Insulin on my Mind

Last night I was listening to the radio and this song came on and I heard,
"The love you gave me, nothing else can save me, insulin
When you're gone, how can I even try to go on?
When you're gone, well I try, how can I carry on?"

It's this song that could be a love song to endogenous insulin. When you're gone insulin, though I try insulin, how can I go on without insulin?

I googled it tonight and it turns out its just a love song and the word I heard as insulin was ess oh ess. What can I say, listen to it yourself and tell me it doesn't sound like insulin.

Life Masters and Diabetes Reading

is one of those programs that has a nurse call you to talk about your health issues and is paid for in full by insurance. I've gotten a bunch of mailings and calls and today I succumbed and said what the hell, sign me up. So they took my medical info and said a nurse'd be calling.
they wanted to know what my health goals are. I said I'm working out and trying to get more muscular (I have a brother who is a weight lifter and who recently recruited me as a training partner; we lift weights together twice a week), but that what I could use some help on is that I'd like to get an A1c reading below 6%.

I picked 10 diabetes related blogs to read regularly and that I'm gonna comment on in the next month, and I'm putting them in the sidebar. I'll change them in a month or two, regularly, I hope. My rules for picking them was that they had to have mentioned diabetes at least twice in the past two weeks, that at least eight had to be first person diabetes accounts, and that the diabetics didn't have to be type one but do have to be on insulin. Oh, and they had to be in English or Hebrew and I didn't find any Hebrew ones. I can't read any other languages enough to really understand anything as complex as diabetes.

Organ Donation as a Diabetics' Issue

I'm on the Illinois Organ Donor list; if I die it's okay with me if they re-use my parts. Obviously, not the pancreas. I'm really comfortable with the idea of them using my kidneys or liver, not really so comfortable with the rest of it, but whatever.
One of the things that really strikes me about the Illinois organ donation campaign is who they've been featuring. The email I received from them today included this testimony:

I know firsthand the impact that a donation decision can make. For 25 years, I suffered from juvenile diabetes and was in dire need of a kidney and pancreas transplant. Thanks to an organ donor, I received my successful transplants in December 2006, essentially curing me of diabetes.Today, I am proud to serve as Honorary Chair of the Donate Life Illinois Workplace Partners program to help make a difference for the more than 4,700 Illinois residents who are still awaiting lifesaving transplants as I once did.

When I stood in line to get my state ID after I changed my legal name in January, I saw the walls covered in organ donation stuff. There were pictures from kids who received organs, but only one written testimony. It was from another former diabetic who had also received a kidney-pancreas transpant as a young adult. That was really sobering for me as a fairly new diabetic.

I have four brothers, but my blood type is O and they are As. My parents are in their early 50s; I don't think that with A1cs in the lower sixes, my kidneys will fail in the next twenty years, so that would put them in their 70s at least by the time I might need a kidney. There is no absolute upper age limit for kidney donors, but kidney function in people over 65 is usually reduced enough that their kidneys aren't considered good enough to donate.

So when I made my diabetes collage in mostly black and white, I included an organ donor card in color.

The average person who goes on dialysis dies in less time than the average wait for a cadaver kidney. Dialysis is a particularly dangerous option for diabetics. People on dialysis die of a number of causes. One of the larger ones is poisoning. Eating the wrong stuff or too much can be deadly if your kidneys don't work. But when you're diabetic, it's harder to stick to eating an exact amount. Another issue that sometimes kills those on dialysis is infections, which diabetics are particularly vulnerable. One of the other problems of dialysis is depression. A lot of people on dialysis let go of the will to live, for a host of reasons that I'm guessing you can understand.

However, I would still include dialysis as one of the top ten improvements in diabetes care from the last fifty years. I have a friend who waited seven years on dialysis for a kidney transplant; I hope that I would be able to do the same if it came to that.

Receiving a kidney from a living donor has a greater success rate than from a cadaver donor in general, but diabetics sometimes would be better going for a cadaver donor so as to get a pancreas and kidney together, which has a greater success rate than a stand alone kidney. If I could get euglycemia in a permanent sort of way, I would donate a kidney.

Zits or Celiac?

I've had acne for the last six years. Sometimes it has been so bad that people have asked me if I had chicken pox. My mother says it's not really a very bad case, it's just that most people use stuff to disappear their acne. I have never done anything to get rid of the zits. I think that they're sort of ugly but not really worth doing anything about.
In the last two weeks, I've developed big things mostly on my neck and back but also two on my thighs, that might or might not be pimples. They don't do anything if I squeeze them, they're awfully big for pimples (imagine a monster pimple), they itch and kind of hurt, and they're sort of scaly.
I'm wondering if these could be that celiac symptom, dermititis herpetiformis, or if I'm just being a hypochondriac.
I am also wondering: If I used an anti-zit thingy on something that was really a different sort of skin problem, would it still go away? If I used an anti-zit cream and the things didn't go away, would that prove that they're not zits?

Good Pinch, Bad Pinch

Today I was giving my five year old brother a time out, and he pinched me. I held his hands in mine and told him, No pinching.
Then I considered that, and said that actually, there is a time when I want to be pinched. Could he guess when? He calmed down dramatically, puzzled. He couldn't guess. I pointed at my arms and legs and gave the hint that that was where I like to be pinched- could he guess yet? Nope.
He asked his brothers- did they know? Nope.

When I want a shot! I told him. That's when I like to be pinched. Wanna help me do a shot? He thought that that was a great idea. He pinched my arm.
Not hard enough, I said.
This hard? he asked.
Good enough, I said, and stuck the needle into my arm. He pushed on the insulin pen, and the insulin was in in no time at all. He had not let go of the pinch.
Suddenly, he let go, pulling on the pen at the same time. Blood trickled down my arm in a thick line, and clearish liquid pooled by what was quickly becoming a bruise.
He looked at me, alarmed.
Oh well, I said. Good enough. And pulled down my sleeve.

Note to Self: make sure to tell brother to release the pinch, so that when he does I can move the insulin pen at the same time and avoid bleeding.

6.4

So my total history of HbA1cs is:
September 1, 2006: off the charts, over 16%
September 2, 2006: off the charts, over 14%
January 11, 2007: 6.5%
May 16, 2007: 6.3%
August 23, 2007: 6.3%
December 5, 2007: 6.4%

I'd like 2008 to be better than 2007. Sometimes I think about getting a dog or a CGMS. I am happy about the 6.4 because I thought it was probably even higher.

My mother says I'm doing well and that there's not much room for improvement. My endocrinologist says that there's only so much you can do without pancreatic function while maintaining quality of life.

But I am listening when my mother says that the saddest thing in the world is children dying before their parents. I am watching people age and I am thinking that I want to get to be old too. I don't want my mother to outlive another one of her children. I want to live to be 20, 30, 40, 50, even 60 or 70. And that means maintaining low blood sugar or having some really great genes, and I don't think I lucked out in the gene pool.

treasure

My mother is an M.D. but hasn't been in practice since 1992. The most recent place she worked at a doctor was a hospital in Chicago's worst neighborhood, Englewood, where all the medical equiptment is out of date. So when I was diagnosed with diabetes, she was wowwed by how small the lancets were and how little blood was needed for the test strips.
Last night she was looking for an eye chart and I was looking with her and I saw a Soft Touch lancing device. I was like, cool, a lancing device. Lemme try it. So she let me have it and the glucose monitor she had, a whole buncha lancets. My mother pointed out that it would probably get a lot of blood compared to the lancing devices I usually use. But I was like, that's okay, I still want to try it.
I did try it, and it got a little more blood that usual. It only has one setting! All of my lancing devices have multiple settings.
The blood glucose meter she had is the TRACER II. She doesn't have any strips to go with it, and the batteries are dead. I do have the manual. It says it was made by the Boehringer Mannheim Corporation. They are now Boehringer Ingelheim and they make pharmaceuticals but no blood glucose monitors.
Isn't that cool?

I'm seeing my endo on Wednesday and will get new prescriptions; I still haven't decided if I want to switch to just syringes for the Novolog or stay with the NovoPen Jrs. Argh!

I was looking at a nursing textbook published in 1987, managing families with chronic diseases. And of course, type one diabetes took a chapter. I was most amused and bemused to note their analysis of the HbA1c. Below 9%, they said, was excellent. 9-10.5 was good. 10.5-12 was fair and greater than 12 meant that the patient needed an immediate change in regimen. They listed reasons for poor numbers; high renal thresshold, noncompliance or pseudocompliance (psuedocompliance means that the patient didn't understand what he was supposed to do and did it wrong because of ignorance) with regimen, growth spurt/ major hormonal changes. It made me think that all these people who write about getting complications despite good control, if they were writing before 1990, could have had A1cs of 8% and that was good control.

I've been thinking about buying some strips to test urine sugar to find out what my renal threshhold is because there's a strong correlation (among diabetics) between renal threshhold and development of kidney disease, especially if you control for HbA1c. The lower the renal threshhold, the greater the chance of developing kidney disease. Renal thressholds vary widely from person to person and tend to increase with age.

Happy World Diabetes Day

Ellen of the CWD forums referred me to this post which was a weird read for me because of how much I sympathized.
Of course, you can't really compare diabetes to cancer, and it's not that cancer is "worse".

I think that a common fallacy among people struggling with something unusual, whether it's diabetes or cancer or being gay or dyslexic, is that other people don't understand at all because they don't have diabetes or cancer or dyslexia or homosexuality.
But most people have struggles. They understand what it's like to be different or what it's like to struggle, even though they don't understand the features peculiar to our own struggles.

And it's also fallacious to assume that a certain sort of struggle is always more difficult than another sort. Being gay might pose a huge problem for one kid, and be a source of misery and isolation, while another kid doesn't really think twice about it. Having diabetes might be the end of the world to you, or it might be a pretty small deal (even if you're realistic about it- I know a woman with diabetes that it's not a big deal for because she's got another terminal illness anyways and is beyond being fazed by the little stuff). Somebody's agony over what she should wear and her embarrassment over her clothes might make absolutely zero sense to me, but it's as real to her as my upset over my blood sugar. It would be wrong for me to say that's nothing- my problem is bigger- because it isn't. It isn't, because the problem is simply that I am upset and that she is upset and her upset is every bit as big a deal as hers.

This is my stats card, with only the stats for 2007 (I had a higher high score in 2006, and some higher A1cs)

A short while back, Richard Kahn of the ADA gave the keynote speech at the Diabetes Technology Conference. By now, if you read much in the diabetes blogosphere, you might know what he said, and you've certainly read some reactions.

Richard Kahn said that we're too quick to adopt new technologies when they work, rather than when they work better than what we've already got. And he is right.
He also made an analogy to a study where 70% of hypertension patients were not taking their meds correctly, and said that if doctors focused on getting diabetics to use current stuff correctly, we'd be better of. And that was more than a little bit off base.

But the reaction of a goodly chunk of the blogosphere was to get mad and say that technology, and specifically pumps, were something really important that insurance should pay for.

I don't agree. I've read study after study on pumping, and I think that for the majority of type 1s, pumping is a luxury. Pumping is a very very useful tool for dealing with diabetes in cases where: there's a predictable meal spike. Exercise really can't be managed otherwise. Or the person needs incrememnts of insulin too small for a syringe to handle.

Studies showing improvement in people moving from MDI to Pumping have a few major flaws. First, they fail to control for what regimen the person is coming from. If the person is just starting to carb count, if the person had been on two shots a day before, or if the person was on NPH and it didn't really suit them, then of course it's gonna help to move to pumping. Many people might switch because what they were doing didn't work for them.
Second, switching regimens is in and of itself something that tends to get people more involved in their diabetic care, and that helps. The classes and paperwork required to start pumping pretty much guarantee that the diabetic is going to put some effort into making the pump work for him.
And third, if we compare people on CSII to the rest of the diabetic population, I think you'll find that the ones on CSII are on average more affluent and more educated, because they were able to get on the pump, and those two factors are also a big part of diabetes control.

I think that for the majority of T1s, MDI can be made to work just as well as pumping. Since it's obvious that most T1s don't actually do as well MDI, I'm not sure if insurances should pay for pumps just on that evidence. But I sure as hell do not plan to ask mine to pay for a pump when I don't think it would make a difference in my overall diabetes control. No fucking way. The money could be better spent on multitudes of other things.
People tell me that pumps are really great, but the average pumper has worse control than I do. People tell me that pumping is as good as what you put into it, but I think that they fail to apply that same thing to MDI, and I think that MDI is also as good as you make it. I think that you need to pick and adjust from MDI regimens to one that suits you, that carb counting is a great idea no matter what, and that accuracy in dosing is MDI's greatest flaw.

I've been thinking a lot lately about the plight of diabetics in South America, parts of Asia, and Africa, who do not have the technology to deal with diabetes. Places where there's no electricity to keep insulin cool. Places where insulin costs more than the average adult earns and places where test strips are too expensive, places where diabetes is a fairly quick death sentence.
And I've been thinking about the approaches to getting diabetes care into these regions, and I think they go about it wrong, and this ties into what Kahn said. First, I think that trying to provide blood glucose test strips is inefficient. If we are only providing these for a limitted time, say until the diabetic turns 18, and then the diabetic can't afford them anymore, it might be useful to teach diabetics how to make due. If tests for glycosuria are much cheaper, then lets use our blood test strips to figure out the diabetic's urine glucose thresshold so that he'll have an idea of how it correlates, because if he can't afford blood test strips, then let him make the best possible use of what he'll have.
I know Novolog keeps outside the fridge in a way that Lantus and NPH do not. So let's make the best use of Novolog, teach people how to use expired Lantus, and maybe if there is a basal insulin that's as hardy as Novolog (is there?) then let's make sure to use that. Sometimes I wonder if it might also be cheaper to start production of animal insulins in some of these countries rather than trying to export our analog insulins. If it might be more affordable. If the Saxls did it, maybe it can be done.