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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

( 68 comments — Leave a comment )
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threeoutside
Oct. 31st, 2008 02:19 pm (UTC)
Jim,

Thanks so much for posting this. And I am SO glad you're treating the disease with the seriousness it demands. Believe me, having lived with a man with Type II diabetes for 20 years (though he was only diagnosed the last 10), I see what it does to you when you fudge on your diet (pun intended). It is NOT pretty.

Have to say it again: I am SO glad you're dealing with it intelligently. It's very, very hard to do for some, I know.

Maybe you should do a funny video about Vanquishing the Destroyer of the Islets of Langerhans!
jimhines
Oct. 31st, 2008 02:26 pm (UTC)
Hi Terry,

You know, in some ways I think it's harder dealing with type 2. With type 1, there's no ifs, ands, or buts. The pancreas has quit, and you either get on insulin or you keel over.

With type 2, things are often working, they're just a little lazy about it. So there's no clearcut line of what you MUST do to treat it. Sometimes exercise and diet is enough, or maybe weight loss will do it, and you might need some pills but you probably don't need insulin, or at least not right away, and...

You're right that it can be awfully hard, and it's never pretty dealing with the effects, either for the diabetic or for his family.

That artificial pancreas can't come soon enough.

And you know, I write silly enough fiction that I should be able to work in a reference to the Destroyer of the Langerhans Islets one of these days :-)
(no subject) - threeoutside - Oct. 31st, 2008 02:30 pm (UTC) - Expand
(no subject) - jimhines - Oct. 31st, 2008 02:36 pm (UTC) - Expand
(no subject) - threeoutside - Oct. 31st, 2008 02:39 pm (UTC) - Expand
(no subject) - ellameena - Oct. 31st, 2008 08:57 pm (UTC) - Expand
(no subject) - ellameena - Oct. 31st, 2008 09:00 pm (UTC) - Expand
michaeldthomas
Oct. 31st, 2008 02:30 pm (UTC)
You and your family are an inspiration. :)

I have a very serious question about diabetes that has been nagging at me for some time. What happens to a vampire that drinks from an undiagnosed diabetic person? Would the vampire suffer the same effects? ;)


jimhines
Oct. 31st, 2008 02:34 pm (UTC)
Dude! That's one of the very first short stories I ever sold!

Hasa Kesla, about a diabetic vampire.

Okay, so it's not exactly the same. I never said in the story how she got diabetes, and I doubt drinking the blood would spread it. It's an immmune system problem, not a bloodborne thing. If anything, I suspect the diabetic would just taste a little sweeter, depending on whether the disease was under good control or not.

An out-of-control diabetic could be a very tasty snack!
(no subject) - controuble - Oct. 31st, 2008 02:55 pm (UTC) - Expand
(no subject) - michaeldthomas - Oct. 31st, 2008 04:00 pm (UTC) - Expand
sarah_prineas
Oct. 31st, 2008 02:34 pm (UTC)
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

Within 10 years for sure. J's part of a company working on this and they're developing a prototype now.
jimhines
Oct. 31st, 2008 02:35 pm (UTC)
Awesome. Thank him for me, would you?
(no subject) - cathschaffstump - Oct. 31st, 2008 02:46 pm (UTC) - Expand
(no subject) - jimhines - Oct. 31st, 2008 02:48 pm (UTC) - Expand
(no subject) - sarah_prineas - Oct. 31st, 2008 03:00 pm (UTC) - Expand
wldhrsjen3
Oct. 31st, 2008 02:39 pm (UTC)
Glad you have found ways to manage it. One of my dearest friends was diagnosed when she was 10, and seeing her handle it with such determination and matter-of-fact responsibility was a good lesson for me.
jimhines
Oct. 31st, 2008 02:45 pm (UTC)
I wouldn't have wanted to deal with this as a kid. Those are the years when you're *supposed* to be stuffing yourself with Halloween candy and eating big heaping bowls of ice cream. (Not that I ever did these things, of course!)
(Deleted comment)
(no subject) - jimhines - Oct. 31st, 2008 07:30 pm (UTC) - Expand
cathschaffstump
Oct. 31st, 2008 02:48 pm (UTC)
It's ironic that you were diagnosed with diabetes on Halloween. Yup.

Catherine
margaret_y
Oct. 31st, 2008 03:23 pm (UTC)
November is diabetes awareness month, so this is also a very timely post.
jimhines
Oct. 31st, 2008 03:25 pm (UTC)
Really? Go me!
cat_mcdougall
Oct. 31st, 2008 03:25 pm (UTC)
When daughter gets home, she's going to be reading this. We're still going through the testing now, and still haven't ruled out diabetes. (Haven't ruled it in either *mutters*)

This is the first year she's not going trick or treating. We've got things at home planned, but she wants to go. The trouble is, I don't want the candy around the house. It's a horrible waste to throw it out, and regulating it never stops the whining.

But yes. We're doing all the changing now, hoping that things will even out for her.

Thank you.
jimhines
Oct. 31st, 2008 05:11 pm (UTC)
I hope the testing shows something less serious and more easily cured. How old is she?
(no subject) - cat_mcdougall - Oct. 31st, 2008 05:19 pm (UTC) - Expand
(no subject) - jimhines - Nov. 5th, 2008 12:06 am (UTC) - Expand
gregvaneekhout
Oct. 31st, 2008 03:35 pm (UTC)
Twenty-four years as a type 1 over here, and I feel incredibly fortunate to have made it this long without suffering any complications. But I want a cure yesterday. There've been some incredibly promising research developments lately, and if the next president fully gets behind stem cell research, I think we could have a cure in ten years or less.

If we're ever on a con panel together we should do dueling glucose checks!
jimhines
Oct. 31st, 2008 05:10 pm (UTC)
"If we're ever on a con panel together we should do dueling glucose checks!"

I know at least one more diabetic author, and I'm sure there are more of us. We should arrange to all do a panel together, and then at some prearranged signal have an unannounced blood-testing race.

24 years? From the pictures I've seen of you, I'm going to assume this means you got it pretty darn young.
(no subject) - ellameena - Oct. 31st, 2008 08:55 pm (UTC) - Expand
(no subject) - gregvaneekhout - Oct. 31st, 2008 08:58 pm (UTC) - Expand
(no subject) - ellameena - Oct. 31st, 2008 09:12 pm (UTC) - Expand
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(no subject) - ellameena - Oct. 31st, 2008 09:33 pm (UTC) - Expand
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(no subject) - jimhines - Oct. 31st, 2008 09:51 pm (UTC) - Expand
(no subject) - ellameena - Oct. 31st, 2008 10:01 pm (UTC) - Expand
(no subject) - gregvaneekhout - Oct. 31st, 2008 10:20 pm (UTC) - Expand
(no subject) - ellameena - Nov. 1st, 2008 01:10 am (UTC) - Expand
(no subject) - ellameena - Nov. 2nd, 2008 06:23 pm (UTC) - Expand
(no subject) - gregvaneekhout - Nov. 2nd, 2008 06:27 pm (UTC) - Expand
(no subject) - ellameena - Nov. 2nd, 2008 06:40 pm (UTC) - Expand
vivian2112
Oct. 31st, 2008 03:47 pm (UTC)
Thank You
BTW, If you haven't joined LJ_diabetes comm, please do.

Anyway, thanks for posting this. I commiserate, I am a Type 2 and reading this made me think of my own similar experience.

Vivian in NC
jimhines
Oct. 31st, 2008 05:07 pm (UTC)
Re: Thank You
I hadn't been aware of that community - thank you.
sylvia_rachel
Oct. 31st, 2008 03:54 pm (UTC)
Good for you for (a) taking it seriously and (b) getting on with things. It is amazing the progress that's been made in the last twenty or even ten years.

Type II quickly did a number on one of my uncles (he went blind and lost a foot before he died) -- and it was his own damn' fault, because he knew he needed to change his diet, get more exercise, etc., and he wouldn't do it. I don't get that.

And from someone "celebrating" the thirteenth anniversary of cancer diagnosis #1 next month, happy anniversary ;^)
jimhines
Oct. 31st, 2008 07:28 pm (UTC)
I have a hard time getting that either.

Congrats on 13 years. May there be 100 more :-)
(no subject) - ellameena - Oct. 31st, 2008 08:54 pm (UTC) - Expand
dsgood
Oct. 31st, 2008 06:34 pm (UTC)
A few years ago, I went to the doctor because I had "ringing" (actually, twittering) in my left ear (the other one isn't useful) which wasn't going away. While I was there, I mentioned that an itch between two of my toes wasn't going away as fast as others had.

That got me tested for diabetes. I was on the borderline (type II,) on the wrong edge. Since I'd known several people whose diabetes wouldn't have killed them if they'd eaten right and made other changes, I brought my weight down to a safe level.

I also had high blood pressure; I reduced the salt in my diet (don't cook with it, but do eat some prepared foods), and switched to a prescription decongestant which didn't raise my blood pressure.

Oh -- I also got a hearing aid.

I still have the noise in my ear.
jimhines
Oct. 31st, 2008 06:45 pm (UTC)
It's strange, but in some ways, it can actually make you healthier. The diabetes itself sucks, but I know my diet and lifestyle are still a lot better today than they were 10 years ago.

Did they every figure out what the noise was?
(no subject) - dsgood - Oct. 31st, 2008 07:44 pm (UTC) - Expand
(no subject) - melissajm - Oct. 31st, 2008 11:45 pm (UTC) - Expand
alessandrastarr
Oct. 31st, 2008 06:40 pm (UTC)
Today is also Nevada Day, a state holiday. ;D
jimhines
Oct. 31st, 2008 06:44 pm (UTC)
I should know that. I lived out there for a year...
(no subject) - alessandrastarr - Oct. 31st, 2008 06:48 pm (UTC) - Expand
dynastic_queen
Oct. 31st, 2008 08:35 pm (UTC)
My mom's cancer meds and steroids combined really effed up the plumbing in her pancreas towards the end of her treatment cycle (the infamous 600+), for about six months. Fortunately, she no longer needs insulin of any kind now, but we keep that meter close, just in case.

Continue living strong, Jim. And live well.
ellameena
Oct. 31st, 2008 08:52 pm (UTC)
There is so much to look forward to for you. The general consensus now is that type I diabetes is an autoimmune disease, and if they ever learn to shut it down, your pancreas can regenerate. The only reason it doesn't is because your body thinks pancreatic cells are Evil.

There is a fantastic project going on North Dakota. A philanthropist built a new hospital. Instead of giving the hospital a mission based on his personal advocacy issues, he held a sort of contest and brought together experts to choose a mission. His criteria were that it should be a children's hospital, so it had to be a childhood disease. Second, it needed to have a regional focus, particularly for the native american community. Last I knew, they had narrowed it down to three candidates, and one of them was curing diabetes. The goal would be to pour tons of money and resources into curing one disease, within this philanthropist's lifetime. And he's old. I would love to see them choose diabetes. I think all of the ingredients are there for a cure, and the rest is sweat equity. Plus, a number of my friends would benefit, including you. (I will have to check with my source to see what the final decision on this was.) The other reason I think diabetes is a neat choice is that the discovery of diabetes was sort of the dawn of biotechnology.

By the way, I am in solidarity with you in abstaining from candy this halloween. I am exercising massive willpower, because I've seen some science to indicate that refined sugars and particularly high fructose corn syrup (which is everything) may be at the core of the rapid weight gain I've been experiencing. It sucks, but I've made it halfway through the day with no sweets, and I've been seriously tempted. :-(
ellameena
Oct. 31st, 2008 09:01 pm (UTC)
For my twenty fifth comment in this thread, I wanted to say how interesting it is to get a window into your experience with this disease. I've watched you do the whole blood sugar testing, button pushing thing before, but I really understand very little of what it's like to live with it. Like how complicated it is to dose the insulin, etc. Honestly, I thought it was mroe straightforward than that. Would love to read more.
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.
(no subject) - ellameena - Nov. 1st, 2008 01:46 am (UTC) - Expand
(no subject) - jimhines - Nov. 5th, 2008 12:02 am (UTC) - Expand
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