Friday, December 14, 2012

I Shouldn’t Be Here . . . . .

This month marks a pretty big milestone for me.  I was diagnosed with Type 1 in December of 1979, and although we don’t know the exact day I’m pretty sure it was more towards the beginning of the month.  (I spent a week in the hospital, and I don’t remember any Christmas stuff happening so I think it was well before the end of the month).  So I’ve been marking the occasion toward mid-December each year . . . . . and here we are, smack in the middle of December.

This year my diaversary is a biggie.  I was 11 years old when I was diagnosed.  That was 33 years ago.  So I have lived with diabetes for 3/4s of my life.  That feels like a very very long time.

I’ve been struggling with a major case of writer’s block for about a week . . . . not just when trying to write about my diaversary but while trying to write about anything at all.  And I realize I’ve been struggling with the thoughts and emotions surrounding this diaversary for at least a month now.  Because honestly, when I think about having survived diabetes for 3/4s of my life, one phrase keeps echoing through my head . . . .

I shouldn’t be here.

I shouldn’t be here.  I guess that must sound  pretty morbid.  But I can vividly remember laying awake many a night during my late teens counting up how many years I had left to my life.  Ten . . .  maybe fifteen . . . . but surely the last few would be filled with all of those terrible complications that had been drilled into my head over the years.  I had watched my aunt become sicker and sicker and eventually die from diabetes complications, and I thought it was a preview of my own unavoidable fate.  I’d be lucky to make it into my 30s.   I’d never see my 40s.


But here I am.  Forty-four years old and complication free.  Every time I think about being complication free a weird wave of guilt washes over me.  It comes from knowing that for so many years I ignored my diabetes management almost entirely and knowing that many who worked much harder and have lived with diabetes for a much shorter time have developed the complications I’ve somehow managed to avoid.  Why them and why not me?  Genetics, environment, or just dumb luck?  Who knows.

Thirty-three years.  3/4s of my life.  All with Type 1 diabetes.  I’m very grateful for the life I have.  I’m thankful to be here and to be healthy.  I’m lucky to be able to have hope that I may still have another 30 or 40 years to my life-span.  I’m proud to try to be a strong patient voice and to show that diabetes doesn’t have to stop you.  But honestly, lately I’ve been feeling so tired of walking the diabetes road for more than three decades.  I’ve been angry at the time and energy and emotions it demands.  I’ve been fed up with diabetes.  I know this will pass.  I know I’ll get back to a better place emotionally.  I suppose after 33 years, maybe it’s okay to rage just a bit?  Because after all, I shouldn’t be here.  But when all is said and done, I’m so glad that I am.


  1. I think Eeyore is the unofficial type 1 animal spirit guide. You are not alone in having these thoughts my friend. Happy Diaversary!

  2. I'm so glad that you're here, too, Karen. :) I raise my fictious glass of wine to you!

  3. Great post Karen, I read so much of my own story in it that it's almost scary... /wink

    I agree with you, it is ok to rage about it now and again because it is not easy... It's not easy physically, emotionally, mentally, or financially. And I think it is damn healthy to let yourself vent


  4. Oh my goodness - no you? That would be awful.
    I'm so glad you're here!

  5. So very glad you are here, too!!
    Not just for you, but for all those you inspire IRL and through the DOC.
    Knowing you and other PWDs who have kicked D-butt through the 'early years' without the technology that we have today gives me (and lots of other parents of CWDs) an amazing hope for our kids' future.
    Super big hugs to you!!

  6. I am VERY glad you are here too Karen. Big hugs and much love friend! Happy Diaversary to you! xo

  7. Congratulations, Karen! I started feeling the emotions you're describing at about my 15 year mark. It's been two years since then and I do feel like I've entered a more accepting phase. I am considering it my quarter-"diabetes" life crisis.

  8. Sending you hugs. I'm so very glad that you're here.

  9. This is a great post, Karen. Thank you for being honest about how you feel. I think that yes, it's totally fine to have that rage feeling. Diabetes sucks, and it's hard, and it's demanding, and it's unrelenting and unforgiving. And somehow, here we are. A bit tired and worn, at times, but here we are nevertheless.

    Lotsa love to you and yours, Karen! I'm so thankful to have you in my life. :-)

  10. I can't tell much how much I've appreciated your support of me and my blog. You're a wonderful person, and I'm so grateful you're here.

  11. Let me add to the growing chorus and say congrats on 33 years... wow! I'm very glad you're here. In fact, you SHOULD be here. The effing diabetes should not.

  12. Let me start by warning you that I'm switching to reading blogs as a diversion from today's news (and I don't mean the news about the smaller Omnipod). My mind is all over the place right now when it comes to "being here", and guilt about being here while others who are equally deserving are not. Yeah, I'll feel guilt when I give my kindergarten-son a hug this afternoon while other's can't, and if he had a broader view of the world, he'd feel a little bit of guilt for hugging me while other PWDs didn't make it to my age.

    I think that the term "guilt" should be replaced with the term "luck". Be glad that the random acts of blindness, complications, and so-on passed you by. Be appreciative of what you've got rather than angry about what you haven't got -- I know I am.

    I'm sorry that this comment turned along a different path than you probably intended by this post. My mind just isn't functioning normally today...

  13. You are right to rage and you most certainly should be here! I can't imagine life without my good friend, Karen. Congrats on your diaversary and the wonderfulness you bring to so many people! I cherish our friendship and always hope that my daughter enjoys her life as much as you do yours.

  14. Happy Diaversary Karen!!
    I am so glad your here and my friend!
    And *CLINKING* a virtual lemon martini glasses with you!

  15. Hi Karen,
    Found you by accident through another blog that was celebrating you :) I'm an identical twin who was daignosed in 1977 at age 6, my sister in 1975 at age 4 - we're celebrating 70+ years with Type 1! I never had the idea that I wouldn't live as long as I could. Frankly, I feel like I'm so much more on top of my health than other people my age because of DM. What other 42 yo sees a doc several times a year, gets their cholesterol checked, cardiac blood work, etc.?
    No complications, although my sis has some random neuropathy (she gets everything first even though she's younger by 11 mins). Maybe we're lucky and maybe we've just worked really hard at it.
    Diabetes made me a more responsible person. Anal, maybe. OCD about my 'stuff' (aka meter, glucose gel, insulin), yes! But we're here. These posts show that you're NOT alone. Every day we're here and healthy is a smack in the face to a disease that tries to control us and our happiness, but fails.
    Happy Holidays to you and yours!

  16. Hey Karen,
    Just found your blog and I really enjoyed your thoughts about living a long time with this disease. I was diagnosed in 1975 at the age of 14 with type 1 and was thrilled to make it to the ripe old age of 50 two years ago. It was good to hear you talk about fears about not living very long because I have felt the very same things throughout my life since being diagnosed. Thank you for sharing! It feels good to no that I am not alone in these kinds of thoughts.
    By the way, I used to get every cold that went around and then I read a book about Vitamin D deficiency which said it was very common for diabetics. Got mine was I very rarely get catch the bugs going around. You should check your levels. It might help.
    Keep up the good work! Julie

  17. I just found your blog through Six Until Me and I feel like I could have written this post. I have had Type 1 since May 1980 when I was three years old. I have been told throughout the years to expect complications and that I wouldn't make it to 30. Here I am now at 35 (!!!) and no complications. I remember partying hard and not taking care of myself because there was no reason not to as I was not expected to live a long life. I also never expected to be a mother - and I have a 12 year old. No one understands why I am excited to have another birthday - I celebrate each year I make it past the milestone I created in my mind. Thank you so much for writing this...I don't feel so alone.

  18. You're doing pretty darn amazing :) so just keep on keeping on with what you do best. Living.
    And my bday coincides with your diaversary. I was born mid-December of 1979. So now I'll never forget your date!

  19. Karen, I understand completely how you feel. I have been living this life since 1974 (38 of my 50 years), and I often wonder "why am I here"? A lot has changed in these intervening years, and I am very glad you're here! You are an awesome person and you show people everyday that no matter what, "you can do this!" You are an inspiration to the newly diagnosed and to those of us that never thought we'd make it this far either! Happy Diaversary Karen, and here's to many more!!

  20. Rage on sister, and know that you gave me hope today that the sometimes picture of my son's future I can't avoid in my head may not be the case at all.
    ~Linda Buzogany

  21. Catching up on some blogs today with my coffee and a warm fire. Sad I missed this one back mid-month - would have liked to congratulate you for kicking D butt back when you wrote it but Im saying it now. Congrats for winning and proving that diabetes doesn't always win. This post caught me a little off guard. It reminded me of something I hadn't remembered since sugarboy's diagnosis and hadn't even known that I remembered it till that day. It was spring of 1986. I was in 6th grade. We had to write a research paper and give a speech. I cheated - I basically plagiarized mine from a copy of Time magazine featuring Muammar Gaddafi. I was reading my notecards for my speech and hadn't planned on paying attention to the girl that went before me. Then she said this "I won't live to be 30. Ill never have kids and probably wont get married. I have Diabetes" Clearly I was listening because that opening statement from a speech in 6th grade given by a girl named Jonelle was what I heard in my head around 10:30am on Feb 7, 2007. It was closely followed by Sally Fields lines after the funeral of her daughter Shelby. About a year after Sugarboy was dxd I sought out Jonelle. I waited a year because I was scared of what I might find out. I was 33 - that meant she was also 33 - but I heard the words of her speech in my head - "I wont live to be 30". I am very glad to share that Jonelle is alive and well and kicking D ass. She has two boys and is happily married. diabetes doesn't always play fair but with modern day medicine, technology and social media I think we have the advantage. Keep kicking D ass and congrats on winning.

  22. Well said, sister. I most certainly didn;t think I'd make it to age 40. And now, having survived significant complications and cancer, at age 59, I spent the entire day at the mall with energy to spare. Go figure. And then say thanks.

  23. i am glad you punched through that writer's block; this was a great post!!

    rage on, sometimes it's all we can do.



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