In the intervening years, I've been incredibly lucky: lucky, first of all, to have a great doctor in Greeley, Michelle Stoltz, who diagnosed it as Behcet's almost right away, since I've since read horror stories about people who went years before being properly diagnosed. Lucky, too, when my first rheumatologist left the medical profession altogether and shipped me off to another rheumatologist in Denver.
The doctor I saw there, Kathryn Hobbs, immediately nixed my original rheumatologist's treatment option: basically, a steady diet of prednisone that had caused me to gain a good fifteen pounds and barely kept a lid on the symptoms (and often didn't work at all). I could have wept for joy, I hated the prednisone so much.
I was also very lucky that Dr. Hobbs was willing to battle my health insurance company to get me on Humira, an anti-TNF drug formulated for people with rheumatoid arthritis...but she said it showed a lot of promise for people with Behcet's, and eventually she convinced the insurer to pony up. And almost immediately, the symptoms were gone. Totally under control. Lucky, indeed.
I was also lucky that when I moved and switched insurance plans, the new insurer agreed to cover the Humira without much of a fight. The complete lack of symptoms for years on end almost had me thinking that maybe the disease had gone away--maybe it had never been real?
Several students I knew had pink eye during spring semester, so I figured that might be the problem. But since Behcet's can involve eye inflammation (which--luckily--I'd never had), I figured I'd better get it checked out. And sure enough, I had uveitis, inflammation of the uvea that's a very typical symptom of Behcet's.
Fortunately, it responded well to the prednisone eye drops prescribed by my oddball opthomologist, who's a dead ringer for Groucho Marx, both in looks and demeanor. Did the drops for several weeks, tapered off of them, eye felt fine.
Went in last Friday for a follow-up appointment, only to have Groucho tell me that the inflammation is back, and in both eyes this time. Back to the prednisone eyedrops.
Autoimmune diseases are very strange; I think if I'd ever had the slightest interest in/talent for medicine, it would be a fascinating specialty. You sort of have to befriend your disease--get to know its rhythms and its perverse sense of humor, its fondness for irony and the long con. My frenemy Behcet's doesn't like to be locked out. Bar a door, and it finds a cracked window. Seal the window, and it slides through a crack in the siding. Deterred on one front, it mounts a campaign from the opposite direction.
I'm not writing this to seek pity or even sympathy; as I've said, I've been incredibly lucky at every turn of this journey.
There's a quote from writer Janet Burroway that I have stuck on a mirror in my bedroom:
Why, I say, should I ever have bitterly blamed [my body] for such trifles as I have blamed it for: for having too much flesh in this spot, too little muscle in that, for producing this wrinkle, that sag, that gray hair, or this texture? Dear body! My dear body! It has gone about its incessant business with very little thanks.For me, it's a useful reminder that for every small, visible thing that our bodies do wrong, they're doing countless invisible things right, and continually. I marvel at both the stability and the capriciousness of the human body.
But the capriciousness--that's the issue. Of course, autoimmune disease mirrors life in that way: our sense of control is purely imaginary, a ruse to suppress the unsettling reality that at any moment something could happen to blow everything sky-high.
And occasionally (very occasionally, the older you get, I'm discovering), the body surprises us by doing something extraordinarily good that we didn't know it was capable of doing, too: in my pathetic case, running a couple of miles on the treadmill.
I'm trying to avoid using the rhetoric of betrayal around the Behcet's, and I hope to avoid using it around aging in general. But our bodies do fail us in one profound way: like the portrait of Dorian Gray, they evince all the decrepitude while the selves they contain go on feeling like they're twenty-eight. At least, that's the age I feel like I still am in my head. How about you?
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N. B.: My friend Jane has written far more eloquently about the strange dichotomies of the self and the body here and here.