Skip to content

Complicated.

A few weeks ago, I was diagnosed with macular edema.

It’s a complication you can’t see, one that I can’t see until I can’t see.  Sophisticated computer equipment and  camera technology have afforded me the opportunity to find out early, giving me the chance to track this issue closely and opt for aggressive treatment options (laser surgery, medicated eye drops, intra-ocular steroid injections) when the time comes.  I feel raw and vulnerable, but I have information.  I have access to excellent doctors and specialists.  I have options.

I also have a bit of a stomach ache because when I asked, “How can I keep this from becoming more of an issue, going forward?” the response was, “Keep your glucose control as close to ‘normal’ as possible.”

It’s the “as possible” bit that throws me.

It could have been the birthday cake?

It could have been the cupcakes I snuck, and lied about, as a kid?

It could have been  NPH and Regular and hormones and the “brittle diabetes” moniker that they wrote in marker on my chart at the hospital made “normal” a definition built on shifting sand?

It could have been the pregnancy hormones, or the period of diabetes burnout I experienced after my daughter was born?

It could have been anything.  Everything.  It could have been the years of struggling.  It could have been the quick transition to tight control.  It could have been bad genes, or good genes, or tight jeans.  It could have been everything I did, or didn’t do.

The truth is, it was type 1 diabetes. 

We don’t talk about complications often in this community, and I hope that’s because many people aren’t dealing with them.  Discussions about “what could happen” are often left in those quotation marks, as if that holds the threat captive.

But after decades with type 1 diabetes, complications may happen.  Retinopathy, kidney issues, depression … the list is long and a good attitude, a determined mind, and even good control don’t keep these issues entirely at bay.  I’ve had my share of issues with my eyes.  In the past, I’ve seen some cotton wool spots in my eyes.  And during the course of my pregnancy, retinopathy near the macula dictated a c-section delivery for my daughter.  And now, this diagnosis of macular edema in my right eye.

This doesn’t mean I’ve failed.

I am sharing this because it’s real life with diabetes.  This is what’s happening, and even though I don’t want people thinking that diabetes complications are necessarily a guarantee, they also aren’t a mark of failure.  I work hard to manage this disease.  I will keep trying, even though I know there will me more radar blips, and more moments that cause momentary tears but then renewed determination.  There’s so much personal responsibility, so many moments of, “Well, you have the tools to manage this disease, so why aren’t you hitting the mark?” Diabetes is unique, in that way, with complications often viewed as a result of the patient not working hard enough, when in fact, they are the result of diabetes.

By writing this, I’m opening myself up to people who want to point fingers and to say, “Well, it won’t be my kid” or “It won’t be me.”  I can understand that.  I didn’t think it would be me.  I hope it’s not you.  But it may be you, and in the event that it is, I want you to know that you aren’t alone.  Diabetes complications need to be talked about, because the guilt that comes with their diagnosis can be crippling, melting away the value of our efforts.  It’s easy to become overwhelmed when diabetes seems to be the leading cause of leading causes.  For me, the diagnosis of macular edema made me want to wallow in self-pity for a while and hate diabetes, and I did that for a few days.  I cried a little.  I combed through internet search returns.  I hugged my husband and my daughter, burying my face in the chaos of her pigtails and inhaling the scent of unconditional love (and baby shampoo).  I called my mom.  I talked with a few friends.

And then I moved on, because if I stay in that pool of guilt, I’ll drown.

Guilt is a misplaced emotion when it comes to diabetes, and to related complications.  It’s not my fault that I have diabetes.  It’s not my fault that I have eye complications.  But it is my job to take care of these issues, and to work through the moments where I want to give up.  The guilt gnaws but I can’t let it take too deep of a bite; I owe myself more than that.  The emotional ebb and flow of diabetes has more impact on my happiness than the actual fluctuations of my blood sugars, so I won’t be beating myself up about this.  But, as I write some of this, I’m alternating between hitting keys and wiping tears angrily off my face, which pisses me off because even when I make a conscious decision to block feeling bad and guilty about it, I’m still unnerved.  I want to be tough, but I’m not as good at that as I’d like to be.  I want to be strong for my family, but sometimes I need them to be strong for me, in the moments when I’m buckling a little. (Which is why I need to thank Scott, Melissa, Kelly, and Jeff for being sources of information and good hugs last week as I was finding my footing with this and away from home.  My family isn’t limited to marriage or blood, and I’m thankful for that.)

So they checked the box, the one that says, “Complicated.”  But I knew that, far before it was seen in my eyes.  Life with diabetes is complicated.  Life without it is pretty damn complicated, all on its own.  But it’s mine, this life, and it’s still good.  When I come to the end of the very last day, I want to feel happy.  That’s more my goal than an A1C number ever was, or ever will be.

Life moves forward, complicated as it may be.

108 Comments Post a comment
  1. Thanks for sharing. It reminded me that I’m due for my yearly eye visit. You’re so right on the money as well about the guilt. Try not to blame yourself, you do what you can.

    07/1/13; 7:16 am
  2. We’ve all learned that even when you do everything right, stuff happens.
    Hugs…

    07/1/13; 7:23 am
  3. Brigitte Roy #

    Hi Kerri, thank you for this. I have a macular edema since 2010 and my last visit to my ophtalmo was just like a nightmare: “I’m sure that in next november I must make an injection….” Fear. just fear . And after so sad. My type 1 is too old … and of course I can’t control enough. So I’m guilty. But why? You’re right, Kerri. I say with you, it’s not my fault to be diabetic and it’s so hard to live. I’m really down these days and it’s good to read you.
    Merci beaucoup, Kerri. And next time you’ll come in France , go to visit Lyon.

    07/1/13; 7:48 am
    • Shake off the guilt, Brigitte. It doesn’t help us take good care of ourselves, and diabetes requires us to have our A Game intact. xo

      07/1/13; 8:36 am
  4. Thanks for writing this, Kerri. I wish you didn’t have to be experiencing this. Complications seem so abstract until they’re not, but I think you’ve expressed so well what many of us are or (likely) will go through. What a ride.

    07/1/13; 7:50 am
  5. Kerri, as you know, I do not have diabetes, but that doesn’t stop me from deeply admiring you, and all the others who carry on the daily grind and warfare of this condition. You inspire through these difficulties, though any sane person would wish you didn’t have to go through them. Hugs from NJ!

    07/1/13; 8:01 am
    • Thanks, Steve. You’ve always been such a supporter of patients … people. Of people. 🙂

      07/1/13; 8:36 am
  6. I admire you for sharing this with everyone, Kerri! Sending uncomplicated love your way!

    07/1/13; 8:51 am
  7. Diana #

    Thanks for your insight, Kerri. My 13 year old daughter was diagnosed two years ago. As she battles in owning her responsibilities, I wonder if posts like this would inspire her to go forth and conquer or scare and depress her. I haven’t shared your blog with her yet. Do you think you would have had a better approach as a young teen with access to these type of blogs? Just curious. I wish as her mom I could take it all on and control her diabetes for her… You know, with my mature brain…

    07/1/13; 9:42 am
  8. Kerri… I know you know this, but I just want to affirm that this does not make you any less of a person. It makes you human. And you’re still just as much of a champion as you ever were. Good luck.

    07/1/13; 9:45 am
  9. Brenda #

    Thanks for this post, Kerri. And thanks for this line, which I think is so apt for so many of the situations we deal with as we manage our diabetes: “And then I moved on, because if I stay in that pool of guilt, I’ll drown.” This is a healthy, literally life-saving concept that we need to embrace and remember. Only the best to you!

    07/1/13; 10:00 am
  10. Minnesota Nice #

    Kerry, I have had macular edema for years. With me, it comes and goes. And yes, I get very scared when it appears and fear that this time it won’t “go away”. Major suckage.

    But i’ve also had my major share of other complications and have surprised myself and taken great pride in the fact that I can live quite well with them. No, it’s not fun, but allow life to carry you on with trust and joy.

    And take reassurance in the fact that this was caught early, in time for treatment if necessary.

    All my best to you.

    07/1/13; 10:04 am
  11. This reminds me of why I hate Bill Polonsky’s little ditty “Well controlled diabetes is the leading cause of NOTHING.” Bullpucky, as my 10-year-old self would say. What does that even mean? I think you and many people I know with complications are well controlled. You are compliant. You are all those things that they tell us to be. And it still happens. So, yeah. Bullpucky. Life is complicated.

    07/1/13; 10:11 am
  12. SO MANY (uncomplicated) HUGS, Kerri!

    07/1/13; 10:19 am
  13. Smith (usally seen as smith101 on support forums aka dlife ;-) ) #

    Thank you. Thank you. Thank you. The guilt and shame sometimes is worse then the disease itself. The funny thing is my Aunt, who does not have any type of diabetes at all, also had MacD. She went through injections and what not all and it’s been over a decade and she still has her sight. As a normie it’s not like she can keep her numbers any more normal…so it seems sometimes things just happen. Here’s hoping those “things” are more often good then bad. Keep hanging in there. You are one of my lights even when I attempt to have burn out.

    07/1/13; 10:20 am
  14. k2 #

    Kerri-
    You are human, you are doing your best, you are honest, you are family….. and you are wonderful.
    Keep swimming & xoxo
    Kelly K

    07/1/13; 10:25 am
  15. Major Bedhead #

    The guilt is there for parents, too. At Olivia’s last appointment, her a1c was up from last time and the two of us spent the 2 hour ride home from Joslin kind of beating ourselves up and trying to figure out what we could change. And she’s 18 now, so I can’t control what she eats as much as I could when she was little. She’s becoming an adult and I have to let some of that stuff transfer over to her. So it sucks, to sit back and watch her struggling with this. It’s a real high wire act, this diabetes management BS.

    I’m glad you shared this – your posts, and, hell, your life, give me a lot of inspiration about life with diabetes.

    07/1/13; 10:34 am
  16. Dan #

    Hi Kerri,
    It is easy to “have fun”. The pursuit of happiness is work. Keep striving and my thoughts and prayers are with you. Each and every day as diabetics, we are walking into territories which people in the past knew nothing about and there was no thought to for a doctor’s prescriptive choice, You are a sunshine, just let the clouds blow by. As always have a great day.
    Dan

    07/1/13; 10:48 am
  17. ria #

    Kerri
    After 4 decades + , with type 1, I have learned it does me NO good to be self condeming for not being perfect.
    Perfectionism with this type 1 crap weighs too heavily on our shoulders, because we are our own best friend or our own worst enemy.
    I just try try try again, and try try try to “whistle a happy tune”
    That is, after I am done ranting about how unfair this freakin disease can be.
    love and hugs

    07/1/13; 11:04 am
  18. Katie S. #

    I’m sorry to hear this. Kerri you have been and continue to be an inspiration in my diabetic life. Sometimes this stuff just happens. Thank you for sharing and please continue to share this journey. If anyone can get through this, it’s you! Good luck!

    07/1/13; 11:27 am
  19. “bad genes, or good genes, or tight jeans” !!

    how wonderful, yet terrible, yet hopeful, yet soul-crushing our (complete in-?)ability to manage diabetes with all of the latest(/most useless) tools is

    07/1/13; 11:43 am
  20. Kim #

    I have to concur with Allison on this one – that phrase of Dr. Polonsky’s just stings at a time like this, and casts that shadow of guilt that is *so* unneeded at a time like this.

    I think you’re wonderful, no matter what state your eyeballs (or any other parts of you) are in. Keep swimming.

    07/1/13; 12:01 pm
    • Kim #

      Also, for good measure, “at a time like this”. #thirdtimesannoying

      07/1/13; 12:01 pm
      • At times like this, it’s good to have friends like you at times like this. #fiveforthewin

        07/1/13; 2:57 pm
  21. You are loved. <3

    07/1/13; 12:07 pm
  22. Thank you for writing this Kerri. I have had so many of the same emotions and thoughts recently as I begin to have symptoms of neuropathy. I also thought, “could it be because I have slacked now and then?”. It isn’t my fault just like it isn’t yours. I have good control of my T2 and yet here I am with these symptoms. Diabetes isn’t fair but I refuse to let it get me down, regardless of the crap it throws me. Your post has helped me a lot today.

    07/1/13; 12:29 pm
  23. Jill #

    Kerri–
    Your blog is so relatable and so inspiring. At the same time, I’m sorry you have to deal with this new complication. Recently being diagnosed with retinopathy, I can understand and relate to your guilt. Thank you for posting this and for sharing your personal struggles. You help me and so many of us with our own.

    07/1/13; 1:00 pm
  24. Jenn Ward #

    Thank you for sharing. I hope it doesn’t go without saying that although things *can* happen no matter how hard we try and how tight control is, the research clearly shows overall that results are better the tighter our control. I’d be concerned that the message here might be translated as, “no matter what we do, this could happen.” Although that may be somewhat true, it might be better to say “*Even* when we do our best (which is most important, as the research shows) we still may experience complications, but we’re in this together and we should never feel guity about it.” I know that so often I’m frustrated by hearing uneducated folks say, “That happened because she’s diabetic”, when all I can think is, “It’s more likely that complication happened because she wasn’t educated on how important glucose control was.” I wish we could do more to break that trend.

    Best of luck to you! We’re lucky to have such great technology available to us now!

    07/1/13; 1:24 pm
    • The message here is that complications are not a sign of failure. And yes, the message might also be translated as, “no matter what we do, this could happen.” This is true, Jenn. Tight control is the goal, but shit still happens. It’s being able to still keep trying when shit happens that I’m concerned about, at least today.

      07/1/13; 2:57 pm
      • ria #

        Isn’t it hard to say, which came first, the chicken or the egg?
        My mental health issues have a lot to do with the day to day anxiety caused by this type 1.
        Depression is a complication.
        I may have had “issues” before my age 17 diagnosis, but, this disease sure didn’t help me find the rainbow connection, either.
        I am so thankful for finding DOC and knowing I am not alone.

        07/1/13; 9:16 pm
    • I don’t think it is EVER ok to think, “It’s more likely that complication happened because she wasn’t educated on how important glucose control was.”

      I’m smart as a whip, and have generally always been very up-to-date on the best management techniques, but I have had a bunch of complications because I didn’t take care of myself. I didn’t take care of myself because I’ve had a lot of mental health issues, and it took years of treatment and normal maturity to make peace with diabetes and get my mental health issues managed. When I was a kid, the internet didn’t exist, and little was understood about the psychology of diabetes, so besides diabetes camp, which was my saving grace, my family wasn’t equipped to provide the support I could have used, and no one knew any better to even realize kids might need more support than they were getting.

      I also have a bunch of complications that are common for people with t1, but the cause isn’t understood, and as far as I know, BG management isn’t strongly associated. They only know that people with type 1 are more likely to develop them – “frozen shoulder” in my shoulders and hips, carpal tunnel, trigger finger.

      Please don’t assume that anyone with diabetes developed complications for a particular reason. Managing diabetes is complicated, and everyone has very unique circumstances between their family support, community resources, financial resources, and psychological resources. Everyone with complications deserves nothing but kindness and understanding.

      07/1/13; 4:47 pm
    • I think that is a bit of what the message is… Having tightly controlled diabetes management *reduces* the risk of diabetes complications, but it doesn’t not *eliminate* them completely. It’s better to try and fail than to not try at all because the outcome is all but likely to be much much worse than if you had tried.

      07/1/13; 11:15 pm
  25. Kerri, this should be required reading – not only for those of us dealing with diabetes, but for those around us who support us. Very powerful. Thank you.

    07/1/13; 1:32 pm
  26. All the love to you, and hugs, and whatever kind of reassurance you need. Life is hard enough without complications. Keep your head up.

    07/1/13; 1:35 pm
  27. Having had, and currently having, a list of complications, stuff that’s been treated, stuff that’s not been treated because I have shitty insurance and can’t afford it, stuff that’s stable only because I keep my BG as close to “normal” as possible, stuff that motivates me to check my sugar, count my carbs, and hope for a “no change” report at every doctor’s appointment, I hope you know you’re going to be ok, no matter what. That’s how I think about it for myself anyway, which meant I had to think about what being “ok” means. And regardless of whether or not that resonates with you, (((hugs))), always.

    07/1/13; 1:54 pm
    • (( hugs )) back to you, Lee Ann. Our liner notes for Pimp Blouse now include my nod to “being ok.” 🙂

      07/1/13; 2:52 pm
  28. It was diabetes.

    I experienced my first vascular leak in my eye last summer. When the answer to “how do we fix it?” was basically do nothing, I pretty much wanted to cry. It was minor, it went away, but now I know.

    Part of me wants to read posts about complications to understand and see (real) people living with them, part of me never wants to read about them because then I can pretend they don’t exist.

    Thank you for writing about it.

    07/1/13; 2:23 pm
  29. mollyjade #

    Oh hell. I’m sorry diabetes found a new way to knock you over. You’re so right that we need to talk about these things even if they make us want to cross our fingers and mumble (notmenotmenotme). Onward!

    07/1/13; 3:22 pm
  30. Beautifully expressed as always. I greatly admire your bravery. Thanks for sharing.

    07/1/13; 3:48 pm
  31. Thinking of you, & sending positive prayers/vibes/support. You are one strong/tough lady & I hope you know that.(though it’s ok to cry…been there too)

    07/1/13; 4:13 pm
  32. Kale #

    Brilliantly written. As a person with complications myself (wooo, diabetic gastroparesis and minor neuropathy!), you’ve hit the nail right on the head. Too many people these days think that talking about complications is just a scare tactic – it’s not. It’s something that happens and is something that we need to be willing to talk about.

    Thank you for opening up the discussion.

    07/1/13; 4:23 pm
  33. Janice #

    I am so touched by your post. I totally agree with you. I get so nervous everytime i go to the eye doctor. People are so judgmental…everyone always says to me, “well, you take care of yourself, not like so and so.” to which i say, “how do they know I take care of myself?!” and I am the first person to sympathize with those who “don’t take care of themselves.” I try my best and so far have suffered no complications, but people who try their best might not get the results i have…and the ironic thing is that i understand those “bad diabetics” better than anyone without type 1 diabetes. I hate the guilt associated with this disease. i hate the comments from non-diabetics about what i’m eating. i hate the “reporting” and “compliance” to the doctors. i have been type 1 for over 30 years. I don’t know you, but i feel like i can feel what you feel and I am right there with you (if that doesn’t sound too wacky!). Keep on keeping on, but also let yourself mourn, find comfort and laughter and know that WE (the community) are with you. 🙂

    07/1/13; 4:31 pm
  34. Thibault #

    Thanks so much for sharing Kerri! Truly inspiring… Bigs hugs from Belgium…

    07/1/13; 4:33 pm
  35. shannon erickson #

    Kerri,
    If it means anything, even as a stranger, I can tell you’re doing everything it takes to do everything you can to make yourself as healthy as you can be. Keep up the good work & thanks for making the rest of us T1’s finally feel normal.

    Shannon

    07/1/13; 4:39 pm
  36. Angela #

    Your fear is something all of us share with T1D. Sometimes when I have an occasional breakdown over having this for 22+ years, people think I won’t have complications bc my A1C is good. Everything you said is what I play through my mind. “When I took a few months off in high school”, “3rd trimester in both pregnancies”, etc.
    Kerri, you and your family will be in our prayers! I always thank God that if I’m going to have this, it’s during a time of medical advancements! And I am living life with a positive attitude! Not everyday….but most;)

    07/1/13; 4:39 pm
  37. Jason Turner #

    Hey Kerri – great post. I am the king of dealing with complication and you hit it on the head! Hope this makes more people talk about it more. I often feel like my comments about it aren’t really welcome.

    07/1/13; 4:42 pm
  38. Michele #

    This is by far the most beautiful piece you have written. I love your honesty, candor, humor and wit in everything you write, but this piece was also brutally honest and captured how I and many others feel, even though we may not let others know. After 32 yrs. of T1D, I can relate. My list of complications gets longer, and I too, feel guilty for the times when I did not or could not take better care of myself. I wish I could go back in time and change those years when I was a teenager living in denial or was dealing with burnout and depression, but I can’t. My last eye doctor appt. included a diagnosis not only of retinopathy but also cataracts. I am only 45 yrs. old. I was like, seriously? WTF? Two diagnoses in one appointment? There really ought to be a rule against that or something.

    I think we don’t talk about our complications for several reasons, as least these are my reasons: (1) I don’t want anyone feeling sorry for me; (2) I try to inspire others with diabetes, so I don’t want to freak them out; (3) I don’t want people judging me – you know – thinking “oh, she must not be taking good care of herself – must be eating cake every day and not testing her blood sugar”; (4) I don’t want anyone thinking of me as weak or vulnerable when I’ve fought my entire life to prove I could do things despite my diabetes.

    Sending you hugs and hoping that the macular edema will progress very, very slowly.

    07/1/13; 4:58 pm
  39. Dear Kerri,

    I just want you to know that I love the positive view you have on life and the strength you show (though you might not always feel that way) towards everything life throws at you! I also want to send as much LOVE as possible through the internet all the way from Norway where I’m sitting in my living room, and hope some of it hits you right in your heart 🙂

    All my best, and lots of hugs
    Kristine <3

    07/1/13; 5:15 pm
  40. Lindsey #

    Thank you for your candor and perspective. I love reading your blog because, in my 20 years of being type 1, I have not meet too many people who “get it”. I have fears of complications….of how long I will live. After 20 years and 3 pregnancies, I’ve been doing well, but I still sometimes think about when the ball will drop.

    I wish you the best on this new diabetes journey. Thank you for sharing your story.

    07/1/13; 5:26 pm
  41. Kristen Shultis #

    Oh Kerri, the way you crafted this blog entry was amazing. I appreciate your rawness and honesty. Your words struck a nerve with me that I didn’t know was there. About halfway through, I started crying as I realized that I worry about these things in my head, but do not voice them, even to my husband. And you are absolutely right about the guilt that can be so damaging to our ability to manage this disease.

    I love that you said “This doesn’t mean I’ve failed” – because you haven’t! Your voice and your attitude inspires many. Your blog was one of the first things I read after my diagnosis about 1.5 years ago (at the age of 22). You are a gifted writer and you have made me feel understood, albeit virtually. Thank you for sharing your experiences and emotions with the DOC. I hope and pray that you will have the strength to handle this news and that it will progress ever so slowly.

    07/1/13; 5:46 pm
  42. Cindy #

    Thank you for sharing this part of your life. I’m mom to a terrific 14 year old with diabetes.

    I’ve learned so much from reading your blog, and it helps me to try to understand what my son might be going through.

    Hugs.

    07/1/13; 6:02 pm
  43. I’m sending you a hug. I think it takes a very strong women to post this blog. Thank you for being vulnerable for us to see. As much as I hate seeing others go through all of this junk it helps to know that I’m not alone.

    07/1/13; 6:09 pm
  44. You know there’s no reason to feel guilt, I know there’s no reason to feel guilt, and I wish knew what to say so you wouldn’t feel guilt. But I’d be lying to you (and myself) if I said that the same thing – or similar – wouldn’t also make me feel guilty if it happened to me. Logic and emotions don’t always play nice together, and sometimes I think we need to let the latter run its course in spite of the former.

    Having said all that, I hope your feelings of guilt run its course quickly, and you’re back to being happy, smiley Kerri. The Kerri we all know and love, and the Kerri who we wish didn’t have to deal with any of this.

    07/1/13; 6:12 pm
  45. Kerri

    Sorry to hear about this challenge. Thanks for the frank post about it, you’re 1000% right. Guilt or blame should not enter into this situation.

    In my early days with diabetes I worried constantly about complications. Then a great Joslin doctor explained that these don”t just appear one day, there’s normally time to minimize the speed at which it arrives. I can’t tell you how much of a relief that was to me.

    I’ve had retinal damage in the center of my field of vision in my right eye for several years now. Ironically, the Joslin folks say it’s probably due to steroid (used to control my asthma) ran than diabetes. Regardless it makes it harder to see, but it hasn’t made living any less enjoyable. I guess that’s the wisdom that comes with age.

    07/1/13; 6:17 pm
  46. Hi Kerri,

    You may know my brother Rich (the diabetic). Like my brother, I’ve been diabetic most of my life. I was diagnosed at age 11, I’m 42 now. I’m going to tell you my story, and I’m not going to sugar coat it. Bear in mind that just because my problems went this way, doesn’t mean yours will, all diabetics experience these side effects in different ways and in different time.

    I was diagnosed with Diabetic Retinopathy at age 28 when I started to see small dark blotches in my vision. I went through multiple laser retina surgeries on both eyes over a period of a couple of years. At one point I was surprised by being suddenly completely blind when one of the capillaries in my right eye burst and bled into the vitreous gel in my eye . One of the capillaries they hadn’t managed to cauterize yet. The blood took a while to dissipate, but eventually it did and the laser surgeries began again for a while.

    At that time the doctors explained to me that “eventually” I would “most likely” lose the sight in both my eyes, even with the laser surgery. Don’t you love it when DOCTORS talk like that? Since they finished my surgeries the bleeding in my eyes have stopped, Visits to the ophthalmologists have told me that the previous treatments had pretty much cauterized all the capillaries on my retina that I should ever have the bleeding problem again. But that doesn’t mean I’m in the clear either. I have, since the first treatments, been suffering from light sensitivity, (poor iris response due to the side effects of local anesthetics I needed for the surgeries). Also the slight color blindness I’ve always had has become pretty bad, I have constant floaters in both my eyes now too, that wax and wane in size and amount. Some days I’ll wake up and have a hard time reading, then a couple days later the floaters will have mostly cleared. But they are always there, and my ophthalmologist tells me I should expect those for the rest of my life, there’s nothing they can do, until eventually, it may become so bad I’ll be legally blind. I’m not waiting for that to happen mind you. I just get pissed off when the floaters get bad, and get closer to the monitor. 🙂

    Since that first noticeable side effect of diabetes presented itself, I’ve been riddled with many more problems, none of them helping to make my life any easier. I’ve been diagnosed with Kidney Disease and Heart Disease (two stents installed already). I have osteoarthritis in my hands, knees, and feet. I have vascular calcinosis in my hands (calcium deposits in the veins). I get hard cracked calluses on my toes and fingers, that will bleed if I don’t immediately use Lubriderm after washing my hands. I also have systemic muscular and joint pain all over that so far 3 doctors have been unable to diagnose. There was also that bought in my late 20’s when I suffered from terrible cases of sleep paralysis, and just recently, I was struck (almost literally) with a complex migraine (which I’ve never had before) that made my co-workers have to take me to the ER.

    With ALL of this though, I have a good life, I’m happy, I love where I work, my social life is active and exhilarating. All of these terrible problems my body throws at me can only ruin my life if I let them. Now, do I sometimes get sad or pissed off with all the crap I have to endure because of my Diabetes? F#$@ yes I do. But I manage it, and take each new thing that comes along as they come. I do admit that I have one great advantage though, and that is that my wife is the most awesome woman in the world. It wouldn’t be nearly as easy to deal with if she weren’t here to support me when I need it.

    Oh and BTW… it’s not our fault. It’s Diabetes’ fault. That guy can go frak himself. It doesn’t matter how badly someone takes care of their diabetes when they are young. Young people shouldn’t HAVE to do that. Diabetes as a teenager is as bad on a child’s psyche as an unrelenting bully. Cause that’s what Diabetes is… a bully. And even though I had that T1D bully as a teenager, I didn’t really fight back like I should have… then when the T1D bully started to really kick my ass in my mid 20’s, I started fighting back, and have been fighting ever since. It’s the only way.

    Kick its ass. Even if you have to do it blind.
    Blind Fury – http://youtu.be/rgnlJ38ntQw

    Oh BTW.. I tend to ramble a lot on the internet, sorry for the book length comment. 🙂

    07/1/13; 6:22 pm
  47. Click #

    Thank you Kerri! You are reaffirming the fact that we LIVE with diabetes with each breath we take and shit happens that is totally out of our control. IMHO, the words diabetes and control should never be in the same sentence because the reality is that it’s a huge ass roller coaster from minute to minute, day in and day out. Diabetes is a daily reminder that life is neither predictable or ever totally within our control. We cannot live our lives in the shadows of what might of been, instead we can do the best we can within reason and hang on tight for the ride.

    Thanks for sharing your seat on the ride!

    07/1/13; 6:31 pm
  48. Thank you for talking about this, Kerri.

    I think it’s another example of just how much we don’t yet know about why some of these other things happen (or don’t happen).

    The one thing you are so very right about is that diabetes complications need to be talked about. I’m very proud of you for helping open up this conversation. I know it’s hard.

    Lots of love and big giant A1C reducing hugs to you.

    07/1/13; 6:52 pm
    • Thanks, Scott. (And oddly-enough, my A1C is completely fine. I credit your hugs, and #sweatabetes.) 🙂

      07/1/13; 7:28 pm
  49. Christine #

    Kerri, you are a testament to success as a diabetic, even despite complications that non-diabetics may see as failure but which we see as (VERY unfortunately) part of the inevitable for most diabetics. Dealing with a chronic disease for over 20 years AND still having a sense of humor about it?? Now that is success.

    What a great post, though I wish you didn’t have the diagnosis to cause it. Best of luck to you, and thank you for this message.

    07/1/13; 7:02 pm
    • Thanks, Christine. And I plan on hanging tight to my sense of humor. Vitreous and otherwise. (See what I did there? Horrid joke, but I still kind of like it. 😉 )

      07/1/13; 7:29 pm
  50. Joana #

    As i was reading, many thoughts came to mind. But in the end only “thank you for writing this” seems appropriate.
    It’s a hard disease this type 1, just as life is hard (and good and intense) I guess.
    It’s Nice not to be alone.

    07/1/13; 7:40 pm
  51. Laddie Lindahl #

    Kerri, you are so brave to share this diagnosis with us. You make each of us stronger as individuals and as a community when you discuss the realities of your life with Type 1. Diabetic complications are much more complex than just BG levels. Although each of us does our best every day, some people seem immune to complications and others are ravaged by them. Blame diabetes not yourself. Thinking of you, as always.

    07/1/13; 7:56 pm
  52. Ashley Noel #

    Kerri –

    Sorry to hear about your eye trouble…stay strong! Reading This post comes at a pretty important time for me. I’ve been T1 for 23 years now and have never suffered any complications. I took a little “diabetes hiatus” in the past and stupidly hoping and telling myself that nothing bad would happen and that complications wouldn’t touch me. In March, I was officially diagnosed with some pretty severe proliferative diabetic retinopathy. I’ve had multiple laser surgery treatments on both eyes and am looking at surgery. But somehow this experience doesn’t have me down in e dumps as I thought it would…I’m trying to keep a positive attitude and with this wake up call and a lot of support from friends, family and medical staff, I know I’ll be OK. Thank you for continuing to share with everyone- you’re an inspiration!

    07/1/13; 8:18 pm
  53. Last year, my UCLA endocrinologist, who I consider one of my greatest friends/mentor, grabbed my shoulder and said the following, “The thing is Elizabeth…the ability to really “manage” and live with type 1 is nothing short of a miraculous feat and the fact that we (medical experts) expect and encourage perfection is cruel and diabolical. Type 1 is incurable. Let’s not forget.” His heart to heart helped me understand how difficult it is for medics to assist type 1 patients and gave me the freedom I needed to stop playing the ridiculous blame game. Blame and guilt have no place in this conversation and the fact that they are present is a reflection of how desperately we need to redefine type 1 diabetes care and prioritize advocacy and research. Living with diabetes is like playing the lottery with devil, and each and every day of narrowly escaping tragedy or further diagnosis of a multitude of underlying complications – is miraculous. Kerri, from the bottom of my heart, I am sorry for this blow for you but I suspect you will pull through. Courage is not the absence of fear, but the ability to triumph over what scares us most. You’re already there. Elizabeth

    07/1/13; 9:07 pm
    • Oh Elizabeth … thank you. Thank you for all of this. This is exactly what I needed to hear today.

      07/1/13; 10:31 pm
  54. Thank you for sharing this. I was diagnosed with a neuro-muscular auto-immune disease earlier this year. It’s been depressing and almost debiliating. After almost 6 months I’m finally starting to come out of the shock. I recently even felt jealous of you! you seemed to ONLY have Type 1. But you’re right. Check the box, move on. I keep reminding myself, look around. I have a LOT to be thankful for. I am truly blessed with good family, friends and doctors. It’s complicated. It’s hard. But people and blogs like yours help.Thanks for sharing.

    07/1/13; 9:43 pm
  55. Tracy Doughty #

    A tough share Kerri. I’m so sorry to hear. I totally understand your attitude. I could visualize you wiping your tears as you wrote. It sucks & a good cry cleans out the toxic emotions that comes with such disappointing news. I am thankful & I don’t know why after 38 years w/ T1 but I have yet to be told such news…BUT, my 20 year old son living with T1 x 12 years already has 2 eye haemorrhages & was diagnosed with vitiligo last year. I would trade him places in a heart beat if I could. Why him & not me? But same as you, I do him no good by moping about & talking about it. I have to keep my chin up & try to help him to move forward. He still thinks he is infallible & doesn’t get IT yet. I hope soon. Sending big hugs to you. <3

    07/1/13; 9:54 pm
  56. karend1 #

    You are my hero

    07/1/13; 10:37 pm
  57. Conny #

    I don’t have diabetes, but my 12 year old has had it for 1.5 years. And today, I struggled with the stress of trying to teach her to manage her levels and trying NOT to scare the bejeezus out of her. Something I’m sure your mom dealt with too. So I broke down and cried in front of her (and I don’t do this) because of a 435 that came on when she wasn’t completely honest about what she ate. The fear of complications is so real to us, yet so abstract to her. It helps to read your words and recognize that despite the hard work and best intentions, stuff happens. And we deal. Just like we deal with every crappy number and crazy mood swing or terrifying low. So sorry to hear about your diagnosis and the addition of one more thing for you to contend with. You help us with perspective and resolve, and for that, we’re immensely grateful. Enormous hugs from Michigan, and keep fighting the fight.

    07/1/13; 10:42 pm
    • Huge hugs to you, Conny. My mom was with me last week while I was at the doctor’s office (my husband was traveling) and I know this is hard on her, too. Just because I have a child of my own doesn’t make me any less her baby. It’s hard on you guys … harder than it ever will be on us, IMO.

      07/1/13; 10:49 pm
  58. Thank you for sharing this, Kerri. I wish I knew about the DOC and blogging when I was first dx’ed with proliferative retinopathy. It was a huge scary ordeal for myself and my loved ones. They had no idea what it was or how terrified I was to even go to sleep some nights for fear I’d wake up blind. I lived through it, wish I didn’t have to, but I did and I think it makes me a stronger person for it. Now it just kind of simmers on a back burner and every 3 to 6 months I go for a retina specialist visit to see that everything is “steady” but to be honest there is still panic that comes when I walk through the door of that office. I don’t really mention my complications too much and I’m not sure why that is, exactly. But I think you’ve inspired me to speak up about it. I’m hoping to write a blog about it (when I have the time!) but it is definitely on my list! I wish you all the best and please keep us up to date with your progress. All I can say is support is the best remedy for complications, and we all are here for you, Kerri!

    07/1/13; 10:43 pm
    • Please do speak up! I think there’s the mistaken perception that if you have diabetes complications, your voice suddenly becomes invalid. It’s not failure. I feel really strongly about that. Please send me a link if you do end up posting about it – I’d love to read.

      07/1/13; 10:47 pm
  59. Love you, love you, love you, my friend. We’re here for you, no matter what. You are right- it’s not your fault. And you are never alone.

    07/1/13; 11:20 pm
  60. Kerri, thanks for your honesty. I heard very similar words about my left eye in 1982. I was diagnosed with type 1 in 1955 when I was 8, so I had many years of 1 shot of Regular a day, lots of urine tests, lots of guessing, pregnancy and early birth of my daughter (C-section) and many ups and downs. I had started to experience vision distortion two years earlier while completing my Master of Fine Arts studies. It took moving to Madison before I could get a correct diagnosis and start treatment and by then I had developed proliferative retinopathy in that eye. But that was over thirty years ago and laser treatment has greatly improved. I agree it’s not fair, but life doesn’t come with guarantees. You have the love and support of many people. Give yourself a hug!

    07/1/13; 11:29 pm
  61. Trish #

    Kerri- I am so sorry to hear about your diagnosis. Thank you so much for sharing your experiences and feelings. It means a lot to those that are in your shoes and also those like me, parents of children with T1D. I have a daughter who is a little younger than you who was diagnosed at age 10. Your posts help me understand what feelings she might be having and what she is going through. I also have a 13 year old son who was diagnosed at age 11. You do a great service to this community with your blog. Thank you. Be patient with yourself and know that you are doing everything that you can.

    07/2/13; 12:24 am
  62. Sara #

    Thank you for this brave and beautifully written piece, which really gets to the heart of the guilt — which for me, is the worst complication of diabetes and one I’ve dealt with for 20 years now. As I read this the floodgates opened, and I cried more than I have in months. I’m sure I’m not the only one. Thank you for your brave words. I hope this post was every bit as cathartic to write as it was to read. XO

    07/2/13; 1:46 am
  63. Emily #

    Thank you.

    07/2/13; 2:17 am
  64. Candice #

    Hi Kerri

    I’m new the the blogging world, however, Im no stranger to the diabetic one. My hubby is the diabetic in our world, he was only diagnosed 6 years ago – just befor we met and I am beginning to think the longer you have diabetes, the more difficult it is to manage it, and yourself.

    I think I’m pretty good when it comes to knowing the deal, being supportive (sometimes even nagging) etc., but after reading some of the blogs out there, I find that there is a whole lot more going on in his head than what he necessarily shares with me. This is so scary for me because I’m not really sure what else I can do for him to alleviate some of the stress that comes with being diabetic.

    Since your blog is his favourite one, I figure he can relate to – and identify with you and your experiences. Is there any advice you can give from a diabetic’s perspective on how I can be of more assistance and suport?

    Perhaps 2 heads are better than 1.

    Thank you for sharing your life with us, it helps more than you may know.

    I trust that you will find a way to get over your current speedbump and that at some point things will be ok again…

    Take care.

    Candice

    07/2/13; 4:14 am
  65. Liz #

    I truly believe any and all critical comments or searches by others for what you “did wrong” are motivated by fear. Fear and the bit of denial that makes us believe we really can do all the right things to manage this disease and live uncomplicated lives. . We all do our best, and you do better than most. Hang in there, and have an iced coffee (because that is nothing but good!).

    07/2/13; 9:07 am
  66. Kerri,
    For a long time I’ve really admired your attitude and perspective towards your diabetes care. You are a true champion and this diagnosis doesn’t make you any less of one! Complications happen, even when we do everything in our power to prevent them. Hang in there!

    07/2/13; 9:08 am
  67. Nicolep #

    Hi pretty lady –

    This is a beautiful post – which is challenging to do when you’re writing about complications. I think all of us have some – whether they’re physical or emotional. I feel very fortunate to know you and to share in your extremely positive attitude. Sending love your way.

    xo

    07/2/13; 10:44 am
  68. Mary Lyn #

    Thanks so much for sharing this, Kerri. So much love and respect for you!

    07/2/13; 11:03 am
  69. Jessica #

    Thank you for posting your struggles in addtion to your regular awesomeness. I let the guilt monster bear hug me most days but I am slowly learning to shake him off. Not only for my own sanity but for my family’s sanity too. You put perfectly into words how I feel. Wishing you the best health!

    07/2/13; 12:02 pm
  70. I’ve been trying to come up with a profound comment to leave, and have failed miserably. So I will say this:

    I love you.
    I hate this.
    Diabetes really sucks.

    07/2/13; 1:10 pm
  71. Denise #

    Thank you! For some odd reason, you always capture what i am thinking, and many times we experience the same things at the same time. So, thank you, for making not feel like I’m going insane!! 🙂

    07/2/13; 2:38 pm
  72. Thank you for sharing. I have proliferative diabetic retinopathy so I am very familiar with many of the procedures you will soon experience. Know that we are all behind you and I am so glad you are writing about it as well. I know my complication started in may of 2012 and I am still getting used to it. I have been blogging about my issues with my eyes and it honestly is the only things that has helped me stay sane during this period of time. I am getting ready to have surgery in October for my eye and hopefully things will get better. I know the bad teen years have caught up with me now and I know the feeling of guilt what if I had only done this or this. I had to stop myself from going down that road. I decided that day that complications happen and life goes on. My life has not changed one bit except for some not so fun procedures and more appointments.

    I know I am striving right now to continually talk about my complications in hopes that someone else living with it also will find some comfort or just a feeling that someone else understands. I have loved reading your blogs over the past 6 years and know you will get through this like anything else. I know us diabetics tend not to give ourselves enough credit. Love the A1c comment. Hoping things get easier for you.

    07/2/13; 10:34 pm
  73. Michelle #

    You are a beautiful, smart woman. You will be just fine. Stay strong. xox

    07/3/13; 9:44 am
  74. I’ve been struggling to come up with something encouraging and profound and… and I have no words.

    After I was diagnosed with diabetes I was handed a meter, strips, insulin pens and sent home from the hospital. I had the right tools, but I had no clue what I was doing. I was scared and alone. So, I looked on Google. The first diabetes blog I found was Six Until Me. After reading your blog posts I was still overwhelmed and scared, but I knew I wasn’t alone.

    I hope you’re feeling sheltered by the caring people in the DOC. I can’t stop your tears, but maybe I can help dry them and be with you every step of the way.

    07/6/13; 6:21 am
  75. Kat Mixon #

    Thanks for posting this. I just had baby number two 4 months ago today. I have not had any indication of complications but moved to Tn and had to get a new pcp and a referral to an endo. The waiting list for an endo is 3 months out here as a new patient so the pcp decided to do some bloodwork because he handles diabetics not on pumps. He called last Tuesday and said the protein in my urine is supposed to be less than 30 and it’s 55 so put me on an ace inhibitor to protect my kidneys. I went through the same emotions as you. He also said my A1c was 7.7….I’ve never been the best at control because I go from 50 to 350 so fast but I did slack up a little after my son this last time. I worry that if this is happening now and I’m only 29 will I need a kidney transplant later on and how much later on….all of these unknown answers on time and health. All I keep reminding myself though is that I do the best that I can and I can’t do more than that. I completely agree, I didn’t ask to have diabetes so all I can do is try to work with it.

    07/8/13; 6:47 pm
  76. Dawn #

    I can relate to so much of your story. T1D for 33 years, since I am 10. Wearing a pump for 18 years and before that 5 shots a day, works constantly for very tight effective control. CGM for the last 7 years. A1Cs for the last 15 years always close to 6, some as low as 5.8.

    Somehow I still had retinopathy so bad after my first pregnancy that I required a vitrectomy in both eyes. My retina detached in my right eye. Thankfully they were able to reattach it and save my vision, even though it is not perfect. But the damage was done and now 13 years after that experience, I have a macular hole. When I ask what can I do, they say, “Nothing really. Wait until it gets so bad that it limits your vision and we will inject it.”

    I feel a lot of the guilt that you do as well but I always try to remember something my first endocrinologist told me. He said, “Sometimes you can do everything right, but diabetes will age just like you do. And sometimes those complications you experience have nothing to do with you or your control but the path your diabetes will take and the genes that it is found in.”

    I try to think it is kind of like the person who lives a super healthy life but still ends up dying young versus the person who abuses their body over and over again and somehow lives well into their nineties. Sometimes it is out of your control. And just like the every day part of diabetes that you cannot control, the randomness of it, so too are the complications sometimes.

    07/14/13; 8:56 am
  77. debbie #

    Kerri-
    Thanks so much for sharing this. I actually teared up a little but, more so tears of relief more than anything because i almost always blame myself for for my lows, highs, rebounds, and everything in between and I just need to remember that its diabetes and not me. So thank you for reminding me of something us type 1s always forget.

    02/20/14; 1:19 pm
  78. Kerri,

    I’m a bit late into this discussion, but boy am I glad I found t! Thank you so much for posting this! I have had T1 diabetes (brittle) for 21 years and am only in my 30’s, and I’ve also started getting complications which have torn me up with guilt. I’m far from perfect and know that there were times in my life when my diabetes wasn’t my top priority, but I’ve never neglected and have always been compliant. It frustrates me to know that even though I try my best to manage my diabetes, I still ended up with a boat-load of issues when others I know with T1D don’t have any issues at all. I’ve just recently ended up with retinopathy, but have been dealing with heart disease (followed by what my docs called a “silent” heart attack) and kidney failure for several years. I just received a kidney transplant (life changing!) and have made many life changes to help prevent/manage anything else from happening. Of course, that’s never a guarantee, but all we can do is our best! I’m glad to know I’m not alone when feeling this way, and that it ISN’T me, it’s this damned Diabetes! Ugh!

    Btw, I also keep a blog that shares these complications (and mostly my experience with the kidney transplant) so that others will understand “our” side of the story. (http://nachosandkidneybeans.wordpress.com/)

    I plan to keep up and follow your blog as you do offer many helpful tips and suggestions. Thank you for sharing your story! You are an inspiration! 🙂

    06/11/14; 1:44 pm

Trackbacks & Pingbacks

  1. Diaries of a Diabetic Girl. - Six Until Me - diabetes blog
  2. Diabetes Must-Read-Blogs of July
  3. Macular Edema and Pac-Man. - Six Until Me - diabetes blog
  4. Of Icicles and Ellipticals. - Six Until Me - diabetes blog
  5. M-I-C-K-E-Y M-O-U-S-E | Test Guess and Go
  6. Looking in the Windows. - Six Until Me - diabetes blog
  7. Video: Diabetes Complications. - Six Until Me - diabetes blog
  8. Living with Type 1 Diabetes | Type 1 Diabetes Psychology
  9. Diabetes Blog Week: The Quiet Parts. - Six Until Me - diabetes blog
  10. Entering the Mancave. - Six Until Me - diabetes blog
  11. Guest Post: Let's Talk About It. - Six Until Me - diabetes blog
  12. Wet Paint. - Six Until Me - diabetes blog
  13. Eyeball Look-and-See. - Six Until Me - diabetes blog

Leave a Reply

You may use basic HTML in your comments. Your email address will not be published.

Subscribe to this comment feed via RSS

Follow

Get every new post delivered to your Inbox

Join other followers