First off, I have been officially declared in remission! <Insert celebratory dance> This means that my disease is no longer actively rampaging through my system, though my treatments will continue as usual for the time being. (Recall that with pemphigoid, treatments are continued even after the disease is quiet, and then very slowly withdrawn, so as not to exacerbate anything.)
I must admit that the declaration - which took place at Dr. Foster’s office in Boston - felt rather anticlimactic. I had gone into that appointment hoping to discuss strategies for how to cope with my eyes, because the current predicament I was beginning to depress me. I was happy that they were less red, to be sure, but every day seemed to revolve around putting in eye drops. Wake up, put drops in, wash face, drops, brush teeth, drops, figure out what to wear, drops, drops, drops... even my sleep was interrupted by needing to wake up to put more gel or ointment in my eyes. It was common for me to go through an entire 70-count box of eye drops (.6 ml each) in about three days and at the time of my doctor’s appointment, my right hand was actually sore from squeezing stuff into my eyes every few minutes.
You know it’s not a good sign when you start developing an overuse injury as a result of your eye drop habits...
These were strange times to be sure, I’d tell myself, but once I was better, everything could be normal again. I could get back to working, driving, studying. I could be a doctor and hopefully turn this freak occurrence into something positive, using it as motivation to help others during their struggles with some aspect of their health. The problem was, by Dr. Foster’s account, this was better. Honestly, I was more frightened hearing that, than I was when I was diagnosed.
Anyway, after freaking out and then finally processing this news, I got back down to the business doing battle with my eyes. I’m pretty sure Dr. Foster thinks I’m exhausting, poor man, because I’m constantly asking questions, pestering him about treatments, and generally pushing to make my eyes the best they can be. Part of the problem may lie in that I’m literally, his youngest pemphigoid patient. According to another physician Dr. Foster works with, all the others are significantly older and of those, most are retired. Obviously, getting sick at any age is a horrible thing, but to have this happen to you during your retirement years is, in my mind, much less disruptive than having it happen to you in your early 20s, when you’re just trying to get started out in life.
So perhaps this is why Dr. Foster thinks it’s odd that I can’t accept things as easily as his others patients. “You were a very severe case,” he says, expecting me to content with the large improvement I’ve experienced. But I’m not. Because what I’m fixated on is the quality of life I’ll experience while in remission. Unlike his other patients, I’m not retired, and I’m facing 60 or so more years with this disease. If I want those years to be productive, it’s imperative that my eyes be as close to normal as they can be.
The result of this line of thought was that I went back up to Boston and basically insisted that that my upper puncta be occluded. For those who are unfamiliar with ocular anatomy, the lacrimal puncta are essentially little holes at the inner corner of your upper and lower eyelids that allow your tears to drain from your eyes. You have four, in total. Two on each eye. For people with reduced tear production, stopping up these little canals traps your tears so they can’t just uselessly drain away down your nose. This can be done with tiny little silicone plugs, or with a surgical procedure that shuts little hole completely. There is some discussion about whether or not trapping all your tears on the surface of your eye is entirely good for you, as this is thought to perhaps increase the amount of inflammatory junk your eye is exposed to since now nothing can drain from your eye. I assume that this is why Dr. Foster didn’t suggest this on his own. But I decided that felt that complete occlusion (having all four puncta closed up) was something that I wanted to try, since it had the potential to significantly improve my symptoms. Prior to this, I’d had only the bottom puncta (one on each eye) plugged.
So this leads me to my next piece of news: thanks to the procedure, I can now last a whole hour without eye drops! Granted, sometimes it’s less than that. Later in the day, or if the air is particularly dry, then I can maybe only go fifteen minutes. But on the whole, I’ve experienced a vast improvement from the endless eye drop cycle of before and so I have no regrets about pushing Dr. Foster to do the procedure. To put things in perspective, here are a few things that I can do now, without having to stop to “top my eyes off."
- take a shower
- bake muffins
- wash a load of dishes
- sit through a job interview
I know, I know. What a glamorous life I lead.
Annoyingly, the plugs sometimes fall out (I’ve had to replace the new ones twice already) and terrifyingly, it’s possible for them to get “lost” and cause infection. The latter really freaks me out, so I’m considering asking that my puncta just be surgically (and permanently) closed. But for now, I’m just happy to feel like my life has some greater meaning beyond incessantly pouring stuff into my eyes.
In other news, over the last few months I’ve been studying for the MCAT and generally just trying to get things lined up for applications to medical school. I’ll admit that sometimes I get really nervous about it - mostly because I worry about what admissions committees will think when they see that I haven’t done much over the past year besides some volunteering... But I’m lucky enough to have lots of people around me to basically tell me to shut up and calm down when I start to get really anxious.
And finally, if things go according to plan, I’m going to return to work soon! I’m in talks to begin working with a very nice woman who does research in autoimmunity and I think the word “excited” just doesn’t cover how I feel about all this. I don’t want to say any more, so as not to jinx anything, but fingers crossed that I’ll have lots of new and exciting developments to tell you about in my next installment!
Please address any complaints regarding this post to the 50 mg of Benadryl currently in my system. I'm writing this in the midst of a treatment and it's pretty much a miracle that I'm still conscious and writing in complete sentences.
