July 18, 2007 at 3:49 pm (Uncategorized)

I am sorry for disappearing. It’s been several days since I’ve written, and although I’ve felt a few twinges of guilt for having slipped away, I have mostly been dreading my return to the blog. I wish I could report that my absence has only meant that I’ve been vacationing, or that my days have been filled with editors and agents commissioning fascinating projects, or that I’ve been just too darn busy chasing my adorable three-year-old son around the garden with the hose and making multi-layered mud pies. I wish I could tell you I’ve just been lazy. I wish I could tell you that I started up a side business painting street signs, or weaving hemp, or dusting computer keyboards. Any fictional version feels better than the truth. Where have I been? I have been sick, and I have been depressed. These days, Chronic Town is feeling like no place to call home. On the face of it, not much has changed since my last entry. The roads in Chronic Town have the same potholes, the same blind corners that remain unsigned. Maybe the difference is that I’m tired of the same subdivision of medication, testing, bad news, more medication, more testing, more bad news.

As you’ll recall, after what was declared my “miraculous” initial response to Remicade – the infusion anti-TNF drug that impedes my body’s over-reactive inflammatory immune processes – I’ve been heading south of miraculous. Because my various sarcoidosis markers (liver levels and ACE blood levels) continued to rise, and also because I was experiencing heart palpitations reminiscent of my earliest and worst manifestations of cardiac sarcoidosis, and finally because my joint pain was becoming again more pronounced, my doctors decided to give me a “short” prednisone “burst” (raising my daily dose from 10 mg. to 40 mg.) and then double my Remicade dose. Given that all my various sarcoidosis markers responded to the “burst” of prednisone by worsening, my two-day burst on 40 mg. is now a week long and counting.

In the midst of my sarcoidosis flaring, my blood sugar has taken this opportunity to join the fray. “Enough, already with the prednisone!” it screamed, loud and clear, announcing diabetic levels on Thursday. After staving off Type II diabetes for over three long years of prednisone therapy, I find it ironic and depressing that my body has chosen this moment to become insulin resistant. Luckily, my blood sugar levels improved somewhat on the latest round of testing, so I can temporarily forgo taking new diabetes medications, as long as I vigilantly monitor my blood sugar at home four times a day with a glucometer. It does appear, though, that I might have stress-fractured a bone in my foot. (Prednisone thins bones, and even though I’m fifteen pounds lighter on my Weight Watchers diet, I am still carrying too much weight on my already-taxed skeleton.) I should know later this afternoon if I need to get a cast. I also have another sinus infection, along with a nasty case of thrush in my mouth from prednisone and elevated blood sugar. It feels almost gratuitous to mention that Montana’s one hundred degree weather is wreaking havoc on my already sarcoidosis-wreaked joints. Every joint, knob, and protuberance on my body seems to have swollen to twice its normal size. Moving in the thick, hot air feels like placing a heating pad on a twisted ankle. And did I mention that my massive doses of prednisone make me feel like the world is ending?

My news is bad, but I know it’s not that bad. Things could always be worse. (If I have to have a cast on my leg in this scorching weather, they will be worse.) I know full well that probably over half the people reading this with sarcoidosis are sicker than I am. So, my reluctance to communicate my crummy health report doesn’t stem (wholly) from self-pity. I don’t think my news is too terrible to pronounce. No, I’ve been hiding because – I realized today after enforcing some thinking on myself – I feel like I’ve failed. After all the ups and down of my medical treatment, I wanted to be miraculously cured by Remicade – not just for me and my small family, but for everyone else stuck with a permanent address in Chronic Town. I wanted you far-flung readers to have a bit of good news, maybe a morsel of information to take back to your doctors. (“I’ve heard some good things about this Remicade and I’d like to try it.”) I wanted my flesh-and-blood friends to have good news. They’ve already shared the doom and gloom cycle of my life. I’m tired of them worrying about me or wondering how they could make my life a little easier. Mostly, I want to be well (or at least trending in a better direction) for my family. Jay worries himself sick about me; Andrew can’t believe I leave the house not to see a doctor; my mother thinks I’m dead if she doesn’t talk to me every few days. I am, at my deepest core, a people pleaser. And lately, I have wanted to work my art via stunningly good medical news. I certainly did not plan on having to sigh and deliver the latest round of bad test results and new symptoms. I am the kind of person who can’t turn down a request to contribute to the bake sale or to host a political fundraiser; imagine what it does to my sense of self to do the equivalent of crap on the all the PTA cakes or rob the candidate’s kitty? That’s what it feels like these days to answer honestly the question, “So, how are you doing?…Oh, but I thought you were doing better…I thought there was a new drug…”

My people-pleasing motives aren’t entirely pure, however. Even though I rationally know it not to be true, I nevertheless believe that I am in some way responsible for the downward trend in my health. If only I could try harder, or eat better, or sleep more, or take my pills with more water, or have ridden the stationary bike for longer, or have ridden the stationary bike for shorter. If only. Then I would have continued on my ray-of-sunshine path to perfect health. Somehow, somewhere, someway, this is my fault, I tell myself, before quickly un-telling myself this.

Relapsing. Un-remitting. Getting sicker. These are the narrow paths of Chronic Town I hate the most. Confronting bad news after a brief interlude of hope is more bitter than simply plodding along with constant sorrow. Odd, how a little hope can poison you to living. I wish I had kept my first miraculous Remicade story to myself, because then I wouldn’t have to field questions from myself or others about whether or not I’ve “overdone it” and made myself sick, or whether there’s not something more I can be doing to improve myself.

But today, I’ve come out of the alleys and back onto the main street of Chronic Town because hiding from myself and from everyone else takes too much effort. I’m here. My foot hurts. It’s hotter than hell outside, but this is where I live, so I should venture back into the summer light. I’m sorry to bring bad news, and sorrier for having avoided delivering it. Disappearing never helps anyone in Chronic Town. Especially when it’s time for a bake sale.

1 Comment

  1. Paul said,


    Hang in there – you’ve just given me the most entertaining image.

    The prednisone effected woman hobbles out (on one crutch) into the street of an old style western cartoon town. a tumble weed rolls across the street in front of her. she pauses, looks around, then screams out to a small crowd of onlookers “RUN FOR YOUR LIFE _ THE SARC GANG IS BACK” then collapses.

    Life in Chronic Town’s like that.

    Have a great day

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