This is a warning in advance: The following is just my frustrated rants over my eye issues and it is a little depressing. However, I feel like getting some things off my chest and since I have a blog… Please feel free to skip this one, as it’s a bunch of whining and a slight pity party! Don’t worry, I totally understand! ^_^v
I have written a few posts about my condition called “Keratoconus”, so I’ll not mention the details of that again for rambling sake. There is a procedure to stop the progressive damage of Keratoconus, called “Corneal Crosslinking” (CXL). The procedure doesn’t “cure” the disease, but it has a 98% success rate of stopping the disease in its tracks and a 60% chance of improving eyesight by one or more lines. In other words, it’s the most idea surgery for those suffering with Keratoconus.
The other option is a corneal transplant, which is more invasive and has a lower success rate. This procedure is done with donor tissue and it works just like any other transplant. A person must be really bad off in their eyesight, in order to be considered for the transplant list. Also there is a risk of rejection or getting donated tissue that isn’t well off to begin with. One of the risks of corneal transplant is vision problems… which seems to defeat the point, I think.
So, the best answer to choose is CXL… right? Well, unfortunately in the US, CXL is not FDA approved. The only way to get this procedure is through clinical trial and it cost four thousand dollars to do (sometimes a bit more in other states). No insurance in the US will cover this procedure, because it’s not FDA approved, so this means that patients have to pay this price out of pocket. Ai-yi…. u_u
I am not a woman of means, I’m a struggling writer (aka: I eat a lot of Ramen for meals), and four thousand is roughly half of my yearly income. I can’t choose between eating my next meal and other basic needs, in order to save my vision. Even though my whole world is writing and without it I would be so lost, it’s a “luxury” that I honestly can’t afford, So, I have no choice but to wait until my eyes get progressively worse and maybe I will be eligible for the more invasive corneal transplant someday.
Last year, two women did offer to pay for my eye surgery, but I hesitated because (although they are very nice people!) the fact is that they are not close friends nor do we stay in contact on a daily basis. We’re not really a part of each other’s lives, they were simply fans of my earlier writings. And I’m no longer on Facebook, so we don’t have the short messages to each other once or twice a year anymore.
I never felt right about their offer, because it feels like I would be taking advantage. Especially when I know for sure that I couldn’t pay it back! Sure, they are more well off than I am (I think one works as an engineer, if I’m not mistaken… see, I barely know them.) and maybe four thousand is no skin off their noses, but I felt too guilty at the thought of asking acquaintances for that much amount of money.
I’m not comfortable with accepting money or expensive items from people that I’m not close with or family members , in general. My close family members aren’t wealthy either and the ones who are… Well, let’s just say I wouldn’t count on them to buy me a juice on a hot summer day, let alone pay for my eyes. They’re cold and distant, never wanting to be a part of my life or the lives of my siblings. >_>
However, if there was some kind of outreach program that could pay for my surgery, I would have no issue signing up for that. Although, there doesn’t seem to be such a thing. I was hoping against hope that the FDA would approve CXL last year, but the only news I’ve heard of that was the FDA was putting off the court hearing with long delays. And after that, I have no idea what happened with the case.
I’m completely in the dark of what’s going on in this long debate over this life-giving procedure. I haven’t yet found a site or group to alert me of this very political situation.
And yes, this has something to do with politics or just plain greed, I reckon. CXL is covered and approved in many other countries, except for the US. It’s been proven time and time again that it WORKS and gives patients a more quality of life. I find it shameful that the other procedure, cornea transplant, is approved and my insurance does cover it! Why not CXL? Can someone please explain that to me, in simple terms, because I’m confused! @_@
Meanwhile… my eyesight is in very bad shape, but yet not considered bad enough for corneal transplant. Most days, my world looks smokey and cloudy, it’s getting harder to read or write. My eyes water profusely whenever I try to focus on any object or text and I constantly walk into walls.
Every time I have to travel down stairs, I’m afraid and want to cry, because I nearly fall down them every time. One of these days, this blog will go silent, not because I am slacking but because I’ve fallen and cracked my skull wide open on the front pavement.
For days on end, I am unable to write anything, not even these “short” blog posts, because I simply can’t see anything on the screen. I honestly experience a complete “white out” on my “bad days”. I’m prone to migraine headaches, because I am squinting and struggling just to reply to emails with friends. And yet, this is not the worse of it, it will get much worse as time goes on.
I’m trying to make peace with the fact that I may become blind for good, with or without corneal transplant, Although, it sucks… It sucks so much. I feel hopeless and helpless. It doesn’t help when my eye center also refuses to give me soft contacts or even a new pair of glasses, in spite of the fact that my insurance would pay for it. They keep barking at me that I should somehow come up with the four thousand for CXL, otherwise they don’t wish to see me at all.
My glasses are twelve years old, the lenses are a bit scratched, yellowed from the years of smoking cigarettes, and one of the nose pads broke off years ago. I know that they can’t give me a stronger prescription than what I already have (I have the max, apparently), but for comfort sake… They’re just uninterested in giving me service, unless I show up with money for CXL. Yes, I have to find another place to try, I know that, and I’m working on it.
It also doesn’t help when people who are not facing such a thing make insensitive remarks like, “Well, don’t worry, you can still write when you go blind. They make braille keyboards!” Or, “there’s a new computer program that can read and ‘see’ things for the blind now, so you should be fine when the day comes.” Well, there are excellent prosthetic limbs in the world too, but if you were told that you were going to lose your arm or leg in the near future, would that really cheer you up? Seriously, I’m asking. o_O
Anyway… I’m just sulking about this, because it is a HUGE deal, And I try not to dwell on my loss of vision too much, because it is very depressing. I use to love my eyes, as they are huge (anime huge), brown, and lovely. However they suck now! Boo, you stupid eyes! Work, damn you!!!! >_<
I did find a nice alternative, when my eyesight goes kaput and I’m unable to write a thing. I watch a lot of Markiplier, because it doesn’t matter when his videos are indistinguishable blurs to my eyes. He’s a lot funny, thoughtful, and his voice is soothing. It’s hard for me to feel sorry for myself, when I’m laughing like a nut over his comedy.
I also plan to find some type of support group for those losing their eyesight, if I can. Sometimes it good to vent with those who could understand what I’m experiencing and going through.
Thanks for reading this sad rant. Take care everyone. ^_^v