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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.


( 68 comments — Leave a comment )
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Oct. 31st, 2008 11:43 pm (UTC)
Diabetes runs (swings) rampant through my family tree, and I already have at least 2 other autoimmune conditions, so I'll doubtless get it one of these days. Thanks for reminding me that it's manageable
Oct. 31st, 2008 11:44 pm (UTC)
I tracked you from the livejournal diabetes group
I was initially diagnosed with type 2 diabetes, as a middle aged american morbidly obese woman with a family history of the disease. It came on to me *FAST*, though - I was in the hospital for unrelated reasons three months prior to my diagnosis, and everything indicated that I was fine at the time. Now, six years later, having determined that all the pills and diet and exercise in the world doesn't do ANYTHING except cause me to gain weight and feel sick all the time, I have gone on insulin, and I feel just SO MUCH BETTER.

It is a total revelation. However, how the doctor broached the subject was an eye opener - he acted as though I might hit him or cry or something. I was just so relieved!

We still don't know if I am type 1 or type 2, but I am now off all the pills, and finally the weight is coming off and I don't get up four times a night to pee, and my blood sugar readings are headed in the right direction. I am amazed!

(we do know that my pancreas is functioning at something like 20%)
Nov. 5th, 2008 12:05 am (UTC)
Re: I tracked you from the livejournal diabetes group
Very glad to hear the insulin worked for you, and that things are going so much better.

As I understand it, sometimes people see it as a sign of defeat, which might be why the doctor was so nervous. "If I have to go on insulin, it means the disease has beaten me." But like you said, sometimes it's amazing how much of a difference it can make.
Nov. 1st, 2008 11:15 am (UTC)
Jim, I'm glad you're not dead! Seriously, this was a thought-provoking read. Despite having known a few people with diabetes, I'd never understood what the insulin was all about. Silly, I know--could have just looked at Wikipedia, but never did. Thanks for posting this.
Nov. 3rd, 2008 01:38 pm (UTC)
I grew up watching my father give himself injections, and I wasn't clear on what the drug actually did until I had to start using it myself. (My very first published story included a diabetic and a ghost cat, and my father pointed out that I had the insulin doing the opposite of what it actually does. D'oh!)
Nov. 4th, 2008 06:15 am (UTC)
Erm, how'd you find an endocrinologist who wasn't an asshole?
Nov. 4th, 2008 11:54 pm (UTC)
Trial and error. The current one is ... adequate. He has a pretty "by the numbers" approach, which works to a point. But I get more out of my appointments with one of the diabetic nurses there, who knows the disease and also recognizes that people are different and one size doesn't necessarily fit all.
Nov. 4th, 2008 02:54 pm (UTC)
I see you already have a few posts (giggle) so I won't rehash, but from a fellow author, new LJ friend, and comrade in the disease fighting war, it's nice to meet you :)
Kim Smith
-author Avenging Angel
Nov. 4th, 2008 11:53 pm (UTC)
Great to meet you, Kim. And congratulations on the upcoming release!
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( 68 comments — Leave a comment )


Jim C. Hines


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