Monday, March 19, 2012

Complications, Luck and Guilt

It’s been about four years since my ophthalmologist first found some tiny bleeds in my eyes.  And by “tiny” I mean so minuscule that I just need to go in every six months for a dilated exam to keep tabs on their status.  Each time I go in, Dr. C either finds no change at all or finds that one leak has cleared up but another itty bitty leak has formed.  Thursday it was time to go in again, and I’ll admit I was feeling very nervous about what she would find this time.  Because honestly, lately it feels like I’ve been getting more bad news than good, and so I’ve got quite a pessimistic outlook these days.

EyeDoctorThis time, however, the news was good!  Really good!!  Both eyes are now 100% clear of any leaks and bleeds or any other problems other than my astigmatism and extreme nearsightedness - neither of which are diabetes related.  Although Dr. C feels we could go back to yearly dilations, she prefers that I continue to come every six months.  This is because I’ve been diabetic for such a long time, and she’d really like to catch any problems as early as possible. Now let me tell you, I really despise getting my pupils blown up as large as they can stretch and then being forced into what feels like the equivalent of staring straight into the sun on a clear summer day.  But I do agree with Dr. C about catching things early, so I made my appointment to go back in September for more torture my next exam.

As I left the office, something Dr. C said stuck with me.  She said “Although you’ve had diabetes for so long, I’m not that worried about you because you have such great control.”  That statement has been nagging at me since last week.  While it’s true that my A1Cs have been just where we want them to be for almost four years, that doesn’t mean my control is always great . . . .  because as we all know, a bunch of crappy numbers can still average out to an okay A1C.  But even if we assume that I did have great control since 2008, that certainly doesn’t make up for the 20+ years I spent with less than stellar (to put it mildly) control.  With this in mind, I told her that I think the whole complication thing comes down to a little hard work and a whole lot of luck.

For me, this is where the Major Complication Guilt sets in.  I’m very glad to be fairly complication free after 32 years with this disease.  I'm overjoyed that my eyes are in great shape once again.  It really is quite a blessing - but that makes me feel guilty because it’s a blessing I don’t feel I deserve.  I have plenty of friends who have worked much harder than I did over the years, and yet they are battling complications from this beastly disease.  Why them?  Why not me?  And why does diabetes have to pile on a boatload of guilt along with all of its other garbage??


  1. Hi Karen,

    Congratulations on a clear retinopathy test! I recently went to have my eye examination and they found that I have background retinopathy (again, just bruises on the backs of my eyes really - no need for treatment luckily.)

    I ended up feeling guilty for a different reason to you though. I felt guilty that I'd allowed any damage to happen to my eyes. However, like you said, a lot of whether you do or don't get complications of diabetes is because of the luck of the draw. I've had diabetes for 15 years and have only just got a bit of background retinopathy, yet I was talking to a D-Mom last week who's son has only had diabetes for 2 years and he has it now too.

    From what I read on your blog, you do try really hard to make diabetes a priority of yours and so you deserve to be complication free! You should be proud of yourself. Yes, any diabetic who is putting a lot of work into their management should be complication free too in a fair world, but unfortunately the world isn't always that way. Keep up your good work Karen and I hope your exam in September shows clear results too!

    Daisy x

    P.S. You can read about my Retinopathy guilt at if you get time!

  2. This is such a sore subject with me. I'm so happy you got great news. I wish everyone did. Keep up the great work, chica!

  3. I'm so glad your eyes are clear. I go again in May. Last year she found no evidence of d-complications but did find the start of cataracts (I'm old, ha ha). I didn't like hearing that but at least it's fixable if they get work and I choose.

  4. Yay Karen, for the great eye report!! I know what you mean about the guilt. It's always there in one form or another. Heck, just 2 minutes ago I was feeling guilty because I don't have to deal with a lot of the crap people with T1 have to deal with! In fact, I commented on another blog post about that. How strange is it that I feel guilty because I don't get scary lows like others do? Don't I have enough opportunities to feel guilty about my own D without taking on other's issues? Sheesh.

    Having said that, you more than deserve the good news. No one is checking to see if you are perfect every day and neither should you. Revel in your successes!! I'm happy for you.

  5. Hi Karen,
    Great news on the peepers... Congrats..

  6. I hear you, Karen. I've also had some small eye issues that cleared up with tighter control - but there's always that nagging wonder of when they'll be back, and why I've been so lucky where others have not been.

  7. I completely understand what you mean Karen. I'm sure there's some physiological reason that scientists would love to understand. But the why pales in comparison to the fact that you ARE here and I am so glad of that


  8. karen-

    first of all, yay! that is so exciting!

    and i know what you mean. i almost didn't write the post about my eye exam because of the guilt. why are my eyes in such good shape when other people's aren't?

    i don't have any answers. there are so many things that can happen to us because of diabetes, for whatever reason. most of the time it's not fair. but i do think it's just as important to celebrate good news as it is to reach out when the news is not so good. it's part of the beauty of the DOC.

  9. Shoot, lost my comment! One more try...
    No guilt.
    I think that's one of things I really appreciate about the DOC. When someone is doing okay or even great, we're genuinely happy for them.
    You may even end up encouraging someone who has been avoiding their eye appointment to get it done.
    If we can't brag to each other, then who can we tell?
    Congratulations on your GREAT eye appointment!
    (and this time I'm copying before posting this!)

  10. I agree completely with going to the eye doc every 6 months. Early intervention is imperative for success.
    I have asked myself a million times why it was my kidneys that came back and not the other thousands of people on dialysis? I think about the people on my unit every day and how brave and strong they all were. I am trying to accept that at times there are only questions. And not answers.
    As a wise friend told me, when you get good news, "bask and savor".

  11. Hi, Karen,

    Deserve, Schmeserve! No one deserves to have Diabetes, no one person is doing any better than the best they can do, and guilt is poison, poison to your spirit. I rejoice that you are complication-neutral at this time. You've heard some about my journey and resulting complications. Do you think I would ever want you to be sicker so I could feel better? You have done the best you can do -- for a long time, that wasn't "performing" to specs like you are now. But if you let that guilt in, it's going to eat you alive. Rejoice, and remember that, even if you spent a year for every second of your past where you didn't do so well, you cannot change anything. What you've done is what makes you who you are now, and I think you know what a blessing you are to everyone who finds you. Congratulations -- Judith

  12. Congrats on your good report! It is all hard stuff so take the accomplishment and celebrate.

  13. Congratulations on your eye exam Karen! As someone that does have complications, I don’t think that you should feel guilty because you don’t have them. There are a lot of people like you that didn’t have the best control and are now worried that because they went years with bad control they will still get complications. At least you can offer some hope to those people that there is a chance that they won’t get any. I would much rather see you offer hope to people than feeling guilty over something you have no control over.

    I had a bunch of laser surgery for retinopathy back in 1995-96. According to the Joslin medalist study, people that made it 17 years without problems won’t have any more. I am at year 16. Of course, my eye doctor said the problem with studies if you are the one person that it doesn’t apply to … he had to burst my bubble! I am continuing to count down to that 17 years and will breathe a sigh of relief when I get there. I am sure I will always have some worry about it though. The eyes are the scariest of complications for me.

  14. Like Kelly, I've heard about studies (but can't find my notes) about the fact that if you go a certain number of years without complications it becomes more and more unlikely that you will have them. I heard it at FFL so I will try to take better notes this year. I think it was something about 10 years related to kidney trouble. Whatever the reason, let's just continue to celebrate every day that we have.


Thanks for your comment!