It has now been two years since my eye problems were largely solved and over three since they began. I’ve mentioned it once or twice, but the original problem was mostly in the early stages of maintenance once my blog was up and running, even though it kept coming back a few weeks or couple of months after I finished treatment, despite my best efforts. For the last two years though, I’ve been taking a daily pill and putting in a sorta daily eye drop as the specialist I saw was completely unable to actually diagnose what had happened but did prescribe me the eyecare he determined I would need to care for the symptoms with the note that things would probably clear up on their own eventually, so long as I didn’t ignore the symptoms. Given that ignoring the symptoms could result in blindness (partial or full), I have been pretty motivated to keep up my routine over the years. After all, daily-ish eyedrops and an actually daily pill are a small price to pay to keep myself from going blind in one or more eyes, even if I still absolutely hate putting anything in my eyes despite the over three years of exposure I’ve had to the process. I’d rather confront that fear and discomfort every day than lose my vision.

At some point, I’m supposed to try to decrease the frequency of the drops to cut down on how much of them that I’m using (since they carry their own risks which are bad but still fixable, unlike the potential blindness from ignoring my symptoms), but given that one of the side effects of another medication I’m on causes worse scarring, I’ve decided to wait until I’ve finished with that medication. Better to wait than to increase the risk of going blind. I mean, I got a pair of scars from bumping into a bookshelf in a way that scraped off a single layer of skin (I didn’t even bleed) and even gave myself one on my leg from scratching an itch with the top of the shoe on my other foot. It’s wild and absolutely not something I want to risk when I’m genuinely worried that growing out my nails might end up with me getting a new scar every time I scratched an itch (not to mention that another side-effect causes my nails to be thin and weak even compared to my already thin and week normal, which means I’ve accidentally torn and sliced them multiple times). Which means that I’m entering my third year of symptom maintenance, still have no idea why my eye problems began, and might never find out because I can’t find anything in my own research and my doctor seems incredibly uninterested in figuring it out.

This is the same doctor I’ve been seeing even since the normal eye doctors decided my problems were outside the scope of their knowledge and abilities. He’s apparently the only specialist in my area and while I’m sure he’s incredibly busy since the local healthcare system is completely overloaded thanks to the advent of the COVID-19 pandemic and the resulting loss of doctors, it genuinely sucks to have to slow him down during our once-yearly appointments as I try to pry any information out of him that I can get my hands on. He wants to be done and move on. I want answers so I can move through my life with literally any degree of confidence that this problem is actually solved rather than merely defanged. He always gets what he wants and my best attempts at getting what I want are met with some version of “well, it could still be any of these things and we might never know since we’re basically treating all of them.” Which is a shit answer and, honestly, much more in line with most doctors I’ve heard about when it comes to dealing with incredibly niche issues that aren’t necessarily easily diagnosed or treated. It sucks and there’s very little I can do about it unless I want to travel to an out-of-network specialist in likely a different state entirely (since I live in the specialty center of my state) and go through all this rigamarole again. Which I very much don’t. I don’t have the energy for that and probably don’t even have the time. Which is funny because I could probably easily afford it this year, thanks to some smart planning on my part–I put aside almost double my usual amount for my yearly FSA (which is pre-tax income to be used on qualifying medical-adjacent expenses knowing I could spend the balance on a new set of fancy lenses and frames since mine are several years old now and I need new ones but want to get another set with the same light filters and protections that my current set have, which were pretty expensive back when I got them years ago).

Still. As far as medical maintenance programs go, this is a pretty light one. Must less taxing than literally any of the other stuff I’ve got going on. The only side-effect of the pills and eyedrops is spending about twenty bucks a month. Much easier than the side-effects of the other medications I’m taking, which include a touch of weakness, fewer spoons than ever before, a decent amount of joint and muscle pain whether I work out of not, and horrible joint stiffness unless I keep up with my workouts and stretches. That medication will hopefully end in another couple months, but I’ve got no way of knowing it’s done until the day its done since I’m looking for a specific reaction rather than trying to reach a total lifetime amount or taking them for a calculated amount of time. Which really sucks, let me tell you–I realized this morning that my entire conception of life in my current apartment is wrapped up in how things have changed since I started taking this medication rather than the four months I lived here prior to starting the medication. I don’t remember how it felt to move through my apartment without my aching joins and dread of going up and down the staircase separating my computer, TV, and video games from the rest of my apartment. Compared to all that, twenty bucks a month for some pills and eyedrops is nothing. It’s easy. It’s so routine at this point that I not only don’t have to think about it but also never accidentally forget it.