The insulin came and so did the rest of the supplies. The box was soggy, I'm not sure what from. I'm trying out the insulins and will see what happens. My father thinks we should just call the company now and demand new, but I'm wanting to try them first. Maybe they're good.

I asked my therapist not to ask me if I'm hypo, because I hate hate hate that question. She objected on the grounds that if my hands are shaking or I'm being quiet or I'm stimming or whatever, she needs to know whether I'm doing the behavior because of my emotional state or because of diabetes. I said that if my hands are shaking, she could just ask me why my hands are shaking!. My therapist said okay to that.
My mother says that if she asks if my hands are shaking, the question are you hypo is implied. I guess it might be, but somehow, it feels like a much much friendlier question.
You could ask anybody why hir hands are shaking.

Package from Roche

Roche had (probably still has) an offer for free multiclix, so a while back (can't find in my calendar how long ago) I called. Asked for the multiclix, they asked if I'd like a complimentary subscription totheir magazine, Completing the Circle of Care. I said You betcha.
The woman on the phone told me that if I'd received another Accu Chek offer in the recent past, I'd get a letter telling me that I wasn't eligible. Otherwise, I'd get the multiclix. In either case, I'd get something from them in four weeks.
Well, the package came today. I got a new lancing device, two drums, some posters saying how great the multiclix are, and a copy of the Completing the Circle of Care (folded because of being inside the box.
And you know what? The multiclix really does feel pretty good. I keep managing to misplace my original ones, and having to use miscellaneous others, and I like the Accu Chek. It's also much easier to change the lancets with the Multiclix.
I might not always like Roche's meters, but the multiclix? Two thumbs up. It gets me blood without too much pain.
On a few occasions, I've been out and about and taken out the drum because it was all used and then realized, OOPS, I don't have another drum. And then I have had to manually draw blood or just skip the test. It took me about five months of dealing with diabetes to get into the habit of getting the new drum before removing the old one.

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.

Being a Gunea Pig

Chicago does not have a diabetes meetup group; costs money to maintain so it disbanded weeks after it last formed. But every month or so meetup sends me an email with the profiles of whoever has signed up as being interested in a meetup group. This month, one of the interested was an ad for a diabetes research project. I'm pretty sure that that's against meetup's terms of service, but what the hey, I called them this morning. Here's what they say the project is:

-they want people over the age of 18 (hey, I'm almost 19)
-who currently test their blood sugar and are willing to test at least 3 times a day (yump)
-who understand English (yeps)
-who can read normal sized print (this will make sense if you keep reading)
-who can get to their facilities
-who are willing to come in three times for an hour each, to any of their nationwide research places (the nearest to me is in Schaumberg, and it will take me two and a half hours by public transportation to get there)
-not currently in any interfering research studies (I told the lady about the other diabetes study I'm currently in, didn't tell her about a different research study I'm also in)

in exchange, research participants are given one meter at the first session, with test strips. They are supposed to use that meter (I don't know when or how much; I'm not actually in the study yet) for 36 days, at which point they go back in to the clinic, turn in the equiptment (the woman on the phone said equiptment), and get a different meter with strips. Repeat and come back for another session (and presumably a survey).
Then I get a check for 200$. So, I get at least 100 dollars worth of test strips, plus I get 200 dollars, plus I get to try out new meters. Could this get sweeter? Not by a whole lot. The getting to try new meters will be the best part, I hope. I asked, to make sure, if they provide the test strips, and she said yes.

I've turned in my diabetes art project. I intend to work on it some more. Blogger is having a problem uploading my image. The error message says that they're aware of the problem and working to fix it, so I guess I'll try again later.

I saw a link to this article on CWD. It says that rates of hypoglycemia and DKA in pregnant women on pumps were higher than those on MDI. Go MDI!

I think I'm very close to starting testosterone, which is very exciting for me. I don't expect the diabetes to be too much of an issue there. My regular, diabetes endo, is considering whether or not he's willing to put me on testosterone and will get back to me on Monday or Tuesday. If he's not, then I'll see an endo who's more experienced with transsexuals. Mine has only seen me.

I did a youtube video recently on glucagon. It's not exactly a great video, but whatever. If you click on it and go to youtube, you can read a transcript of the entire thing, which I put there for people like me who are better at understanding written word than spoken word.

Novopen Jr update

The walgreens website says you need a scrip for the pen, but when my father went and spoke to the walgreens folk, they said they'd order it without a scrip, without insulin, and that it'll be here tomorrow.
Yay!

I need another pen because I want to use up my pen supplies and because I'm low on syringes. I find the pen more comfortable when injecting my legs and stomache, but less comfortable for my arms; I think it's the weight. I think it would be really cool if someone had weights designed to go on syringes.

I also like the Novopen Jr because a half unit makes a significant difference for me, especially in corrections. Dosing to the half unit with a syringe is difficult.

And the final point in favor of the Novopen is that I don't ever want to get confused and inject the wrong insulin. That's how dead in bed happens.

Trying to Replace a Novopen

I lost my second Novopen Jr a couple weeks ago. It was at my parents' place and then we couldn't find it. I just used syringes and then, of course, that made me low on syringes.
We are trying to replace the pen and lo and behold, it's prescription only. People keep saying to me that it comes with insulin, but the ones I got first didn't. They came with three vials of saline. No insulin.
Why the hell is this drug prescription only? I am one pissed off diabetic.

Update: Yom Kippur, Graphic Design, Allergies

I haven't used another I-port yet. Maybe this week.
I fasted for Yom Kippur and was surprised to go high instead of low for the day. However, I did not get ketotic (or at least my urine didn't), and I didn't have to eat, I didn't go hypo, and I felt pretty good, so I'm counting the day a success.
I did a diabetes collage for my photoshop art class and then the professor said we'll be keeping the collages as part of our next project, which is to do a triptych. The piece I already did is called Application of Exogenous Insulin and is about insulin use since 1923, with 1923 newspaper articles on that topic as my background. It's in black and white. I'm thinking I'll make another black and white piece, this one on the treatment of complications, as another piece, and then do a color one in the middle. It's the topic of the middle one that I am thinking on.
I want the middle one to be less somber. That's important. I want it to be more about diabetics, while the other two are more about diabetes. I want it to be about culture; I'm thinking about making as a background a series of pictures of diabetics inside of glucose meters or pump interfaces or maybe other machines. I think I want to include all kinds of diabetics on insulin; 21st century humans, 21st century dogs and cats, 20th century people, old people and young people, visibly disabled people and nonvisibly disabled people. That might be the border of the piece. Then inside I want other stuff. Artwork on diabetes, comics on diabetes, I don't know. Ideas? If anybody wants to send me their artwork on diabetes or wants to be sent a finalized copy when its done, let me know.

Oh, and I just got diagnosed with allergies. I'm thinking about doing allergy shots. Do any of you have insulin dependent diabetes + allergies? How do the allergies and the medications or shots affect your blood sugar and insulin needs?

I-PORT, take 7

August 31: My mother put the Port into my thigh on Friday afternoon. It hurt a lot. I took Novolog through the port, which stung very slightly, as I noshed all afternoon.
I felt flushed as I read to my brother Friday afternoon, so I checked my blood sugar: 78. I got into a physical fight with another brother, and then I went back to reading a book. I felt hypo, but I didn't feel like checking my blood sugar. When I did, the meter read 41. OK. Not good. I went and ate a small something, don't remember what. I was really annoyed that my family wasn't stopping and paying attention, and my verbal skills went out the window. My folks wanted to start the Sabbath meal, but I was feeling bad. I told them that I was gonna go to sleep on the couch in the living room.
I went to the couch, lay down. My mother came in to check on me, asked me to check my blood sugar. I said no. She asked me to move to better lighting so's she could check my blood sugar. I said no. She asked me to eat something. I told her I was sad, and started crying. She tried to convince me to eat or test, and I kept telling her: I'm sad, I'm sad, food is ick, I'm sad, I'm sad, I don't want to live. My mother got light, and tested my blood sugar at 40. She brought me a cup of chocolate soy milk which she sad was 14 grams of carb, and asked me to drink. I winced and gulped, lay down, exhausted. About two hours later, I was up to 89. I ate a small snack, took a conservative amount of Novolog through the port, and went to sleep.

September 1, Diagnosis anniversary: In the morning, my blood sugar was 158. I kinda pull at the port as I pull my pants on in the morning. All day, my blood sugars ran high despite a lot of Novolog through the port: 230, 186, 218, 199.

In the wee hours of September 2, my blood sugar was 104. I woke up with a 118. Skipped breakfast and was at 92 by lunchtime. Following lunch, my blood sugar was 199. I started supper with a blood sugar of 79. I injected through the port for supper. By this time, the injections were entirely painless- I was wowwed. Following supper, I was ready to go to sleep but got a reading of 330! Washing and rechecking gave me a reading of 291. I corrected through the port with four units of Novolog, set my alarm clock, and went to sleep. I slept through the alarm.

On September 3, I was surprised to wake up with a beautiful 138. Following a Ported Novolog breakfast, I hit 225. Correction through the port had me at 184 two hours later; doing nothing had me down to 110 and then 61 four and seven hours later. Before supper, I was at 153, and afterwards I hit 338. Correcting with five units through the port had me at 304 two hours later. I took the port off. I had been wearing it for just over three hours, and had the least irritation so far, but I seemed to have been getting poor absorption towards the end. There was a hard bump right by the site that I suspected of being unabsorbed insulin. I corrected, not into the port, and set my alarm.

Three hours later, I was hypo.

Today, I did not go high after breakfast, lunch or supper. I think I was getting poor absorption from the site starting at least on Sunday and maybe on saturday. On the other hand, no site irritation! Yay!

As y'all know, I haven't been super duper happy about the accuracy of my last two Accu-Chek avivas. I got a phone call from Accu-Chek about three weeks ago wanting to know if I was totally satisfied with my Accu-Chek products. I told them no, my meter read 30% high compared to the lab! That's ridiculous! They send me ten sample test strips and two bottles of control solution; my meters passed the control solution test.
I went to the endo, and my meter tested 20% high.
I complained on here and elsewhere. Accu-chek commented and sent me messages telling me to call customer service.
I called customer service. I asked them if they had a more accurate meter. They said no.
Guess what? They're sending me a new aviva meter, plus some other type of meter, and an envelope for me to send my meter back. I'm not sure which meter they want back. I'm not sure if they're putting enough postage on for me to send both back. But anyways, I'm kinda hopeful about the new ones. I mean, that first accu-chek I had was pretty accurate. If only I hadn't left it on the bus...


Oh, and this post was gonna be titled I-Port, take 7, except that the port is still going strong.

Eyes

On Saturday, I'll mark one year of exogenous insulin usage.
When I was in the hospital, one year ago, I was told that there were a bunch of things that I, as a diabetic, should have checked annually.
My kidney function. Celiac antibodies. Feet and reflexes.

And eyes.
On the morning of September 1, 2006, when I thought that the doctor visit was going to a waste of time and that all I'd had was a really nasty cold that I was being a baby about, my vision, with glasses on, was 20/20. Without glasses, I coudn't see a foot away. My night vision was terrific, and I generally preferred dim lighting because light bothered my eyes. I had preferred dim lighting for about three years.
I was put on IV insulin that night.
On the morning of September 2, 2006, my blood sugar was down to about 200. My vision, without glasses, was about 20/80. The glasses I had were way way way too strong.
For about three months, my vision was funky. It was nonconstant, changing. I never knew whether I'd see or not in five minutes. I sat as close to the board as possible in all of my classes, went around without glasses, and struggled to see.
Eventually, my vision got slightly worse, to about 20/100 without glasses. I got new lenses that let me see at 20/20. My night vision is screwy and I now prefer the light.

Partly because of my funky vision, and partly because I was very familiar with complicated diabetics, I worried that I had already had damaged eyes.
I went to see an ophthamologist. Whereas usually nurses are cooler than doctors, the nurses in that office were some of the most unkind people I've encountered. I'm not exactly fearless when it comes to eye drops, and I kept closing my eyes. The nurse made fun of me, called me a baby, asked in a very mean way if I wanted to keep my eyes safe or not. The doctor was nicer, but still.... YEARGH. My eyes showed no sign of retinopathy, he said. I had my optometrist check for glaucoma a few months later; no glaucoma.
I know that I'm supposed to see an ophthomalogist every year, but them being mean and nasty, and this being only one year in, I think I'm going to take a pass this year.

Technological Medical Advances

The results of the blood draw are in. My A1c is once again 6.3%, the same as in May. I'm a little bit disapointed, but not very. 6.3% is not bad.
My meter, a different accu-chek aviva, read 103 while the actual value was 87, once again high, but this time not so much so. I had been hypo, my meter reading 56 but me being dizzy and losing my peripheral vision, about two hours later.
My endo and I had discussed how the meters are all inaccurate and there's nothing we can do about it and I was once again feeling really frustrated. After the endo visit, I had walked over to the Harold Washington Library Center, gone to the RC660 part of the library, and picked out a book.
A Gift of Life by Alfred Beckler, 1983 The title is taken from the slogan of a kidney foundation. Alfred Beckler was diagnosed with juvenile diabetes in 1957, when he was fifteen years old. For reference to my life, he developed diabetes fifty years before me, the year my mother was born, and at approximately the same point in his life. He did not have the advantages of adjusting insulin for food intake, and he didn't have his A1c taken, and he didn't have a home glucose meter.
Fourteen years later, 29 year old Alfred Beckler, who never got screened for renal problems, as I can get screened whenever I want, was diagnosed with kidney disease because of the fluid in his legs. He had at that point three sons. He was given medications to treat the symptoms of kidney disease; medications to help his heart and his blood pressure, but nothing for the kidneys themselves. He got worse and worse and within a few years, he was told that he was going to die. He learned about that novel therapy, kidney transplants. He was told that doctors were unwilling to perform kidney transplants on diabetics. He persisted and found a willing center. Two of his siblings tested as matches, and he received a kidney transplant from his older brother. Alfred's kidneys had to be removed first, and he was put on dialysis. This sounds like an excruciating ordeal. Dialysis was in much earlier stages at that point.
Beckler's sight was totally gone within a few years.
Wanting to protect his remaining organs and his new kidney, Beckler sought a cure for his diabetes. He received a partial pancreas from his older sister, and it began to make insulin, but shortly after the transplant he got an infection and the immunosuppressants had to be cut back and so he lost the partial pancreas.
Eventually, Beckler received a pancreas from a boy who'd been in a car accident. The new pancreas was still producing insulin when this book was written. At the time that this book was written, only 57 pancreas transplants had been done. At the time of transplant, Beckler was still measuring urine sugar.
As I read this book, I found myself telling myself again and again that I have much much much better tools for controlling diabetes, that I have better diabetic control than Beckler could have dreamed of having. That drugs are available to protect my kidneys should I ever develop kidney disease. That dialysis these days has come a long long way. I am not particularly worried about my sight.
This book is slightly ablist in the introduction, where Beckler writes that he refused a handicapped persons award because he does not want to be thought of as a handicapped person, but it also presents the discrimination Beckler faced (faces?) as a blind person, as a person with kidney problems, and even as a diabetic. While learning to go out on his own, newly blind, Beckler had difficulty crossing the street and fell. The people waiting for the bus ignored him and his need of help, assuming he was drunk, despite the white cane.
I would love to know what happened to Beckler; is he alive? Did he get to keep the pancreas? Did it keep working?

Endo Visit

I went to see my endocrinologist today.
I drank a lot of water before hand.
Went into the office, good news is that my weight has not gone down, is actually half a pound greater (which is about the same thing as no difference).
As I waited, I could hear the endo in the room next to me, pleading with the patient to please test her blood sugar just once per day.
He came into the room, asked me how I was doing. I told him my blood sugar was great but that I felt crappy. He showed me Calorie King, which he was very excited about. I told him about my recent insulin regimen, showed him my meters and a few charts about my overnight numbers. We talked about the accuracy of various meters, and I asked him how to cope with my meters, knowing that I'm gotten readings more than 30% high at times; should I assume that a meter that runs that much higher than reality is always reading at least a little high? He tells me no, I can't assume that.
He checks my reflexes, talks to me about how I'm doing in college, checks my blood pressure (110/70) and my pulse (68).
He does the A1cs with a venous blood draw rather than a finger stick. He draws the blood himself. This time he gets blood on the very first poke. Yes!
He asked me what I guess my A1c will be, and I, optimistically, guess 6.1%.
I tell him it depends on how much it's stacked towards recent readings; I've had fairly low numbers for about three weeks but ran high for about two weeks before that. He says that A1cs tend to go up much faster than they come down. I tell him I guess it will be between six and six and a half percent. I'm in my heart hoping for even lower, but wouldn't actually be surprised by upper sixes. My last two readings were 6.5% in January and 6.3% in May; I'll blog as soon as I have the results.

I-PORT, take 6

I've been forgetting to try the Ports.
On Friday afternoon, my mother put the 6th one into my left thigh. I did not use skin prep; I took a bath and then a shower to get clean beforehand. It hurt going in and the initial pain wore off in minutes.
The area remained slightly sore for the entire time that I wore it, but it didn't get really bad. Needles didn't hurt going into the port, but about half of the shots had a sting when the insulin went in, with more sting towards the end. I only injected Novolog into the port, and I put about 20 shots into it.
I removed it this morning after breakfast. The breakfast Novolog shot had stung. It was 8 units, and the last four stung a lot more, but it was still less painfull than most of my injections. The area under the adhesive was only slighly red, but the inner area had swollen and there was a semicircular bruise that was slightly swollen. The cannula was at a 70 degree angle from the port (it goes in at a 90 degree angle), and had a small amount of pus and blood inside. There was a small amount of blood (three large drops) from the site.
My blood sugar ran fairly decently during this time, with the highs being attributable to Lantus problems.

In other news, it appears that my fatigue isn't a direct cause of blood sugars! Yes! It seems that I might have hepatitis A, which is absolutely wonderful because guess what? Hepatitis A should be GONE in just a couple of months. Which is longer than colds take, true, but way shorter than the expected duration of diabetes. The fatigue will be gone, did you read that? I'm happy.
I don't actually know that I have hep A; somebody very close to me found in a routine doctor visit that xe has some liver problem and was tested for hep A and will get the results back today; but I have every single symptom of phase 2 hep A. I've been vaccinated against hep B. Phase 2 hep A symptoms that I have include anorexia (meaning lack of appetite, not anorexia nervosa), nausea, joint pain, itchiness, fatigue. I'm also glad that if I have hep A, I probably don't have arthritis :-) I was pretty worried about it.
Hep A is very rarely fatal in people whose immune systems haven't been severely compromised (diabetes is not severely compromised). Severity of symptoms ranges from none to extreme fatigue. By the time you're where I'm at, you can treat the symptoms but otherwise you can't treat it. Like chickenpoz, having it once confers lifelong immunity. Althought it is sometimes classified as an STD, it is usually gotten other ways, such as working with small kids who aren't totally toilet trained (person close to me is a family member, not a significant other).
Peace out,
Jonah

Diet and Type ONE Diabetes

I don't think I'm alone, as a diabetic on insulin, in getting upset when people try to tell me what I can eat or assume that I'm on a diabetes diet. I'm not. But there are a lot of diabetics who are. I think every adult diabetes forum has at least one Dr. Bernstein fanatic.

Two weeks ago, I got a cold. It made me insulin resistant, and I ran 200-400 a LOT. My meter's 7 day average hit a six month high of 148. Then I stopped eating. I said hey, I hit the 300s after supper the last three days, I'm going to skip supper tonight. Well, I went from 110 to 240 at suppertime anyways. Oops. Opened a new bottle of Lantus and upped my dosage dramatically, ate an average of about 1000 calories for the following week. Guess what? My new 7 day average is at an all time low of 101 (including one test of a nondiabetic friend who was at 142), and there's not been a single number under 50 in there. Yee ha! Only one number over 200.

Days on which I don't eat are almost always good blood sugar days. They run low but not terribly so- rarely does fasting make my blood sugar go below 50. Eating low carb doesn't really give me the same effect- almonds and chumus can still make me soar. Skipping supper tends to make my overnight numbers remarkably stable. I think that there is something to be said for the ability of dieting to control blood sugar. OK, nothing new here, every single person you've encountered on your diabetes journey has said that.

But their message has always been this: carbs are bad for you. Don't eat sweets. Diabetes? oh you must have such a sweet tooth! Is that on your diet?
Their message is: diabetes HAS to be controlled by diet. You can't be healthy if you eat the same junk I eat.

There are major drawbacks to low carb diets. I'd rather avoid malnutrition and ketosis. Dr. Bernstein's willingness to do intravenous injections also turn me off. Sorry, but I want healhty veins to last me for decades to come. Going low calorie makes me function worse, mentally and physically, and I have a distressing tendency to get underweight. I do not want to encourage any latent tendencies towards eating disorders. Low carb is especially difficult if you happen to be a picky vegan (like me).

And while low carb's proponents claim that it's the only way to go, much in the way many pumpers tell me its the best way, the fact is that what I'm doing works for me. I'm having a blood draw for an A1c next week, and I expect it'll be around 6% plusminus .3. I haven't gotten ketotic, excursions above 200 are about a weekly occurance unless I have a cold, and Dr.Bernstein himself has more lows than I do.
Even in the last week, while not eating much, much of what I have eaten has been carbs and those have largely been juice and pedialyte, with some bread and rice cake. Not low carb foods.

My endo is a big proponent of diet, sort of. He is of the belief that it doesn't particularly matter how many carbs I eat, so long as it's about the same number, at about the same times, every day. I tell him I'm a college student with a hectic schedule and I can't do that. Sorry, man. He doesn't get upset about it, although I have the feeling he might if my craziness didn't result in A1cs below 7, because low A1cs are his other big thing.

Anyway, the cold is mostly better, probably will be all gone by my doctor visit. I'm going to be drawing charts and stuff because I like to, even though they confuse the endo. I think I've lost a few pounds since my last visit, and I'll find out if they're enough pounds to cause alarm. I have an unhappy suspicion that they will be. I'm going to tell him about my memory problems and ask for a recommendation to a neurologist, which I will use if the thiamine supplements don't do the trick. I'll have my blood drawn (he draws it himself, my endo) and call in a day or two later to find out what the A1c is. I think I'm going to ask him to run a c-peptide as well. We'll be checking to see how my meter's doing.
At the visit after this one, in November, it'll be time to renew scrips, and I think I'll be asking for a different brand of meter. I've heard good things about Jazz. It and the accu-chek are the only meters bragging about accuracy, and at least one of my three Avivas has been woefully inaccurate (see my posts from May).

Cure

Long before I was diagnosed with diabetes, when my only diagnoses were about the function of my brain, I used to say that people should try curing fatal things like diabetes, and leave us alone.
But now I have a diagnosis of diabetes, and I can't stand the cure rhetoric. The I've had xxxx shots and xxxxx finger pricks and xxx site changes. This does not represent me. Yes, I've had at least a thousand shots and I'll hand thousands, maybe tens of thousands more. Yes my fingers sting, yes my limbs bruise. NO this is not suffering. No, this is not what needs a cure.
We need change not because little fingers bleed, not because skin is punctured, not because we "deserve" to be normal, not because children should be children. Because guess what? You coach it right and kids are proud of blood, learning great skills from doing shots, learning about "normal". This is just disability.

We need change because diabetes is a death sentence, albeit one with two lawyers and appeals to supreme courts and a long delay from sentencing to death. We need change not for kids with diabetes but for kids who are diabetes orphans. We need social change for the teenager who's ashamed for guys to see her pump; we need a cure to deal with the teenager who's dead in bed.

To me, having to take shots is like having to eat; no big deal, though often an annoyance. Monitoring blood sugar is not particularly tragic, any more than coloring is. It is time consuming. Going hypo is a little more problematic because of getting weepy, and going hyper makes me lethargic. These are livable, nontragic annoyances, disabilities maybe.

I wear my other disabilities as a part of who I am and what has built me to where I am. Diabetes too is something I wear out and proud, as a disability.

But diabetes, unlike the rest of my disabilities, is also a disease to me, because unlike my other disabilities, which change the way in which I live my life, diabetes has the potential to end my life.

I would consider diabetes cured if shots gave me perfect blood sugar control and the complication rates were nil or close to it. I would consider diabetes cured if I could wear a pump plus CGMS that could control my blood sugar entirely, even if I had to calibrate it and do site change.

The tragedy of diabetes is in DKA, ESRD, heart attacks, dead in bed, car accidents from hypoglycemia, brain aneurysms.

Dealing with diabetes day to day is not a tragedy. Dealing with diabetic complications is.

I-PORT, take 4

This I-PORT came by far the closest to what I had hoped for when I ordered the things.
I did a pinch and my mother inserted the port onto my left thigh midmorning on Friday. It went in without much pain. My thighs have been really bruised lately because I've felt hesitant about injecting elsewhere, and so we had difficulty finding a spot that was not bruised. We ended up inserting it sandwiched between three small bruises.
Unlike the rest, this time the adhesive didn't stick that well- about half of the adhesive part flapped up and wouldn't stick.
Unlike the rest, this time there was minimal site irritation. I was able to wear the port for the full 72 hours, at which time it was just begginning to hurt. Shots really wear painless because I wasn't pressing down on a really sore spot the way that I was with the others.
It was a little annoying to be putting shots into my thigh and needing to pull my pants down, but that was ok.
When I pulled the port off on Monday after breakfast (and three painless breakfast shots), unlike the other three times, there was no large red and inflamed area; just the spot where the cannula came out was bloody. The port itself was sweaty.

I'm not sure what made this one different. If only they were all like this one! This is the first time that I've removed the port and then wished I was still wearing one.

Picture Game

This picture:means Be Kind Above All.





This one I made up. Get it?>



I-Port 4 was inserted a few hours ago, in my thigh, and is so far ok.

Meet-up

The first Chicago Diabetes Meet up of type 1 diabetes is gonna be happening on Sunday. I'm excited.
Chicago already has one support group in the near north suburbs, and it has a chapter of DESA.
I met with two Chicago area type 1 diabetics four or five months ago. Then I didn't contact them again because I felt embarrased for not mentioning that I'm trans, and especially embarrassed about it because one of them is blind. They told me that diabetes support groups are a bad idea. I asked them why, and they turned towards each other and laughed but didn't tell me.
Anyhow, I'm hoping this will be a pleasant meet-up. It's in a cafe, and I don't eat cafe food, but hopefully the cafe won't mind since I'll be with a group. So far, 6 of us have RSVP'd yes. http://diabetes.meetup.com/115/calendar/5974502/
My numbers have been running high for the last week or so. The good part about that is that in the last ten days, my lowest low was 50, and my second lowest was 58. That's unusual for me.

Lantus Expiration

I used to read about insulin expiring and think that that had never happened with me. Then I decided to do an expiriment; use a Lantus vial until something wacky happened.
I had used the same, outside the fridge vial for 56 days when I woke up one morning with a 357. I had woken up high the previous three days, while going crazy low during the day, so at that point I decided to open a new Lantus. My morning numbers became much better.
With the new knowledge that Lantus acts quicker the longer it's left out of the fridge, I looked back and noticed that even before the month expiration, my overnight numbers get worse; the week after I open a vial, my numbers are mysteriously beautiful.
Right now I'm on a road trip, and I packed insulin. I decided to take only one vial of Lantus, and at the first sign of expiration, to begin splitting the dose. So this morning, I was up at 4 AM and my bg was 89. At 9 AM when I got up, it was 159. So I decided to take 12 units of Lantus at that time, an extra breakfast Novolog unit, and at 9 PM I took 6 units of Lantus. Tommorow morning, I will take 8 units, and twelve hours later the same, splitting my dose for the rest of my roadtrip.
I left on Sunday, June 24 and had euglycemia (sort of- between 60 and 180) until Saturday, with one exception of hypoglycemia when I forgot to eat my supper after I injected for it. I will be back home on Friday.

Meter Comparison and what Hypo feels like to me

I ordered a free Ascencia Contour meter about two weeks ago. It came about a week ago, with ten test strips and a pricker. I've been using the pricker a lot because I like it. I used it the morning after I got it, and got a 146 morning reading, which I thought was probable and didn't double check with another meter.
That evening, because my brother likes to test his blood sugar, and I prefer not to use strips that the insurance bought on my brothers, I let my brother use the meter. He is not a diabetic. His blood sugar on the meter was 61. He had eaten a very large, carb laden meal three to four hours earlier, meaning that his liver shouldn't have been low on sugar, and his blood sugar shouldn't have been that low. I assumed that the meter wasn't so hot.
For the purposes of this post, I got my new Ascencia Contour meter and my usual Accu-Chek aviva meter out. I put a test strip in the contour, a test strip in the aviva. I put a new lancet in the Ascencia Microlet, and turned the dial to the second smallest drop, cocked it, pressed it to my big toe and fired. Nothing. Cocked and fired, blood.
I put the blood first to the contour meter, which counts down from 5, and then on the Accu Check, which displays an hourglass.
The Contour said 38.
See, it runs low, says I, I don't feel funny.
I wait, three seconds later the Aviva's result shows up. 38.
Oops, I reach for the juice box. I don't see the straw, use the Microlet to make a hole and suck half the juice box (I don't FEEL low) and then type up this post.


On a side note: two posts ago, Major Bedhead commented that I was pretty coherent for 38. Other diabetics have told me or have written that they know when they're hypo. They see if they can say the ABCs backwards, they see if they can count backwards. They try walking.
I have no such luck
Once when I was sitting in the snow with a blood sugar that had been in the low 30s for about half an hour by my meter, I counted to 200 backwards and forwards a few times, then retested my blood sugar at 42. Then I got up and walked a half mile to a convenience store because I was low on hypo snacks.
When I'm hypo, I sometimes get a little unsteady as I walk, but not real bad. Sometimes the edges of my vision seem a little dark, and focusing can get difficult, but I have vision problems that are similar to that whenever I'm low on sleep, which is frequently.
I sometimes slur my words if I speak when hypo, the way I do when I'm tired, but I can still type just fine.
If I'm around my family when I go hypo, I get cranky. Otherwise, I sometimes feel sad- if I start crying, I know to test my blood sugar. I'm thankful that I've never gotten violent while hypo.
Sometimes I get sweaty or my hands shake when I'm hypo, but usually it's a mild thing- I have to relax to see if my hands will shake.
Sometimes I get anxious when I'm hypo. If I wake up anxious AND I don't remember what I dreamt, then I'm probably hypo.
Just now at 38, my hands were shaking if I took them off of the keyboard and held them loosely, I am calm, not at all anxious or scared, with a normal pulse. My vision was a little dark around the edges, but not really noticably so. I'm slightly dizzy, but I've been dizzy for the past week or so. My coordination is fine. I'd been thinking about what I was going to write about the Contour, and the possibility that my brother is in the reactive hypoglycemic state of prediabetes. I walked into the other room to get the Contour without any shakiness or difficulty in walking to and fro.
The 38 is the second hypo of the day; I was at 59 when I left work.

I-PORT, take 2

Friday morning, I cleaned off my stomach with soap and water, dried it carefully. Not sure that the soap was all off, rinsed and dried, rinsed and dried. Lay on the floor, showed my mother what I wanted done. Had a lot of difficulty relaxing because my stomach is the most sensitive part of my body. My mother inserted the I-PORT and it hurt a lot. I injected the Lantus and breakfast Novolog. The site hurt and hurt and hurt. My mother and I went shopping and my site hurt and hurt and hurt. After about four hours, it stopped hurting.
On Saturday, I couldn't really feel the port. When I injected my Novolog and Lantus in the morning, it kinda hurt, but shots during the day didn't. I played frisbee, ran around, had highs and lows, and it was a good day.
I stayed up all night of saturday into sunday, and I did about four injections overnight and they were fine.
Sunday, the breakfast Novolog shot hurt, and I injected the Lantus in my usual spot instead of into the port. Sunday at lunch, the Novolog shot hurt. Not the insertion of the needle- that was fine. It was pressing down to inject the Novolog, after the needle was inserted, that was agonizing. So I removed the Port after lunch.
The area was red, and the actual part that the cannula came out of was bruised and bled. The bruise was swollen. It still is. The cannula came out straight.
Next week I'm gonna try a spot that's not my tummy.

My Father Helps Out

I was a college sophomore, 17 years old, and semi independent when I was diagnosed with diabetes. For those reasons, my parents have not been very involved in my care. My father in particular has taken a very back seat position in my care. He injected me four or five times, the last time in December or January, when he got so scared that his hands shook and tore a scratch looking line in my skin. When I ask him to help me out with a pinch for a shot, he closes his eyes so he won't have to see the needle. Because my mother is an M.D., my father has generally referred us to my mother for anything medical. I'm not the doctor in the family, he'd say. And that was fine, as long as medical needs were not a large part of my life. Now it's not so fine. I want to know that my father can keep me safe, and he can't do that if he can't face my diabetes.

Today my blood sugar went to 38. I knew that I had a fair amount of insulin still on board, and that I was going to need my blood sugar checked in about twenty minutes, and I decided that I wanted my father to learn and to help me out. After treating the hypo, I washed my hands, got my meter, test strips, and pricker. I went into the living room, laid on the floor, and told my father that in a while I was gonna ask him to check my blood sugar. And that's what I did. At 3:51, my father tried, for the first time, to check my blood sugar. It was a comedy of errors.
First he needed to turn on the meter. Now, with my meter there's a lag of about two seconds between pushing the power button, so if you keep pressing the button when you don't see the screen turn on, it goes on off on off on off and you never see the screen go on. Anyways, my father eventually got the meter on.
Then he wanted to know if he was getting a low battery signal; that was a flashing test strip.
Then, luckily before pricking my finger, my mother (who was watching) informed us that my father had the test strip in backwards and upside down!
My father got the pricker cocked no problem. Then I told him to press the button up against my finger. What button? says my father. We spend a minute on locating the button.
Alright, without further ado, a finger prick! On the wrong part of my finger. And is there any blood? I squeeze and get some blood, my father tries to apply it to the top of the test strip.
I prick my own finger, my mother gets the test strip to accept the blood. 58.
That's a questionable hypo, says my father, looking at the meter. The accu-chek always puts a question mark after the word hypo. I treated again, was at 48 an hour later, didn't involve my parents with that.

All those hypos wore me out, and I lay down and fell asleep. Three and a half hours later I woke up to my father trying to check my blood sugar. I was thrilled: I had thought he would be discouraged by his earlier attempt. My bloodsugar at that time was 101. Near perfect, says my father.

IPORT, take 1

I put on the port too slowly, the tube (what are they called again?) got scrunched. It worked for about a day, hurt. The following morning I tried putting insulin in and my leg got wet wet wet, I put lantus in to see if it would get me a lantus sting and it didn't, so I took off the port. I've got a bruise there now. My mother is going to put my next port on me on Friday, since the plan is to put them on on Fridays and then be able to wear them for the whole weekend to make weekends a little more fun.
I learned that:
the tape itches a lot
it really is fun to inject as I go, course by course, instead of for the whole meal
doing a shot when I've had a day off really sucks. REALLY SUCKS.
I can sleep with a port on
when I eat an entire meal without getting insulin, my blood sugar can go up to 400 (boy was I surprised)
400 didn't even feel high- maybe I routinely go high for an hour after meals
I like wearing my diabetes.

I feel like I have a better idea about what pumping is like.

If the next port itches, that might be it for porting. I have sensory integration disorder, and that means that I'm terrible at ignoring itchy stuff.

IPORT and insurance

The IPORT distributor just called. We have to meet a separate deductible on medical equiptment, they say, so this first box is going to cost 75 dollars. After that, boxes will cost $15.60, which they claim is ten percent. I was under the impression that a box was way cheaper than $156. I mean, 156 per month would make the cost of porting full time $1,872. Of course, I'm only planning to port part time, but still!

Meter Inaccuracies

The results of my blood draw are back, with good news and bad news.

Good news: HbA1c, reference range less than 5.9%, I got a 6.3%! YES!
My previous A1c, in January, was 6.5%, and the two before that were in the week after diagnosis and were above 16%.

Bad News: My accu-chek read 109 and the actual blood sugar was 88. YOWCH. I lost my old meter and have been using a new one for about three weeks, and this new one does seem to have been giving me a lot of high readings, but YOWCH, that's more inaccurate than it is allowed to be for sure! Since I have three meters left, two Accu-Chek Avivas, and a One Touch Ultra 2, I'm switching to my other Accu-Chek. The one I lost was distinguished by a hexagram I made on the back out of test strips, and the one I started using this morning, I put a # symbol on the back of, out of test strips. The meter that was so inaccurate is not getting anything on the back of it.

Blood Draw and Port Scrip

This morning I went in to get my blood redrawn, as it turned out that what happened with the last blood draw was that my blood got lost. Yeah, lost. Who woulda thunk it?

I got stuck in my left arm, needle in, I look away, wow this doesn't hurt too bad. And he says Does this hurt?
And I say, a little.
And then I look and see the needle going out and in again, groping for an elusive vein.
What do you want me to do? he asks. Other arm, I say, as it starts to hurt, other arm!
It has a better vein, I tell him, pleadingly.
He takes the needle out, I take out my other arm, right arm.
The other arm's vein is more visible.
Aren't you going to use a new needle? I ask.
No, it didn't get any blood, he answers, but then he accidentally touches the needle to the table.
Well, now I need a sterile needle after all, he says.
New needle in, OUCH OUCH OUCH. Needle out, in, out in out in out in, yes! Blood coming, slow, but coming. I go HUMMMMMMMMMM the pain pain pain pain. All done.
Two stiff arms.

Now I ask for a prescription for I-PORT(tm), and he says he can do that. I give him the sheet I've written of information on the Ports, and I go wait in the waiting room, after ten minutes I get the scrip: 10 units, 6mm ports, renewable twice. So that means that A: he thinks that 6mm is more appropriate for me than 9mm. I put the info for both on the sheet because 6mm is for skinny people and 9mm is for everybody else and I'm kind of a perfect weight that isn't really skinny but sometimes when people say skinny they mean below average and average is bordering on overweight.
B: that he prescribed about a fourth of the number of PORTs I meant to ask for. Oh well, if I like them, then I'll ask for more.

I'm just kind of tired of shots, hoping that this will make things a little bit better. A little scared of the 27 gauge needle though. I will let you know how the ports go when I get them.

Patient Network, Stability

Do any of your doctors use the patient information network, and if so, do you keep the same patient number from visit to visit?
I went and had my blood drawn for the hemoglobin A1c last week. In January, I'd gotten a Patient Information Network number, had called it, and listened to the endo tell me how I was doing.
At this visit, he asked me if I still had the card with the number, I said yes, so he didn't give me a new number.
I tried calling the number, but no message is there for me.

My numbers some weeks have held stable all week long, staying between 45 and 150 for all of that week's testing. Other weeks, I've yo yoed all day everyday, and the week's range goes from 30- 300.

On Monday in class I tested my blood sugar and a classmate sitting next to me asked me if I had diabetes. When I said yes, she said that it runs in her family and she's really scared. It's type 2 diabetes that runs in her family, so I told her she could just inhale insulin if she ever needs to.

Today and yesterday ran towards lows. Today's numbers were: 90 (heading to bed past midnight), 72 (getting up in the morning), 61 (between classes, too tired to climb stairs), 85 (forty minutes later, PE class), 54 (too dizzy to stand on the moving bus), 60 (late afternoon), 59 (suppertime), 87(right now- bedtime maybe). I ate two meals, breakfast and supper, but did a lot of snacking during the day. Perhaps tommorow I will take less Lantus.

A few months ago I wrote here that I couldn't imagine joining the 5% club, getting my A1c below 6%. With the numbers I run these days, I think that the 5% club is in reach.

Yo-Yo

My hebrew first and middle name both start with the Yo sound and when I told my father about my latest crazy insulin needs, he said we should just call me Yo-Yo.
60 units of insulin one day, 10 the next. :-)

Hypoman's art project

Yesterday's readings were 58, 71, 69, 74, 72, 109, 77, 63. Too much insulin, me thinks.
This morning I woke up with a 56, my third time ever waking up in the morning as normal below a 60; my lantus time pie chart now gives the slice labeled 31-60 three slices, one and a half percent of the whole. I lowered my Lantus dose by four units this morning, from 17 down to 13. The previous morning I'd lowered it from 20 to 17.

My sharps container is close to full and I am decorating it. Test strip sticks make designs; a smiley face on the front; ASK on the side; a picture of a syringe on the back, with a cut up syringe cup to make the point. I've attached a NovoLog PenFill label, a Lantus label, an accu chek aviva test strip lable, my prescription for pen needles, my prescription for test strips, and an empty bag that contained syringes. I am going to walk all five miles to the hospital to turn in the container, and I hope that people will see and look and wonder and maybe even ask me about it. My sharps container has syringes, pen needles, lancets, and one razor. I'm planning to attach the prescription for lancets and the prescription for syringes.

Pesach blood sugars mostly went well, but the first Pesach breakfast shot my blood sugar above 300. :-( It came back down smoothly.

This morning I woke up and said boy, I can hear summer on the wind. My blood sugar was 86. Yeah!
After breakfast the heat was stultifying. I thought the heat was a little strange for March. Three hours later, my blood sugar was 247. Bleah! That explains the heat, I guess.
The frontpage of the children with diabetes website talks about this study. Kind of interesting; says that kids who watch more TV tend to have higher glycosated hemoglobin levels. The HbA1cs tend to look higher than they are because the study uses a normal lab value that goes 4.1%-6.4%. My lab only considers normal to go up to 5.8%. So I guess with the lab used in the study, instead of having a 6.5%, I'd have a 7.0%.
Anyways, in the study, children who watched more TV had higher A1cs. This could be evidence that watching TV does bad things to your brain, or it could be that among parents and teens who are interested in diabetes and tight control and stuff like that, they are also more interested to be in the whole health nut category in which they think TV is bad for you, and therefore either watch less TV or are willing to report less TV than they actually watch.

Y'know what? I haven't tested below 40 since Valentine's day.
On Friday, testing my blood sugar, the blood kept coming out of my finger. I think I hit a venule. It was scary.

Foods

I've been a picky eater all my life. In the year preceding my diagnosis, I became even more picky. Everything tasted bitter to me.
Not even watermelon was sweet.
In the hosptial, drinking water, I waited and waited for the bitterness to fade, but it took longer than my hospital stay did.

After leaving the hospital, I began to eat foods that I had never been willing to eat before. Foods that had never tasted ok to me were tasting a whole lot better.

Today I ate my fourth avocado. The fourth avocado I've eaten in my entire life; I used to hate avocado.

I've also been eating eggplant. Before, I would eat it fried, in small amounts, only. I didn't much like eggplant. Now I love it.

Stress Relief

I asked my brother Danny (who is ten years old) to tell a story.
He said OK.
He said, Pick a box, a cage, a bar, um or diabetes. Which one do you want?
I say, diabetes.
He said, pick a number from one to ten.
Okay, I say, eight.
Danny begins; Eight men walk into diabetes.
The first one says, oh no I have diabetes.
The second one says, oh no, my friend has diabetes.
The third one says, oh no, two of my friends have diabetes.
The fourth one says, oh no, three of my friends have diabetes.
At this point my mother walks in and wants to know how these new people got diabetes.
Shhhhh, I tell her, it's a joke. Off of the three men walked into a bar ouch, joke.
So Danny continued:
The fifth one says, oh no, four of my friends have diabetes.
The sixth one says, oh no, five of my friends have diabetes.
The seventh one, oh the seventh one says, oh no, six of my friends have diabetes.
The eighth one says, oh no, we all have diabetes!
I say, what, that was the punch line?!

Myself, Danny, and our four year old brother Benjy were in hysterics through most of this story, despite its lack of humor. I think maybe for us diabetes has been such a serious word that putting it in an absurd setting was a real stress reliever. I also think that Danny and Benjy wanted to say OH NO about diabetes a bit without offending me. None of the three of us generally has a sophisticated sense of humor.

The bar joke, by the way, is a pun. It goes like this:
Three men walk into a bar.
Bang.



Today my brother Koby tested his blood sugar. 132.

Meters

Today I left my meter at home by accident. Thought about going back home to get it, and/or curtailing my usual activities, decided not to.

I was talking about this to another diabetic and she says she doesn't let other people use her meter because it messes up her averages and confuses the doctors.

I let everybody and anybody use my meter. Mine is an Accu-Chek aviva, and I can press a little button to star any results that aren't mine, although they still come up in the averages. However, since I check frequently and a normal blood sugar is not an outlier for me, I don't think that having somebody else's number on there every other week matters.

Her meter doesn't have a button for marking special numbers.

My 7 day average at the moment is 108, representing 34 of my numbers above 65 and 5 of my numbers below 65, and a nondiabetic classmate's 100.

Picture of ICA 512 consuming an Islet

ICA 512 cells don't really consume entire isles of Langerhas like this. For one thing, they're too small.

Half Anniversary of Diagnosis Today

Nuts.
Deciding to go to bed at quarter to three, I checked my blood sugar expecting it to be over 100- it was 45. Treated, went to bed and overslept (woke up with a 119 at 1040). It's a fast day today, so having the Lantus peak later may be helpful in allowing me to fast. I had planned on taking a lowered Lantus since I won't be eating, but because of the late hour, took my normal doasage. I'll need to be careful to avoid hypos tomorrow morning.

Visit

Today I went to the hospital I stayed at in September, whose CDE I consulted through November. I wrote a letter to leave there for her, but she came down to the lobby and talked with me for a while instead.
It was a really nice conversation. She hi-fived me when I told her my A1c had been 6.5% in January, asked me if I was thinking about a pump. Knew what I was talking about when I said that this body of mine is just plain weird. Told me she'd just been wondering about me. Said she would consider me hypo unaware since I don't feel 60s, and that my insurance generally will cover the cgms as long as my endo signs a paper saying I'm hypo unaware. Told me to say hi to my parents.
She's going to be at one of the ADA camps this summer, and I'm thinking I might go too, as a counselor in training or something. It might be nice.
Looking at the forms for summer camps that ask about what the campers' ratios are, it makes me laugh to think about going three weeks with the same I:C ratio.
She asked me how long it's been and I realized anew that my half anniversary is Thursday.

Charted Lantus Time Blood Sugar Numbers

For the last five months, I've put my Lantus-time blood sugar numbers into a
pie chart. These are mostly the first reading after I wake up in the morning, although sometimes I am up hours earlier; then I do have the chance to correct before Lantus time. When I first started this pie chart, it was easy to see my numbers gettting better and better, but not anymore. I keep track of this number in particular because my numbers in the early morning tend to plateau- when I don't eat breakfast and I check two hours later, my bg is within 10 points, even if I've been running around. Then around 10 or 11 in the morning, it'll start fluxtuating, bouncing down and up, breakfast or no breakfast.
I chose to analyze my Lantus time numbers because I see them as somewhat representative of what happens overnight. I consistantly take a reading at that time of day everyday, whereas I don't consistantly test at any other time of day. This is a pre-breakfast number around 90% of the time. It is unlikely to changing much because it follows hours of not eating, with no excercise. The lowest number I've ever woken up with in the morning is 66. The highest during this period is 293, which followed a nightime low that I overcorrected by a long shot. I'm sure that, before I started taking Lantus, I woke up above 300 dozens of times.

Colds

I went to see my therapist on Thursday and she asked me how I was doing, and I answered that I had a cold. She said it was the third time in a row I'd answered that. I've been wondering about the way I seem to get frequent lingering colds.
Hyperglycemia is known to impede zinc absorption, and zinc is known to shorten the duration of cold symptoms, though it does not prevent them from showing up in the first place, nor does it generally mitigate symptoms during the first three days of the cold. I'm thinking maybe a zinc deficiency is responsible for the persistance of my colds. I've been wondering if having persistant colds has any long term repercussions. Having a cold is a minor nuisance. I think it also raises my insulin needs.

This week I woke up hypo twice, the third and fourth times (since leaving the hospital) that it has happened. The four values that I've tested at after waking hypo are 23, 38, 41, and 46.

Hypoglycemia, Post 1

Yesterday after a group, I walk to the train station with a fellow group member, ride the el, get off the el, see that the bus isn't there yet and walk two blocks, look for the bus and it's not in sight yet, think.
Hey, maybe I'm hypo.
Think, maybe I should wait until I get home to test, I've tested too many times today already (I have a scrip for 8 per day, but my endo wants me to do less).
A sob rises and I muffle it, think I must be hypo if I'm sobbing.
Think, can't put my backpack down in this snow.
So I turn and wear it on my tummy, pull out my kit. Insert test strip, cock tester, poke finger, blood on strip. Wait, wait, wait, wait, wait.
30
Oh, snap. 30!
How many rolls should I eat?
I eat three rolls of imitation smarties, 6g each makes 18g.
Think, this will, if I'm not on my way down, bring me to about 130 (I go up between 5 and 6 mg/dl per gram of carb).
The bus comes and I board, still shaky.
I try to find someway that I would know. Some thing that 30 renders me unable to do. Count backwards from 200? Can do. See people? Can do. Hold still? Can do.
30 is the second lowest number I've ever had.

Science Fair Projects Related to Diabetes Management

A few months ago I found out that the University I attend has a science fair. It's an informal deal- no judging. No official program. Just a bunch of boards in the pit (informal dining area/study hall in a classroom building), with the names of one or more students and one or more professors. Some of the boards were really basic presentations of math ideas; some were over my head presentations of meteorologic ideas; one really cool board was about staph infections of a particular sort and had been done in conjunction with folks at the hospital I stayed at in September. The guy who presented that board was there and explained it to me- he was studying a less virulent strain of an infection that primarily kills hospital patients.
For next year, I want to do a science fair project. I'd like to test something that hasn't been tested but is fairly simple, and that has the potential to be useful. I got to thinking about what sort of things would be useful for me, diabetes wise.
One worry I often have is that my insulin has been spoiled; too hot, too cold, too old... whatever. I'd really like to be able to squirt a half unit or a unit of insulin onto some cheap thing (like something I could make myself) and see something that would allow me to know if the insulin was fresh or not.
So I've been thinking that perhaps I'd use the leftover Lantus from a way past month (like January's) and a few units of current insulin, over the summer, and try squirting them on things and see what happens. Maybe the preservatives break down, whatever. Before summer, I'd hopefully read up on some of the preservatives and their various reactions to stuff.
Anybody have a better science fair idea? Ideas for how I should get started on this one? Recommended reading related to this one?

Turns out last night I was on my way up... five hours later, no more food,259. Yuck yuck yuck.

I feel hot. Cheeks are stinging, palms are sweating. Usually that means that my blood sugar is high, but I just tested it at 151. A little high, but not enough that it should make me feel this way. Not even high enough that I'm going to correct for it unless it is still this high in a couple of hours.

Sometimes I think about what would have happened if I hadn't gotten insulin. If for some reason it had not been available. I wonder how long it would have taken for me to go into a coma, how long it would have taken to die. Would I have lived to turn 18?
Right after I was diagnosed I felt that the insulin was great for making me feel better, but I still would have been alive without it. Today, today I would be dead without it.