The Slow Path to Blindness

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This was originally posted to my blog, Diabetes Odyssey.

I had my regular every eight weeks eye appointment today. I have proliferative diabetic retinopathy in both eyes and have been on a journey full of eye appointments, surgeries, laser treatments, and injections for almost two years now. The point is to try to preserve what vision I have left.

The appointment went as usual, vision test, numbing drops, eye pressure, dilation, wait, eye scan, wait, more numbing drops, numbing gel, wait with eyes closed, then the doctor came in and she informed me that my right eye is swelling more. We aren’t too worried since my right eye is so far gone already that I can’t see more than light and movement anyway, but we do want to save that much, so she suggested I start to use steroid drops and we’ll see if that helps the swelling. And instead of Avastin injections every eight weeks in that eye, she suggested using a more aggressive steroid injection every four to six months.

I said why not.

As for my left eye, the only good one I have left, she was happy to report that it is holding steady but since I reported that the tiny blind spot began to show again as of yesterday, she suggested continuing to have the Avastin injections every eight weeks in that eye.

I said why not.

After a quick exam she made her final notes and OK’d the steroid prescription. Then she gave me my injections in each eye.

She said she was glad I still have good vision in my left eye and there is no reason I can’t do anything I want in life, except be a surgeon. I said I am thinking about eventually getting my driver license back and she said there is no reason I can’t drive. I replied that I’m just not comfortable because my depth perception and peripheral vision is so bad I run into walls and have trouble with stairs, etc. She said that will improve with time, it just takes time.

I really like this doctor because she is very kind but doesn’t hold back the truth. She doesn’t beat around the bush about letting me know my vision will only continue to deteriorate from here on out. The aggressive treatment is simply to slow it down as much as possible.

I’m not saying that everyone with retinopathy will end up blind eventually, I’m am only speaking about my individual case. I am so far gone that there is no stopping it and definitely no reversing anything.

I can still have good vision for many years to come. There is no reason to get depressed at this point, although I do get weary with all the eye exams and injections. But that is a small price to pay to preserve what I have for as long as possible.

And who knows, while I’m working to preserve a new and miraculous treatment (cure) might be found. :stuck_out_tongue:

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Man, Tamara that’s scary. Of course everyone gets cataracts and that used to be blindness with old age but now cataracts get taken out like tonsils I guess. I hope your heart isn’t hurt from the stress of doctor visits. I’m sorry if you are unable and cannot get enough assistance to normal use your blood sugar. I started work today and seems my reputation is very good. My blood sugar was high all work day after first break when I didn’t pre bolus. Don’t know yet how to produce tomorrow with limited parts. I’m training an apprentice but may ask others for help to get part of the construction project going using the tool I get trained to use friday.

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So sorry to hear about your eye trouble, @Tamra11. It is terrifying, I know. I’m also getting eye injections in my right eye every two months. I was totally fine til this past autumn when I had my normal ophthalmologist appt. He dilated my eyes with a very strong solution. It gave me a tremendous migraine headache and I was vomiting all day. I recovered by the next day and forgot all about it. However, my next ophthalmologist appt showed severe eye damage, hence the injections I’m now on. I’m not sure if the eye damage and dilation are connected but it is surely suspicious. My eye images before and after the dilation show alarming damage.

So far, the injections are not helping and I’ve been getting them since March. But I sincerely hope the continued injections help you. Good luck.

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Sometimes I get tension type headaches from the dilation. I don’t know if it is the actual drops, what they do, or the increase in light. It doesn’t always happen but it is a bit annoying when it does because it keeps me out of commission until the headache goes away (a few hours).

The injections have been doing a great job at keeping the swelling in my eyes away, up until now that is. I was told this was my best chance at keeping further damage away and keep from needing more surgery, but it seems there is always something else they can try.

It never helps to fret and worry, so I chose to do everything I can to keep what I have and let what can’t be controlled do what it is going to do. :smile:

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You have been through a lot. Thank you for sharing your journey here. I don’t comment on all your posts, but I do read them all.

I hope that your vision stays good for many years. However, although the prospect of blindness can be a big change and very stressful, I’d like to encourage you to keep up the attitude I’ve quoted above. I’ve been legally blind since just after birth due to retinopathy of prematurity, and have worked with hundreds of children and adults with visual impairments in various roles throughout the years. There is so much negativity and fear around blindness, but it really does not have to be terrifying. It’s hard, yes. It’s a life-changing adjustment, yes. But so is diabetes and so many other challenges we face in life.

I think a lot of the fear is caused by people having no idea how they would cope or how they would function without sight. But there are alternative techniques for doing everything from cooking to shopping to using a computer. There are millions of blind people around the world who live independently, work, travel, have hobbies, and contribute to the world in whatever ways they wish. We have to do things a little differently at times, and it does take some extra work and training (especially in the beginning), but there is very little that we cannot do.

If you (or anyone here) find yourself facing blindness, please don’t be terrified. Just be prepared to learn some new skills and make some adjustments in your life - but know that you don’t have to adjust your expectations of what you can and can’t do. The most tragic thing I see is when someone gives up before they’ve even tried simply because they believe something can’t be done.

Best of luck that you retain your level of vision for years to come!

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Very well said, thank you. :smile: