Three weeks ago, I woke up sick. Well, it’s more like I woke up and could barely open my eyes. Every time I tried, my whole body screamed to shut them again. It was the morning after Dave arrived and we all took the train in to Manhattan together, me with my glasses on, screwing my eyes shut as every burst or brilliant sunshine assaulted the train carriage. I kept asking Stuart if my eyes looked puffy – they felt puffy.
By about 11 AM, the right eye strode ahead in the race to drive me crazy, with a painful scratched feeling developing under my upper eyelid. I called my wonderful eye doctor and told him about it, and he referred me to a specialist whose name I’ll praise to the high heavens for eternity. I made a 3PM appointment with Dr. Rubenstein and settled into my long painful day. When I got to Dr. Rubenstein’s, he took about ONE look at my right eye and said, “that’s too violent of a reaction for such a tiny little scratch.”
Then he said, “do you have Mediterranean blood?”
I told him my father was Greek.
“Right, okay. There might be some heriditary conditions, we’ll talk about it in a minute.”
What proceeded is this. My eye, overreacting to the tiny corneal abrasion I’d probably given myself carelessly removing my contacts, had developed its own special case of iritis. I have an overly dramatic EYE! It figures. There was no real, external reason for me to develop iritis, which is an inflammation of the iris, but I had sort of given it to myself. My body thought there was something to fight in my eye, and in the great tradition of Don Quixote, started tilting at all sorts of imaginary windmills and getting itself really worked up in the process. That night, Dr. Rubenstein was unsure that it was definitely iritis, so he wanted to clear up any infections that might have been brought on by the abrasion. He sent me home with incredibly powerful antibiotic drops, and told me to come back in, first thing in the morning. I spent twenty miserable minutes trying to hail a cab at 47th and Park and I would have cried all the way home but my eye hurt too much.
He also told me some other things. He said that if it was, in fact, iritis, that it called into question the possibility of something more serious – namely, the reason my body was attacking itself. He explained why he’d asked about my heritage: because of something called HLA-B27. It’s, as far as I can tell, some sort of protein that some people have, which attaches itself to the exterior of your cells and confuses the body, and your immune system, about the difference between foreign and native. It’s like a con-man taxi driver, giving false direction to get your cells to bear arms against fellow cells. HLA-B27 is being found positive in a lot of people that have a whole host of auto-immune problems ranging from Lupus to rhuematoid athritis to Behcet’s sydrome.
Dr. Rubenstein walked us through it again the next morning, when I brought Stuart in to listen with me and absorb the information. It was definitely iritis, he said that morning, and finally gave me some anti-inflammatory drops to calm the iris. He also gave me some minimal dilation drops, to exercise my pupil by moving it around twice daily, firstly to keep my iris away from other parts of my eye it might infect, and secondly so that the pupil didn’t get forced closed by the inflamed iris and get stuck to the back of my eye. (Let me just stress the freakiness of this – GETTING MY PUPIL STUCK TO THE BACK OF MY EYE was a concern for me recently, if you can believe it.) The drugs worked miracles and in three days everything felt normal except for the insane amount of daily eye drop administration.
But the HLA-B27 thing is still on our minds. The doctor stressed to me, repeatedly, that even if I took a blood test for HLA and discovered I was positive for it, it didn’t mean I’d get any of those auto-immune diseases. “It’s corrollary,” he said, “not cause-and-effect. We don’t know how many people are wandering around, perfectly healthy, who are positive for it. We don’t know about them because they never have any auto-immune problems so we’ve never tested their blood for HLA.” The way he explained it, there’s simply a high percentage of people who, being diagnosed with auto-immune diseases, are also being found positive for HLA. It’s like the contrapositives I studied so dutifully for the LSAT. And it’s confusing.
He told me, too, that a lot of doctors would, in his charming language, pooh-pooh the need to test for HLA. I told him that my GP was a very practical woman and that she might scoff at any test for which no resulting action could be taken – if I test for HLA and I’m positive, all I get is a handshake and a higher statistical likelihood of developing an auto-immune disease. Dr. Rubenstein, who’d by this time been patiently consulting with me for two hours over two days about something that technically didn’t have anything to do with my eye, said something I’ll never forget. “If your GP scoffs at the test,” he said quietly, “find another GP. I’m a cancer survivor and I don’t believe in doctors dismissing your concerns.”
Stuart and I were quiet for just one beat. The doctor continued to assure me that there was no reason at all that I should worry or panic – if this was just a freak isolated case of iritis, so be it. But to take the blood test, and find out I had a higher likelihood of getting auto-immune diseases, would only serve to make me more aware of those diseases and symptoms and be on the lookout. “I want you,” he finished, “to have the information that will empower you to do what you need to do to take care of yourself, anyone who tells you not to worry or research isn’t a good doctor.” Please permit me to be childish for just one brief interlude and say that my doctor, he’s a badass, he could totally kick your doctor’s ass.
As you can tell by how incredibly long this post is, I’ve been thinking a lot about these things. I did talk to my GP and as I predicted, she scoffed a little at administering a test that would lead me nowhere, but she’ll conduct it if I insist. Which I will. Meanwhile, I’m trying to ignore any and all calls to hypochondria or forehead-crinkling worry (I leave that to both mothers), and I’m trying to lessen my fear of all those scary auto-immune diseases by singing them to the tune of a certain Mary Poppins song…
Ankylosing Spondylitis, Rhuematoid Arrtthhhritis! Lupus, Excema a bit and don’t forget Psorrriiiasis!
So that’s what happened with my eye. Do you remember the part about the PUPIL getting STUCK to the BACK OF MY EYE? I KNOW. For all the uncertainty and weirdness about what may or not be a protein I have which may or may not lead me to get auto-immune diseases, the REALLY weird thing would have been to get a stuck PUPIL.
So, the moral of this story (which you can’t react to because my comments are still broken ha ha ha, send email if you have any stories about HLA or if you just want to trash me for singing a song about a disease where your spine fuses together) is always go to the eye doctor when something feels wrong with your eye because they’ve got other disease possibilities on offer there. Two for the price of one!