At my first visit with a rheumatologist, I was steadfastly against being on methotrexate because, well, I like my wine and I’m not afraid to say so, and the idea of taking a chemo drug just felt wrong wrong wrong for me. Luckily, my rheumatologist was obliging and put me on hydroxychloroquine instead (with a biologic added to the mix later.)
I was quite happy and relieved at this decision, especially when the hydroxychloroquine didn’t cause any bad side effects for me.Since I am fair skinned as it is, I already smother my skin with SPF when it’s in the sun, so that didn’t feel like an inconvenience. But I soon discovered there is one drawback to being on hydroxychloroquine that really sticks in my eye…literally: visiting the ophthalmologist every six months.
Now, in the world of rheumatoid arthritis, and more specifically, the world of rheumatoid arthritis drugs, having to get my eyes checked out twice a year rates about as high on the problem scale as getting a paper cut.
And yet, I find it excruciatingly annoying. Every time my appointment starts to approach, I start sighing a lot, as though I’m being incredibly put out and inconvenienced. I barely register it on my list of to do’s for that week, preferring to think of it as a big black hole of aggravation.
I know this isn’t rational. I know it isn’t a big deal. It’s pathetically minor in the scope of all things, but I HATE having my eyes fiddled with. I don’t wear contacts or glasses and have so far managed to avoid developing dry eyes, so I don’t even use eye drops, all of which is a good thing since I am practically allergic to having anything put in my eyes.
Unfortunately for me, it must be done twice a year. This past Friday, I headed to my new ophthalmologist at Johns Hopkins to face the music, knowing that those nasty, crusty yellow eye drops were in my impending future.
I also knew I’d be lucky if that was the only test I had to endure. As an added genetic bonus, I inherited my mother’s strangely shaped optic nerve, which makes it look like I have glaucoma, even though I don’t. Every time I see a new ophthalmologist and they see my optic nerve, a feeding frenzy begins even though I assure them I don’t and tell them I’ve been tested about six times in the last two years alone for glaucoma. I never manage to convince them to leave it at that. They have a duty, and I have no choice but to submit.
So I sat there in the waiting room knowing this visit probably wouldn’t be any different, but hoping that it would be. I went in for my visual fields test, and then steeled myself for the series of nasty eye drops that turn my eyes to sand and the blue light that looks like it is going to poke me straight in the eye but doesn’t. I swear I can feel the adrenaline being released, which just can’t be good for my RA.
I made it through, though, and then sat out in the waiting room again, sunglasses on, while my eyes suddenly lost any coherence of vision and the world became a blurry mess. I’m not used to not being able to see, so I always find this unsettling and it puts me in a bad mood (and yes, I know that this will elicit little sympathy from most people who have been wearing glasses or contacts for years.)
30 minutes later, I was called back for another doctor to take a look at my eyes. And then the feeding frenzy began. I explained, he listened, but remained unconvinced. He left to go get yet another of the doctors to come and look at my optic nerve. At this point, the linings around my eyes were a gritty, stinging mess.
The next doctor came in, took a look around, and then introduced a new form of torture I’d never had done before: testing my cornea thickness. Do you know how this is done? They give you numbing eye drops, and then literally poke your corneas. AAAAAAHHHH! Super gross and completely freaky. It’s true it lasted only a few seconds, but there is something terrifying to me about having a pointy object held by another person stuck in my eyes. Call me crazy.
Finally, it was all over. I had made it through once again. I left with my marching orders to get photos taken of my eyes and to return in another six months to monitor for the hydroxychloroquine and to make sure, yet again, that my extra special optic nerve isn’t actually a sign of a developing eye disease.
Thankfully, at least, I could go home after the appointment and recover with a nice glass of wine.
Sara is the author of the blog, The Single Gal’s Guide to Rheumatoid Arthritis.