Health Update: Vision and Current Status

Last week I went to the ophthalmologist.  The news was neither good nor bad. It was more informative than anything with some discussion on next steps to help my vision.

My depth perception has become progressively worse over the past few years and deteriorated more quickly over the past year. Same with my peripheral vision. Both of these things have always been a challenge, but now these challenges are more debilitating than ever.

There are a few causes for these things, one of which we might be able to correct.

A little background: Due to my mitochondrial condition, my eye muscles are paralyzed. Consequently, my eyelids droop. This is definitely one of the things affecting my peripheral vision and possibly my depth perception.

My ophthalmologist wants me to have eyelid surgery. The only issue is that this surgery isn’t like cosmetic eyelid lifts. Because of the paralysis, a specialist must perform the surgery. It’s very complicated. They attach a sling from my eyelid to my forehead muscles. I assume they would have to determine whether or not any of my forehead muscles are paralyzed, as well.

My doctor wants to send me to a neuro-ophthalmologist who will perform the surgery. She called him right away to schedule a consultation, but of course, he does not take my insurance. He is the only neuro-ophthalmologist in the area. Finding someone who takes my insurance and is capable of performing this specialized surgery is going to be extremely difficult.

I am hoping that the neuro-ophthalmologist my doctor recommended will work out a payment plan with me. But even at that, I have no idea how I will afford the procedure.

The consequences of not getting the surgery will continue to have a severe impact on my vision. The ptosis (drooping) will continue to progress. As it does that, my vision will get worse.

Additionally, as the lid droops, it moves my contacts, causing them to scratch my eye. This could cause lasting damage. It might get to the point where I cannot wear my contacts.

Without them, I would not even be able to see shapes. I would need to relearn how to live my life. People do it. I know it’s not impossible, but I cannot deny that it is scary. I’ve always known this is something with which I would have to deal. Finally facing the reality is daunting, to say the least.

For those of you wondering, lasik surgery is not an option. My corneas are so misshapen that the refraction machines doctors use to measure your eyes cannot measure my corneas. Hard contacts are the only things that give me some level of vision. Nothing else comes in my prescription.

There are other issues affecting my vision that cannot be corrected. Because my eyes are paralyzed, I do not blink like everyone else. Blinking has two functions, it helps give your brain a rest and it moisturizes and clears your eyes of any debris. When I blink, it is only to rest my mind. Because my eyes are paralyzed and do not move, they are neither moisturized or cleared of debris when I blink. Because this function of blinking doesn’t exist for me, I don’t blink very often… which really weirds people out sometimes, but I always win at staring contests!

Obviously, not being able to moisturize my eyes causes dryness (and yes, I use drops, sometimes several times an hour). Dry eyes would affect everyone’s vision. It seems that my level of dryness, and the fact that I’ve had it for my entire life, is one of the things that is most damaging to my vision. There’s no way to correct this. Things will continue to deteriorate.

Remember that I said I wear hard contacts to see? Well, imagine putting plastic in eyes that are already extremely dry. Not fun. Everyday it literally pains me to see. But I have no choice at the moment.

Because allergies are so bad this season, I’ve spent a lot of days without my contacts. There’s a certain point where I can tolerate the pain and then a point where I know I’m potentially damaging my eyes.

This means that I can’t wear them, which means I can’t see… which means I can’t work – which means no income.

Again, I need to start learning new ways to navigate the world. People live and work without vision. It is possible. But again, relearning how to live is scary, stressful and depressing.

I know the TV and movie industries want us to believe that people face health challenges with positivity and hope. They flood us with images of inspiration. They make it seem as though if you are depressed by failing health that there’s something wrong with you.

This means that people who don’t struggle with debilitating health issues think there is something wrong when you get depressed, angry and desperate when you’re facing something like this.

That public view of what it’s like to go through this (and every other health problem I deal with) is damaging and stressful in and of itself.

Long story short: Probably going fully blind within the next several years. If I can get the eyelid surgery, it may or may not extend that for a few years. Either way, pretty scared about it.

But there’s more!

Not sure what’s been going on, but for the past 9 days or so I have been in extreme pain. There have been days where I haven’t been able to type my hands have hurt so much. One day, I couldn’t even text on my phone things were so bad. That’s why I didn’t write this post last week like I said that I would.

Those pain issues with not being able to wear my contacts much means that I’m far behind in a lot of my work. So, hey look – stress and depression!

Anyway, that’s where I am. I’m attempting to stay positive, focus on each moment and hold onto the positive.

(Sorry for any typos and such. Too tired from writing this to proofread it.)

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