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Happy Diabetes Day!

Halloween is a strange holiday for me. It's ten years ago today that I walked into Sparrow Hospital so that I could be officially diagnosed with type 1 diabetes and begin treatment. Can I just say how ironic it was to see Halloween candy dishes brimming over with goodies on every reception desk in the hospital while I was going in for my diabetes diagnosis?

We already knew I had the disease. I was in my second year of grad school, and for months I had been ... unwell. I was thirsty all the time. My mood had gotten distinctly Hulkish, to the point where I was ready to smash my roommate when he dared to leave unwashed dishes in the sink. (I know I lost it with at least one of my students, too.) Probably the most telling symptom was that I was peeing all the time. All of this together painted a familiar picture.

See, my father is also diabetic. He was diagnosted diagnosed at age 24, when he was in the middle of grad school. So there I was, 24 years old and in the middle of grad school. I drove home, went out for dinner with my parents (this was last time I drank real Cherry Coke), came home, and tested my blood sugar on dad's meter.

The meter errored out because it wouldn't read that high. (Normal fasting glucose shouldn't go higher than 126. The meter goes up to 600.)

Quick tutorial -- type 1 diabetes means my pancreas no longer produces insulin. Insulin is used to break down the glucose in your blood and use it for fuel. Without insulin, two things happen. The glucose remains in your blood, pushing that number higher and causing some long-term damage. Also, your body isn't getting glucose for fuel, so it starts to break down fat and muscle, which has some toxic side effects. (You're thirsty in part because your body is trying to flush the toxins, which is also part of the reason you end up peeing all the time.) By the time of my diagnosis, I had dropped about 20-30 pounds. I think I weighed 130 or so. (I'm about 5'7".)


I wasn't happy about having the disease, but having watched my father deal with diabetes, it wasn't as scary as it might have been. Heck, being diagnosed in 1998 meant I had an advantage. When my father started out, there were no glucose meters, no insulin pumps, no quick-acting insulins. You tested your blood sugar with a urine test strip, then matched the color of the strip to determine a rough approximation of what your glucose was hours before. These days it's a 5-second blood test. (But hey, we both have it better than the early days, back when you had to boil your own glass syringes, sharpen the needle, and use cotton to make sure there were no burrs on the steel.)

I started out on injections, and one of the first things I noticed was how much better I felt. The past few months had been a gradual decline, and you don't notice just how bad you're feeling until you're suddenly healthy again.

I'm a control freak, so I set out to beat this thing into submission. I made some dietary changes. Switching to diet pop was the most obvious. I also checked my blood sugar at least 4-5 times a day, and took probably 3-4 injections per day. I started exercising more. As a point of pride (or stubbornness), I experimented until I figured out the exact insulin dosage for a hot fudge sundae. (3 units Humalog mixed with 1 unit NPH, though that's changed over time.)

In so many ways, I've been very fortunate. We have tools to control the disease, and I've had health coverage that allows me to actually get those tools. I've also seen the effects of diabetes, so I knew to take it seriously. My father occasionally needed Mom to shove candy or OJ into his mouth to get his sugar back up. I used to play racketball with him and some of his friends, including one man who lost the lower part of his leg to the disease. My mother donated a kidney to a family friend whose diabetes had destroyed hers. I'm not perfect by any stretch. I need to make time to exercise more, and my diet has gotten less healthy than it might be, but I know better than to ever ignore the diabetes.

I remember dad once saying it was strange to know what it was that would kill him. I've thought the same, but I don't think I agree anymore. He's been diabetic over 30 years, with very few long-term effects. I've had it 10, with (so far) no detectable long-term damage. And the tools to control it keep getting better. I'm on an insulin pump now, and within 10 years I suspect I'll have a continuous glucose monitor checking my sugar every few seconds as opposed to testing 6-7 times/day, which is what I do now. I've started taking a cholesterol pill to keep that under control, but so far it seems to be working. A cure would be nice, but the tools to manage diabetes are pretty darn good, and I believe I can keep this under control long enough for something else to kill me :-)

For the first few years, I'd go out on Halloween and have a "real meal" in defiance of the disease. Real pop, ice cream, all that good stuff. I'd also test much more frequently, and take a lot more insulin that night. I don't do that any more. I don't think about it that much. It's just there.

More than anything, it's an annoyance. The body doesn't follow logical rules. I can eat the exact same meal two days in a row, taking the exact dosage of insulin. One day my blood sugar will be 120. The next it will be 200. Same food, same insulin, totally different result. That's obnoxious. I have to get regular bloodwork and visit the endocrinologist more often than I'd like. (I also had to work to find an endocrinologist who wasn't an asshole, which took a few years.) I've got good insurance, but the copays still add up over time.

Changing out the insulin pump every two days isn't exactly fun either. There are a few places where I've built up scar tissue in the fat layer, so the insulin doesn't absorb as well. And then there are the days when you insert the catheter and hit a nerve or blood vessel. My son likes to watch me change out my set and play with the old plastic vial, so I can't say the words I want to say when I hit those nerves.

Side note -- my son also insists on making me check his blood too, which I pretend to do. It's a fun little game. (My daughter is too old for such games, I'm afraid.)

Anyway, there's no Message here. No point I'm trying to get across. It's just strange to look back and realize I've been living with this for ten years. Considering diabetes was a death sentence a century ago, I consider myself to be pretty fortunate. And if you've gone to one of my panels and wondered what I was doing when I prick my finger and mess with that weird device in the black case, now you know.

I'm pretty open about the disease, so if anyone's curious or has questions, please don't hesitate to ask.

Comments

jimhines
Nov. 1st, 2008 01:43 am (UTC)
I wish it was straightforward. I'm good with numbers. Give me a carb:insulin ratio, and I'll keep my blood sugar at 100 +/- 5 points. And the ratio does help, but there are too many other factors, everything from how stressed I am at work (application testing - ack!) to whether or not the pump site has built up any scar tissue, which slows the absorbtion of insulin, to whether or not I exercised in the past 24 hours (since exercise can continue to affect the metabolism the next day). Fun stuff.

It's definitely manageable, and I've kept my A1C readings below 6.0 for the most part, but it's as much an art as a science.
ellameena
Nov. 1st, 2008 01:46 am (UTC)
Wow. Are there a lot of people who can't manage this? Sounds like something not everyone can do.
jimhines
Nov. 5th, 2008 12:02 am (UTC)
Depends on your value of "manage". My control isn't perfect, but I think it's pretty good so far.

I've always been good with math, so the numerical aspect of the whole thing makes sense to me. Carb count = carbs/serving times serving size, which is then factored into the carbs:insulin ratio, and voila, there's your dosage. Sort of. Bt I know that can be hard for people too.

And then you get things like insulin insensitivity, scar tissue affecting absorbtion, or type 2 where you're not even dealing with insulin but just fighting right on that border of whether diet & exercise are enough...

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