Much Ado About Eyes

anime-art-girl-glasses-1094551This is just a long personal story, with no real flowery “lesson” or conclusion to it. Feel free to skip it, I am not offended. :lol:

Well, last week, I was given a definite diagnosis of “Keratoconus”, which is a degenerative eye disease. The cause of it is unknown, the guess is that it may be genetic. And there are treatments but no proven “cure” for it yet.

I was diagnosed with this disorder at age 21, before this final wake-up call. At that time, I lived in Philadelphia and noticed that I couldn’t see well with my left eye, after nearly getting hit while crossing the road. I swear, I didn’t see the massive SUV thundering my way from my left view, as I stepped off the curb. It wasn’t one of my suicide attempts either (will mention more on that sob-story past some other time!).

Thankfully, the car blared its horn and I got out of the way in time, I was shaken and decided to see an eye doctor for new glasses. That’s when I was told very matter-of-factly, “You have this disease and someday you will go blind.” I think I took it eerily well, as I was often suicidal back then and perhaps I thought, “Oh, well. It’s not like I’m going to live to see that day coming.” No pun intended.

The fact is, I did get better within my depression and began to have a zeal for life. I’ve made it to my thirties and I wish to reach my nineties someday, if possible.  I have big plans to be the crazy old cat lady in someone’s neighborhood! And all of my new cats will be named after the crew of “Firefly”! Hooray!!! ^o^

For many years, I’ve been relying on my right eye, because my left eye has been useless ever since age 21. I’ve learned to adapt to not having  vision in my left eye, satisfied with being able to see just well enough to continue with my passion of writing.

However, before I moved from Philadelphia to Minnesota a year ago, I noticed that my right eye began to have some troubles. I visited a local eye care center here in Minnesota, somehow thinking that perhaps the diagnosis a decade ago was false and all I really needed was a new pair of glasses. In other words, I was in complete denial and fantasy la-la land. >_>

The new doctor confirmed the old diagnosis of Keratoconus and noted that my condition was becoming worse. However, this time they offered some hope that everything would be fine (unlike what I was told a decade ago), because there was a surgery I could get to stop the progression of the disease. I was given another appointment with an eye specialist who is an expert in this particular disorder.

glassesanimeI was very much hyper about this appointment, as I believed I was coming in to be given information about the procedure, the risks involved, and to gain a definite date of surgery. Instead, the doctor said with a grin, “This procedure isn’t covered by the FDA and therefore it’s not approved in the US. That means it’s not covered by any health insurance. However, it’s on trial here and it only cost two thousand dollars per eye.”

My jaw dropped and I replied, “I can’t afford that!”, while flailing my hands helplessly. I guess it wasn’t apparent to him that I wasn’t a well-to-do woman, as I sat there in my old and beat up “chucks” , a faded Doctor Who t-shirt, and wearing a pair of slacks I’ve had for four years. It is visible that my trouser cuffs are shredded and worn. He gave a pause and then sighed, “Yeah… I guess the price is kind of taxing…”

Kind of taxing!? I wanted to guffaw, “Hey, doc, I have five hundred dollars in my account and it took me months to save up in order to have that! ‘Kind of taxing’!? Yeah right… No, try the word ‘impossible’!” However, I realized that he’s a doctor after all and most likely four thousand dollars is nothing for him to worry about. And besides, it’s not his fault that I lead a bohemian lifestyle, that was my choice. I REGRET NOTHING. O_O

So, he began to try peddling off some hard eye contacts that will improve my vision, but he was quite clear that it wouldn’t stop the progression of my disease whatsoever. So, I have the option of improving my eyesight for the time being, before I lose it and the contacts are rendered useless in the end. I said no to the offer, more concerned with stopping my eyes from becoming worse.

That’s when he squeezed my hand and said a series of words that crushed my heart. He said, “There’s nothing more that we can do for you, without the surgery. Things will progressively get worse, especially in your 40’s through 50’s. We can chart how worse it gets, but that’s all. I’ll make an appointment for your next check up in a year.” u_u

My life and passion is writing. It’s the only thing that gives me joy and I’ve been at it since I was six years old.  Stephen Fry once said something about how one’s work should be more fun than fun. I’ve never had such a job that match this description, other than writing. Which is weird to refer to my writing as a “job”, because it has only earned me eighteen dollars in the many years I’ve been doing it! Whoo-hoo.

Riza-with-glassesEven so, it’s the most stressful, time consuming, worrying, beautiful, satisfying, and fun job I’ve had in my entire life! My work is more fun than fun. I rather scowl critically over several pages of rewrites than to do anything else that I consider as fun, like playing video games, watching movies with friends, etc. To be told that in my 40’s and 50’s that it may just all go away (and I’ll be age 34 at the end of this year too), it bought all kinds of heavy emotions down upon my shoulders.

I went home and rushed into the garage (as I live with roommates), so I could swear a string of insults into the air. I felt numb one moment, angry the next. and by the end of the evening I cried.  I had spent a few hours looking up my condition and reviewing how very bleak it really was. The argument is that I won’t go blind-blind, but legally blind.

This  not much of a comfort, because my left eye is already legally blind and have been so for a decade now. I can’t read or write with the left eye whatsoever, so “legally blind” in both eyes is pretty much blind-blind to me, as it means I am to lose the only passion I have in this life.

I then curled up into a ball and thought to myself, “I could really use a friend about now. This is really heavy stuff.” I posted the news to my Facebook and then cried myself to sleep that night.

By the  next morning, I woke up and decided that I would create this blog and keep writing as much as I like for as long as I can. This space will serve as my marathon, before I lose my legs sorta speak. I’ve decided that I’m not going to lay down and give up, to be paralyzed by this, that I will make the most of the time I have left and binge write.

Meanwhile, I logged onto Facebook to add my new blog for friends to check out and came across an unexpected message. Two sisters, who I’ve known from another site before we migrated to Facebook some years back, offered to pay for my surgery!  O_O

anime_glassesThe women had no mention of it being a loan or anything, they just simply explained that life and opportunity have been kind to them and four thousand dollars is really no trouble to them . The wonderful sisters explained that they believe in “paying it forward” and they really wanted to help me out.

I gawked at that message for a while, not sure if I was still sleeping or not, and I read the message three times to make sure that my right eye wasn’t playing tricks on me. My response was that of awe and I thanked them much for their offer. I also turned it down, because I’m very weird about accepting money from friends, especially that MUCH money! O_O

I explained that I would most likely play a game of chicken with the system and wait for the procedure to be approved, It is possible that by next year policies will be changed and “Corneal Cross-Linking” will be a procedure covered in the US. It is highly successful in other countries so far. with a reported 98% success rate.

My friends told me that their offer still stands and will always be waiting for me. They’ve asked me to take their offer if the procedure is never approved in the US or I find myself close to losing my eyesight. I made a promise that I will take their offer and not let myself go blind. I always keep my promises. So… there is some hope for me yet. ^_^

Some people have shouted at me, “What is wrong with you, woman?! Take the money and run with it!”. However, I’m a odd duck. For now, my condition is stable and I won’t lose my sight over night. I would hate to take such a lump sum from my friends and rush for the surgery now, then a year later it is approved and covered by my insurance. That would suck!

I’m the kind of person who is very much patient and not so hasty in rushing into things. If my eyes are worse by next year and the surgery is not approved, I will take the generous offer of my friends. If by next year my eyes are the same and not any worse, and the surgery is not approved, I will wait again for another year before taking the offer. Or if I notice that writing is near impossible before then, I will take the offer. Either way, I will not opt to go blind if i can help it, no matter my pride or weirdness about taking money from friends.

I know that many may not understand why I choose to do it this way, but I don’t really care about that. I know that I wouldn’t feel right if I didn’t try to wait it out or at least wait until the cost of it drops a little. Four thousand is A LOT! It’s simply the kind of person that I am. ^_^

Thanks for reading and have a great weekend everyone!

-D

EDIT: I have decided that if cross-linking isn’t approved by Jan. 2015, I will take the kind offer of my friends and not wait it out any further. I don’t want to lose my eyesight completely, as writing is my entire life and joy! ^_^

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18 thoughts on “Much Ado About Eyes”

  1. I know i’ve only known you for what 72 hours but i’d be in on it too. Before I even read of your friends offerings I was like what if…
    Then hey why not start a kickstarter. Hey, if a man can make 40gz off potato salad, surely this would be cake.
    And that is why i’m so angry with the healthcare system here. It’s seriously flawed. Great people like you should be taken care of. Instead we waste billions on wars for things that don’t even exist.

    1. Aw! I wouldn’t be able to take you offer at all. lol. I’m very odd about accepting money from friends! :O
      Yes, it’s kind of embarrassing when I have to explain to my international friends why my healthcare here won’t cover or approve most things that are covered in their countries. I shocked my best friend in Vienna with this news, because such a procedure is covered in Austria. It has a 90% success rate, so I don’t know why the FDA and healthcare in the US are dragging their feet on this. o_O

      1. I’m pretty sure it has something to do with money. Not enough profits, they’re not paying them enough to pass it, etc… yes as you can see, I don’t trust our government.
        As for money… eh we can always make more of it, but your health, not so easily.

      2. I agree… it’s most likely that, MONEY. It always come down to it with politics and government. I don’t trust much in general. =p
        I’m sure you guys could make more money, but I’d still feel weird about it. Four thousand dollars is a LOT. I feel weird when I ask people to give me a loan for cigarettes, even though I pay them right back for it later. lol

      3. I hate bumming cigarettes off people but it’s also because I REAAALLY hate buying a pack. If I have it, I have to smoke it. I rather just smoke one or two here than 20 in a couple days.
        But yea since I hate bumming off people, I end up buying a pack which leads me to chain smoke =x

      4. That’s funny… I have a crazy tale about my quit-smoking endeavors in drafts, which I plan to post on Monday too. It’s a tough thing to quit. And I’m a chain-smoker type, which is why I always go for the pack, and that’s expensive! It cost almost $10 for one pack here in Minnesota. In Philadelphia, it cost $7 at the most. It’s a very expensive habit to keep. u_u

      5. VERY expensive. I used to smoke a pack a day at one point. That’s over $1500 a year. $10, I would quit for sure. The deciding factor when I decided to quit was it reached $7 here too. I now get the Marlboro 72s which can be found for $5 but still… I need to quit. How much do you smoke?

      6. Wow, I was a bit worse… I use to smoke two packs a day, chain-smoking them all. Although, when I smoked that much, it was $4 a pack. My deciding factor was when I gave myself asthma from smoking too much and a few trips to the ER to be placed on a breathing machine, during a bad asthma attack. So, for the past three years I’ve been trying my best to quit. I smoke 4 cigs a day now… seven, if I’m stressed. :-P

  2. Hi,

    I’m sorry to hear the KC has spread to your other eye. :/ My KC story is a bit weird, but it showed up later in life and progressed so quickly I went from 20/25 (no glasses) to 20/100ish in about a year–and in both eyes. I had CXL in L.A., where it’s usually more than double what you have to pay in MN if that helps…argh (“Here’s my credit card #)! It pisses me off that CXL was supposed to be approved this year as Avedro had received an NDA from the FDA, but they weren’t happy about a few things. Can’t the FDA just get the copies of the EU trials?! I don’t think it’ll be approved for a few more years, but I could be wrong. Fingers crossed, regardless.

    Per the price (if you didn’t know), the corneal surgeons get paid by the trial sponsor (Avedro)–you can usually find out how much per eye if you go through all the trial info. Then, they pad the price. MN=less padding and SoCal=crazy padding. I have no idea how this is allowed or why anyone should have to pay for a trial. Also, please, please, please make sure you get epi-OFF CXL. This is what’s done in the EU (known as the Dresden protocol) and that’s the type that’s 98% effective. If the doc only wants $4k, then it should be via an FDA-trial, so it will be epi-off.

    Anyway, I so hope you take up your friends’ offer; CXL really stops KC in its tracks and I got several lines of VA back in one eye. I have a genetic disease called Ehlers-Danlos syndrome which caused the KC and I can’t work anymore from the former issue and money is sooo tight, so I completely understand the freak-out over the price, but being able to see so-so on my adapted laptop and still use a cell phone made CXL worth it and I just hope it lasts.

    I’m not blogging anymore, but I wrote about my experience (and lots of other boring things) on my blog if you ever need info,or just hit me up in my comment box. Sorry for the l-o-n-g reply, but I felt compelled to leave a comment as I’ve been in your shoes.

    Best of luck to you and hang in there,
    A :)

    1. Thanks so much for reading, liking, and leaving such a wonderful reply to my humble post! I appreciate it! I heard many great things said about CXL and it’s success rate, so I have no idea why what’s the hold up! It makes me feel a lot angry and a lot disappointed, because I’m sure it’s something needed for a lot of people suffering with KC. I know that it doesn’t cure the disease, but it does seem to stop it and possibly improve vision a little. And for me, CXL is the difference between becoming blind at age 40 or becoming blind in my elder years. If KC is to take my vision someday, I rather it be in my elder years, not in my prime where I need my eyes so much in order to write. It’s a clear sign that this is all about money. padding bills for more of it, and taking advantage of people with KC. They’re literally robbing us blind! It’s really sad. :-(
      However, I’ll keep fighting on and I will take my friends offer in a year, if CXL is not approved.

  3. No worries! I love meeting others with KC, etc. Let’s hope it does get approved in 2015. ><

    The thing with KC is that no one knows how far it will progress: some people get by with glasses for life and some need transplants, which don't give you 20/20 vision like some think (but you won't be blind-blind from KC like your doc said). I was on a quick road to transplant city due to my weird case and the docs taking a year to Dx me, so I had less than a month to get the surgery done (and find a trial in CA). The healthcare system–my home away from home–in this country is so appalling I could scream. I lived in the 3rd world in my 20s and it was better!!! The rest of the world, minus Canada, is completely laughing at us. (And I'm a flaming liberal here.)

    Well, I'll stop myself because I'm not blogging anymore. Lol.

    1. Yes, that’s true… no one knows for sure how KC progresses. However, I started out with a very strong prescription to glass and now they’re close to useless. And my eye doctor said that they can’t do anything more for me glasses wise, so he offered the next step which is the contacts. But, I can’t abide by putting things in my eye, it scares me too much. Anyway, even if I wanted to try it, my particular insurance doesn’t cover that either. It would cost less to get the contacts, but it won’t stop the presgression of my KC whatsoever, just improve my vision for now. My KC seem to be on a steady progression too, as it started when I was age 21 and I noticed it getting worse at age 30. It could stop itself at this particular point: my left eye is completely legally blind and I can’t read or write with it at all. My right eye is blurry, as I rely on it for everything, and it’s getting harder to read with that one too. It could stop here for another ten or twenty years, no one knows. However, my doctor thinks CXL is needed now and he seemed a lot urgent in his voice about it. Even if I never see 20/20 again, that’s fine with me, I just don’t want things to get worse and lost my ability to write altogether. So, I’m definitely willing for CXL.:-)

      Hey, I’m a bit of a liberal too. And yes, I think the other countries are laughing at us! If I lived in another country, I would have the surgery done already and no big deal would be given about it. The US needs to step up their game a little, we’re lagging behind on so many fronts. :-(

      1. I can’t get correction in either eye from glasses–that would so be my dream. I’m lens intolerant due to severe dry eye, but I have to wear scleral contact lenses to drive, so I wear them maybe 2-3 days a week for a few hours and want to scream (most people are fine with them). They involve suction cups to get in/out so not for you. Hmmm…I never had a fear of putting things in my eyes, but I also never wore contacts before. I guess I just deal with what is thrown at me at this point. I don’t have insurance that covers those things either and they’re in the thousands. See, this is why the US is making me insane! What a sad joke.

        I totally understand why your doc is telling you to get CXL now. They don’t get the financial issue, but they’re right. I’d hate for you to have 2 useless eyes like me. Well, neither is legally blind, but I feel majorly visually impaired and can’t believe I had normal vision until the fall of 2011 (late 30s then). Can you just get the good eye done; I’m presuming that price was for both.

        Have you looked into cash prices in Canada? CXL is approved there and you’re near the border (sort of), but I doubt it’s less than $4k. You need to go to Mexico for cheap CXL, or India. I was told by an Indian that it’s around $800. Ugh. Lenses are super cheap there, too.

        Well, I’m about to crash, but keep your chin up. You can also look for other trials in your neck of the woods and possibly find a lower price from a different doc. Most can be found at http://www.clinicaltrial.gov.

      2. I’m so sorry for your eyes! Hugs! Yes, it’s two thousand dollars per eye for CXL/ Even if I choose to do one eye, the problem is two thousand it still way out of my price range. If I save hard enough, I could swing Mexico’s price of $800 though! Although, that means gaining a passport (?) and paying someone to drive me there and back. It’s a shame, but I would so consider doing that if push comes to shove! I’m not sure how much lenses cost to be honest, I only assumed that it would be cheaper than CXL, but I know for a fact that my insurance doesn’t cover it. Well… I still have my offer from my two friends, so I’m not too worried yet. I’m just want to “wait it out” and see what the FDA is going to do, before I take their money and then a month later “Oops, it’s covered now!” :O
        To me, it’s one thing wasting my own money, but I wouldn’t be able to shake away the guilt of wasting my friend’s money. And it’s not like I’ll go legally blind in my right eye overnight. Thanks for that link! I will check into it right away. I wish you very sweet and peaceful dreams, my friend. ^_^

  4. I know you don’t like to take money from friends, but come on, this is your health we’re talking about! Just consider it a loan and do your best to pay them back.

    I’m in a lot of debt right now due to my own KC problems, which sadly are more severe. My KC started at around age 12 and I was considered legally blind by the age of like 20 and contact lenses would provide little help. Cross linking was never an option for me. Right now I’m sitting at 23 years of age and a corneal graft later I’m wearing glasses and can see pretty well out of one eye. And the other eye is set to be grafted late this year/early next year. :)

    1. I know… you’re not the first to react that way. LOL! I’m just a lot uncomfortable with the idea of taking the money now, when CXL could be approved this year. And I could never agree that it is a loan, being that it would be a loan I could never pay off, unless I become a famous writer or win the lottery, whichever comes first. I don’t seriously think it’s going to hurt me to wait it out for this year and see what the FDA will do. If by next year it’s not approved, I will consider taking my friends’ offer for sure. ^_^
      And I’m so sorry for your troubles and debt too! It’s awful! I don’t understand why CXL is not approved and covered by insurance already. It doesn’t make any sense whatsoever. :-(

  5. Hello,

    I just read your blog. I too have keratoconus and have had cross-linking done in both of my eyes.

    Can I please advise you seriously to accept the money from your friends and have the cross-linking done! This isn’t like borrowing money to buy a new TV, this is your eyesight which will affect you for the rest of your life.

    Even waiting one year might be the difference between seeing reasonably well and not seeing reasonably well.

    Keratoconus is a horrible disease and the longer you allow it to progress, the more problems it creates. Your friends obviously want to help you, and in this case, I think you should let them!

    1. Thanks for reading my blog! :-)
      I’m so sorry that you suffer with Keratoconus as well. And yes, I don’t mind the nudging… I understand that it’s serious and it’s not wise for me to wait on it too long. My friends are awesome and they want to help, which I am grateful and I don’t plan to push away their offer too much. Yet… I’m awfully stubborn and I know that the cross-linking procedure is up before the FDA again this year. I want to wait and see if it gets approved first, as that would mean I could get the surgery without taking my friend’s money. I know I had written above (I must edit that!), that I would keep waiting it out longer than a year, but I’ve known decided that I’ll wait until January 2015. If it’s not approved by then, I will take my friends offer. :-)

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