Keratoconus Update the Ninth: I Should Have Posted This Already!
Hello friends, countrymen and women, and random people on the street! It's time for another edition of Adventures with Emily's Eyes! (Woo?) I should have posted this already, but got behind due to the frenzy of the holiday season (even figuring out Christmas travel plans is a big multi-part series of phone calls and emails and more phone calls in my family, heh). But anyway!
So I went back to the doc a couple of weeks ago two days after my Great News! visit, to have the evaluation for the left eye, which you need to get done prior to setting up the surgery. As expected, the left eye is a good candidate for the procedure (I wasn't too concerned on that account, because they'd tested it with the right the first time and said it was a good candidate).
What I didn't expect was that the left eye astigmatism was getting worse more quickly than they'd anticipated. They didn't expect it either (clearly) and said that they'd like to get me in as soon as possible to get the left eye procedure done. Currently, as I might have mentioned, I wear my glasses, because after the procedure you can't wear contacts for awhile. So I asked if it might have gotten worse because I am wearing the glasses now, which don't correct all the way or even nearly enough because they couldn't due to my terrible eyesight caused by the keratoconus; but I was told it was not a factor. "So what caused it?" I asked. "You're just special!" the doctor said, cheerfully. Well; he might not know why my eye got worse, but at least he has a sense of humor. Hah.
Speaking of glasses, I am actually getting a new lens made for my right eye now, due to the improvement in my vision after the surgery. (Yay!) The lens hasn't come in yet, but judging from the tests they did at the office when they were determining the new prescription, this lens may come *close* to actually correcting my vision all the way. I AM VERY EXCITED ABOUT THIS, given that I've been walking around half blind since the first surgery, although wearing the non-correcting glasses does give me a chance to experience for entire days the WEIRD EFFECTS of keratoconus that were corrected for the most part by my contacts, such as dots of light looking like outlined ovals of light, or possibly weird geometric shapes of light with the actual dot multiplied four times and connected by more smears of light (I have no idea how to describe this more accurately). Keratoconus is truly a weird, weird thing, people (not that I didn't know that already; I'm just saying). So I'm very excited for the new lens to come in, although OF COURSE it's hella expensive, and, SHOCK, not covered by insurance (even GOOD insurance only ever usually covers one pair of glasses or contacts a year, and with the rapid deterioration of sight before the surgery, I used that up long ago. Not to mention my insurance is kind of terrible anyway, but it was the best I could find given I have to pay it myself). But c'est la vie; I need the lens to see. So there's that.
In other news, while at the clinic, I told the doc about a weird thing that happened to me between one visit and the next: I was baking cookies, and I went to get them out of the oven, and I kid you not, when the heat from the oven hit my eyes (I was wearing my glasses) my right eye, which for the record had been operated on over a month ago at that point, felt like it was on fire. I mean, seriously ON FIRE. Like, BAM, FIRE IN THE FACE. Naturally I went right to the bathroom to flush it with the eyedrops, and after a couple of minutes it felt okay, but still; very weird. AND ON FIRE. They did not seem to have heard of any situations like that before, but said it was nothing to worry about (I mean they looked at the eye and then said that), and that my eye was basically just still healing and therefore more delicate. (Obviously next time I baked I closed my eye when I went to pull things from the oven.)
I mention this because a) weird! and b) I sometimes have a hard time remembering that my eye is still healing, and will be for months, because sometimes it feels just fine, and of course, it looks normal. And let's be honest, I get impatient with being not at 100%, and, as my nice coworker observed with some concern, have a tendency to push myself to get back to normal too quickly. But when something like that happens, or when I wake up every morning and my eye feels all dry and painful, I am reminded that I really need to make sure I am taking good care of it, by doing things like getting enough sleep each night. I'm doing pretty well at that so far, but it's hard not to feel a little guilty about calling in that you will be late to work because you feel like your eye needs more rest (how lame an excuse does that sound?), or not always making your full 40 hours because of it (and it's hard on my paycheck, too, *sigh*). On the other hand, surgery. So I am doing my best to make sure and put the eye-healing before feelings of guilt at missing an hour of work here or there. (And my work has been very nice about it thus far, so I'm very lucky there, and many blessings on them.)
In other strange and interesting developments, apparently my eyes are fond of Optive Refresh eyedrops, but allergic to Systane. I discovered this after using samples of both at different times, and before I figured out what the issue was it was really frustrating, because itchy eyes = wanting to rub my eyes, and you are really NOT supposed to do that after the procedure (or in general, really). So that was a lesson in willpower. But now I've tossed all the Systane and am only using the Optive, and the itching is a lot better (though not totally gone - I am going to revisit the allergy angle at my next appointment in case there is a better alternative, but I did talk to them on the phone about it already). On the amusing side of things, I can tell you I kind of know how drug addicts function now, in that I have "stashes" of eyedrops all over the apartment now. CAN'T BE WITHOUT THEM FOR TOO LOOOOONG, I tell you. So I have six bottles, for work, and my purse, and the bathroom, and my bedroom, and my desk...you get the idea. Hah.
So; back to the evaluation visit I was talking about; after they finished, I went right ahead and scheduled the left eye procedure for "as soon as possible" as per the doc's recommendation, and thus will be having the surgery in the afternoon on December 29th, which gives me about 4 days to recover before going back to work (I'm taking off the 29th - 30th, and the 31st is a federal holiday, so I get that time off as well). Of course, my New Year's will be fairly boring, but hey - the federal holiday means one less day of missed work pay! So.
Naturally after remembering last time's adventures in surgery payment I insisted on sitting down during the same appointment with the finance person, to ensure I don't walk in on December 29th and get a demand for $4000 up front again (gah!). Well. They drive a pretty hard bargain, those eye surgery finance folks, but after a lot of negotiating I managed to get them to agree to charge me $1000 on the 29th, and then $1000 on January 29th, and then $2000 on February 28th. ("Could we do $1000 in February and the last $1000 on March 29th?" "No." "Oh. Okay.") So! At least that's a better schedule than last time, and gives me some time to work out how to pay. The GOOD news is that, thanks to all the wonderful people who donated money to me and/or paid for auction items at foresthouseeyes (thus donating money to me, just in a different manner), I have $1,500 set aside in a separate account, waiting for the next surgery. So I will be able to cover the first month and half of the second month (YAY!!). The not as exciting news is I still don't know how I will cover the rest, not to mention the accompanying missed work and medications and multiple new corrective lenses, which add up a lot more than one might think (I know this from actual experience now thanks to the right eye surgery). So even with the $1,500, I'm looking at about $5,000 more than I will need to have somehow to cover the surgery and all the rest. BUT! At least I have much longer than last time to work on that. So there's that.
SOOOOO. To summarize (sorry for the lengthy post), I am having the next procedure soon, and things are going fairly well with the right eye, but I still need to come up with more moniesssss to pay for the left, but at least I have some time to work on that.
And I think that's all the news for now! Whew.
So I went back to the doc a couple of weeks ago two days after my Great News! visit, to have the evaluation for the left eye, which you need to get done prior to setting up the surgery. As expected, the left eye is a good candidate for the procedure (I wasn't too concerned on that account, because they'd tested it with the right the first time and said it was a good candidate).
What I didn't expect was that the left eye astigmatism was getting worse more quickly than they'd anticipated. They didn't expect it either (clearly) and said that they'd like to get me in as soon as possible to get the left eye procedure done. Currently, as I might have mentioned, I wear my glasses, because after the procedure you can't wear contacts for awhile. So I asked if it might have gotten worse because I am wearing the glasses now, which don't correct all the way or even nearly enough because they couldn't due to my terrible eyesight caused by the keratoconus; but I was told it was not a factor. "So what caused it?" I asked. "You're just special!" the doctor said, cheerfully. Well; he might not know why my eye got worse, but at least he has a sense of humor. Hah.
Speaking of glasses, I am actually getting a new lens made for my right eye now, due to the improvement in my vision after the surgery. (Yay!) The lens hasn't come in yet, but judging from the tests they did at the office when they were determining the new prescription, this lens may come *close* to actually correcting my vision all the way. I AM VERY EXCITED ABOUT THIS, given that I've been walking around half blind since the first surgery, although wearing the non-correcting glasses does give me a chance to experience for entire days the WEIRD EFFECTS of keratoconus that were corrected for the most part by my contacts, such as dots of light looking like outlined ovals of light, or possibly weird geometric shapes of light with the actual dot multiplied four times and connected by more smears of light (I have no idea how to describe this more accurately). Keratoconus is truly a weird, weird thing, people (not that I didn't know that already; I'm just saying). So I'm very excited for the new lens to come in, although OF COURSE it's hella expensive, and, SHOCK, not covered by insurance (even GOOD insurance only ever usually covers one pair of glasses or contacts a year, and with the rapid deterioration of sight before the surgery, I used that up long ago. Not to mention my insurance is kind of terrible anyway, but it was the best I could find given I have to pay it myself). But c'est la vie; I need the lens to see. So there's that.
In other news, while at the clinic, I told the doc about a weird thing that happened to me between one visit and the next: I was baking cookies, and I went to get them out of the oven, and I kid you not, when the heat from the oven hit my eyes (I was wearing my glasses) my right eye, which for the record had been operated on over a month ago at that point, felt like it was on fire. I mean, seriously ON FIRE. Like, BAM, FIRE IN THE FACE. Naturally I went right to the bathroom to flush it with the eyedrops, and after a couple of minutes it felt okay, but still; very weird. AND ON FIRE. They did not seem to have heard of any situations like that before, but said it was nothing to worry about (I mean they looked at the eye and then said that), and that my eye was basically just still healing and therefore more delicate. (Obviously next time I baked I closed my eye when I went to pull things from the oven.)
I mention this because a) weird! and b) I sometimes have a hard time remembering that my eye is still healing, and will be for months, because sometimes it feels just fine, and of course, it looks normal. And let's be honest, I get impatient with being not at 100%, and, as my nice coworker observed with some concern, have a tendency to push myself to get back to normal too quickly. But when something like that happens, or when I wake up every morning and my eye feels all dry and painful, I am reminded that I really need to make sure I am taking good care of it, by doing things like getting enough sleep each night. I'm doing pretty well at that so far, but it's hard not to feel a little guilty about calling in that you will be late to work because you feel like your eye needs more rest (how lame an excuse does that sound?), or not always making your full 40 hours because of it (and it's hard on my paycheck, too, *sigh*). On the other hand, surgery. So I am doing my best to make sure and put the eye-healing before feelings of guilt at missing an hour of work here or there. (And my work has been very nice about it thus far, so I'm very lucky there, and many blessings on them.)
In other strange and interesting developments, apparently my eyes are fond of Optive Refresh eyedrops, but allergic to Systane. I discovered this after using samples of both at different times, and before I figured out what the issue was it was really frustrating, because itchy eyes = wanting to rub my eyes, and you are really NOT supposed to do that after the procedure (or in general, really). So that was a lesson in willpower. But now I've tossed all the Systane and am only using the Optive, and the itching is a lot better (though not totally gone - I am going to revisit the allergy angle at my next appointment in case there is a better alternative, but I did talk to them on the phone about it already). On the amusing side of things, I can tell you I kind of know how drug addicts function now, in that I have "stashes" of eyedrops all over the apartment now. CAN'T BE WITHOUT THEM FOR TOO LOOOOONG, I tell you. So I have six bottles, for work, and my purse, and the bathroom, and my bedroom, and my desk...you get the idea. Hah.
So; back to the evaluation visit I was talking about; after they finished, I went right ahead and scheduled the left eye procedure for "as soon as possible" as per the doc's recommendation, and thus will be having the surgery in the afternoon on December 29th, which gives me about 4 days to recover before going back to work (I'm taking off the 29th - 30th, and the 31st is a federal holiday, so I get that time off as well). Of course, my New Year's will be fairly boring, but hey - the federal holiday means one less day of missed work pay! So.
Naturally after remembering last time's adventures in surgery payment I insisted on sitting down during the same appointment with the finance person, to ensure I don't walk in on December 29th and get a demand for $4000 up front again (gah!). Well. They drive a pretty hard bargain, those eye surgery finance folks, but after a lot of negotiating I managed to get them to agree to charge me $1000 on the 29th, and then $1000 on January 29th, and then $2000 on February 28th. ("Could we do $1000 in February and the last $1000 on March 29th?" "No." "Oh. Okay.") So! At least that's a better schedule than last time, and gives me some time to work out how to pay. The GOOD news is that, thanks to all the wonderful people who donated money to me and/or paid for auction items at foresthouseeyes (thus donating money to me, just in a different manner), I have $1,500 set aside in a separate account, waiting for the next surgery. So I will be able to cover the first month and half of the second month (YAY!!). The not as exciting news is I still don't know how I will cover the rest, not to mention the accompanying missed work and medications and multiple new corrective lenses, which add up a lot more than one might think (I know this from actual experience now thanks to the right eye surgery). So even with the $1,500, I'm looking at about $5,000 more than I will need to have somehow to cover the surgery and all the rest. BUT! At least I have much longer than last time to work on that. So there's that.
SOOOOO. To summarize (sorry for the lengthy post), I am having the next procedure soon, and things are going fairly well with the right eye, but I still need to come up with more moniesssss to pay for the left, but at least I have some time to work on that.
And I think that's all the news for now! Whew.