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Welp
OK. Don't have time or patience to write a full entry, so (in case people who know me check this and not facebook, which is unlikely but possible) I'm going to just copy paste what I put on facebook vebatim.
Originally posted 12/14/2018 8:27 AM local time:
Post begins here
So I've been wondering, since I got the news yesterday, how or if to tell people. This facebook post that results is long, but it needs to be.
For those who don't remember from when I was a kid (or never knew me then and somehow never learned the basics of my vision situation since I've known you, if you've known me for any length of time - for most of you, most of this will be stuff you already know), I was born 94 days premature, and spent the first while in an incubator. In 1983, this meant pure oxygen, something they don't do today - why will become immediately apparent in the next paragraph.
When I was 2 and a half months old, probably as a result of the pure oxygen in the incubator (as wikipedia confirms), it was discovered that the retinas in both of my eyes were detaching, a condition known as retinopathy of prematurity. A trip from Monmouth Medical's NICU to Mount Sinai in NYC followed, where I had surgery on my eyes to limit the detachment. I'll skip the technical details, they aren't completely relevant. In my left eye, the result is, I can see - not fully, not with full field of vision, but I can see. If you've known me in real life, or even for a long time over the internet, you're familiar with the quirks I occasionally mention about it, especially with combined with my other diagnoses, both eye diagnoses (I have astigmatism and horizontal nystagmus (in other words, horizontal nystagmus means my eyes sort of twitch horizontally)) and everything else. In the right eye, I'm basically blind, except for a limited ability to perceive light.
This is all known and stable. For the last few years, I've been seeing Dr. Norman Einhorn, an optometrist in Belmar. We've been doing things that helped by visual acuity (in simple terms, the eye chart everybody knows) improve from about 20/80 or 20/70 corrected in my good eye to as high as 20/50, as well as open up my field of vision slightly. It's not a miracle, I'm still legally blind, I'll never drive or anything, but when you're in your 30s and have been told "your vision will be stable from your teenage years until your 40s or 50s when you get hit by aging like anyone else" for decades, and then someone (basically taking a chance on me, because the data proves the effectiveness of the procedures we did only on kids - for adults, well, he figured it was worth a shot, so did I, and Medicare and other insurance cover it) helps you actually nudge your vision to improve a bit, you'll take it. And I did and do.
So, finishing up my treatments with him and prepping for my move to Florida, I saw him yesterday for an eye exam. What most people get every year or two, what I'd ordinarily get every year from any other eye doctor, he does every few months with me, in terms of a full eye exam - to see how our treatment plan is working, if it's working, and generally to keep an eye on things.
Thank God he does that. Dr. Einhorn is a doc who works specifically on low-vision cases, most commonly for adults in people who've had strokes or similar (but also some kids). It's a busy practice, he was booked solid, but we did the initial eye chart (which went badly - last time I was at 20/50, this time I was at 20/60 and that was a bit of a struggle), he paid attention to me saying "I have no transportation worries, let's dilate today and do the full exam today if we can" (he had wanted to put it off and have me come in next week for that part - totally reasonable, but in hindsight probably for the best we didn't put it off), he dilated my eyes as happens to everybody (and yes it sucks for me too, I had dilation done around 1115 AM and I couldn't bear light for any length of time til 4 or 5 PM), I went out to wait, he saw other people, and then I went back in and we took a look.
In June, he did the eye dilation and resulting exams and found I had the very early stages of cataracts in my left eye - for those following along from above, that's my *good* eye. That was a bit concerning to me, because I knew cataracts mean surgery, but he reassured me that in most cases, it was ways away from needing intervention of any sort.
Yesterday, he looked again. I looked at the pictures along with him - another point I have to give Dr. Einhorn major kudos for, he knew I wasn't phased by the medical jargon and the deep details and, to an extent, made sure I saw the evidence for his conclusions myself. The cataract has grown, a lot.
As I put it to Rebekka Puig and Pat Buckley yesterday (slightly edited for clarity):
"The cataract is so bad there's no real question: I need surgery. Because of my eye history and the fact we'll be doing surgery on the only eye I see with, this means a quick procedure done by any ophthalmologist is out of the question. There are tons of ways the surgery could go wrong, and unless it goes off with flying colors in a very specific way, I am at a minimum at a risk of the surgery causing further retinal issues (at least), or in the worst case scenarios costing me what vision I have left. (On the other hand, if I don't do the surgery, I will certainly go blind.)"
He's recommending I go to a major eye hospital (UMHC Bascom Palmer Eye Institute) in Miami - and he'll be finding me an eye surgeon to get a consult with himself, rather than having me or anyone else do it.
So far so good, but...if this goes badly, or even "Good, but not perfect", I could wind up blind. Like I put it to my dad, 9999 ways it can go wrong, only 1 way it can go right.
Intellectually, I know I'll get the best care American medicine can give thanks to dad having me on his insurance. (The Federal Employee Program of Blue Cross Blue Shield - they've covered me since I was a baby, and while we've had our battles with em, and they aren't exactly cheap, I'm right now thanking God that the federal Office of Personnel Management (the government's HR people) let dad keep me on that insurance. If I were dealing with *just* Medicare and Medicaid, I probably would be screwed.)
Emotionally, though, I am freaking out. My mom and dad are trying to be reassuring, Rebekka's been amazing, and Pat (along with Lisa Scardino) has been great along with Gray Anderson...But even 20-24 hours later, I am worried.
I don't know how this will turn out. I left the Dr's office yesterday being brave, and calm...but then, I went to the nearby Dunkin donuts and I could just feel my nervousness *before* I had a sip of coffee. Not crying, but definitely scared. I still am.
For those wondering how to react, what to say: Just say what comes to mind. I am posting this because, over the next few months, if you don't know this is happening "in the background", a lot might not make sense about me and how I'm thinking. I can tell you right now, this turns my nervousness re the move to Florida from "eh, manageable, normal, expected, 4 or 5" up past 10 to a 13 or 15. I'm still doing it, can't not do it, but yeah. Right now, my mind wants to make it all go away.
Post ends here
And to update in the week since: Still waiting on the optometrist mentioned above to get back to me. Know he's busy so not too worried, but am slightly frustrated since I was hoping to get everything set up re appointments before I move to Florida in the first days of January.
Originally posted 12/14/2018 8:27 AM local time:
Post begins here
So I've been wondering, since I got the news yesterday, how or if to tell people. This facebook post that results is long, but it needs to be.
For those who don't remember from when I was a kid (or never knew me then and somehow never learned the basics of my vision situation since I've known you, if you've known me for any length of time - for most of you, most of this will be stuff you already know), I was born 94 days premature, and spent the first while in an incubator. In 1983, this meant pure oxygen, something they don't do today - why will become immediately apparent in the next paragraph.
When I was 2 and a half months old, probably as a result of the pure oxygen in the incubator (as wikipedia confirms), it was discovered that the retinas in both of my eyes were detaching, a condition known as retinopathy of prematurity. A trip from Monmouth Medical's NICU to Mount Sinai in NYC followed, where I had surgery on my eyes to limit the detachment. I'll skip the technical details, they aren't completely relevant. In my left eye, the result is, I can see - not fully, not with full field of vision, but I can see. If you've known me in real life, or even for a long time over the internet, you're familiar with the quirks I occasionally mention about it, especially with combined with my other diagnoses, both eye diagnoses (I have astigmatism and horizontal nystagmus (in other words, horizontal nystagmus means my eyes sort of twitch horizontally)) and everything else. In the right eye, I'm basically blind, except for a limited ability to perceive light.
This is all known and stable. For the last few years, I've been seeing Dr. Norman Einhorn, an optometrist in Belmar. We've been doing things that helped by visual acuity (in simple terms, the eye chart everybody knows) improve from about 20/80 or 20/70 corrected in my good eye to as high as 20/50, as well as open up my field of vision slightly. It's not a miracle, I'm still legally blind, I'll never drive or anything, but when you're in your 30s and have been told "your vision will be stable from your teenage years until your 40s or 50s when you get hit by aging like anyone else" for decades, and then someone (basically taking a chance on me, because the data proves the effectiveness of the procedures we did only on kids - for adults, well, he figured it was worth a shot, so did I, and Medicare and other insurance cover it) helps you actually nudge your vision to improve a bit, you'll take it. And I did and do.
So, finishing up my treatments with him and prepping for my move to Florida, I saw him yesterday for an eye exam. What most people get every year or two, what I'd ordinarily get every year from any other eye doctor, he does every few months with me, in terms of a full eye exam - to see how our treatment plan is working, if it's working, and generally to keep an eye on things.
Thank God he does that. Dr. Einhorn is a doc who works specifically on low-vision cases, most commonly for adults in people who've had strokes or similar (but also some kids). It's a busy practice, he was booked solid, but we did the initial eye chart (which went badly - last time I was at 20/50, this time I was at 20/60 and that was a bit of a struggle), he paid attention to me saying "I have no transportation worries, let's dilate today and do the full exam today if we can" (he had wanted to put it off and have me come in next week for that part - totally reasonable, but in hindsight probably for the best we didn't put it off), he dilated my eyes as happens to everybody (and yes it sucks for me too, I had dilation done around 1115 AM and I couldn't bear light for any length of time til 4 or 5 PM), I went out to wait, he saw other people, and then I went back in and we took a look.
In June, he did the eye dilation and resulting exams and found I had the very early stages of cataracts in my left eye - for those following along from above, that's my *good* eye. That was a bit concerning to me, because I knew cataracts mean surgery, but he reassured me that in most cases, it was ways away from needing intervention of any sort.
Yesterday, he looked again. I looked at the pictures along with him - another point I have to give Dr. Einhorn major kudos for, he knew I wasn't phased by the medical jargon and the deep details and, to an extent, made sure I saw the evidence for his conclusions myself. The cataract has grown, a lot.
As I put it to Rebekka Puig and Pat Buckley yesterday (slightly edited for clarity):
"The cataract is so bad there's no real question: I need surgery. Because of my eye history and the fact we'll be doing surgery on the only eye I see with, this means a quick procedure done by any ophthalmologist is out of the question. There are tons of ways the surgery could go wrong, and unless it goes off with flying colors in a very specific way, I am at a minimum at a risk of the surgery causing further retinal issues (at least), or in the worst case scenarios costing me what vision I have left. (On the other hand, if I don't do the surgery, I will certainly go blind.)"
He's recommending I go to a major eye hospital (UMHC Bascom Palmer Eye Institute) in Miami - and he'll be finding me an eye surgeon to get a consult with himself, rather than having me or anyone else do it.
So far so good, but...if this goes badly, or even "Good, but not perfect", I could wind up blind. Like I put it to my dad, 9999 ways it can go wrong, only 1 way it can go right.
Intellectually, I know I'll get the best care American medicine can give thanks to dad having me on his insurance. (The Federal Employee Program of Blue Cross Blue Shield - they've covered me since I was a baby, and while we've had our battles with em, and they aren't exactly cheap, I'm right now thanking God that the federal Office of Personnel Management (the government's HR people) let dad keep me on that insurance. If I were dealing with *just* Medicare and Medicaid, I probably would be screwed.)
Emotionally, though, I am freaking out. My mom and dad are trying to be reassuring, Rebekka's been amazing, and Pat (along with Lisa Scardino) has been great along with Gray Anderson...But even 20-24 hours later, I am worried.
I don't know how this will turn out. I left the Dr's office yesterday being brave, and calm...but then, I went to the nearby Dunkin donuts and I could just feel my nervousness *before* I had a sip of coffee. Not crying, but definitely scared. I still am.
For those wondering how to react, what to say: Just say what comes to mind. I am posting this because, over the next few months, if you don't know this is happening "in the background", a lot might not make sense about me and how I'm thinking. I can tell you right now, this turns my nervousness re the move to Florida from "eh, manageable, normal, expected, 4 or 5" up past 10 to a 13 or 15. I'm still doing it, can't not do it, but yeah. Right now, my mind wants to make it all go away.
Post ends here
And to update in the week since: Still waiting on the optometrist mentioned above to get back to me. Know he's busy so not too worried, but am slightly frustrated since I was hoping to get everything set up re appointments before I move to Florida in the first days of January.