotrexate. I want to stay the course, to see if I can knock the sarcoidosis out of my heart, lungs, and joints for good. I have realized that I have two ways to approach my Mondays: with dread or with hope. My instinct is to dread the ticking of the clock bringing me closer to Monday and my pills of doom. I suppose this is human nature at its animal core. We avoid pain; no mouse in any science experiment goes gleefully towards an electric shock. But this week’s methotrexate regimen was a debacle. The migraine I got after taking my pale yellow pills became so awful that I eventually disobeyed the doctors and took a migraine medication – even though that could have caused a heart attack because of all my cardiac problems. I lay motionless in bed, resenting every minute of drug-induced suffering, which has only left me feeling grouchy and violated. So, I am contemplating a new approach -one suggested by Barb, my massage healer, who has much wisdom and experience dealing with illness. What if I sought to see the methotrexate as a healing force in my body? This doesn’t mean that it won’t be any less unpleasant physically, but maybe the psychic toll of being beaten by my treatment would be easier. Instead of resenting the side effects, I could try to see every wave of nausea and every ripple of pain in my head as signs that these pills are enabling my body to heal itself. In other words, the discomfort means they are working.

 

I am not, by nature, a positive thinker or a successful visualizer. In fact, I’ve often discredited that stuff as New Age hooey. But after three years of chronic and debilitating sarcoidosis, I am willing to try to change my nature. After all, I have intellectually rationalized ingesting a poison, so I should also be able to come to terms emotionally with the poison’s work in my body. Besides, it’s not like I can do much else besides think on a Monday. I might as well make those thoughts a little hopeful.

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Seuss-syphean

March 13, 2007 at 5:05 pm (Uncategorized)

Until recently, I haven’t been much a Dr. Seuss fan. Perhaps this is because it hasn’t been until recently that Andrew has grown old enough for Dr. Seuss’ narrative books. As a baby and toddler, he loved the Seuss word-play books, like Fox in Socks and Mr. Brown Can Moo, Can You?, which, after eighteen or nineteen consecutive readings, made me question my sanity. There are only so many one-syllable rhymes your brain can process before it either short-circuits or starts thinking up lewd versions of the rhyme. I mean, you don’t have to be the poet laureate to come up with some pretty naughty phrases, especially in the -ox/-ocks family of words.

Imagine my surprise, then, when I cracked open Dr. Seuss’ books for older children – like The 500 Hats of Bartholomew Cubbins, Horton Hatches the Egg, The Lorax, and The King’s Stilts. In addition to the pervasive Seussian rhyme, these books had both a plot and a point. The Lorax, for instance, with its tale of the Onceler and his rapacious greed, bears an overt environmental message, while Horton, in which the eponymous elephant won’t break his promise to sit on a bird’s egg, is the story of constancy rewarded. “Not bad,” I thought.

Then, a couple of weeks ago, Andrew and Jay returned from their weekly pilgrimage to the library with fresh Seuss-fare: I Had Trouble in Getting to Solla Sollew. Initially published in 1965, this funny-sounding little book packs a powerful message, so you’ll have to bear with my re-telling. Despite its cute, fuzzy hybrid animal characters, Solla Sollew has the feel of an epic (albeit one for kids). The book opens with the nameless hero of indeterminate species falling (literally) on hard times. Not watching where he’s going, he falls off a ledge and breaks his tail. Once trouble has found him, it won’t let him go. He is beset first by a Quilligan Quail, who bites his already-wounded tail, and then by a Skritz and a Skrink.

“There I was, all completely surrounded by trouble,” our hero recounts, “when a chap rumbled up in a One-Wheeler Wubble.” The chap, it turns out, is bound for the “City of Solla Sollew,” a mythical land “on the banks of the beautiful River Wah-Hoo,” whose main draw is that “they never have troubles, at least very few.” Our narrator joins the Solla Sollew-bound wayfarer on a journey that rivals the Iliad or the Odyssey for its adventures and obstacles. Although the chap with the One-Wheeler Wubble makes it sound like Solla Sollew is just around the corner, days and then months pass en route. The camel that pulls the Wubble “got sick and started to bubble,” so our narrator must pull the cart – and the camel – up a narrow mountain pass. He leaves the sick camel, driver, and cart with a doctor, and plods on, alone, for Solla Sollew. As he walks along (the bus to the promised land is out of order, too), he gets caught in a flood, then pressed into military service by the General Genghis Kahn Schmitz, and narrowly avoids getting eaten by Perilous Poozers. He escapes into some type of subterranean sewer network, and finally emerges at the gates of Solla Sollew. He skips up to the guard, anticipating a trouble-free life, only to learn that he can’t enter the city because there is a Key-Slapping Slippard barring access to the one and only door to Solla Sollew. The guard says, “I’m leaving Solla Sollew…And I’m off to the city Boola Boo Ball…where they never have any troubles! No troubles at all!”

Our furry hero is about to go along to seek the new promised land Boola Boo Ball, but instead “did some quick thinking inside of my head” and decides to go home. “I know I’ll have troubles,” he muses. “I’ll, maybe, get stung. I’ll always have troubles. I’ll, maybe, get bit by that Green-Headed Quail on the place where I sit.” Rather than avoid his troubles, though, he opts to confront them. “But I’ve bought a big bat. I’m all ready, you see. Now my troubles are going to have troubles with me.” The book closes with a picture of the narrator swinging his bat as he approaches his old nemeses.

The way my life has been going lately, I’ll take inspiration wherever I can find it, even from a kids’ book.  And I’m not ashamed to say that Solla Sollew was helpful. I have much to be thankful for – a loving and supportive family, a healthy and precocious child, a comfortable house in a comfortable town, access to health care, and so on. But I’d still say that I have my share of troubles – a chronic disease that has taken a nasty turn toward debilitating me along with messing with my most vital of organs, my heart. Because I have been plagued with a sinus infection for the past few days (courtesy of said precocious child), I could not take my weekly dose of Enbrel (the super-expensive injectable biologic agent that shuts down part of my immune system – hopefully the part causing my sarcoidosis). Consequently, I awoke this morning and spent a few minutes wondering if I could get out of bed. I suppose it’s good to know that the Enbrel does actually reduce my joint pain when I’m able to take it, but it was nonetheless depressing to experience such acute pain just laying in bed. I did eventually make it upright and hobbled downstairs. After consuming about a gallon of coffee, I discovered that the arthritis in my hands makes typing a problem. Since I’m a writer and all, it felt doubly unfair. It seems as though having to worry about keeling over from a heart attack from my cardiac sarcoidosis should have been trouble enough.  But, no, I also have my own Quilligan Quail gnawing on my bones.

I don’t mean to overdramatize myself.  Read the morning paper and you’ll find an overabundance of trouble. Today’s New York Times had a story about hospice centers for dying newborn babies. The main opposition leader in Zimbabwe was jailed and beaten; increasing numbers of homeowners are unable to make their monthly mortgage payments; Iraqi Shiites on their way to Karbala continue to suffer violence from Sunni extremists; families who lost loved ones in the Bronx fire mourn. And on. And on.

No one likes trouble. Not the narrator of Solla Sollew, not me, not you. We don’t like experiencing trouble, and we don’t like witnessing others’ troubles. Trouble is at best uncomfortable, and at worst, lethal. The existence of trouble in the universe is like a hard smack against the mouth. It feels unjust, unfair, indeed unnatural. We are all beset by Skritzes and Skrinks. So it is only right that we, too, should want to leave behind the biting bastards and strike out for the rich new land of Solla Sollew. Isn’t there some clause in the Constitution that outlaws trouble? Isn’t it against the codes of man and God to have a baby and hold him for twenty minutes before he dies from some rare and debilitating genetic disease? And what of all of us sarcoidosis sufferers? We certainly never signed on the dotted line for this disease.

Which is why the prospect of a quick and permanent fix – a Solla Sollew – is so appealing.  Both to receive and, apparently, to offer.  Everywhere we turn, someone like the chap on the One-Wheeler Wubble, is promising us a carefree trip to a version of Solla Sollew. “Climb aboard,” he calls down to us, “and I’ll show you the way to a life without troubles.” Nowhere are the whispers of the Solla Sollew-touts louder than in the realm of health.  As I’m sure anyone who has spent a day or two in Chronic Town will testify, people love to come knocking on your door, eager to take you to Solla Sollew. There are the folks who want you to see a naturopath. “If you just take these herbs, or this potion, you’ll be in Solla Sollew in no time,” they tell you. Or maybe they tell you to eschew dairy, eggs, meat, wheat, eggplant, and strawberries, as someone did to me yesterday, assuring me this was a guaranteed cure for my arthritis. Or maybe they’ll send you to the fanciest hospital in the world.   Maybe they want you to visualize perfect health, imagine your disease waning.  Everyone knows someone who took a wonder drug, or swore off a wonder drug, and was cured.  Three easy steps, right this way.

As appealing as this vision might seem, though, I also find it chimeric, and ultimately diminishing, as it so often seems to come with the implicit judgment that if you do not magically cure yourself, it’s your fault, you burden, you.  And yet illness, suffering, and death (troubles, in other words) were once viewed as central to the human condition: “Cursed is the ground because of you; through painful toil you will eat of it all the days of your life… until you return to the ground, since from it you were taken; for dust you are and to dust you will return,” proclaims Genesis.  But these days, dwelling on our imminent return to dust isn’t the norm, no matter how religious we as a nation claim to be. You’d think such a morbid turn of mind would be standard, given our soldiers getting exploded in Iraq, an epidemic of plague-like proportions going on in Africa, warnings of the bird flu circulating with spring air, and childhood cancer rates skyrocketing – to name just a few of the troubles surrounding us. Instead, the focus always seems to be not on how to deal with troubles, but rather on how to avoid them altogether.

We can spend our lives plotting a path to Solla Sollew. We think there must be a quick way through the sickness and the muck to a shining city on the hill – and isn’t it worth a few trials and tribulations to get there? What’s a little drowning and warfare when it comes to a trouble-free existence? The fact is, though, that I think Dr. Seuss was right. Once you make it to Solla Sollew, there’ll be a problem with a lock. And the touts will be there to lure you on to the next promised land. You could waste your life, trotting around trying to avoid the things that get you down, that beat you up, that make you sad. Better to realize, “I’ll always have troubles,” and start searching for a bat.

I don’t think kindly old Dr. Seuss meant for us to wallop everything that holds us up or causes us trouble. Instead, I think he meant for our hero to take hold of his life again, to stop chasing castles in the air and turn instead to the land at his feet. God knows, it’s hard for me to do. I spent three hours on the Internet last night, reading up on all the “miracle cures” available for rheumatoid arthritis. There are days when I just want to stay in bed and not test the aching soles of my feet on the floor, nor push my swollen fingers to make words on the keyboard. It’s always much easier for me to ruminate on the unfairness of my current existence, instead of figuring out ways to be a creative, engaged individual within the circumstances of my disease. But, I will always have troubles. If the sarcoidosis remits, there will be some new critter to vex me – some Quilligan Quail or Skritz or bellowing Genghis Kahn Schmitz. Now is the time to grab the bat and deal with it.

There’s another story about perseverance I should mention here to round out my thoughts on Solla Sollew. This one isn’t just myth-like in its message, but a genuine myth. The story of Sisyphus, a Greek king who tried to trick the Gods into avoiding death, was probably meant as a cautionary tale, because for his hubris, Sisyphus was punished in the underworld by having to roll an enormous boulder up a hill throughout eternity. Some might see this as damnation, indeed. But for me, rolling the same stupid rock up the same stupid hill feels like an apt metaphor for life itself – the ultimate representation of mortality. It’s our lot. Maybe that’s why there are so many scriptures and legends and myths and stories and kids’ books about it. Our troubles aren’t going anywhere. Just keep pushing and carry a big stick. And a little rhyming never hurts either.

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Morning Margaritas

March 9, 2007 at 4:34 pm (Uncategorized)

My day began with Andrew brandishing a sippy cup in my face at 7:30.  “Why did we ever teach that child to walk?” I thought through the fog of sleep in my eyes.

“I brought you something to drink, Mommy,” he said, bringing the cup to within grazing distance of my nose.

“Hmmm,” I said back, fervently wishing that he would just go away for another few minutes.  Mornings are when I am most likely to trade my only son for uninterrupted sleep until noon.

“It’s your very own margarita,” he said, giving the cup another wave.

The thought of a nice tart and salty margarita woke me up almost as much as the smell of coffee brewing downstairs.   Not that I could drink it, even if it were a more appropriate hour and even if Andrew’s cup actually had alcohol in it instead if twelve-hour old tepid rice milk.  One of the medications I am taking for my sarcoidosis absolutely precludes drinking alcohol of any kind; plus, my liver is so whacked out from the disease that I’d just as soon not add an additional burden to its workload.

Andrew looked especially proud at having remembered such a complicated and odd word – margarita.  He also got a hearty laugh out of his mother before noon, which is a feat in and of itself.  I was amazed he could even recall the word that he heard just a couple of times over a week ago, when Jay had a string of stressful days at work and wanted to have a drink before dinner and discovered that we were out of beer and wine.  At the time Andrew had pestered Jay with, “What’s that, Daddy?  What’s that?” and “Can I have some?”  We explained that margaritas, which are made out of tequila, are a grown-up beverage, one he’ll have to wait another eighteen years to legally consume.  Jay’s job pressure eased up, and we forgot all about margaritas – until this morning.

Andrew’s sudden recollection of margaritas made me wonder about memory and what “gets stuck” in my child’s mind in place of other facts I deem more important.  For instance, he simply cannot remember to bring his plate from the table to the sink (a grand distance of three feet), while he does memorize every Thomas the Tank Engine character after one viewing – and then recites the list of the seven billion engines he doesn’t own.  He can expertly drive the electric John Deere tractor his Uncle Ken chose for him (which involves steering, pressing the gas pedal, and sometimes even shifting in to lower gears and  reversing), but pleads helplessness when it comes time to putting on his underwear. “I can’t do it,” he’ll whine, and then shove both legs into one leg hole and fall over in the middle of the room.   The kid has a monumental vocabulary, with words like “fuming,” “dehydrated,” “impertinent,” and “furious” part of his everyday vocabulary.  Unfortunately, a single utterance of an obscenity from one of his parents adheres to his memory like a fly to flypaper.  In fact, he went through a (mercifully) short phase of combining all his known bad words into one long string: “Shitgoddamnitcrap.”

Apparently alcoholic beverages – and beverages in general – have some staying power in his noggin, along with all those creepy trains and cuss words.  He’s mentioned the mysterious “tequilia” (as he pronounces it) more than once, has offered me mock Diet Coke, and told friends that “Daddy drinks beer and wine, but Mommy only drinks coffee.”   He’ll bring me cups “full of wine.”  I find this doubly ironic since Jay and I are practically teetotalers at home now, but our son seems to be well on his way to being a pretend alcoholic.  Perhaps he has a future career as a sommelier?

Pondering the mysteries of memory and the mind – the conundrum of what sticks and what doesn’t – isn’t only suitable with toddlers.  Thinking about the morning margarita emerging from the dredges of my boy’s mind, made me realize that I’m not too far distant from Andrew with my knack of remembering what I shouldn’t.  The “healthy” and “reasonable” thoughts and patterns are the ones that slide off me most easily.  For example, I gripe about how little energy I have, and then stay up late watching “The Wire” re-runs with Jay; I tell my writing students to put their own work first, and then shunt off my proposals to the bottom of my to-do list (behind vacuuming the crud out of the silverware drawer and ironing Jay’s work shirts).  I know I need to take better care of myself – lose some weight, try to begin exercising with my arthritic joints, get plenty of rest and naps – but I seem to always run around the house at 400 miles an hour, eating a cookie with one hand and guzzling coffee with the other, accomplishing remarkably little.

Here’s my conclusion, where I’m supposed to vow to live a little cleaner, strive to get the virtuous things to stick to my mind and myself.  But I’m too tired and achy today to make such pronouncements.  I was up past midnight with a new cough, awoke early with hand-delivered mock mixed drinks, and my joints ache with arthritis.  So I say, a little coffee never hurt anyone.  If only I could have a margarita to go along with it.

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Drug Dealers

March 6, 2007 at 3:20 pm (Uncategorized)

For the past several weeks, I have been shooting up. Here’s how it works. On Monday mornings, I pad down to the refrigerator, take out a vial of clear liquid, find a quiet spot away from the ever-observant eyes of my three-year-old, swab an area on my thigh with an alcohol pad, jam a syringe into my leg at a forty-five degree, slowly push the liquid into my leg – even though it burns and I have to fight my instinct to pull out the needle – and then drop the needle into the sharps container on my bathroom sink. It’s all so very hard core.

My new habit isn’t a cheap one. A month’s supply cost over $1,500 – or about $375 per dose. My hunch is that it would be more economical to inject heroin or crack cocaine or even liquid platinum for that matter. Unfortunately, even though injectables from the opiate family might make me feel better about my illness and the havoc it is wreaking on my joints, they likely won’t actually stop the inflammation that is causing all of my problems. So, for the time being, I’m sticking with (no pun intended) my Enbrel.

Unfortunately, PharmaCare, our prescription drug insurer, is less enamored with Enbrel than either my doctors or I. In fact, I found out today that PharmaCare will definitely not cover any of the medication’s prohibitive costs. Nor will the state agency responsible for overseeing PharmaCare and other insurance plans, force the company to review its ruling. This means that if I want to take the drug, I have to pay for it. Luckily, Amgen Pharmaceuticals, the company that manufactures Enbrel, offers a patient assistance program that will knock a couple of hundred bucks off the out of pocket expense. This means the drug will cost us only about $1,200 per month.

PharmaCare, in its infinite wisdom, has determined that since Enbrel is FDA-approved only for rheumatoid arthritis, juvenile rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, and plaque psoriasis, and is just used “off-label” for sarcoidosis and other auto-immune diseases, then prescribing the drug for sarcoidosis is an “investigative” use – and hence one they don’t have to pay for. It doesn’t matter that three doctors, one of whom is an M.D./Ph.D. specializing in sarcoidosis, have written testimonials on my behalf declaring that Enbrel represents my best shot at living a normal life and halting sarcoidosis’ steady progression through my body. I could have every doctor in the American Medical Association deluge PharmaCare with letters. It wouldn’t matter – because some bureaucrat, sitting in a cubicle under flickering fluorescent lights and chewing on a pencil before tucking it behind her ear, has typed my disease and Enbrel into some database and the computer has responded with the message, “NOT APPROVED.” God could come down and bellow in the bureaucrat’s ear. But God doesn’t make decisions for PharmaCare; the bureaucrat and the computer are their own divinity. And they hath spoken. NOT APPROVED.

I know that I am not alone in this situation. Having an insurance company or a prescription drug plan deny needed medications or treatments is so common these days that it’s becoming cliche. This doesn’t leave me feeling any less angry or powerless. Instead, I feel like PharmaCare is rubbing dirt in my face, or perhaps salt in my wounds. It’s bad enough to have a chronic, debilitating, and sometimes fatal disease; but it’s even worse to have this disease bankrupt you. Isn’t this precisely why we pay such exorbitant costs to have health insurance in the first place, so that we don’t have to choose between getting the medication we need and living hand to mouth?

I also know that I am lucky. This is the first major insurance obstacle I’ve encountered in nearly three years of illness. New West, my health insurance company, has paid for me to see specialists across the country and to have myriad exorbitantly expensive diagnostic tests performed. And, even if we now choose to subsume the out-of-pocket costs of Enbrel, we still have a safety net to catch us – some savings, as well as a heck of a lot of space on the old credit cards (and a host of extremely generous family members) – which is more than many other people have.

There are plenty of folks who will tell you that we in America have the best health care system in the world. I suppose we do if you are wealthy and can pay for whatever you want no matter the cost. Yes, if you are a Kuwaiti sheik with cancer, then you would likely jet off to the good ol’ US of A for treatment. But what about the rest of us? The Census Bureau estimates that there are 40 million uninsured Americans, including ten million children. These folks can’t even appeal to have their Enbrel paid for – or their chemotherapy, X-rays, strep tests, mammograms, or immunizations, for that matter. They simply have no insurance. It’s even more embarrassing as a citizen of this potentially great nation to realize that the problem doesn’t end there. According to Health Affairs, a policy journal, an additional sixteen million Americans between the ages of nineteen and sixty-four are underinsured, which means that they will forego needed medical care because of inadequate coverage.

I’m sure there numerous nits to pick with the figures I have cited above; I’m sure some of the uninsured are young, healthy people who choose to bank extra income rather than pay for health insurance. We can quibble down the numbers, but the truth remains that an astonishing number of people in this country lack access to basic health care. This realization makes me feel a whole lot less sorry for myself, but I’m still angry. And scared and worried about paying for Enbrel. There’s not much else we can do, though. “We’ll figure it out,” Jay has told me, as I rant and rave and curse the ground the loathsome PharmaCare employees tread. Beating my breast and complaining won’t change the reality of the health care system we inhabit. Yes, we will figure it out. But what about them? When will the bigwigs from Congress and the HMOs figure it out?

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