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    My Diabetes Story

    Hi, I'm Sue. I'd like to share a story which I think might give some insight to parents of tween and teen diabetics, and might be helpful to teens trying to cope with the emotional impact of this illness.

    I was diagnosed with Type 1 at age 11. I remember crying in the doctor's office when he told my mother and me. I didn't really know what diabetes was, but I understood that it meant I would have to take shots everyday, and I hated shots. I began to hate seeing the doctor, because it almost always meant a stern, disapproving lecture about controlling my diet and blood glucose levels.

    Treatment has changed dramatically in the 34 years since then. When I was first diagnosed, home blood glucose monitoring didn't exist, and the only way to check blood sugar was in a hospital or lab by drawing blood with a gigantic syringe from the arm. I was in the hospital for two and a half weeks that first time, and the inside of my arms were black and blue from the 4 to 5 blood samples drawn each day for testing. Standard treatment called for one daily injection in the morning of long acting insulin, which was derived from pork and beef pancreases (no humilin or other analog insulins in the 1970's).

    IF I had been able to self monitor my blood glucose then, I could have confirmed that I was quite high each morning, and prone to dangerously low levels from mid-afternoon to dinner time, when my NPH insulin started to kick in. Afternoon classes were difficult, because I wasn't about to announce to everyone that I needed to leave to eat a snack. None of my friends knew about my diabetes. It was weird. It sounded like something your grandmother should have.

    I remember going to the library when I was 12 or 13, and searching the card catalog for information on diabetes. The books I found had been published mostly in the 1950's, and were very outdated. Imagine my shock and horror when I read stories about diabetics receiving medals for surviving 25 years! Throughout my early to mid-teen years--on top of the anxiety everyone felt with the ever present background threat of nuclear anhilation during the cold war--I never planned or expected to live beyond 25 or so. Finding a life partner, having children, completing my education, seemed like nice fairy tales that just weren't going to happen for me.

    I was an absolute terror for my parents during my teen years. I'm sorry, Mom and Dad, you were the best parents I could have asked for. The rebellion was all me, and I know, now, how your hearts must have ached trying to keep me happy and healthy and safe.

    I ran away when I was sixteen. I truly believed that I had to do it all NOW--experience everything I wanted to experience NOW--because a future was uncertain at best, and non-existant at worst. I didn't have much money. I made $52/week working at a lunch counter cafe. Syringes and insulin were a huge expense, and some mornings, I just didn't take my shot. I suppose I was willfully in denial. Plus, the less insulin I took, the less I weighed, which can be a very unfortunate and dangerous motivating factor for young women. That stage passed fairly quickly, as I learned to associate how really awful I felt with a lack of insulin.

    At seventeen, I came back to my hometown, although I didn't move back in with my parents. I was still wild and rebellious, but it was becoming apparent to me that I wasn't dead, yet. The future seemed to be sneaking up on me, even though I hadn't expected it, and I realized I was going to have to work with this new understanding of reality.

    I met a sweet guy. We loved each other. He learned how to give injections in the places I couldn't reach, and recognize my hypoglycemic episodes long before I became aware of them. About the time I became pregnant with our son, the first home blood glucose monitors became available. You would put the blood on a strip, time exactly thirty seconds with a stop watch, and then hurry to wash the blood off with water from a special squirt bottle. (Sure is a lot easier, now!) That was in 1981. I've been testing my blood sugar four or more times each day ever since.

    I learned to use regular insulin on a sliding scale before eating, with adjustments for blood glucose levels, before the DCCI study came out and told us all that that was the best way to keep yourself even. I haven't been perfect, and I still dread doctor visits. But, I've learned to balance my food and insulin, to tell friends and co-workers about my diabetes without embarrasment, and kept my blood glucose in a reasonable range for the past 25 years.

    I've been married for 25 years, worked the past 16 years for a non-profit organization in a position that I feel makes the world a better place in some small way, and have a wonderful son of whom I'm very proud. I'm incredibly fortunate to have no serious complications, given the less than ideal treatment standards, and my own unwillingness to take my care seriously, for the first ten years after diagnosis.

    Life happened, even though I didn't expect it. I'm so glad that I've made it this far, and I plan to be here for a lot longer. So, how come they don't give out medals anymore!? :)

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