Seeing through a bad day

I want today to be over.

Maybe I just want a do-over, or to forget it completely. When you’re in a bad day, it’s hard to see it as a lesson or strength building exercise, even though it probably is.

This bad day, like many others, has to do with my eyes. My eyes are a constant source of frustration and “strength training.” Some days I just get tired and don’t want to keep trying to make them better.

You might not understand why my eyes are a source of frustration for me, so let me explain:

(FYI I’m not a doctor, this is just info from my experience going to optometrists since I was about 5)

• Astigmatism: Your cornea is sorta pinched, rather than being perfectly round like it should be. 
• Diopters: a unit of measurement for eyes. 

A little history of my eyes

I have been going to optometrists (multiple) since I was around 5 years old.

No one in my family has a history of these types of problems with their eyes. In fact almost no one even needs glasses or contacts at all.

Ptosis

I have something called ptosis in my right eyelid (which was just officially diagnosed about a year ago), and I’ve had it since I was born. It makes my right eyelid a little droopy and my right eye appears a little smaller than my left.

It also makes it more difficult for me to get contacts in or out of my right eye and every now and then does some damage to my self esteem.

Lazy eye

When I was around 5 or so, my left eye turned completely inward. You probably know this as a “lazy eye.” Turns out, my left eye is worse vision-wise than my right, and before I got glasses it had basically just decided to call it a night.

Having a lazy eye that severe means you have basically 2 options: surgery to force the eye forward, or patching the other eye to force the muscles to work. My parents chose to patch my right eye. I don’t remember how long, but basically all day every day for months or years. And my left eye did get stronger, but is still the worse off of the two.

Astigmatism

I have EXTREME astigmatism in both eyes. Not even normal extreme – in fact there doesn’t seem to be much that’s normal about my eyes – but severe, like 8 diopters severe.

• To give those without eye issues (having a little astigmatism is actually pretty common) some reference, astigmatism is usually considered severe if it’s between 2-3 diopters. So 8 is like, severely severe.

BUT 8 isn’t unheard of. In fact there are some people that have over 9 diopters of astigmatism, which is insaaaane.

There is also a condition called Keratoconus, which those people with super-severe astigmatism often have. It also causes your cornea to be all wacked outta shape, and usually the cornea is thinner than it should be. I’ve had 3 different eye docs test me for Keratoconus because they couldn’t believe my eyes were as extreme as they are without Keratoconus being the cause. I don’t have it.

This is good and bad because Keratoconus is actually considered a medical condition, so insurance would likely have paid for my eye treatments in the future if I’d had it. On the other had, Keratoconus is a medical condition, and sometimes requires corrective surgery – AS IN A CORNEA REPLACEMENT – and I’m cool with not having to do that. Although at one point I actually asked about getting a cornea transplant…

Contacts

Normally people with a regular amount of astigmatism or other eye issues (nearsighted/farsighted) can get soft contacts, which have the reputation for being pretty comfortable. People with extreme astigmatism normally have to have hard contacts, because the soft ones move too much and don’t fit correctly.

So far, in over 16 years of trying to get contacts, neither option has worked for me. It isn’t even a matter of being comfortable. The technology simply isn’t there to create hard or soft lenses that will sit correctly on my eyes.

A couple years ago an optometrist introduced me to a type of hybrid contacts called synergeyes. They’re hard in the center and soft around the edge. They’re used for people with Keratoconus. Unfortunately, they didn’t work out for my eyes either.

Sclera 

• Without getting too technical, your sclera is the white area of your eye, the cornea is the colored part of your eye. Usually your cornea is what is misshapen with astigmatism.

I recently went back to the doc to get new glasses. While I was there they told me about some new lenses they were working with – scleral lenses.

What makes them different?

Have you ever seen people with black eyes on TV or on Halloween? There’s a good chance they’re wearing sclera contacts. These kinds of contacts are bigger, covering more of the eye (the sclera) than normal contacts. For actual vision correction, they’re made to basically completely “bubble” over the cornea, and sit on the sclera, hence the name. They don’t touch the cornea. Instead, they’re filled with a liquid and that liquid sits between the lens and your cornea.

So, they’re a great option for people whose corneas just won’t cooperate. Hi! Right here!

They’re also very expensive. Like, $2000 a pair a year expensive.

So I went for a fitting

The docs thought this might be the one that would work for me, so I went for a fitting.

After adjusting the contacts a few times, the doc told me I was the first patient that he doesn’t think these contacts will work for. Shocking. Not really.

Apparently my sclera is as misshapen as my cornea.

That is unusual. Every eye doctor I go to comments on how unusual my eyes are. In fact, every one of them mentions the fact that they’re never seen anyone with eyes like mine. So this isn’t a big shock for me, even though it is disappointing.

I’m still going to try sclera lenses

Every time anything remotely possible pops up that might just improve my eye situation, I want to try it. These opportunities are few and far between, so it doesn’t happen a lot. After talking with the eye doc for a bit, and after he went and talked to some people at a lab somewhere, he decided to give it a try. So he’s ordered some lenses for me, and I’m waiting to see what happens next.

The good with the bad

There’s a lot wrong with my eyes, and it bleeds into my everyday life.

I like being active – I actually have always enjoyed working out – but having my only options be glasses or blindness is frustrating.

Running with glasses on gets frustrating.

Boxing with glasses on gets frustrating.

Doing push-ups with glasses on is near impossible.

They fall off, they bounce, they slide down my nose. I am never able to not be thinking about the glasses on my face while I’m working out. They make going to the gym a much more involved experience than I’d like it to be. Nothing’s simple.

Maybe it doesn’t bother everyone this much, but it does me.

I could just take them off and deal with not being able to see much, and I used to do that in high school because I just hated wearing them all the time.

But I get anxious when I can’t see things clearly. I take runs at night, and taking my glasses off in the dark makes me afraid I’m going to miss a crack in a sidewalk or a rock in my path and trip.

Formal events always feel like a bit of a joke. I’ve never been a girly girl, I rarely wear makeup (my glasses are part of the reason for that) and I feel awkward in dresses anyway, but the fact that I have no other option but to wear glasses with my formal dress, and somehow try to do my makeup when I can’t see, makes me feel even more out of place and the whole occasion a little depressing.

On top of that, when I feel this way about my glasses, I can’t help thinking that maybe other people just deal with it better, and I shouldn’t complain. Then I think about the fact that no eye doc has seen someone with my eye issues before and can’t help wondering if anyone can relate.

I get frustrated when people that haven’t experienced it tell me it’s not so bad. That I “look fine” in glasses. Because, although I appreciate they’re trying to be nice, “looking fine” isn’t the point.

How I look isn’t the point.

• Having a choice, and having eyes that work is the point.
• Worrying about what my future will be with eyes that no one understands is the point.
• Having to worry about the cost of eyes that no one understands is the point.
• Never quite feeling like myself is the point.

So today has been a bad day because I’ve had to spend a good chunk of it thinking about all this. It’s a reality that affects everyday of my life.

I don’t discount the fact that I’m lucky to be able to see, but sometimes I have a hard time focusing on the good over the bad.

How often do any of us take the time to be truly thankful that we can see? Or hear? Or don’t have to deal with any of the other illnesses or disabilities that others deal with everyday. We’re lucky. I feel lucky. Just not today.

But I do feel lucky and appreciate being able to see and function as much as I can. I appreciate this more than I probably would with even “normal” awful eyes. My eyes are new territory for every doctor I see (ha. “see.”) which tells me that my future is probably going one of two ways:

1. Technology advances to the point that something can be done to correct or improve my eyes – which gives me hope
2. My eyes remain a mystery and likely get worse – which makes me thankful that I have them now and can prepare

This post was kinda heavy, I hope I didn’t harsh anyone’s buzz.

It’s been a rough day. Thanks for taking the time to read through my venting, guys. I appreciate it.