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Guest Contributor Chelie
I just “celebrated” living with Type 1 diabetes for 50 years, and I’d like to share a bit of it with you.
See this little testing kit?
I carried it around everywhere, once I was diagnosed in 1967 when I was in the first grade. Here’s how it worked: I would take the cover of the kit, turn it upside down, and pee in that part. I’d then (after setting it on the floor and finishing my business) take both parts to the sink. I’d carefully count out 10 drops of urine with the eyedropper into the test tube, add 5 of water, drop in a Clinitest reagent tablet (It’s poisonous! Don’t touch it!), and watch the mixture bubble and foam for exactly 15 seconds. There was a color chart that came with the tablets and I’d compare the color of the solution in the test tube to the chart to know what my sugar level was. If it was blue, it was good. If it was orange, it was bad. (Aside: maybe this is why I don’t like the color orange?) This old testing was so imprecise! Can you imagine, I was injecting a potentially lethal drug (insulin) based on “good” or “bad”!
I had to do this a lot, so I became a good little lab assistant at the tender age of 6. I learned to clean the kit and components in school and home sinks, in church sinks and friends’ sinks. At first it was fun to play scientist, but after a while I hated that little kit. I couldn’t go anywhere without it or my syringes and insulin vials. I inadvertently scared playmates when they saw the needle on the syringe, and probably when I would go into low blood sugar episodes.
(Side Note: I was shocked and embarrassed when I saw “Steel Magnolias” in the theater, being completely blindsided by Shelby’s insulin low. I cried the entire way home. Do I really look and act like that??)
I couldn’t eat anything or drink anything without testing and taking a shot first. I still can’t, but after 50 years I’ve gotten as used to it as I can. Nowadays the testing is a prick of the finger instead of urine, water, and a tablet in a test tube. I’m much happier about that! It’s still not ideal, though. Today’s glucometers, which use a drop of blood on a test strip and are MUCH more accurate, are still not that portable. Here’s mine:
I test a lot, maybe 6 times a day; morning, before every meal, before I get in the car to drive, and at night. That doesn’t count the times I test if I’m feeling low or high. This glucometer and my supplies don’t fit into those tiny purses. The 2 pen-looking things are my insulin; the grey one is my long-acting kind that lasts about 12 hours (I take some of that in the morning and again before bed), and the blue is the short-acting insulin that I take at meals to cover what I’ll eat. I also use it to counteract any high blood sugar. There’s lots of math involved in being a Type 1 diabetic. We count carbs and calculate our insulin dosage that way. Of course, if you get the math wrong, or eat more (or less) than you thought you would, or even if the ingredients of a dish are different than what you anticipated, it causes problems. Timing is a big deal, too. Once I take my insulin, I have to eat within 15 minutes or I run a real risk of having a low. When I’m out, I wince internally as I excuse myself from a table full of people to go to the nearest empty room or restroom and take my insulin, thinking I’m drawing attention to myself or interrupting the flow of conversation. I then try to sneak back to the table and hope the food will be served fast enough.
All this extra stuff I get to carry around and use in order to not die is expensive. My estimate, using actual costs of bare minimum supplies (insulin, needles, and test strips) is $1,600.00 a month. Never mind the quarterly checkups with my endocrinologist, the lab tests she runs to make sure my glucose levels are staying in a reasonable range, or the annual ophthalmologist appointment with dilation and scans to watch my retinas for possible blindness.
Type 1 diabetes is constant; you never really forget about it because you can’t. Your blood glucose is subject to not only when and what you eat or don’t eat, but also to activity levels, to hormone levels (what “fun” it is to be a female Type 1!), to stress levels, to sleep levels, to emotions, to EVERYTHING. In spite of how careful I am, and how absolutely God has blessed and watched over me, I still am unable to get my glucose levels where they supposed to be on a daily basis. It just is not possible, and being slightly perfectionistic makes it very, very frustrating. I can’t do what I must do to prevent all sorts of complications. Often I have to eat when I don’t want to (low blood sugar makes me queasy, or it’s lunch time whether I’m hungry or not) or I can’t eat when I really want that steak at 9 pm. You see, the problem with artificial insulin is that if you use it too much, you develop an intolerance for it. So just taking more insulin to eat that donut or drink that milkshake is not a good idea. I must use it sparingly so when I really need it, it will work.
It’s a world of dichotomies; the act of eating which keeps me alive is the thing that is killing me. My disease isn’t apparent and it encompasses much of my life. It’s a world where I am required to predict the unpredictable in order to stay alive. Emphasis on TO STAY ALIVE.
Closing thought: go and do an image search of “Type 1 Memes”. They’re funny because they’re true, and they may give you a little insight into what it’s like. We T1s tend to have a gallows kind of humor about it.