The Other DME

I woke up and noticed something different today.

I rubbed my eyes, but to no avail. “Maybe I’m low?”, I thought, but a quick blood sugar check revealed a nice 82. “It must just be some icky funky eye gunk … my allergies have been all over the place lately.” But washing didn’t help it. Cover left eye, right eye is fine. Cover right eye….

NOT fine.

It was as if I was wearing a dirty, dried out contact over my left eye, but that still gave perfect peripheral vision.

I wanted to freak out. I told myself to stay calm. Maybe I just had pressure on my eye for a while and it’s adjusting back. Maybe it’s just I haven’t woken up good enough yet. Maybe this is just something that will pass in a few minutes.

Two hours later, no change. A phone call in to my Ophthalmologist, and I was told to be there by 11:30. That’s never good when they want to see you THAT day. I went on to work, but looking at a computer screen is… weird.

When we got there ( my husband took me just in case), they took me into the pre-exam room, and I looked at the letter chart. My vision was still good in my right eye (20/20), but my left? Had gone from 20/20 to 20/80 and STILL blurry… overnight. With my eyes now dilating, I waited to see the doctor.


He came in and looked into both eyes. He stared in my left for a good while. As if I couldn’t already see because of the blur, now I couldn’t see because I was blinded by the magnified light. He sent me over to get a picture of my eyes, but had the nurse jot down notes that sounded like “superior and central CSR” (central serous retinopathy), which I had already Googled before going. He then looked and said that he didn’t think it was anything diabetes related but that there was a collection, or blister, of fluid in my eye and some swelling, but that he wanted to get pictures to confirm. “Okay”, I thought, “I’ve already looked this up this morning, this is sort of good news because it typically goes away in a few months, often as spontaneously as it appeared. No big deal.”

Pictures were taken. I saw the spot. It was huge…. on the screen, that is. If you’ve ever seen a picture of your eye, imagine a spot 2 to 2 1/2 times as big as your optic nerve circle, and an oval shape, with the tail extending over your macula.

We were sent back to the room and we could hear the doctor talking with someone. Little did I know, that was the eye doctor there that specialized in diabetic eye diseases. He came in and showed me the screen. He went over what was going on and what happened. Then he said the words I had dreaded I would hear :

This is diabetes related.

It’s Diabetic Macular Edema. Basically, the vessels are leaking fluid around my macula. What I don’t understand is that he didn’t see any blood, just fluid. Either way, I am to go back in a few weeks to meet up with the doctor that specializes in diabetic eye diseases and find out where to go from there.

Right now? I’m going through a whole mixed bag of emotions. Part of me is confused – I just went to the eye doctor near the end of February and they said everything looked fine, yet he said this was something I’ve had for a while now… how long is “a while”, exactly? A few weeks? Part of me is blaming myself – that I could have done better. That this is my fault for slacking off over the past few months. Part of me is angry because I know that I could have wonderful control and complications could still arise because that’s how diabetes is… it’s a evil, silent, slow destroyer. And another part of me is thinking, “You know, you’ve kicked diabetes’ ass for 25 years. Things happen and there’s nothing you can do about them.”

So, now, we wait. And pray.




Filed under dblog, Diabetes

27 responses to “The Other DME

  1. Colleen

    I’m sorry. And yes, I’ll pray.

  2. Oh Sarah, I’m so sorry you are dealing with this. It is absolutely not your fault!!! I will keep you in my thoughts.

  3. Sarah – I’m so sorry. We are here for you and we love you and we are sending massive amounts of love and hugs and prayers your way. I know how scary this is and I know how hard you’ve worked at kicking D’s ass – Don’t stop, girl. And. If you need anything at all, give a ring.

  4. Much love to you, my friend!

  5. We’re all here and rooting for you!

  6. Praying. Love you. I’m here if you need to talk. Xo

  7. Love, love, and more love to you. Thank you for sharing. xo

  8. Amanda Turner

    Hugs and will keep you in my thoughts.

  9. carlyn

    Sending you love and peace Sarah.

  10. Sarah,
    I’ve had it. It freaked me out, too. Unlike you, I had no idea it was happening and a retinal specialist found it. One round of focal laser treatment and it hasn’t come back.
    This insipid, sneaky disease, not you, is the cause. Thinking of you…

  11. Praying for you, sweetie, with tears in my eyes.

  12. Kim

    You have kicked so much ass when it comes to diabetes (and everything else!). Please be gentle with yourself – much love your way, Sarah.

  13. Gary Cunningham

    So sorry Sarah. Its not your fault at all. You have been doing a marvelous job. Saying a prayer for you, BFF.

  14. Aron

    There is no good reason beyond living with a persistent and unrelenting disease. I had a very similar experience (though mine was not a D issue) – i will never forget that head space – best of luck and keep doing what you’re doin’, you are inspirational!


  15. Heidi

    Thinking of you-and many,many prayers that they (and you) will beat this.

  16. Thinking of you, Sarah, and hoping for the best. Fortunately the eye doctors have so many meds and procedures that weren’t available in the past to help get your eyes back to good health.

  17. You should know that you made a great choice in going in to see the doctor THAT DAY. And that you made a good choice in seeing him in February (rather than go a few years without, as some – myself included – have been known to do). And now fortunate you are that your doctor has another doc in the office who specializes in diabetes-related stuff, and that he was wise enough to get that second opinion — I assume my ophthalmologist, who runs a solo practice, would’ve stuck with the first verdict and that would be it. All things considered, if this had to happen, it happened in the best way possible.

    I’m so sorry this is happening, it’s not fair how these things affect some people and not others. But please don’t blame yourself. This is just due to the randomness of the whole thing.

  18. Sending you the very best wishes. So glad you’re seeing a diabetes eye specialists. I had ME and mine resolved over about 18 months with tighter BG control. Not that my A1C was ever horrible, just some ups and downs over many years with diabetes. Doc said some would have sent me straight for laser surgery, but she was willing to watch and wait. I saw her with dilated eyes monthly at first, then every 3 months, now back to 2x a year.

  19. I’m really sorry you got this news today. I hope it all gets cleared up and that there is no shame and blame. Keep us posted, and of course the DOC is keeping you in our prayers!

  20. Sending prayers. That’s all I can say. ((((hugs))))

  21. Tag M.

    Chin-up my friend; DME is somewhat reversible if caught early. Tighten up up your high/low CGM thresholds and do what you know how to do.
    Ps: I like and appreciate your column.

  22. Not your fault. Not your fault at all. And as strong as you are, in no time this will be just another speed bump you ran over on your long journey.

  23. Sarah: I’m thinking of you and praying, too. Have had that, and like others I am glad you called right away and got in there that same day. In my case, it was also missed by the eye doc right away at exams and then a month or so after, I had the cloudy dark spot. My dad had a detached retina a few years ago and so I’ve now been trained to call and get in as soon as possible because every moment counts. And in the DME case, mine has been present but went from “not-so-good” with a bit of a fluid leak to just something to monitor and keep BGs in line as much as possible. It tends to come and go at that stage, I’ve been told. Hope it turns out to be that in your case, too. Best your way, my friend.

  24. I am SO PROUD of you for acting quickly instead of trying to explain the symptoms away yourself. As someone without diabetes, I’m not sure I would have been so responsive.

    Praying for your precious eyes!!!

  25. Thinking of you, Sarah. And going through similar things, if you ever need an ear. Big hugs.

  26. Elizabeth Snouffer

    Dear Sarah – thank you for sharing your very new and raw account of this neglected complication of type 1 diabetes + type 2 diabetes. I am currently in the throes of working on a document for IDF that focuses on risks and treatment of diabetes eye disease, and your words have thrown a human aspect and experience right into my thinking. The information you have shared will impact others – like me – and I appreciate your courage. Wish you all the best in the days ahead – Elizabeth (T1 for 39 yrs)

  27. Pingback: One Year Since… | SugabeticMe

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