Eye see what you did there
September 17, 2013 8:31 AM Subscribe
I recently discovered that I have diabetic retinopathy. I have been a diabetic for the last fifteen years or so and have feared this moment since my initial diagnosis. Several recent changes to my vision have caused me problems and I am trying to learn to cope with this new development. (Apologies in advance for the flurry of snowflakes inside)
My oral medications had not been working as well as they once had and my doctor recently (within the last two months) switched me to insulin therapy for the treatment of my diabetes. I suppose that my blood sugar had not been in as good control as it should have been and I am now suffering with problems related to my vision. I have several permanent spots in my right eye that drive me to distraction. Thankfully, they are small and don’t completely occlude my vision, but it is frustrating to deal with. They are most noticeable when I have to read or do detail work and prevent me from seeing letters completely. If I move my eye a bit I can make out the letter and word but it stresses me out and depresses me to realize that this is now my reality. If I manage to forget about the spots for a few moments, I look at something else and see them and the despair and frustration wash over me anew.
Losing my vision has ALWAYS been my biggest fear and now this seems a very real possibility. The frustration over these spots and the fear that my vision will worsen practically consume me. As a child, my left eye was diagnosed as a “lazy eye” and I have terrible vision in it. You know how your television looks all grainy and filled with “static” when the cable goes out? That’s how I see through my left eye. If my vision were better there I suppose it wouldn’t bother me as much because my left eye could compensate, but that’s not really a possibility here.
I am very depressed now and have been reduced to tears more times than I care to think about. I worry about becoming a burden to those around me and becoming even more closed off from the world than I already am. How will I function in a world made for sighted people? How will I send emails? Text messages? I love to knit and crochet and, sadly, those will have to go. I fear being locked away in a dark world at the mercy of other people.
Good people of AskMe, what do I do? I know that you are not my doctor, of course, but I will take any advice I can get. How can I cope with this change to my world? How can I not be resentful and angry and move forward? Should I resign myself to the fact that I will be blind before long?
My oral medications had not been working as well as they once had and my doctor recently (within the last two months) switched me to insulin therapy for the treatment of my diabetes. I suppose that my blood sugar had not been in as good control as it should have been and I am now suffering with problems related to my vision. I have several permanent spots in my right eye that drive me to distraction. Thankfully, they are small and don’t completely occlude my vision, but it is frustrating to deal with. They are most noticeable when I have to read or do detail work and prevent me from seeing letters completely. If I move my eye a bit I can make out the letter and word but it stresses me out and depresses me to realize that this is now my reality. If I manage to forget about the spots for a few moments, I look at something else and see them and the despair and frustration wash over me anew.
Losing my vision has ALWAYS been my biggest fear and now this seems a very real possibility. The frustration over these spots and the fear that my vision will worsen practically consume me. As a child, my left eye was diagnosed as a “lazy eye” and I have terrible vision in it. You know how your television looks all grainy and filled with “static” when the cable goes out? That’s how I see through my left eye. If my vision were better there I suppose it wouldn’t bother me as much because my left eye could compensate, but that’s not really a possibility here.
I am very depressed now and have been reduced to tears more times than I care to think about. I worry about becoming a burden to those around me and becoming even more closed off from the world than I already am. How will I function in a world made for sighted people? How will I send emails? Text messages? I love to knit and crochet and, sadly, those will have to go. I fear being locked away in a dark world at the mercy of other people.
Good people of AskMe, what do I do? I know that you are not my doctor, of course, but I will take any advice I can get. How can I cope with this change to my world? How can I not be resentful and angry and move forward? Should I resign myself to the fact that I will be blind before long?
Best answer: My understanding is that there have been a lot of advances in the management of retinopathy and if you keep your A1Cs under 6 going forward you stand a very good chance of maintaining your vision. My wife has been Type 1 for over 30 years so this is something we think about too. However, my wife has been OCD about her blood sugar for 30+ years and so far no signs of retinopathy at all.
So to answer you what do I do question. You fight. You don't give in. You change your lifestyle to make blood sugar control your over riding concern 24 X 7. You don't ever get a day off from diabetes. It sucks, but there is nothing you can do about the cards you were dealt. You do control how you play those cards though.
posted by COD at 9:39 AM on September 17, 2013 [1 favorite]
So to answer you what do I do question. You fight. You don't give in. You change your lifestyle to make blood sugar control your over riding concern 24 X 7. You don't ever get a day off from diabetes. It sucks, but there is nothing you can do about the cards you were dealt. You do control how you play those cards though.
posted by COD at 9:39 AM on September 17, 2013 [1 favorite]
Best answer: People with vision problems lead fulfilling lives. I hope you avoid any further deterioration but even if you did, you would not be locked in a dark world at the mercy of strangers, you would learn to adapt.
Being very vigilant of your blood sugar sounds sensible. And to me, so does adapting to any irreversible damage you have now. And making sure your sight is optimised. If tiny print is problematic, magnify it. If you need to wear glasses or contacts generally, then wear them.
You are a resourceful and resilient person. You will be fine.
posted by plonkee at 9:54 AM on September 17, 2013
Being very vigilant of your blood sugar sounds sensible. And to me, so does adapting to any irreversible damage you have now. And making sure your sight is optimised. If tiny print is problematic, magnify it. If you need to wear glasses or contacts generally, then wear them.
You are a resourceful and resilient person. You will be fine.
posted by plonkee at 9:54 AM on September 17, 2013
Best answer: I am very depressed now and have been reduced to tears more times than I care to think about. I worry about becoming a burden to those around me and becoming even more closed off from the world than I already am. How will I function in a world made for sighted people? How will I send emails? Text messages? I love to knit and crochet and, sadly, those will have to go. I fear being locked away in a dark world at the mercy of other people.
I manage a computer training program for an organization that employs mostly blind, low-vision, deaf-blind, and blind with other disabilities employees. I interact with folks on a daily basis who are anywhere from legally blind with some degree of usable vision, to fully blind and profoundly deaf, dealing with the same sorts of challenges and worries, but who are living full, self-possessed vibrant lives.
You'll still be able to do all of those things, you'll just need to find ways to adapt. Luckily there's never been a better time technologically speaking, to be dealing with this sort of vision transition. Your options are many. For computer work, you can look into screen magnification software like ZoomText, or full audio screen readers like JAWS, NVDA, or SystemAccess.
Text messaging? I have many fully blind coworkers using iPhones with VoiceOver who can send a text message faster than I can as a person who is sighted.
Reading? Looks like you live in Alabama. Have you contacted your regional Library for the Blind and Physically Handicapped? You're very likely eligible for an account, wherein you can receive braille, large print, and audio book materials by mail free of charge. Works just like Netflix. They'll even send you one of the cool new NLS Digital Talking Book players, also free of charge, which can play a wide variety of digital talking book, audio book, and other digital audio content.
Finally, if you haven't yet, look into joining one of the two big national consumer organizations for the blind - the National Federation of the Blind, or the American Council of the Blind. They have similar goals, but their approaches and philosophies differ, so it's worth looking into both to see which organization's approach feels like a fit for you. Either will be a great resource to you in finding supports and resources for dealing with a changing vision status.
Best of luck to you!!
posted by stenseng at 10:16 AM on September 17, 2013 [5 favorites]
I manage a computer training program for an organization that employs mostly blind, low-vision, deaf-blind, and blind with other disabilities employees. I interact with folks on a daily basis who are anywhere from legally blind with some degree of usable vision, to fully blind and profoundly deaf, dealing with the same sorts of challenges and worries, but who are living full, self-possessed vibrant lives.
You'll still be able to do all of those things, you'll just need to find ways to adapt. Luckily there's never been a better time technologically speaking, to be dealing with this sort of vision transition. Your options are many. For computer work, you can look into screen magnification software like ZoomText, or full audio screen readers like JAWS, NVDA, or SystemAccess.
Text messaging? I have many fully blind coworkers using iPhones with VoiceOver who can send a text message faster than I can as a person who is sighted.
Reading? Looks like you live in Alabama. Have you contacted your regional Library for the Blind and Physically Handicapped? You're very likely eligible for an account, wherein you can receive braille, large print, and audio book materials by mail free of charge. Works just like Netflix. They'll even send you one of the cool new NLS Digital Talking Book players, also free of charge, which can play a wide variety of digital talking book, audio book, and other digital audio content.
Finally, if you haven't yet, look into joining one of the two big national consumer organizations for the blind - the National Federation of the Blind, or the American Council of the Blind. They have similar goals, but their approaches and philosophies differ, so it's worth looking into both to see which organization's approach feels like a fit for you. Either will be a great resource to you in finding supports and resources for dealing with a changing vision status.
Best of luck to you!!
posted by stenseng at 10:16 AM on September 17, 2013 [5 favorites]
Best answer: Should I resign myself to the fact that I will be blind before long?
No, because you don't know that at all. My father had retinopathy for decades, not from diabetes but from a vascular condition. He already had zero vision in one eye at the outset. He did become legally blind in his 70s but it was a long long process with a lot of ups and downs. Even at the worst he could get around, see who was talking to him, etc. When he was declared legally blind, he became an enthusiastic consumer of services like talking books. He was never someone who handled medical stuff very well but with this, he got help and navigated it pretty well when the time came.
How can I not be resentful and angry and move forward?
Ah, let yourself be angry for a while. This is a huge pain in the ass and you don't need to compound it by beating yourself for not moving forward immediately.
posted by BibiRose at 11:21 AM on September 17, 2013 [1 favorite]
No, because you don't know that at all. My father had retinopathy for decades, not from diabetes but from a vascular condition. He already had zero vision in one eye at the outset. He did become legally blind in his 70s but it was a long long process with a lot of ups and downs. Even at the worst he could get around, see who was talking to him, etc. When he was declared legally blind, he became an enthusiastic consumer of services like talking books. He was never someone who handled medical stuff very well but with this, he got help and navigated it pretty well when the time came.
How can I not be resentful and angry and move forward?
Ah, let yourself be angry for a while. This is a huge pain in the ass and you don't need to compound it by beating yourself for not moving forward immediately.
posted by BibiRose at 11:21 AM on September 17, 2013 [1 favorite]
Best answer: You have a lot of power right now. You can make changes to your behavior to ensure tight blood sugar control from here forward. By making those changes, you will delay worsening vision problems and prevent other complications of diabetes such as infections and disability. Switching to insulin is a good thing - you can achieve better blood sugar control with insulin than with oral medications, and your body processes insulin better.
Right now, your task is to take charge of your health, starting today. Do you forget to take meds? You need systems to overcome that forgetfulness or avoidance. Ask a friend or family member to hold you accountable, calling at the end of each day for a medication report. Set alarms for yourself. Leave notes for yourself. Join online diabetic support communities. Join in person support groups. Ask your doctor if they know if classes in the community (or through your health plan) so you can better understand your disease. Chose 2 things to do TODAY about your diabetes. Then choose 2 things to do tomorrow about it. And so forth. Do not procrastinate - you can make a difference right now to ensure you stay well longer. The small actions you take each day have an enormous impact on what kind of future you will have. This event proves that.
You can do this.
posted by latkes at 11:54 AM on September 17, 2013 [1 favorite]
Right now, your task is to take charge of your health, starting today. Do you forget to take meds? You need systems to overcome that forgetfulness or avoidance. Ask a friend or family member to hold you accountable, calling at the end of each day for a medication report. Set alarms for yourself. Leave notes for yourself. Join online diabetic support communities. Join in person support groups. Ask your doctor if they know if classes in the community (or through your health plan) so you can better understand your disease. Chose 2 things to do TODAY about your diabetes. Then choose 2 things to do tomorrow about it. And so forth. Do not procrastinate - you can make a difference right now to ensure you stay well longer. The small actions you take each day have an enormous impact on what kind of future you will have. This event proves that.
You can do this.
posted by latkes at 11:54 AM on September 17, 2013 [1 favorite]
Best answer: You will be angry for a while that, to me is a perfectly normal reaction. My mother has been a type 1 diabetic and has been since her early 20's she is now 72 years old. She was diagnosed with diabetic retinopathy about 25 or so years ago and was told at the time she would be completely blind in 5 years. She was lucky and got a very good eye doctor very early on and got a lot of, what was at the time, cutting edge treatments and still retains some of her sight. Now 25 years later she is legally blind but see's well enough to live alone, paint and read, though she does have to read large print books, she travels the world and is still as independent as the next person, most people are surprised on meeting her to find out she has vision problems.
Now this knowledge comes from what I've gleaned talking to my mother so please find yourself a specialist and talk to them I cannot overstate this enough there is a lot they can do to slow things down. I don't think there is anything that can reverse damage as yet, but there is a lot of work being done with lasers to help slow things down. When my mother started these treatments many years ago the repairs they did often made the vision worse, but now a days they have such accurate lasers she comes out of the doctors thrilled at how good her eyes are. She goes to see her eye doctor for a check up every 6 months and has laser treatments as needed. Her doctor is also working on a trial using drugs used to treat tumors injected into the eye to help minimize damage, and gets a regular stream of patients flying in from the US for treatments, my mother volunteered for this but unfortunately she was not a good candidate. in other words, there is a lot they can do to slow things down, and a lot of new treatments coming down the pipeline.
So do I think you should resign yourself to being blind before long, no, I do think you need to hunt down some specialists and get some more information about your condition before you resign yourself to anything. While you may not be able to stop the condition completely there is a heck of a lot that is in your control to do about slowing it down. Start by controlling your blood sugar levels (something my mother even after 50 years of diabetes is terrible at as she is always "too busy"), and then find a doctor that specializes in treating this condition, your diabetic doctor should be able to recommend one, and see what can be done.
If you have any questions MeMail me and I can ask my mother for more detailed information.
posted by wwax at 12:06 PM on September 17, 2013 [1 favorite]
Now this knowledge comes from what I've gleaned talking to my mother so please find yourself a specialist and talk to them I cannot overstate this enough there is a lot they can do to slow things down. I don't think there is anything that can reverse damage as yet, but there is a lot of work being done with lasers to help slow things down. When my mother started these treatments many years ago the repairs they did often made the vision worse, but now a days they have such accurate lasers she comes out of the doctors thrilled at how good her eyes are. She goes to see her eye doctor for a check up every 6 months and has laser treatments as needed. Her doctor is also working on a trial using drugs used to treat tumors injected into the eye to help minimize damage, and gets a regular stream of patients flying in from the US for treatments, my mother volunteered for this but unfortunately she was not a good candidate. in other words, there is a lot they can do to slow things down, and a lot of new treatments coming down the pipeline.
So do I think you should resign yourself to being blind before long, no, I do think you need to hunt down some specialists and get some more information about your condition before you resign yourself to anything. While you may not be able to stop the condition completely there is a heck of a lot that is in your control to do about slowing it down. Start by controlling your blood sugar levels (something my mother even after 50 years of diabetes is terrible at as she is always "too busy"), and then find a doctor that specializes in treating this condition, your diabetic doctor should be able to recommend one, and see what can be done.
If you have any questions MeMail me and I can ask my mother for more detailed information.
posted by wwax at 12:06 PM on September 17, 2013 [1 favorite]
Best answer: I could have written this question last January. I'm only 30, but I've been a Type 2 diabetic for 16 years.
After a few years of not-great blood sugar control, I switched to an insulin regime that gave me fantastic blood sugar control almost overnight. It's most likely this rapid change in glucose levels (from a high a1c to a normal a1c in a period of just a couple of months) that caused my retinopathy. I'd had my eyes checked less than a year prior to noticing some blurred vision that sent me back to the eye doctor. They patted me on the head and told me my a1c was good and I was probably fine, then reluctantly did an exam anyway. It wasn't fine. I had serious signs of retinopathy.
I cried. I panicked. I was scared. I was angry. And then I found the best specialist I could find, because I wasn't going to just sit back and go blind at age 30.
My symptoms sound similar to yours. For me, my right eye is worse than the left. The blurriness that sent me to the eye doctor in the first place is almost gone, but I do have dark spots or lines in my field of vision. They're distracting, but they come and go. You should know that they may still spontaneously resolve themselves--once the leaky blood vessels are treated, a good portion of the blood can be reabsorbed (those spots are blood in the vitreous). Just because you see spots now doesn't mean you always will (There are also surgery options to treat large amounts of blood in the vitreous, but that's an extreme option). I've also learned to look past them most of the time. I still read, I still drive, I still watch TV, text, everything I always did. I have to move my head more to get the same range of peripheral vision, but you'll be surprised at how well you begin to compensate without even realizing it. In the left eye, I still have 20/20 vision, but they did treatments anyway to maintain the status quo.
I've had laser treatments and injections in both eyes. The treatments are not enjoyable, but they're not horrible, they do help, and I have mostly made my peace with them. Both types of treatments were incredibly stressful for me because I have almost phobia-level aversion to things touching my eyes. If you've seen that Friends episode where they all physically have to hold Rachel down to put eye drops in her eyes, that's me! My friends don't even discuss their contact lenses in my presence. Hopefully you don't have that level of panic to deal with when it comes to the treatment options. Even I've been able to overcome it, though, and if you'd asked me prior to this whether I'd rather get hit by a bus or have an injection in the eye, I would have had to think twice about it.
With treatment and blood sugar control, my specialist believes I can maintain my current level of vision for a very long time, if not indefinitely. I've seen some vision improvement, in fact. Though I have had a couple of small setbacks, I'm not as scared as I was at the outset, and it's not quite the disaster that it seemed. It gets to me from time to time, and I have to keep up with treatments and my diabetes, but for the most part, I just go about my regular life.
In terms of what you should do now: Find a specialist. Let yourself be angry, hurt, whatever you need to feel, and then move on. Find a way to be hopeful. There are so many treatment options available to you. It's not a given that you'll go blind. There are things you can do to stop this thing in its tracks, and you CAN do them. Hang in there.
Feel free to MeMail me if you have any questions at all.
posted by terilou at 1:18 PM on September 17, 2013 [5 favorites]
After a few years of not-great blood sugar control, I switched to an insulin regime that gave me fantastic blood sugar control almost overnight. It's most likely this rapid change in glucose levels (from a high a1c to a normal a1c in a period of just a couple of months) that caused my retinopathy. I'd had my eyes checked less than a year prior to noticing some blurred vision that sent me back to the eye doctor. They patted me on the head and told me my a1c was good and I was probably fine, then reluctantly did an exam anyway. It wasn't fine. I had serious signs of retinopathy.
I cried. I panicked. I was scared. I was angry. And then I found the best specialist I could find, because I wasn't going to just sit back and go blind at age 30.
My symptoms sound similar to yours. For me, my right eye is worse than the left. The blurriness that sent me to the eye doctor in the first place is almost gone, but I do have dark spots or lines in my field of vision. They're distracting, but they come and go. You should know that they may still spontaneously resolve themselves--once the leaky blood vessels are treated, a good portion of the blood can be reabsorbed (those spots are blood in the vitreous). Just because you see spots now doesn't mean you always will (There are also surgery options to treat large amounts of blood in the vitreous, but that's an extreme option). I've also learned to look past them most of the time. I still read, I still drive, I still watch TV, text, everything I always did. I have to move my head more to get the same range of peripheral vision, but you'll be surprised at how well you begin to compensate without even realizing it. In the left eye, I still have 20/20 vision, but they did treatments anyway to maintain the status quo.
I've had laser treatments and injections in both eyes. The treatments are not enjoyable, but they're not horrible, they do help, and I have mostly made my peace with them. Both types of treatments were incredibly stressful for me because I have almost phobia-level aversion to things touching my eyes. If you've seen that Friends episode where they all physically have to hold Rachel down to put eye drops in her eyes, that's me! My friends don't even discuss their contact lenses in my presence. Hopefully you don't have that level of panic to deal with when it comes to the treatment options. Even I've been able to overcome it, though, and if you'd asked me prior to this whether I'd rather get hit by a bus or have an injection in the eye, I would have had to think twice about it.
With treatment and blood sugar control, my specialist believes I can maintain my current level of vision for a very long time, if not indefinitely. I've seen some vision improvement, in fact. Though I have had a couple of small setbacks, I'm not as scared as I was at the outset, and it's not quite the disaster that it seemed. It gets to me from time to time, and I have to keep up with treatments and my diabetes, but for the most part, I just go about my regular life.
In terms of what you should do now: Find a specialist. Let yourself be angry, hurt, whatever you need to feel, and then move on. Find a way to be hopeful. There are so many treatment options available to you. It's not a given that you'll go blind. There are things you can do to stop this thing in its tracks, and you CAN do them. Hang in there.
Feel free to MeMail me if you have any questions at all.
posted by terilou at 1:18 PM on September 17, 2013 [5 favorites]
I would make an appointment with an occupational therapist. This is exactly what they do!
posted by Houstonian at 3:35 PM on September 17, 2013
posted by Houstonian at 3:35 PM on September 17, 2013
We have had a few questions over the years from people contemplating medical conditions that may lead to them losing vision or going blind. Several such questions are under the blindness tag and might have answers/stories that could be useful for you.
posted by LobsterMitten at 3:37 PM on September 17, 2013
posted by LobsterMitten at 3:37 PM on September 17, 2013
Best answer: What a lot of good advice!! I hope you take it and I hope that you never lose your sight.
My advice is in the other direction. After you are done being mad (and I fully support you taking as much time as you need to be mad - this sucks) I think you should move toward preparing in advance for the possibility that you might lose your sight. Then make a plan.
As you go through your day, make a list of all the things that you do and ask yourself: how would I do that if I were blind. Add everything from the list of things in your question, too. For each thing on your list make a plan and practice it:
eg How will I do email? Well, contact one of those organizations that stengsen mentioned or use Google or see an occupational therapist and figure it out: How do blind people do email? Find the software package that reads your computer text. Install it on your computer and spend some time each day (5 minutes? 30?) practicing with a blindfold to see if you can launch it and use it. You have an advantage over someone who is learning this while they are already blind, because you can peek if you get stuck and then try again the next time with the blindfold. Don't fully rely on the cheating, but practice until you are good at it.
I think you should do this practice even while you are relentlessly pursuing advanced medical treatment and meticulous blood sugar management. I don't know the statistics for how many people lose all their sight after experiencing your symptoms or how long it might take. But I would play the odds and try to stack the deck in my favor so that if I did lose my sight I would be ready.
Best of luck to you.
posted by CathyG at 6:27 PM on September 17, 2013
My advice is in the other direction. After you are done being mad (and I fully support you taking as much time as you need to be mad - this sucks) I think you should move toward preparing in advance for the possibility that you might lose your sight. Then make a plan.
As you go through your day, make a list of all the things that you do and ask yourself: how would I do that if I were blind. Add everything from the list of things in your question, too. For each thing on your list make a plan and practice it:
eg How will I do email? Well, contact one of those organizations that stengsen mentioned or use Google or see an occupational therapist and figure it out: How do blind people do email? Find the software package that reads your computer text. Install it on your computer and spend some time each day (5 minutes? 30?) practicing with a blindfold to see if you can launch it and use it. You have an advantage over someone who is learning this while they are already blind, because you can peek if you get stuck and then try again the next time with the blindfold. Don't fully rely on the cheating, but practice until you are good at it.
I think you should do this practice even while you are relentlessly pursuing advanced medical treatment and meticulous blood sugar management. I don't know the statistics for how many people lose all their sight after experiencing your symptoms or how long it might take. But I would play the odds and try to stack the deck in my favor so that if I did lose my sight I would be ready.
Best of luck to you.
posted by CathyG at 6:27 PM on September 17, 2013
Response by poster: I want to take a minute to thank everyone for their comments so far. I'm still reeling from all of this and being able to check in here throughout the day to read the responses has been immensely helpful.
I want to take my time and formulate thoughtful responses to all of you but the very first thing I want to do is contact another specialist and meet with him or her.
Thanks again, everyone.
posted by BrianJ at 9:07 PM on September 17, 2013
I want to take my time and formulate thoughtful responses to all of you but the very first thing I want to do is contact another specialist and meet with him or her.
Thanks again, everyone.
posted by BrianJ at 9:07 PM on September 17, 2013
This thread is closed to new comments.
* you had ~15 years of good vision;
* the problem with your glucose was identified before things got worse;
* your meds have been changed to prevent more damage;
* you have two eyes, & your vision may not be 100% but it isn't 0% either;
* you now have a chance to further improve your diet and lifestyle to prevent additional damage.
posted by thermonuclear.jive.turkey at 9:02 AM on September 17, 2013 [4 favorites]