The 40-Year-Old Disease

As a diabetes educator and diabetes advocate, I try very hard to help people live life to the fullest despite having diabetes. I try to write diabetes-related articles that will inspire some and remind others. For this issue of our newsletter, I want to share with you something that I posted on my Facebook page. This is written not as a nurse or diabetes educator, but as someone just like you or your family member who has diabetes. Please read:

Today is November 1, 2012. Forty years ago, my mother lay in bed all night listening to the sounds of me getting up to use the restroom. We had spent the evening before at our church Halloween party where I ate everything I could get my hands on. My mother tells me that she simply laid there and cried. She knew what was happening, as my older sister was diagnosed with type 1 diabetes just the year before. I was 5 years old at the time.

The next morning, my mom called downtown to St. Louis Children’s Hospital. She told them what was happening, and they suggested she bring me to them. Keep in mind, blood sugar testing was still a pipe dream and did not exist at the time.

Sure enough, I was diagnosed with type 1 diabetes. Apparently I sat there with my doodle pad imitating what the medical residents were writing. Although I do not remember much about that day, I do remember being surrounded by several residents or possibly students and remember thinking, “Oh, look at me… okay, you are still looking at me, am I supposed to entertain you?”

Those were the days when instead of poking a finger to measure blood sugar from a tiny smear of blood, we had to urinate in a cup, used a “dropper” to measure out 10 drops of urine and added it to a test tube along with 10 drops of water and a chalk-like tablet called a Clinitest Tablet. We eagerly waited for the pill to fizz and turn the liquid one of about five colors. Blue… whew… no sugar in the pee. Orange… oh my, lots of sugar. Better not let my mom see this.

At an early age, I figured out quite easily that if I used the toilet and then took the urine directly from the toilet, I would almost always have blue or light green in the test tube. I knew this meant I must be some kind of genius! I could fool anybody with this funny pee test.

The early ’80s saw the dawn of blood sugar monitoring. Keep in mind that even the first meters were not ideal, to say the least. Performing one test took nearly five minutes. From what seemed like a very large amount of blood—50 micoliters as compared to today’s 0.3 to 4 microliters—to timing the test strip with the clock on the wall and then rinsing off the test strip with just the right water pressure. I discovered that if I used a stronger water pressure, I would rinse off too much of the test strip and end up with an inaccurately lower reading than the true result—cha-ching, still a genius!

Time has drifted by, and there have been so many advances in how we manage diabetes. From newer and more efficient insulin to much faster and more convenient blood sugar monitoring—did I mention my original meter weighed a few pounds and had to be plugged into the wall?
Along the way, I have had good days and bad days. I have made mistakes and not always made the right decision or made the best choice for my diabetes. Sometimes my blood sugars seem to be exactly where I want them; and occasionally for no apparent reason. Other times my blood sugars are way too high or too low; again, for what seems like no apparent reason.

The biggest inspiration I get for managing my own diabetes is the ability to help others manage theirs. I am glad that I am here today and doing what I do. Every day I try to work harder to figure out how to help people live a happier and healthier life with diabetes. I don’t do scientific research. There are a lot smarter people than me out there to do that. Besides, the promise of that cure has been lingering over my head for 40 years.

Every few years and a few billion dollars later, a surge of new discoveries puts that promise one step closer and it dangles a little lower, but still out of reach for all of us. I do hope for a cure someday—but I am not holding my breath and the reality of a cure for type 1 diabetes is simply not there. Not yet, anyway.

I look back over all the time I have spent devoting my energy to diabetes camping and other programs that will help people improve their lives with diabetes. I think about the people I have met and the friends that I have made along the way and how important friendship is. I feel that I have played a small part in the development of so many young lives. I have seen many kids grow up; some of them get married; some of them have babies of their own; and I have seen a few of them die at a way too early age.
These programs that we do that seem so unimportant in the middle of winter are the most life changing events I have ever witnessed.

Diabetes summer camp is more than simply an opportunity for kids to hang out. Its power is indescribable. It is a life-changing event where kids feel “normal” for a short period of time. How sad is it that any kid would not feel “normal?” True, I would rather be in a nice hotel than in the heat where insects and snakes and other critters can get you (okay—overly dramatic). But bring on the heat and the bugs and the stinky fish if it means we all reunite, make new friends, get our diabetes battery of enthusiasm charged up, and realize that we are okay in the world.

After 40 years of diabetes, I am okay in the world. Isn’t that what we all want?

Has it been easy? Not always, but I am okay. Actually, knowing I try to make the world a better place for others who struggle with this same disease keeps me better than okay.

I am a person with type 1 diabetes. I am okay; and I hope you are okay, too.