25 years with diabetes: A Kaleidoscope of Memories

This year will be the 25th anniversary of my being diagnosed with diabetes.  As I was thinking about that, and being thankful that I live now, when 25 or even 50 years with this disease is actually a possibility, I realized this disease has had a huge part in shaping the person I am now. 

My father was diagnosed with type 1 diabetes the year I was born.  So when I was diagnosed, at the very least I had some idea what it meant.  But all this to say that diabetes was a part of my life even before my diagnosis.  I feel like sharing some of my memories with you today.  A lot of them are so vivid, I can even remember the details of the room I was in.  This is kind of cathartic for me to write out and may be a bit long.  I won’t be offended if you skim!  🙂

Here they are…

  • Sitting in the doctor’s office at age 10 – seeing my mom cry.  I felt scared and even a little bit guilty for being the reason she was crying.  Funny thing is, I don’t remember crying myself.
  • Before my diagnosis, I think I was maybe 7 years old, and being with my dad.  He had a side job painting and wallpapering, and I happened to be with him one evening.  On our way home, his blood sugar was going low.  He must not have had any money with him because he didn’t stop for food.  I remember actually wondering if I might have to learn how to drive in order to get us both home.
  • Going weekly to the doctor’s office before school in order to get a fasting blood test.  Yes, this was before the days of home glucose testing.  The nurse would poke my finger and collect it in a capillary tube.  After getting the test done, and before I went to school, Dad would take me out for breakfast.  I didn’t like the doctor’s office, but I loved going to breakfast with Dad.
  • The following Easter after I was diagnosed, I actually found the golden egg at the Easter egg hunt at the VFW down the street from our house.  I had been going to this egg hunt ever since I could remember, but never got the golden egg.  I won the biggest chocolate bunny I’d ever seen – and my sisters got to eat it.
  • Practicing injections in our bathroom using an orange.  Crying the first time I had to give myself a shot.
  • My older sister being home with me on one of those early days when I had to give myself an injection.  I think I was giving her a hard time about it.  We were both crying.  She told me that she wished that she could have the disease so I wouldn’t have to have it.  I loved her so much for telling me that.
  • My parents trying their best to encourage me, but I could tell it was hard for them, especially my mom.  She wanted to give me what I wanted (read:  candy, snacks, etc.) and it was hard for her to say no.  A lot of times she’d give in.  Now as a mom, I can imagine giving in sparked all sorts of guilt in her! 
  • My Dad’s repeated stints in the hospital due to his diabetes.  I think it began about when I was in 6th grade, he went in at least once a year if not more.  Amputation after amputation.  I remember a chronic state of being worried about him.
  • My own appointments with endocrinologist after endocrinologist.  I went to the top pediatric endocrinologist in Rochester at the time… and I hated him.  He basically told me I was going to die from this disease (looking back as an adult, he may have been telling me the truth, but it wasn’t the way to get a child motivated).  He used scare tactics and I rebelled. 
  • For many years I rebelled – I didn’t test my blood glucose unless I was forced to.  At a minimum, I did take my insulin.  Probably because I was afraid of dying.  Sometimes before a doctor’s appointment I would actually make up glucose readings or lie about high ones.  Who did I think I was kidding??  I recall an HBA1C test of 13.9 (normal is 6.0), after which the doctor told my parents I needed counseling.  I refused.
  • Telling my mom one time that I was going to die from diabetes anyways, if I didn’t take care of it, I’d just die sooner.  (Note to my 34 year-old self:  I obviously needed counseling… I’m not sure why my parents didn’t force me.  If I am in a similar situation with one of my kids someday – drag that child in!)
  • Having two very scary insulin reactions during my college years.  One was after a volleyball practice at Clarkson- it was probably a two minute walk from the gym to the dining hall.  I didn’t even feel like my blood sugar was low before I left the gym, but I very nearly didn’t make it to the dining hall.  Thank God my now husband was meeting me for dinner – he took care of me when I got there.  The second was even scarier – it was after a class at U of M – I knew I was low, but also knew my lunch was in my locker and when I got it, I’d be fine.  Problem was, when I got to my locker I couldn’t see the numbers on the lock in order to open it.  I actually had to ask a stranger to unlock it for me so I could get food out of it.  In neither case was I regularly checking my blood glucose, so of course I didn’t have a meter anywhere near me.
  • While getting my master’s degree, I remember a very specific phone conversation with my Dad.  He was telling me that his kidneys were failing and that he’d have to go on dialysis.  He was very depressed and I could tell.  He told me that people on dialysis don’t live very long – 5 – 10 years he’d heard.  I didn’t know if that was true… but it made us both cry.
  • Finally realizing at about age 26 that if I wanted to see my (future) kids get married, I’d better get serious about managing this disease.  I found a fabulous doctor who doesn’t accuse, doesn’t try to manipulate by showing disappointment… just takes me as I am (and takes my blood sugar levels as they are) and works with me to improve them.
  • Praying during my pregnancies (and still now) that my kids don’t develop this disease.  I’m doing my best these days to instill in them healthy eating habits so that if they do, they will already have a good start at controlling it.
  • I remember from an early on being concerned about dying early.  My father’s death at age 60 was a wake-up call.  Even now it makes me tear up thinking about it.  But the thought of my kids’ future spurs me on to better control of my health.  I want to see them grown, with families of their own. 

Diabetes is MY way of life.  All these experiences and memories have made me who I am.  This wasn’t meant to depress any of you, but just maybe to help you understand.  It’s probable that each and every one of you reading this blog know a diabetic (besides me!).  Maybe this will help you understand them as well.

At this point in my life I can look back and see that having this disease has made me stronger emotionally, more disciplined than I might have been, and more compassionate with others who have chronic illnesses.  God is in control and I know “…that in all things God works for the good of those who love him, who have been called according to His purpose.”  (Romans 8:28 )

Thanks for sticking with me through my trip down memory lane!

6 thoughts on “25 years with diabetes: A Kaleidoscope of Memories

  1. My best friend from college is diabetic, and she found out about it at the same age you did. I remember learning how to test her blood and give her insulin…just in case…and always knowing where the nearest soda and food was…just in case. Last Saturday, she took too much insulin for what she was eating, and ended up dangerously low in a WalMart near her home. Thank God her cashier was a nursing student, and knew exactly what to do.

    And good for you for deciding to take care of it. Your babies need you.

  2. Stephanie,
    I just had to respond to this post as well – I have been a type 1 insulin dependent diabetic for 27 years and have been on an insulin pump for 16 years. I was diagnosed 1 week after I was married (I had no idea why I was having such symptoms, everyone told me it was from nerves from the wedding). I too have 3 children (daughters who are 24, 21 and 16) and so I knows the struggles of a diabetes high risk pregnancy (we were only encouraged to have 1).
    God has taught me so much through the daily struggle of diabetes — I totally understand!
    Interesting how similar our stories are, huh?
    Recognize & Remember

  3. Wow. I am guessing from the above comment that your name is Stephanie. Thank you for posting the “memories” of your journey with diabetes. As you may have read on my blog, my husband has MS and it is a daily struggle. Reading your list here, I am challenged to list those scary times as well as the gratitude for this journey. It is not fun. I won’t pretend I’m that thankful for it, but I am grateful that God ALWAYS shows up for us, even in the little ways.
    God Bless,

  4. Happy Diabersary! I was diagnosed at age 10, and now I am 34. I was at camp, and was so stinkin tired all the time, so my parents picked me up early, and off to the hospital I went for a week of giving shots to oranges, and poking my fingers. What a crazy 25 years it has been. I am thankful for my insulin pump, and have watched other family members struggle with their type 1, and type 2’s. I like your story….good luck! and have a party or something! 25 years alive is great!

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