Incorrection Part 2

Well, after an hour on the phone with MM (during which I was asked to read them the data three times), they are overnighting me a new pump.

I think I may actually have figured out where it was getting the numbers from (although I can't compare enough data points since the Bolus History only goes back so far). I really think it's just a minor software issue, but since it's a medical device, better to not take any chances, you know. I wasn't worried or anything.

So now I am eagerly awaiting a new pump. I hope it's as nice as the new old one.

Incorrection

So I love my new pump and all - the buttons are all stiff, it's all shiny and new-looking. Lately, though, I've been noticing a disturbing trend.

The other day I was looking at my daily totals when I came across something odd - it said that day my correction percentage was 12%, 2.7 units. Huh? I'm pretty sure I would remember that! I checked the bolus history and no, I did not correct that much, not even close.

Tonight, I reviewed today's total. I did quite a lot of exercise today so I didn't end up doing any corrections at all. The screen tells me that I had a total correction of 1.2 units, 8% of the daily total. No, no, I didn't.

I checked another day I didn't do any corrections and that one is correct. Out of the 16 days I've had this pump so far, four have incorrectly high correction totals (all at least 100% too high) and the rest are correct. I can't see anything different about those particular days, either.

It's so strange. I mean, how does this even happen? I can't figure out where it would even get those erroneous numbers from. I always use the bolus wizard, almost never change the recommended total, and, well, my old pump of two years never had this problem. It was always...correct. The only difference is that this one has updated firmware (and the only difference I've seen is a tiny one in how it handles selecting bolus type).

I guess I'll call the hotline tomorrow (and try not to sound like a crank), but, um, any ideas? I know I'm probably the only one who uses this information... ;)

Don't dream it's over

Uhoh
Originally uploaded by lilituc.

Today I was setting my pump down when the light hit it just right: so pretty and yet immediately I knew it was Wrong.

Yep, it's a hairline crack. Don't worry; a brand new refurbished pump should get here tomorrow morning.

All I know is it wasn't there two days ago, and I haven't dropped my pump. I have had it just over two years, though, and these things happen.

Goodbye, pump #1!

Old and new

Old and new
Originally uploaded by lilituc.

Anyone remember that forum post about the battery cap symbols that caused so much confusion? I finally got to see them when I got my new battery cap. Here it is with the old one on the left.

Meetup

Meetup
Originally uploaded by lilituc.

I was able to meetup with Scott Johnson when we were in St. Paul. We had a great time chatting.

Holidays

Somehow I find myself in St. Paul until Thursday.

Well, I know how. We came in through MSP and drove across Minnesota to visit my family. Then some of them left early and it threatened to snow and we had to come back early. So that's how it happened.

Would you believe I've never been to anything here? I hear you guys have a mall...

Hey, I need that

I was supposed to see my endo in two weeks, but she's having a baby (!) so they rescheduled me to this week, meaning I'd have to scramble to go get my labs done in time.

I hate fasting tests. Hate. If I get into the shower before I've eaten, I usually get very nauseated. And you wouldn't want to see me without coffee. It's not pretty.

Anyway, I got up at 7 so I could get to the lab when it opened (and not prolong the fasting). I turned my basal down to 70% because my bg is usually low by the time I get to the lab. I had just gotten out of the shower and thought I'd be done in 10 minutes. Then I happened to glance down at my tubing. Um, it's not supposed to be *that* color. Hey, I need that!

So I had to do a set change, which added a bunch of time. I didn't prime it quite all the way because I knew if I did, I'd be really low by the time I got there (my body is really weird and I'm pretty impatient).

I finally got to the lab and tested at 96 before they drew me. Woohoo. I bring coffee with me in a travel mug so I can chug it as soon as they let me out of the pen. No, really, this is for the safety of the other patients. Of course, today I also spilled coffee on myself.

Now I just need to upload my data so I can print out the reports for my endo. I have never used a paper log.

D-Blog Day

How about that D-Blog day?

Other diabetes

Other diabetes
Originally uploaded by lilituc.

I was looking for something else and came across this table.

Other diabetes

Other diabetes
Originally uploaded by lilituc.

I was looking for something else and came across this table.

Packing

Packing
Originally uploaded by lilituc.

I spent days and days packing, from a master list I had prewritten. I had finally gotten close to the end when my husband got home from work. He took his stuff out of the drawer and put it in the suitcase. Elapsed time: about 45 seconds.

Surprise!

4 October 2008 Day 362
Originally uploaded by lilituc.

All, things considered, it didn't end up being that bad. I had an extra set of short tubing with my spare set, so I changed it until I get could home and get another set of long tubing.

Extreme Diabetes Makeover Type 1 Conference

Is anyone going to this? (Somehow I'm always the last to know). It's not only for pumpers, but that's who this particular message was going to.

What happens to children with type 1 diabetes who outgrow diabetes camp or their pediatric endocrine team? Diabetes Solutions of Oklahoma (DSOK), a non profit organization, is offering an exciting opportunity for young adults, age 21-40, who have type 1 diabetes. DSOK is hosting a conference Nov. 7-8, 2008, for young adults with type 1 diabetes at the NCED Conference Center in Norman, Oklahoma. This is the EXTREME Diabetes Makeover.

The goal of the conference is to tear down old ideas and negative attitudes about diabetes, build a framework for a healthier life, and redesign and style diabetes to fit peoples' lives. This is the age group who is most disconnected from other people with diabetes. This conference will address the need for socializing with other
individuals facing the same daily struggles. It is designed for anyone who must fight the daily struggles of type 1 diabetes management. As insulin pumpers, you have the greatest tool available to help you manage your diabetes. However, as you well know, successful diabetes management is 20% knowledge and 80% attitude and outlook.

Special guests include actor and comedian Tom Parks, who also has type 1 diabetes, and Dr. William Polonsky from the Diabetes Behavioral Institute of Southern California and author of the book, Diabetes Burnout: What to Do When You Can't Take It Anymore. For more information or to download a registration brochure, please visit http://www.dsok.net or call Diabetes Solutions at (405) 843-4386. What have you got to loose? Check it out and sign up soon, space is limited!

Arrrrrrr!

Arrr, I be breakin' my camera yesterday! How will I be postin' mah photos? Too late; the cable already be broken!

Avast, in other news I opened a new box o' Silhouette and the tubin' be changed! Arrr, ye scurvy dogs have changed it to Quickset tubin'! It be scratchy and uncomfortable!

I be orderin' another camera, but sorry to say I think most of my photos be missin' forever.

*dejected arrr*

Diabetes is like D&D

What induces perfectly logical people to think the human body is like a simple engineering problem? Yes, on some level, you put something in and get something out. But is it always the same? Then why do people think Type 1 diabetes is the same way? You put something in and always get the same results. If you get a bad result, you did something wrong.

Even doctors do this, which still astounds me (although it probably shouldn't). They think diabetes should be easy to control. Oh, and even diabetes doctors do this. I read the following in a book about managing mainly Type 1 diabetes (which I'm not going to name here but my version says 2006): If you take insulin, then tests must be made at least three times a day - before breakfast, dinner, and bedtime. In times of stress or illness, add a fourth test, before lunch. There's rarely a need to do it more often than that. Right! Because blood sugar is always completely predictable, am I right? It goes on to note: To complicate your life, here's more advice. To determine whether you are taking enough very fast-acting insulin such as Humalog, NovoLog, or Apidra before each meal, for a couple of days check your blood again two hours after lunch, dinner, and bedtime to see if you're in the ballpark. That sounds like a lot of tests. Good thing it's only for a couple days. The book reassures: On the other hand, some compulsive patients insist on checking their blood sugar as often as five or six or seven times a day and taking insulin accordingly. This is not necessary. Oh, great, I can stop checking so much and just expect my body to behave in a completely predictable fashion. Surely insulin-to-carb ratios and basal rates will never change, right? There's no such thing as bg going wacky due to illness, stress, hormones, the diabetes fairy. Only crazy people would think so! (The book continues with such gems as one should NEVER eat sugar, even children, and that insulin doesn't need to be refrigerated).

See how easy it is? We should all throw out testing more than three times a day, adjusting insulin, basal testing, insulin pumps. Forget it! All you need to is take the same amount of insulin and eat the same amount of carbs per meal, and you'll always be fine!

Well, as we all (hopefully) know that this isn't true. If I (with LADA) can't get good control without testing 8 times a day, I don't know how anyone else could. I eat the same breakfast every day, and have for at least three years. So do I get the same result every day? Of course not. I can look for the patterns, of course, but some mornings I'm going to need a correction, and others I might even end up low, without changing any of the other factors. So every time you have a situation, you act, the dice roll, and while you can increase the probability of an outcome, there's no guarantee you're going to get the result you want. I do think that following the advice above will lower the probability significantly. But even if you "do everything right," get educated, pick up the latest tools - you're still subject to the whims of the dice, or the diabetes fairy.

What's weird is that even when it *is* predictable, people still don't get it. "Why is your blood sugar low?" Well, guys you told me I couldn't eat anything for 12 hours and then made me walk 1/4 mile to the lab and fill out a bunch of paperwork. I could see that coming a mile away. "Why is your blood sugar high?" Well, I was planning to go shopping, so I took less insulin with lunch, but for some reason you decided you didn't want to. "Why don't you start eating right away? It makes me really uncomfortable." Well, I have to wait for the insulin to kick in, and I'm not going to take it before the food comes because I have learned my lesson there. "Why did you get upset after I stole half the food off your plate after I told you I didn't want any? That's rude!" (Left as an exercise for the reader).

Anyway, back to another day of rolling the dice and wishing for a +12 Stick of Clue.

What Would You Do?

Let's say you have a close friend that has a problem with lows. For one, they tend to get combative when low and will start arguments or say really mean things (I mean, the things they think but shouldn't say type of things, not things they don't actually think). They get angry if you try to get them to test, and refuse to test again after treating. They don't like to carry supplies with them, and will often leave the house without even taking a meter, and usually don't have anything along to treat a low with. (Despite this, their control is not that bad, if you don't know about what happens during lows.)

Now let's say this also happens while the person is driving. Needless to say, testing before driving is right out. They get angry if you realise they are low and try to get them to pull over. Or if you, as I did recently, refuse to get back in the car until they test and treat, then get angrier when you insist they test again before leaving (still low). I know the anger has a lot to do with the being low, but there is obviously a serious issue in there. I guess I feel like even if they don't, I have to take my own safety seriously. (I have given up on trying to be concerned about them because it's not welcome). In the past, I have refused to go anywhere with them driving, but eventually I was unable to stick to it, because I don't drive. Plus occasionally there will be periods where they start acting more responsible.

No amount of cajoling or lecturing will make this person listen to me. Any hint of concern just annoys them. I finally just resigned myself to always carrying five times as much sugar as I would need, and always having lancets so I can switch them out and they can use my meter. That is, if I can talk them into it. I think there are two things going on here - 1. the belief that there's no need to be prepared, because nothing "wrong" is going to happen, despite all the evidence to the contrary, and 2. the idea that they're not impaired while driving with low bg, which I can say is untrue.

So...what would you do? Assuming you are still going to be friends.

Dude

I was kidding. Ha! Ha! Ha...ha...ha? Ha?

So I'm told people can't tell when I'm joking. Not really sure what to do about that.

my new career as a crank

I was reading a post on CWD for parents about "who were you before D?" It's interesting. For me, it's hard to answer. Before diabetes, or before diagnosis?

The years just before diagnosis for me were a haze of chronic fatigue, repeated illnesses, slogging through college classes when I couldn't concentrate, because otherwise I'd lose my health insurance. I was lucky to have an excellent GP, a professor of medicine who took me seriously and wanted to get to the bottom of it. With every new diagnosis, a new piece of the puzzle fell into place, but still something was missing. I say this a lot, but diabetes was just the last diagnosis. Once I had that, the last big mystery was solved, and I dropped out of school because I didn't need their higher level of coverage anymore. (My GP had already left for greener pastures).

So before diagnosis, I had been barely treading water for quite awhile. I'd always had most of these things and just learned to live with them, but I started to get really sick when I started my Master's degree in 2002. I wasn't diagnosed with diabetes until 2005, when I was 27. People seem to define themselves in terms of their careers, or their aspirations. My aspirations were things like getting through the next day, or even the next hour, and my career motivation was what I jokingly referred to as, "get to work or you're fired."

I don't define myself by my career. There was a time when I really wanted to be a librarian (surprisingly while working in a library), so I went to library school. By the time I got there, though, it just didn't seem as important. I arrived at a much less accessible campus than where I did my undergrad, and discovered for the first time in my life that I'm disabled. I know, I know. It had just never occurred to me before. As they say, life got in the way, and I fell behind in my career because I wasn't up to a full time job. I spent several of the last few years unemployed, because I can't do physically demanding jobs anymore (or fake it well enough), and people are pretty puzzled by my resume since I didn't take the usual career path. I would still love to go back to school and seriously take all those classes, but I don't have the stamina.

On the other hand, I am lucky now to be in a better situation so that I can sit at my computer all day without it being excessively painful. I'm in much better health now. On the other hand, I'm not young anymore. I hear some groaning out there, but it's true. I've always loved to learn and to research. So now I spend my time researching diabetes. I got so frustrated when I was first diagnosed and couldn't find any information that made sense. I even went to the medical library and checked out all the textbooks, but they didn't make sense, either. Now, I get it. They didn't make sense because people just didn't know any better. Of course sliding scale regimens are great! Of course Lantus is scary and untested and not safe for pregnancy or small children! If you're laughing, consider that many people believe it because the long term studies haven't been done yet on these new things, so they couldn't possibly recommend them to patients. Seriously. Hands up, how many people want to go back to R and NPH? Anyone want to convince an angry toddler that they have to eat more carbs to feed the NPH?

Before diabetes, I was just someone who liked to learn, and somehow now I've become someone who likes to learn about diabetes. Someone sarcastically asked me recently, "what, do you just research diabetes all the time?" I laughed, because...I do. I've learned the hard way that the other things I used to do were too stressful, or I didn't really enjoy them, whereas now I have something to do that's interesting and important. I will stop when doctors stop telling people they have "borderline diabetes," to lose some weight and see them in three months. I will stop when people understand one kind of diabetes, maybe even two! I will stop when people know that there is still no cure for Type 1. I will stop when large organizations stop telling people they need to eat more starches to treat Type 2. So, yes, I spend all my free time learning about diabetes and annoying people on the internet. There you have it.

everything police

I guess I don't have much to say lately. My endo appointment went well. Well, the actual appointment - the day wasn't so great. It's July and I got a call from my grandmother a couple weeks ago. She wanted me to fly out and surprise my mother who was visiting her the next week. The problem with that (besides the timing) being that I haven't spoken to my mother since July of 2005.

They say she's doing better now, after going to rehab (again) six months ago. She's been trying to contact me pretty much the whole time, but six months ago the 3 am phone calls stopped and more reasonable attempts were made. Still, I don't think people change that much in even six months. I don't know if I'm up for the journey, either. I put a lot of time and effort into helping her before because she managed to keep me alive for 18 years (you can't hear me, but that's kind of a joke because really it was more in spite of her), but it was all for nothing. My family are all mad at me because they seem to think it's my job to keep "helping" someone who refuses to fundamentally change. They think I'm bitter and unfair and it couldn't possibly have been as bad as I say. They don't even know the half of it, actually. I'm not even bitter about it, just pragmatic.

Do I really want someone back in my life who is going to constantly nag me in a completely unhelpful manner? Who judges my life choices and always criticises no matter how I succeed? Someone who's only seen me once in the past ten years and never saw me eat for ten years before that, but thinks it's perfectly acceptable to repeatedly tell me I got Type 1 diabetes because I "eat a lot of junk food?" (For the record, I don't, and never really have). Someone who can't stop herself from commenting on my personal life (or what she thinks it is, which is totally off base) in public, often, and loudly? I mean, intellectually I know that what she says has nothing to do with me or my reality. It's all about her, her insecurities, and her fears. She actually knows what causes Type 1 diabetes, but she can't mentally allow me to be who I am because she feels like it's somehow a judgment of her. Knowing that doesn't make it any easier to actually be around her, though.

Still, there is a family event coming up where I know we would have to be there, and I'm already having trouble picturing her constant nutso criticism and me not just getting up and leaving. With the diabetes, I have kind of a short fuse when someone does it in person, while I'm doing stuff. I am totally willing to talk about diabetes, but not while I'm actually doing it and need to think about what I'm doing. My mother is like the Everything Police. Then, the usual techniques don't work, either and tend to exacerbate things. If you try to shame her about what she's saying (in a Miss Manners style), she just gets more agitated and insistent. Family situations are also a huge trigger for her, and I find them difficult to deal with as well, because I kind of feel like people are trying to force me into a role I never even had. Coming up on three years now, and this is what's on my mind.

Urf

I got a phone call a few days ago about my labwork. The nurse said it was "perfect." Since they won't give the actual numbers over the phone, I didn't say anything, but I had my doubts. Anyway, my cholesterol was excellent now (although my HDL was lower), which is great. Last time I was in the normal range, but just out of the diabetic range, if you know what I mean. My A1c was much like last time: abnormally low. I don't know why this has been happening, just for the last year. The endo didn't seem too concerned about it, since we know what my A1c *should* be, and that's not really worrying. It's just confusing to other doctors who of course first want to know what my A1c is, and then I have to explain it. Not that I really have an explanation. Anyway, I just read this about donating blood yesterday in the Diabetes In Control Newsletter:

The donation of red cells does indeed have an effect on A1c levels. Since the test measures a type of hemoglobin in the red blood cell that attaches to glucose, the amount of red blood cells in the blood has a direct correlation to A1c levels.

We already know that patients who have a high turnover in red blood cells, such as those with sickle cell anemia, have an artificially low A1c, because they are making a higher number of new red blood cells. This is similar to what happens when red cells are lost due to a blood donation. A normal donation may require up to four weeks of new red cell production and a double donation may take eight weeks.

It takes about 8 weeks for new red blood cells to attach to glucose and raise the A1c to pre-donation levels.

A1c levels can actually be decreased by 4 to 8% for the first 4 to 6 weeks after a donation, and if a double donation A1c can be as much as 16% off for even a longer time.

Based on this information it is important to tell your patients that they should have their A1c done just prior to the donation, and more importantly we should ask if they have donated blood when they see us for an appointment.

Information from Practical Diabetology June 2008
Richard Benjamin, MD, CMO American Red Cross Blood Services

I don't donate blood. I don't have anything obvious, like sickle cell. I do have recurring anemia and have to take iron or it comes back, but they've never really found an underlying cause (other than the most obvious one). So it sounds like the problem could be too high turnover of red blood cells? I guarantee I am not secretly running low or anything. If anything it should be higher than any past A1c, just due to progression. Oh, and if I saw this A1c for a Type 1, I wouldn't say it was "perfect" - I'd be quite worried.