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.

1 Comment

  1. Nancy said,

    This past winter, I got slammed with every “bug” to hit the Eastern Shore and sarted my neverending battle with sinus infections. I had drippy noses, sneezing and colds in the past but this sinus infection thing seems a sarcoid treat. The worse thing for me was the antibiotics I took, one after another to try and knock it out. I turned into a raving, paranoid idiot, pissed at everything and everyone – threw a fit at the drop of anything – my braids were too tight, I had been chewing gum for 12 hours and drank 4 pots of coffee and I might be as irritable. The antibiotics just made me mad – don’t rule out another sample of the cure starting out tougher then the sickness. Thinking of you – don’t break anything that means anything to you – I am still missing my yellow mixing bowl I threw – not very mature – Nan

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