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.

Administrivia

Someone recently asked me, "don't you ever have any good news?" Of course, that was after she called me over and told me in detail about all the terrible things that had happened to her, and then asked me a lot of questions about our (now ex-)landlord. So, I don't know.

I was supposed to see my endo on the 6th (after making the appointment six months ago), but two days before, they called me and said she won't be in that day, so it got changed to the 25th. I took a big hit for that paycheck-wise, because when you take time off, you not only lose the pay, but you lose the health insurance subsidy normally paid by the employer. It was too late to work those hours, and I'll have to take more time off on the 25th, so it was pretty significant. Anyway, I figured I had plenty of time to review my labs, so I called the receptionist (the lab at this place doesn't do copies). She said cheerfully that the doctor hasn't reviewed them with me yet, so I can't have a copy until the 25th. I asked if she was sure, because I'd never heard of anything like that, and she said yes. Okay. The more I thought about it, the more confused and annoyed I became. Doesn't HIPAA say you have to be allowed access to your medical records? I wanted to see the results before my appointment so I could get an idea of what was going on and because I'm totally anal like that.

I called back, and this time I told the cheery receptionist I thought they couldn't do that. So, she transferred me to the nurse, who made more sense, but said all the wrong things. She said it's the doctor's policy not to release labs without reviewing them. She said I don't have to wait until the 25th, just until the doctor is back in the office in a week and that normally this is never even an issue. Then she said, "unfortunately, you picked the week when the doctor is out of town." Aargh (like I picked the week). She said they do this because they had a problem with patients misinterpreting the results. Well, okay, but I think the law allows them to do that, and I don't think I'm that patient. Although now they'll probably all think I'm difficult.

I really love my endo, but I have a really low tolerance for this kind of administrative stuff. I may have to look into other options. I mean, does anyone see why this is annoying?

Meme

a. Type your answer to each of the questions below into Flickr Search.
b. Using only the first page, pick an image.
c. Copy and paste each of the URLs for the images into mosaic maker.

1. What is your first name?
2. What is your favorite food?
3. What high school did you go to?
4. What is your favorite color?
5. Who is your celebrity crush?
6. Favorite drink?
7. Dream vacation?
8. Favorite dessert?
9. What you want to be when you grow up?
10. What do you love most in life?
11. One Word to describe you.
12. Your flickr name.

#6 isn't actually my favorite drink, but it is my photo and it came up on the first page. Heh.

Huh?

The other day I was surprised to read someone with Type 1 saying, "diabetes will eventually kill me, anyway." Then a lot of other people agreed.

Really?

Am I the only one who doesn't think diabetes will eventually kill me?

In one ear and out the other

I've met some new people lately, and had to tell them I have diabetes. For the most part, it's gone well, but this one woman I think is convinced I have Type 2 for some reason. I'm not sure, though, and I don't really even want to get into it.

Her: You have diabetes?
Me: Yes, I have Type 1 diabetes. *explains what that is for 5 minutes*
Her: Wow, you have a lot on your plate.
Me: I guess so.
Her: I have this friend, but she has juvenile diabetes and boy, does she ever have it hard. *explanation*
Me: ...

I don't really want to say "juvenile diabetes" because I think that's why so many people are convinced that 1. only children get it and 2. it goes away once they stop being children. Still, it seems like even people that should get it, don't.

Doh

Uhoh
Originally uploaded by lilituc.

I was so excited about getting my UltraLink! I'd been waiting for it for so long. Then, I opened it, and discovered there's no backlight.

That's a dealbreaker for me, unfortunately.

Augh

Augh
Originally uploaded by lilituc.

It had to happen sometime, right?

Raise your voice

I am raising my voice for Type 1 diabetes, although I admit this content has appeared before. I think it's important, though. It's about LADA (Latent Autoimmune Diabetes in Adults).

This information comes from research, but mainly from experience and reports from out "in the field."

LADA is autoimmune diabetes just like regular Type 1, but it is often misdiagnosed as Type 2. That's because it occurs in adults over 25 and because the onset can take 6-8 years. (While regular Type 1 can occur at any age, the onset is sudden).

How to tell the difference between LADA and Type 2:

- Positive antibody test -- while a negative antibody test is not conclusive, a positive result indicates Type 1 or LADA.

- Weight -- Type 2s on the thinner side are very uncommon except in certain genetically susceptible subgroups of Native Americans, Asians (South Asians, Japanese), Hispanics, Scandinavians, and African Americans. It would be unusual for someone very thin or underweight, and/or in great athletic shape to develop Type 2.

- Family history. Someone with a long family history of diabetes is more likely to have Type 2, although it could be argued that many of these could be unrecognized cases of MODY.

- Weight loss -- Unexplained weight loss before or around diagnosis is associated with Type 1 or LADA, not Type 2.

- Ketones -- Moderate or high ketones are rare in cases of Type 2 and generally only occur in people who have had Type 2 for a very long period of time and no longer make insulin. Moderate or high ketones at diagnosis tend to indicate Type 1 or LADA.

- Progression to insulin -- LADA results in insulin dependence much sooner than Type 2, even within a year of diagnosis. This is working from the outmoded belief that insulin should be prescribed when it's no longer avoidable, though.

- Response to oral medications -- LADA does not respond well, or for very long, to medications used to treat Type 2.

- C-peptide -- This level will decline rapidly as compared with Type 2. In some people in the very early stages of LADA, C-peptide may actually be elevated and seem to indicate Type 2. However, the ensuing quick decline in C-peptide is indicative of LADA.

- Insulin resistance -- LADA is not associated with insulin resistance, although see C-peptide.

- Triglycerides and blood pressure -- these are usually elevated with Type 2, but not usually with LADA.

- Low carb doesn't work -- Assuming none or only moderate overweight, going on a low carb diet does not work to control blood sugars.

- Hypoglycemia -- anecdotal evidence suggests a history of hypoglycemia prior to diagnosis might be associated with LADA.

- Inconsistent blood sugars -- The honeymoon phase in LADA can last several years. During this time, the beta cells often work or not work somewhat intermittently.

Why does it really matter if it's LADA or Type 2?

- Seriousness -- Sadly, Type 1 is often treated more "seriously" and aggressively by doctors and insurance. It can be difficult to get adequate treatment or have insurance pay for the right treatment unless one is classed as a Type 1 rather than a Type 2 (insurance companies only believe in two types of diabetes). Insurance companies will often only cover insulin pumps for Type 1.

- Treatment -- People with LADA should be treated like early Type 1s, not like Type 2s. Early treatment with insulin is believed by many to reduce the workload on the beta cells and preserve their function longer. This is important because retaining some insulin production for as long as possible reduces hypoglycemia and the risk of DKA. Also, background insulin can for most reduce the unpredictability of the beta cells working intermittently.

- Danger -- LADA is subject to the same dangers as Type 1. A few people are diagnosed in DKA (usually as Type 1), but after treatment have a sort of "remission" due to the extended honeymoon period. Still, DKA can occur on rare occasions if insulin production suddenly stops.

So how can I tell if I have LADA instead of Type 2?

- positive antibody test (you can stop now) or low C-peptide?
- quite thin or active and in good shape?
- unexplained weight loss?
- no insulin resistance?
- have you had moderate or high ketones?
- low triglycerides and normal blood pressure?
- high or variable blood sugar despite oral medications and/or low carb diet?
- quick progression to insulin?