Thanks to my family, I have an interesting relationship with medicine, both the kind with a small and a capital "m".
In one corner, we have my (dead, workaholic) father, whose response to any and all corporal malfunction was to (a) ignore it and soldier on or (b) have something prescribed or excised and then soldier on. In the other, we have my (dead, alcoholic) mother, who was basically the same, only she thought the "(b)" part of the equation needlessly complicated.
Dad died nominally of liver failure but really of systemic decline from years and years of refusing to deal with his Crohn's disease at anything deeper than a symptomatic level. (He did not drink alcohol.)
Mom died nominally of cervical cancer that had metastasized to her lungs, but really of her outrageous refusal to tend to even the basics of personal wellness (i.e., the annual pap). (She drank like a fish.)
Given my illustrious family history, it's kind of miraculous that I'm hobbling along as well as I am with my own disease. Like all chronic illness, Crohn's is an up and down proposition: unlike something discrete (a cold, say, or a broken arm), it flares up on its own schedule, brought on at times by something you didn't know could trigger it (hormonal birth control), at times by something you did, but neglected, forgot (antibiotics, stress, Aunt Flo'). Managing it takes a sometimes delicate combination of vigilant self-care and willingness to accept outside help.
I have gotten much better at accepting help in the form of other people stepping up when I'm too tired or sick to deal. I am still wicked stubborn, however, about help in the form of medicine, mainly because the medicines I have to choose from range from bad (mesalamine, or as I like to call it "the hair loss drug") to worse (purinethol, or as I like to call it, "the cancer drug that also causes hair loss"). In between is the pill I both love and dread the most: prednisone.
Yes, prednisone. King-daddy of the synthetic hormones, that magic steroidal elixir responsible for Jerry Lewis's good looks a ways back. It stops the immune response, makes you feel strong like bull and blows you up like a human balloon. When I was released from my 11-day vacation at Cedars Sinai, I was on 60mg of the stuff a day. I put on 10 pounds in a day and a half. My good friend, Lily, had to bring me granny panties three sizes larger to accommodate my mystical instant tubbiness.
Prednisone is also the one drug that can hoist me out of a flare. I have a reserve prescription I keep around the house just in case. I've been eyeing it more frequently recently, weighing the costs of not only ballooning but turning my bones to butter and leaving myself open to whatever opportunistic bacterium or virus wants to wander my way. It's a deal with the devil in many ways: it works amazingly well, but each time you use it, you lessen its potential effectiveness the next, until you're taking Jerry Lewis doses.
This flare? It's different than the others (I've had two since my initial onset in October of 2002). I'm not losing weight at the frightening rate I have in the past. There's no blood or diarrhea this time, either, although the room-clearing gas has commenced (hooray!). Mostly, I'm just dealing with some low-grade fever, aching joints and a level of fatigue that forces me down earlier and earlier. Hardly the stuff of hour-long prime-time medical drama.
The thing is, there's no way of knowing if I can pull myself out of this with diet and rest or if I need the big guns. The Specific Carbohydrate Diet, whose miracle Crohn's-curing powers I've written of before (here and here), is good, but even its major proponent always said to work with medicine when you need it.
That's what I'm trying to determine now: need. How well do I need to feel, and how soon? How wise would it be to wait, and for how long? If I go the meds route, should I go on the long-term meds, too, or trust the combination of fanatical adherence to the diet and the launching pad of prednisone to do the trick?
This is an unusually personal post for me, I know. I suppose it's the closest I'll come to a public admission of addictive behavior (at least, I hope so). But here it is: I'm addicted to whatever is the opposite of change. Like my parents before me, I'd rather ignore what's right under my nose, currently, a thermometer that reads 100.2ºF, than deal with it.
I know why they did what they did now. They were afraid. Afraid of addressing the root cause of their poor health. Afraid of being called out as human beings trying to avoid the emotions of all human beings by hiding behind work, or in a bottle. Afraid that if they went in for help, they'd be told the inevitable: what you are doing, the way you are treating yourself, will kill you.
The sad thing is, it did anyway.
Fortunately, I've got my own number. It connects me to my G.I. doctor over at Cedars, whom I'll speak to in the morning about going back on the prednisone, and perhaps something longer-term afterwards, until I'm sure I can fly on my own power.
My. Own. Power.
xxx c
TAGS: chronic illness, Crohn's disease, Crohn's flare, relapse, medication, prednisone