My night at the ER

16 December 2007 Day 69
Originally uploaded by lilituc.

I was doing so well, and then on Sunday afternoon, I started vomiting. Nothing had changed, so it was pretty odd. I didn't have ketones and my bg was fine. My husband called the doctor on call - again Dr. S. This time he made Dr. S listen to my entire medical chart and wouldn't let him talk over him. Dr. S said it was no big deal and he'd call in a suppository. He also said to stop taking all the medications I'd been prescribed. He said we could go to the ER if we wanted to, but made it sound like we were being overly paranoid and there was no point. I'm not going to tell you what we call Dr. S in private!

Normally I'd wait longer than two hours to go the ER, but it was already 5 pm and I hate waiting all night long and not being able to sleep, so I figured we might as well go right then. We got to the ER just after 6 and I didn't get triaged until 7:15. To be fair, they had their hands full. There was a woman in her early 30s with severe abdominal pain, a two-year-old who'd had explosive diarrhea for several days, and an elderly woman with a possible broken hip. Actually, I can say "probable" after observing her for 20 minutes. So they triaged me and then I didn't get seen until 9:30. I had to keep getting up to vomit while I was waiting.

By the time they saw me, I had moderate ketones and was pretty dehydrated. They didn't check until after they'd given me one bag, so they kind of went overboard and took a bag right out of the fridge. I warned them cold fluids would probably make me nauseated (because of another medical condition), but they were all, "you need fluids" and wouldn't hear it. The weird part was another nurse randomly came in, walked over to me, taped the line up and down my arm twice, then left. So I was a million times colder. In retrospect, I should have just pulled off the tape, but I was kind of confused at the time. Anyway, I got really nauseated.

That's when they went into overdrive! I thought it was odd they thought that was such an emergency. The doctor came running in and the nurse and then they gave me Phenergan and I was out. So I didn't get to ask the doctor the questions I had or get a copy of my labwork. I was discharged around midnight.

For those of you who work in the healthcare field...what do you think of this - it's the best ER in town, but they don't have private rooms. The patient on the other side of the curtain was a homeless veteran who called 911 because he wanted to commit suicide, and while I was getting my fluids we basically overheard everything. The poor guy.

I had a surreal moment the next morning when Dr. S's nurse called to find out what happened. I explained to her about what had happened, but she didn't seem to grasp that diabetic + ketones + dehydration = super bad. Also, when I told her the Phenergan knocked me out, she actually said, "No, honey, you're thinking of the painkiller. Phenergan isn't sedating. Does your tummy still hurt?" So glad I didn't get Dr. S as my surgeon!

They never figured out why I was vomiting. I've been okay since then in that I've been progressing normally.

Oy

Well, I had the surgery yesterday morning. The surgeon said she'd talked to my doctor and they thought it would be better if they didn't sedate me. I wonder which one said that; I can't think of why they would. Still, I'd rather not be sedated.

They had trouble getting the IV in. Not too surprising since they decided not to use a heplock because I'm allergic to Teflon. They didn't have one of those brace things so they ended up strapping my arm to a board they found somewhere. I forget to tell them I'm allergic to heart monitor contacts, but they never mentioned they were going to be using them, either. Since I'd had 50mg of benadryl before the surgery, the reaction wasn't too bad. So the surgery mostly went well, although the anesthetic started to wear off at like #2. I was not upset, because that's usually what happens to me. It all went pretty fast, anyway.

When I got home I was pretty dehydrated, but I couldn't drink anything because we were supposed to try to stop the bleeding. You have to bite down hard on some gauze for 30 minutes, then make sure it's stopped and repeat if necessary. Well, we did this for about five hours and it didn't stop, even after we tried tea bags like they suggested. So, my husband called the office and got the doctor on call. It was one of the other surgeons, Dr. S. Well, Dr. S informed him that it was only bleeding because I wasn't biting down on the gauze right because I was groggy after the surgery. So basically, we were doing it wrong. He wouldn't listen to what my husband was telling him at all. That's interesting, because I wasn't groggy at all, and we weren't doing it wrong. I'm glad I didn't get that surgeon! Anyway, we tried the gauze again (by this point we'd run out of their gauze and had to use our own) and it mostly stopped, so I was able to eat some things and get my ketones down. It did start bleeding again three times that night, though, even though I wasn't doing anything when it happened. Nothing was even moving in my mouth; I was just sitting there and it started. And yes, I am being super careful. So I may end up with dry socket even though I followed all the instructions.

I was in a lot of pain the first day, when I couldn't take the painkiller right away due to the bleeding not stopping. It went right up to 9. I think some people would call it 10, but I've had 10 before. The odd thing is that Darvocet was abused in the 70s, but it doesn't make me feel high at all. It does work on the pain, which is great, but that's it. I'm not even sleepy. The pain was only as bad this morning as it is when I normally wake up, so like a 5 or a 6, but now it does hurt despite the painkiller, probably because of the swelling. I have to apply ice packs for the first 36 hours. The swelling should go down on day 3. It takes about a month to heal completely.

I'm supposed to eat a lot of protein (which makes sense because my body is making new tissue), so I've been having Boost Glucose Control, Trader Joe's nonfat Greek yogurt cups, Special K protein water, and tofu pudding. I do have some pureed soups, but they're higher in carbs and much lower in protein. It's been hard enough keeping my bg down. I'm at 175% basal and 190% bolus from normal.

I am trying to get some rest, but I'm not even tired. Certainly not what I would have expected!

Constant vigilance!

Something I read on Amy's blog reminded me of this. Last year, right after we moved back to Seattle, we went to a local restaurant famed for its homemade breakfasts. I tested my bg while looking over the menu - it was in the 80s. I ordered coffee and noticed there was a cream container on the table. I asked the waitress if it was real cream, and she said, "yes, it is." Our housemate also got coffee, and takes it with cream. So we both had some coffee with cream. Our food took quite awhile to arrive. After about 30 minutes of waiting, I started to feel odd, so I tested again. My bg was almost 140.

I was confused for a minute, then realized I'd been drinking the coffee. I got out my diastix, tested the coffee, and it was right in the middle of the range. I tested it with my meter: same thing. It hadn't tasted any different than half-and-half, but it was pretty diluted in the coffee. When the waitress came back, I asked her again, "are you sure this is real cream?" She said, "yes." I said, "it's important to know because we're both diabetic, so are you absolutely certain it's real cream?" She said, "yes, it's real cream." I showed her the strip, explained it and said, "well, this container is full of sugar, so can we get a new one?" (I assumed that someone had poured sugar into it). Know what the waitress said then?

"It's nondairy creamer. We don't serve cream here."

Okay, so as it turns out, this restaurant only has nondairy creamer (loaded with sugar), 2%, skim milk, and margarine, presumably for "health" reasons. The food was actually really good (although some butter would have been nice), but we've never been back. I mean, she lied! Repeatedly! I can't understand why someone would do that. I've known people who are allergic to nondairy creamer. Anyway, what I learned was that creamer isn't a free food, so be careful out there!

Surgery

Well, the consultation was interesting. They did panoramic x-rays, which I like because the small ones are painful and don't fit in my mouth. The big x-rays were much clearer. Disturbingly clearer. the nurse and I both said, "oh no" when we saw them. Basically, I have bone loss and my teeth are really impacted. Then, the oral surgeon came in. She's from the former Soviet Union and very direct, with no sugarcoating. She kept asking me questions like she was testing me (she's a professor), and I guess I passed. She asked me how I would treat my diabetes for the surgery. I said I would reduce my basal by 50% and not eat anything for 8 hours, which was apparently the answer she was looking for. That was that, too; she didn't want to discuss it further. I thought she was great!

Since my wisdom teeth are right on the nerves, I have to get a CT scan next week. I will also need to have a bone graft. She said she usually doesn't do it in diabetics due to poor outcomes, but I showed her my A1c (LOL). Both the oral surgeon and the nurse told me there is a significant chance I may lose two back molars. I'm not that upset about it, because one is useless already and the other isn't very useful, either, being only partially erupted. (I don't have enough room in my mouth for my teeth already.) I'd be more worried about potential complications. Also, I have to have general, which I hate, but after seeing the x-rays I didn't really argue.

The doctor agreed that I need to take my other medication (asthma, beta blocker) before the surgery, although most people don't. They also want me to take Benadryl before, since I'm allergic to Teflon and so many other things. It may also help with the painkiller. I took Vicodin once and vomited for 24 hours, so I can't have anything similar and even what they're giving me (Darvocet) may cause me to react. Some people with my reaction don't have it if they take the medication with Benadryl. I really hope it works, because the backup plan is 600mg of ibuprofen, which I already know does barely anything for me. When people who never take painkillers tell me they needed the Vicodin for this, well...

As it turns out, I will need to have surgery again next year for a different problem. They said they could do it with only local, though. Unfortunately, that surgery is mostly not covered by my dental insurance. This one is really complicated, though, so it's a lot more than we thought. So each of the surgeries will cost about...27% of an insulin pump. They're going to make a good show of billing my health insurance, but it's unlikely they will cover it, since as we all know, your mouth isn't part of your body. ;(

Numbers lie

I saw my endo yesterday. My cholesterol is still good, but slightly worse than last time so I suppose I'll have to look into that. My A1c is what it's been the whole time I've had it tested at this lab: insane. It's lower every time, too, despite my bg not changing. Now that we've kind of ruled out lab error, the only thing I can think of is that there's something weird going on with my hemoglobin.

Previously I had A1cs like 5.8%, when my postprandial numbers were a lot lower and I didn't spend a lot of time out of the normal range, although that was at a different lab. This last A1c was under 5 and I don't believe it could possibly be accurate. I've tested in the middle of the night to make sure I'm not having lows or anything. What do I think? I think my A1c should be somewhere between 5 and 6, closer to the middle. I mean, yes, it's definitely a great number, but I just don't think it's an insanely good number...for a nondiabetic. What I know about my bg doesn't support that.

So, today I'm going to have a consultation for oral surgery. That's right, my wisdom teeth are horribly impacted and they have to come out now. I haven't been able to chew in a week. I am not looking forward much to the consultation, where I have to explain not only about my insulin pump, but about the millions of other special conditions that will affect it. The surgery is already scheduled for next Friday. Eeek!

Well

I spent three days installing software on my husband's computer and updating Ubuntu on this machine. I thought the upgrade would help, but now it just runs a lot slower and a lot more things are broken. For example, now it won't open Word documents at all. Okay, then. I get burned out on these things pretty quickly, though. I did manage to get the camera software working on my husband's machine, but his display is not at all like my old one, so I can't tell what the photos look like. They look a lot different on this machine because the display is pretty wonky. So, I'm sorry if the photos look bad!

I have an appointment to see my endo next week. The receptionist called me today to tell me I'm supposed to get labs done tomorrow morning (I was going to anyway, but apparently they actually scheduled me for it and never mentioned it to me) and that they were fasting. Since I hate fasting tests, I know that I just had my cholesterol done six months ago. I asked her to check with the doctor because I'm pretty sure I don't need to have it done for another six months. (My cholesterol was really good, so I'm not sure why I'd need to get it done more often.) She said she would call me right back once she talked to the doctor. I was going to ask if she'd ordered the urine test when she called back, because I think I haven't had that one done in a year. Why they like to schedule the urine test when I'm fasting I don't know, but they tried to do that last time. It, um, doesn't work that way.

Well, it's 5:47 now. So do I fast (UGH), or just tell them to rewrite the lab slip tomorrow? I think she'll give me a hard time about that.

Meme

I've been tagged by Beth and Chrissie.

The Rules:
1. Link to the person’s blog who tagged you.
2. Post these rules on your blog.
3. List seven random and/or weird facts about yourself.
4. Tag seven random people at the end of your post and include links to their blogs.
5. Let each person know that they have been tagged by posting a comment on their blog.

1. I've never been to Mexico, but I speak Mexican Spanish.
2. I don't have any tattoos and I don't smoke, but those are the things people seem to assume about me the most.
3. I wrote my first novel when I was in the first grade. It was over 100 pages, about a little girl who had adventures. I haven't written any novels in the past 15 years.
4. I didn't started getting carded until I was 19. It seems to have stopped a year ago, at 28. And I mean I got carded for R rated movies.
5. I love hobbit houses.
6. I have been a vegetarian for 13 years.
7. I was born in Minot, North Dakota. In my 20 years outside ND, I've only met one other person who was born there...but not on the base.

I tag anyone who hasn't been tagged yet!

Okay then

Short story: my computer failed. I don't know when I'll be able to upload photos to the Diabetes 365 project again.

Long story: It's almost certainly a hardware problem. It's a laptop that's given me hardware trouble since the day I got it (March 2004). I've replaced the hard drive twice, the DVD drive once, the power cord twice, and the motherboard once. It just turned itself off, and now it will attempt to boot its little heart out, but it never gets past the "boot Windows in safe mode?" screen. The hard drive is ok and I can get the files, but I really need the software. We have a drive enclosure, but nothing can boot from that, and even better, the drive isn't a SATA drive. In many cases, just installing the software on another machine is not enough. My husband's machine used to have the software all set up, but it failed a month ago (it was even older than my laptop), and we can't get his new machine to boot from the old hard drive.

Since the problem with my machine isn't something easily accessible like the hard drive, the chances of repair are low. The case is so broken that if we opened it up all the way, it would be impossible for us (or a repair place) to get it back together again.

Bottom line: I need a "new" laptop. We haven't ever replaced this one partly because I need a matte screen, a trackpad, and Control keys on both sides of the keyboard. That rules out about 99% of laptops. The other part is, of course, that they're expensive.

Goodnight

Chair thief
Originally uploaded by lilituc.
Marrakech
June 22, 1995 - November 16, 2007

We got him from the Humane Society in Salt Lake City, Utah. There were four fuzzy kittens, all in a ball. They were half Siamese and half Norwegian Forest Cat. About two years ago, we learned about a cattery that had tried to cross the two for some reason. Coincidence? I doubt it. I wonder what ever happened to the other kittens.

Kechie loved corn chips, crackers, and playing with his bell on a string. He figured out how to open doors, turn off lights, and tell us what he wanted. Two days ago, he told us, "something is wrong." The vet examined him and said he thought it was probably cancer, on top of the chronic renal failure. We took him home and gave him painkiller. Last night, he laid down and didn't get up again.

Up Close and Personal

16 November 2007 Day 39
Originally uploaded by lilituc.

I will tell you a secret. When I feel something is wrong, I test my bg (75 cents) and test for ketones ($5.60) not because I think I will see something, but because I want it to be something that I can fix. I want it to be something manageable, like diabetes. Some of my health issues are only partly manageable. Right now one of them is managing me.

I lived with chronic pain from about 1994 to 2005. I say "lived" because the pain went from 5-6 to 1-2, not because I was not having any pain after that. Anyway, I got used to it. OTC pain medications didn't do anything for it, so I didn't bother taking them. I saw a long line of doctors who, I guess because of my circumstances, told me I was "hysterical," that it was "all in my head," acknowledged I was having the pain but said they couldn't do anything about it (?), who said I needed acupuncture (tried it), meditation (do it), needed to relax more (did it) and who sent me to specialists who were even nicer than that.

Now, they did find out that I have some very serious conditions, which they started treating in 2003. Most of the seemingly unrelated diagnoses I have are related to nerves. Please don't tell me to see a neurologist; I've seen two and neither was interested in actually diagnosing or helping me in any way. I've given up on that for now. I'm pretty convinced now that the real issue is that when they were passing out neurological systems, I drew the short, twisted straw and it is manifesting partly as some conditions that don't even have names right now.

I'm not sure why the pain (mostly) went away. It went down when I went on a beta blocker, and dropped significantly when I went on insulin, as did my chronic fatigue, but there's really no explanation in that, is there? Now, I did have bad days here and there where I was back up at 5 or 6 and an occasional 7; this happened mostly when the pressure changed outside.

These past two weeks, though, I've been firmly at 7. The first couple days, OTC medication worked, but not since then. I am not that active to begin with and now I'm having trouble with things like getting around my house. I can't seem to regain my lost skill: getting used to it. So, next week I have to go see my somewhat new Internal Med doctor, whom I have never chatted with about the chronic pain before, and tell him that the pain is back, and that no one ever found a reason for it. But what can he do? Give me a stronger painkiller? Will I have to take it forever? I am worried.

15 November 2007 Day 38

15 November 2007 Day 38
Originally uploaded by lilituc.

Sometimes, being diabetic is an advantage. These syringes are for my cat. He's going to be getting injections of painkiller three times a day. The way that our vet reacts tells us that many people must be unwilling or unable to give their cats injections or subcutaneous fluids. We have no problem with it and find it's much easier for us and for the cat. They can't feel the injections.

The vet was also pleasantly surprised when he didn't need to explain to us why we should give a cat with renal failure an ACE inhibitor, a phosphate binder before meals, and Pepcid.

I didn't actually want the short needle, but the pharmacist was looking at *me* when she got them. They seem to be durable enough, though, whereas my syringes are not.

D-Blog Day

Happy D-Blog Day, everyone!

I would be nowhere without the Diabetes OC. I am a librarian, so I know how to do research. I've read tons of books on diabetes, endocrinology textbooks, read studies and journal articles. I've been told (with a straight face, no less) that I have more training in it than some doctors. Yet something was missing, and I kept hearing false notes. At first, I didn't understand. This is what doctors read. Aren't they supposed to be the experts? Isn't this information supposed to be correct? Forget my own diabetes; what I learned didn't really fit with my experience having a close friend with Type 1.

Recently, someone asked me for a good book on LADA. And, well, there is no good book on LADA. There is no book on LADA. There are only a few books that even mention LADA. So where is the book? It's in our heads. It's in our experiences. We are the experts. I sure hope that the medical establishment catches up, but until then we are out there, sharing our experiences.

Without the experiences of other diabetics, I wouldn't really know anything about diabetes.

Surviving

That is what I'm trying to do..survive. To somehow put my life back together. Some days it's like an emptiness, and other days it's like a punch in the gut. I try not to think about it, but it's hard, because every day it's something. I think, "I have to tell Jennifer about this great blog" or "what would Jennifer think of this story" or "Jennifer would laugh herself silly if I started saying, 'shalom out.'" All the other people have moved on, but for those of us who really knew her, well. A friend told me her mother died six years ago, but it's still the same for her.

So, I've been trying to keep busy. I've been going to classes again, and I like them a lot better than the first place I tried. I've been studying Hebrew and finding it much easier than I thought it would be (although keep in mind the vowels are marked and everything). I have no explanation for it.

Somehow diabetes fades into the background. I think it's like driving is for people - I'm not ignoring it; I just do it on autopilot. Test, bolus, eat, test, bolus, repeat. So far I haven't gotten any job offers, but I'm stepping up my search for a full time position (even though I really don't want to work full time) because my husband hasn't been able to find anything with benefits, and our COBRA runs out in January. And so life goes on, just like it always does.

Type WHAT?!

5 November 2007 Day 28
Originally uploaded by lilituc.

So I've actually seen the words coming out of her mouth on Inside the Actors Studio. It's not better than what was reported; it's worse!

Halle: I had no understanding of what diabetes was. I instantly thought I was going to die, because I heard, "disease" and "okay, after disease there must be death." And I got a very quick education about what diabetes was, and I realize that I probably had it for most of my childhood, but when you're diabetic, nothing hurts.

James Lipton: Is this Type 1?

Halle: It is really Type 1, but classified now as Type 2 because I'm no longer insulin dependent. I was for awhile, and I've managed to wean myself off of insulin, so now I like to put myself in the Type 2 category.

James Lipton: You control it with diet and with exercise?

Halle: Yes.

This is our JDRF spokesperson?

Stress

22 October 2007 Day 14
Originally uploaded by LilituC.

Both higher and lower than I expected. Huh? Well, it should have been much higher, but for the last hour I've been involved in a stupid argument on the internet. After I read a particularly ignorant statement about diabetes (low blood sugar, in fact), I felt I had to correct the misinformation. Still confused?

Well, one way I'm different than a typical diabetic is that stress lowers my blood sugar. Yes, lowers. So I was expecting a low number (and it's probably still dropping). This isn't as great as you might, think, though. Getting upset, crying, getting angry, and general stress all cause me to have lows.

My theory, which also would explain why my diabetes is so weird and my hypoglycemia before I was diabetic, is that my liver doesn't dump sugar when it's supposed to. I've never recovered from hypoglycemia without eating, no matter how long I wait.

19 October 2007 Day 11

19 October 2007 Day 11
Originally uploaded by LilituC.

My cat takes B12 injections. When we picked up the supplies, I noticed that they charged us $15 for 12 insulin syringes. I said, "Wow, I could get a whole box of 100 syringes for less than this!" Everyone in the room stared at me.

Finally the tech said, "uh, are you in the health care industry?" I said, "no, I have Type 1 diabetes." After a long pause where she looked like she wanted to say something, she said, "me, too."

These syringes came from J., though, since the needles on mine are too small for cats. ~$1 for 10.

Pump bath

14 October 2007 Day 6
Originally uploaded by LilituC.

I don't remove my pump when I take a bath. The last time I did that, my blood sugar went up over 100 points. Yes, I know it doesn't make sense, but there you have it.

In some ways, this project is going to be challenging. I'd already taken a photo of my sharps container, a photo of the inside of my bag, and a photo of my diabetes cabinet. But what better to illustrate?

Breakfast

13 October 2007 Day 5
Originally uploaded by LilituC.

This is what I eat every day.

12 October Day 4

12 October Day 4
Originally uploaded by LilituC.

New purse

11 October 2007 Day 3
Originally uploaded by LilituC.

I got the black one!

10 October 2007 Day 2

10 October 2007 Day 2
Originally uploaded by LilituC.

Duct tape

Duct tape
Originally uploaded by LilituC.

Because I need something to do, I am joining the Diabetes 365 Flickr project.

About Diabetes 365

This is a group for diabetes-related pictures that you take as a 365 day project.

Basic rules for now. You must post a daily picture by the end of each week. Number each one consecutively and tag them with 'diabetes365'.

Each daily photo must illustrate some aspect of daily living with diabetes and help explain what it's like to live with diabetes every day of the year.

Let's try and show the world how Diabetes is something that we work at and live with all year round.

why

This morning I was awakened by a phone call, offering condolences. What? My best friend, Jennifer, is gone. She passed away some time in the last two days. Her family said that it looked like she had slipped and hit her head on the bathtub in her apartment.

She was beautiful, brilliant, vivacious, caring, perceptive, opinionated, and funny as hell. She was only 34 years old. I still can't believe she's gone.

May her memory be a blessing.

Fashion loss

I've long struggled with what kind of purse to carry. I like to have my diabetes supplies accessible (not in a case in another case), as well as all the other crap stuff I need to carry around. The first purse I got after becoming diabetic was this one:

I really liked this bag, but it had a couple drawbacks. First, beige canvas + diabetic = !! (it's lighter than the picture). The second is that it's huge. Seriously huge. I looked at the measurements, but didn't quite get the full effect until I could see it. While I could fit all my stuff in it, I kept thinking I looked dorky carrying it around.

The second bag I got was this one:

It's pretty similar to the first one, but the strap is in a different place and I didn't really like the look of the faux leather, so I decided to get leather next time:


I had it about three months before it looked like it'd been through a war. It turns out I'm really hard on bags and leather can't really take it.

At this point, I decided to branch out in a different direction, a more "fashionable" bag:

When I got the bag, I found out that it's not really brown; it has tiny black and brown stripes, and it's really shiny. So it didn't go with the things I already had. Psst, could use some better pictures in this case. Once I got over my initial shock at the small size of the bag (especially compared to what I'd gotten used to), I pared down everything and stuffed it in there. It was cute, super cute, even. The problem? I started to learn all the advantages of the previous bag for a disabled person.

The previous bag has a flat surface on top, which I used quite often at the store, because stores are just not that great at accessibility (I'm looking at you, no-accessible-checkout TJ's) and I need the extra surface. It's also flat, so I could jam it against a flat surface and open it with one hand. I also appreciated the long strap, because it distributes the weight better when I wear it crosswise. The new bag falls off my shoulder because I don't really have the strength to keep it on that well. There's also my giant fear of having my purse stolen; with the last one I knew no one was getting that thing off me. I also didn't get backaches after carrying it for ten minutes. I didn't need to put it down on something and use both hands to open it. I remember it being a problem at restaurants when I was sitting at a two person table, but I've had to get used to putting my bag on the floor, and I finally got a hanging thing for my cane. With the prospect of having to go out more often, I need to have something sustainable for me, something that helps rather than makes things harder. I'm sure the new bag is a great bag for everyone but me, but I think I'm going to have to go back to the old one. Fashion loses.

The question is, which one to get. The beige canvas performed the best for me, although it was hard to keep clean. The faux leather had a different weight distribution. The leather didn't last very long with me using it. This is the coat I have now, although it's lighter and brighter than the picture, not really an olive or "fatigue." Decisions, decisions.

Book meme

I got tagged by Nicole! Okay, so she tagged everyone.

Total Number of Books Owned: A little over 1456

Last book bought: The Discovery of Insulin by Michael Bliss. Very interesting. What a lot of drama went on.

Last Book Read: Harry Potter and the Deathly Hallows. (I actually reread the whole series after reading DH originally.)

Five Books That Mean a Lot to You:

1. Using Insulin by John Walsh. Seriously.
2. Type 1 Diabetes by Ragnar Hanas. Makes me want to move to Scandinavia.
3. The Silent Language by Edward T. Hall. Really, most of his books. Completely fascinating and explained things I had been wondering about (and struggling with) for a long time.
4. Longer Views by Samuel Delany - Amazing writer, amazing book.
5. Fire in the Lake: the Vietnamese and the Americans in Vietnam by Frances Fitzgerald - I was stunned when I first read this. I had to check the publication date repeatedly because I couldn't believe it. I even met a Vietnam scholar who didn't know this book. Apparently the least known and best book on the subject? No wonder it seems history is doomed to repeat itself.

Best Five Books You Read in the Last Year: I haven't read a lot of books in the past year because of my eyes (not related to diabetes)

1. Mama Might Be Better Off Dead: The Failure of Healthcare in Urban America by Laurie Kaye Abraham - I knew a lot of it already, but the book really brought it home.
2. Abraham by Bruce Feiler - About the role of Abraham in Judaism, Islam, and Christianity. Boy did he ever do some crazy things! And yet it all worked out somehow.
3. Medicine and Culture by Lynn Payer - I think "Sicko" left some things out when praising France's medical system, heh. I'm not going to tell you; you'll have to read about it.
4. Native Speaker by Chang-Rae Lee - can that man ever write. It was refreshing just to read something that well-written.
5. Okay, not a book but a series: the Mas Arai series by Naomi Hirahara. Pretty good mysteries and felt pretty familiar to me. I think she got it right.

I guess I will do the open tag thing, too. Do it if you want!

Arrr

arrr
Originally uploaded by LilituC.

It be International Talk Like A Pirate Day!

The Diabetic Athlete

Dr. Sheri Colberg is revising her book The Diabetic Athlete. The first edition came out in 2001, and I know I've been hoping for a new one. She needs input from diabetics who exercise - should be all of us, right? ;) - so go here to fill out her questionnaire.

Are they going to eat that?

This diabetes thing has been a long, strange trip. Just kidding, it hasn't been that long; it just seems like it. Lately, I've been struck repeatedly by something odd: I forget that other people aren't diabetic.

I see people heaping their plates with pasta. I see a person at the next table in a restaurant eating Banana Spring Rolls (that's the value for 1/2, not a whole dessert). My husband just made me a cake for his birthday (don't ask *me*), and it takes me a minute to remember that he *can* just eat it. All those other people probably have no idea how many carbs (or calories) are in whatever they're eating. It's just seeming strange to me right now.

I don't know why this is happening. Maybe it's because I've been often having dinner with J for about five years now. Maybe it's because most of the people I talk to online are diabetic, too. Maybe I'm living in diabetic world. (Woohoo, where are the t-shirts?) Or maybe more people should listen to "Pancreas" by Weird Al.

Diet?

People seem to think I am weird for carrying around Diastix. Sometimes even people who later ask to use them. Well, they're cheaper than test strips for testing drinks.

Lately I've been having bad luck with drinks. I went to dinner with my housemate at a new restaurant and we both got diet RC. His was diet and mine was regular. Huh? The waiter said he pressed the same button, so we concluded it was the machine (although you kind of have to say that or people get offended). In fact, he got pretty agitated anyway (he kept insisting it *was* diet, up until I showed him the strip). I don't really get what happened, but I guess sometimes when it runs out it can switch over to another tank? He got us some water and then never came back to our table. Now I have to wonder if he got so worked up because they ran out of diet and he thought we wouldn't notice.

Then we were having dinner at a large chain restaurant and we both ordered diet Sprite. We both got regular. The waiter said he'd have them check the machine and then came back with some diet. No need to get all upset, heh.

A couple days ago we went to see a movie. I got a large diet Coke (aren't they all large?). Our housemate watched them pour it, so he knew it came out of the "diet" dispenser. I tested it and got inconclusive results, so I tested it with my meter (as control solution, of course) and got 150. Diet is "error" and regular is 500-700. I drank it anyway, but bolused for 10g. It seemed to be okay.

The oddest thing is that even though I can always tell regular from diet, in all those cases it was unclear to me because the mix was pretty off. Sometimes fountain drinks can taste really odd. Still, I've sure learned to trust that nagging feeling!

Doctors With Disabilities

A friend is involved with the launch of a new site: Doctors With Disabilities, for health professions students and health care professionals. It's wiki-style, hosted by the Disapedia, a disability wiki. There's also a forum for messages. Diabetes is definitely included.

It's not just for doctors and med students; those in allied health professions are very welcome. The focus will be on sharing tips among students and people interested in the medical field and those in practice. Check it out!

No kidding

While I was browsing an online pet pharmacy, I saw an insulin section. Well, of course I had to go take a look. This phrase stopped me in my tracks:
Please note: All Insulin must be shipped by 1 day air service.

Why on earth is it that the pet mail order pharmacy has this down and the *human* pharmacies do not?

Is it real

Is it real
Originally uploaded by LilituC.

It hits me at the oddest times. Tonight, after a very long day of fighting stubborn bg including 120% basal, rage bolusing, and trying everything to no avail, my purse was full. As I emptied it onto the table, I was suddenly struck by what I saw. For a minute, I couldn't believe they were mine.

Then it passed, and everything was normal again.

It works!

I was quite shocked the other day to be told by a (nondiabetic) friend that my insulin pump never works. I guess my blog gives that impression. Just for the record: yes, it works. It works probably 99% of the time. I blog the exceptions because they're of interest to me and I want to be able to review them later. If I wrote about every time something didn't go wrong, I would quickly drive myself nuts.

Why do I have so many exceptions? Well, step one is noticing. I'm really observant, know my body very well, my diabetes is usually really consistent, and I have excellent control. So, I can generally come up with the answer or a couple possible answers as to why something happened. It's (as you undoubtedly know) not the same for other diabetics. I blog about when the diabetes fairy visits precisely because it's so rare. It makes sense that if the diabetes fairy visited often, you'd have to give up trying to figure things out just to keep from going nuts.

Another important part is that I can tell when my bg goes over 120. I actually get physically ill. This is extremely rare; I've only heard of 2 other people that say they can do it and only one of them gets sick. That's what enables me to do what I do, or, more precisely, requires me to do it. Other factors include my small Total Daily Dose, my unusually consistent insulin absorption, my psychic ability to detect patterns without having a doctor look at my numbers on a chart (hey, I can't explain it), the way John Walsh has no explanation for most things about me. So my diabetes is different from almost everybody else's diabetes, and I find that interesting, so I blog about it. I haven't included a disclaimer in every post because I guess I figured people would remember the disclaimer. Probably I should actually write a disclaimer.

In the scheme of things (for the people that know me), diabetes isn't that huge a deal. Really, I'm much more likely to pass out because I have dysautonomia and neurocardiogenic syncope than from the diabetes.

Insulin soup

I could swear I need a checklist of everything that can possibly happen so I can start checking these things off. The trip to the Bostonish area went mostly okay. I didn't have any significant change in insulin requirements, but the first day we were on the island, I had to lower my basal by .05 and bolus by one g/carbs. After that, everything was normal. I anticipated how much extra insulin I needed on the plane and was right. That was great.

Now, for the weird part. The first day we were there, the place we were staying was around 90° and up. By the end of the day, the insulin in my pump had gone bad. I then had to refill it with cold insulin. I do have a pump frio, but I didn't think it would be warm enough outside to bring it. It wouldn't occur to me that I'd need to use it inside, since I can't be in that kind of heat due to another medical condition. In retrospect, we really should have rented a car and gone to a hotel. I did bring a frio for insulin, but it didn't really keep it cool enough. I did make sure to water it enough and let it breathe, so maybe it's because I used the waterproof inner bag? I'm still not sure why. When we got back, I just ended up throwing out all the insulin I took with me since our flight had been delayed and it had been hot, etc.

Despite all these precautions...the vial of insulin I opened upon our return (from my fridge) was bad. The first day, I thought it could be a million things and used 11% more insulin. The second day, I used 25% more insulin. Today, I woke up out of range for the first time in six months and was using 50% more insulin (!) when I finally went, "hey, wait a minute..." After I'd decided to return the insulin, I remembered that J. once had to return some bad insulin to the pharmacy (and we use the same one). I asked him when and he said a month and a half ago. Sure enough, that's when I picked mine up. So, I took them back to the pharmacy and got replacements. The pharmacist was quite surprised and looked grim when he said he'd have to pull everything from that lot. He didn't remember J. returning his. That got me thinking...if a whole shipment of insulin goes bad, why do so few people notice? Are most people getting it Type 2 and it doesn't make much difference? It's very noticeable to me because my TDD is so low. Do people not test very often? I wonder why that is.

I like cases

cases
Originally uploaded by LilituC.

Cases for my pump.

Guess who's coming to dinner?

I've had dinner with J lots of times, and usually it doesn't turn into a Diabetic Dinner. Then, last night, we took an ill-fated trip to CPK. I'd been running high since lunch, when I tried a new frozen entree and decided not to guess at how many more carbs it contained than the box said since I didn't want to end up low. Well, it turned out to be a lot, and now I know that everything from that brand is going to be higher than it says. That was around 2, and at 8:30 I will still trying to get my bg to come down!

We got to CPK around 9:20 and I was at 86! I decided to have pizza. Now, for awhile I had to stop having pizza when we went there because it was too difficult to get right, but now that I can dose so well, I was excited, especially since my bg was good. Well, my favorite, the Pear and Gorgonzola pizza, was gone! The waiter said it was really popular, too! Unfortunately, I don't like any of the other pizzas. I grudgingly decided to try to the new curry mango pizza (minus the chicken). J got the mushroom pizza.

I did a dual wave bolus over 30 minutes in case I didn't feel like eating it all, and J took some insulin. I actually didn't feel like eating the whole pizza. It was okay, but as they say, "not worth the insulin" for me. J. thought his pizza should have come with red sauce and only ate half of it, quite unusual for him. I was cranky because I couldn't have my favorite pizza (ever! again!) and I'd been avoiding it until my control was better. J was cranky because he had a lot of insulin on board. So he had to have dessert to cover the extra insulin.

Memetime

1. When you looked at yourself in the mirror today, what was the first thing you thought? I need to dye my hair.

2. How much cash do you have on you? Zero.

3. What's a word that rhymes with DOOR? Moor.

4. Favorite planet? Neptune.

5. Who is the 4th person on your missed call list on your cell phone? J.

6. What is your favorite ring tone on your phone? The silent one a friend sent me for when people give out my number to unwanted callers.

7. What shirt are you wearing? Green button down.

8. Do you label yourself? No, I'm a label-hater!

9. Name the brand of the shoes you're currently wearing: We don't wear shoes in the house.

10. Bright or Dark Room? Neither? Too bright or too dark will give me a migraine.

11. Why is there always a missing question? Pasting is hard.

12. What does your watch look like? Silver and black Timex.

13. What were you doing at midnight last night? Reading a book.

14. What did your last text message you received on your cell phone say? Coming home now

15. Where is your nearest 7-11? I know there's one a mile away because that's where we turn.

16. What's a word that you say a lot? CENSORED!

17. Who told you he/she loved you last? I don't remember, actually. One of the usual suspects.

18. Last furry thing you touched? My cat.

19. How many drugs have you done in the last three days? Many prescription, none illegal.

20. How many rolls of film do you need developed? None that I know of.

21. Favorite age you have been so far? 29.

22. Your worst enemy? Culture of conformity.

23. What is your current desktop picture? The moon (one of the defaults) because if I use a cooler one I get weird looks when I take it somewhere.

24. What was the last thing you said to someone? "No, he loves the litter box."

25. If you had to choose between a million bucks or to be able to fly, what would it be? If I had a million dollars...

26. Do you like someone? Who doesn't?

27. The last song you listened to? Joan Osborne - Midnight Train to Georgia.

28. What time of day were you born? 5:23 am.

29. What's your favorite number? 17.

30. Where did you live in 1987? Billings, MT. I also know the address and phone number.

31. Are you jealous of anyone? Not really.

32. Is anyone jealous of you? I doubt it.

33. Where were you when 9/11 happened? Online in my home office in Las Cruces, NM.

34. What do you do when vending machines steal your money? Shake my tiny fist.

35. Do you consider yourself kind? Yes, although I've grown wary.

36. If you had to get a tattoo, where would it be? On you.

37. If you could be fluent in any other language, what would it be? Besides Spanish, Japanese, German, Latin, and Mandarin? I've always wanted to learn Hebrew and Norwegian.

38. Would you move for the person you loved? Been there, done that.

39. Are you touchy-feely? Sometimes and sometimes not. It hurts (literally) to be touched so I have to be careful.

40. What's your life motto? Screw you guys, I'm going home.

41. Name three things you have on you at all times: The kitchen sink! J/K my pump, medication, meter, insulin, extra pump supplies and all the other stuff.

42. What's your favorite town/city? Seattle, Twin Cities, Chicago, Manhattan, Boston.

43. What was the last thing you paid for with cash? I think we shook the car for money to feed a meter.

44. When was the last time you wrote a letter to someone on paper and mailed it? 2003.

45. Can you change the oil on a car? I can't even drive a car.

46. Your first love: what is the last thing you heard about him/her? He's still drinking.

47. How far back do you know your ancestry? 1500s for some, 1800s for others, about two generations for my father's side.

48. The last time you dressed fancy, what did you wear and why did you dress fancy? I dressed up to go to the Melting Pot for my birthday. I wore a purple and black kimono dress.. I put the pump in my trouser sock.

49. Does anything hurt on your body right now? Everything always hurts on my body; but I'm used to it. Today my back and legs are bothering me, though.

50. Have you ever been burned by love? Literally! Heh.

51. Do you have a crush on any bloggers? Who doesn't?

52. Where would you like to live? Twin Cities, Chicago, Manhattan, Boston...if I had a million dollars.

Extra pocket

Check out what I ran across when I was looking at clothing online, ladies:
Nothing Bare Pocket Hipster.

I admit that page doesn't do the best job of explaining what it is, so here's the original, sans pocket. You're meant to wear it under a shirt. Admittedly, you'd need to make a hole in the pocket, and I don't know if the pump would be too heavy, but I still think it's pretty cool!

Travel fun

Well, I'm finally back after our annual trip to Tahoe for a conference. This year, we decided to take advantage of living in Seattle and drive, since we hate to fly and we need to take a lot of stuff with us. Driving did make things hugely better, but our car broke down in Yreka. So we lost the extra day we would have spent picking up supplies and getting things settled. I'm sure Tahoe is a wonderful place if you're not there for a conference. Every year, we go there and every year we don't have time to do anything else. Sometimes we even miss the small window in which stores and restaurants are open -- if you go, don't do that! It was nice to see people, albeit briefly, though.

Since I've travelled by car before, I knew I would probably need more insulin. Last year, I needed about 8% more. This year, I needed 40% more every day that we were in the car. I'm not joking! I was really conservative about it the first day and spent a good part of it over 200. Once I'd gotten up to 40% and stuck to it, everything was fine. I had read that a lot of people needed less insulin at high altitudes, so I went back to my normal insulin amount once we got to Tahoe. Actually, I needed 30% more on the first day (for other reasons) and 20% more after that. When we got back in the car to drive back, I went back to 40% and it worked out great. On the one hand, there were some really crappy days in there. On the other hand, I managed to figure it out and the last 3-4 days everything went really well. My housemate had about the same experience - he needed tons more insulin in the car and some more in Tahoe. He told me that 40% was ridiculous and couldn't be right, but I guess I think that until he keeps track of his own insulin intake and proves to me it's not 40% more, he can stfu. ;)

There was one day where everything seemed to go wrong: our first day in Tahoe. In the morning, I had settled on 20% and everything was going fine, but by afternoon I kept taking insulin and it seemed to have no effect. I was pretty sure my insulin wasn't bad and my set looked okay. I did have a low a couple hours before dinner, so I ate 28g of chips (low fat) and then bolused for most of it. When I sat down to eat dinner, I was at 171. Wait, what? I bolused for dinner even though we hadn't ordered yet - about 10 units. I checked again about 40 minutes later and I was at 220. I still hadn't eaten anything yet. I can assure you that I wouldn't see a rise from eating chips after more than two hours, so I was completely puzzled. We ate dinner and hurried back to the hotel because we were supposed to be somewhere. When I pulled my set, guess what happened? About 12 units of insulin came pouring out! This was only the third day for it, and normally I change after two because it's a needle set, but tunnelling never happened to me before. Once I'd changed it, everything was back to "normal."

The best part is that I have an endo appointment tomorrow! Heh. I wish all of you less "interesting" trips.

I can has cabinet

I can has cabinet
Originally uploaded by LilituC.

I finally got a cabinet to put all my diabetes supplies in, since I was tired of them being all over the house. I especially wasn't enjoying storing my sets on the floor. I absolutely love this cabinet! Here's what it looks like closed. I got it from this site.

Thoughts on service

So I called MM and explained what happened. They want me to return the sets (including a used one, ew) and they will send me new ones. Or rather, they sent me one box of new ones and envelopes and canisters to return the old ones. Once they receive those, they will send me the other three boxes. I can understand it, but it doesn't entirely alleviate my panic at only having half a box of sets. Anyway, I sent the old ones back but I don't know how long they'll take to arrive at MM.

Now MM has been dinged for their customer service (even by me). One problem that I see became clear after talking to the same person in sales and supplies more than a few times. It seems that the sales people are not trained on the products they're selling. I learned that this person had never seen a data cable and didn't really know how infusion sets worked. I am a lot more clear on how I was mistakenly sent IV-3000 instead of IV Prep - they're just words on a computer screen to someone who doesn't know what they are. If people call up and don't know the name of what they want, they have to talk to the Helpline.

Last time I had to order tubing (from the Sils), they tried to talk me out of it because I'd just ordered sets (Sure-Ts). When I finally convinced them that yes, I wanted to buy more sets because I only needed the tubing, they tried to get me to order the box with 5 sets of tubing and 10 cannulas for $100, instead of the box with 10 sets of tubing and 10 cannulas for $116. It took 5 minutes to get them to understand why this wouldn't work (during which they kept trying to get me to talk to the Helpline). I think the major issue is that we might as well be talking about floobles and gargs for all they know. I think it's a problem when people don't know what they're selling. I know they can't give out medical advice, but they should at least know what people are talking about when they say they want to buy something. If they solved that, they might solve a lot of the complaints.

Enh

I did end up getting sick. Then, I got better. Go, antibiotics! It took me awhile to feel a lot better, though, because my blood sugar has been higher overall. Now, I did gain 5 lbs since the beginning of the year(!), even though my caloric intake has trended down and my activity level has gone up. I'm starting to wonder if moving to Seattle made the difference - maybe the climate is having an effect on my metabolism. Anyway, since that happened more gradually, I don't think it's why I suddenly need more insulin. A more plausible explanation is that my insulin production has dropped again. It's not a huge change - from .35/hr to .40/hr. So far I've only changed my breakfast ratio to 1/12, but I need more data on whether the others need to be changed.

I've been having issues with my Sure-Ts lately. Basically, the failure rate has been pretty high - I'm getting concerned about how I will be able to pay for enough sets if this continues, since they aren't cheap. My insurance does cover them, but they won't cover the extra ones you have to throw out. I've having to change them 1-2 times a day, and that's with letting it go as long as possible. I got these Sure-Ts in my last order a couple weeks ago, and the needle isn't exactly at 90°. Maybe 105°? I can't figure out if they were always like that, although I don't think they were. I don't have any old ones left. The sets I have are two different lots, so I opened up the second lot and they were the same. Wait, I just remembered I had an old Sure-T in my purse. I checked and it looks like it's perfectly at 90°. The second problem is that the pliable wings are slightly off on one side. So I put in the set, but when I go to tape it flat, flattening the wings makes the needle move. Aargh! I hate having to return things to MM. Maybe I can just try to bend them back into position (carefully); that's what I did with the last one. Or, okay, maybe I will also try calling them tomorrow.

For Chrissie

precision xtra
Originally uploaded by LilituC.

So last night I was stuck in a rage bolus cycle, trying to get my bg to go down. It wasn't super high, but I just couldn't believe it wasn't going down at all despite all the insulin I kept taking. I checked my prime screen and discovered it had been two days since I changed my set (somehow it always sneaks up on me). So it was time to change anyway. It looked totally normal, too.

Then as I was leaving the bathroom I was stunned by a big wave of nausea. Wait, what? I didn't feel sick at all otherwise and I usually feel it right away. Still nauseated, I thought maybe it could be ketones, so I checked. I'm not sure why even small ketones make me so nauseated; I get the impression other people don't feel them until they're higher. I tested my bg and got 109.

I still have no idea what happened. I felt better after an hour or so and my bg is back to normal now. I didn't test for blood ketones again because I just can't afford it. I did wake up with a sore throat this morning, but I did every day this week. I had just figured it was normal. Except my housemate got diagnosed with strep throat this morning, so I foresee a trip to the clinic to get tested in my future.

Surprise Color

surprise color
Originally uploaded by LilituC.

It's subtle; I didn't notice until I put the pump on a white surface.* That skirt I got at the thrift store really *was* new - the color bled!

*White surface not featured here due to lack of light.

okee then

So in my neverending quest (I'm kidding) to have everything ever happen to me in the shortest time possible...tonight I got the dreaded NO DELIVERY alarm.

You see, we went out to the Melting Pot for my birthday and I had to bolus for the tons of food I ate with no nutritional information to guide me, and actually I did pretty well - only had to do one correction. Wait, what's that? Get to the point? Oh, right.

Awhile after we got home, we were going to eat my birthday cake. I had just changed my set, and I bolused for 50 g of carbs, but in the middle of it, NO DELIVERY. I looked at the set, pulled on the tubing a little to loosen it from the tegaderm. Well, okay, so the tegaderm was covering a bit more tubing than usual, but it was like an inch. Surely that couldn't make a difference? Then I tried to bolus the amount remaining. NO DELIVERY. I pulled off the tegaderm, but not the set. I think this was only possible because I had just put it on. Then, I tried again, and it worked. Except then I didn't know how much insulin I'd actually gotten. The pump said I'd gotten all of it, but who knew. So I slapped another tegaderm on there, bolused for 48 g and figured I could have a snack if I started dropping. Well, I never ate the snack. I *know* I got the last 1/3 of the first bolus, and the cake was probably around 38 g (I didn't know my husband put Splenda in it) so I totally should have started dropping, but I never did. I guess, as I read somewhere recently, the diabetes fairy must have visited me today.

ahahahahaha*ow*hahaha

So I was clicking around on Novo Nordisk's Changing Life With Diabetes website. I like to check out new tools and see what I think of them. I got to a screen where it was asking me to input my current status and then my goals. Question one: how many times do you check your blood glucose daily?

The form would only take a single digit.

no news is good news

Besides my endo, I also love my eye doctor. Amazingly, she's not an opthalmologist, but you know what? I insisted on seeing only doctors for years, and not one of them ever did anything for me. I'd tell them about my severe dry eyes, my headaches, my nausea, and they just gave me a bored face and said there was nothing they could do. Here's your prescription, now get out. Whereas my optometrist has been absolutely amazing! She said of course there were several treatments for dry eyes, she figured out why I was having headaches and nausea in less than 10 minutes, and at one point she said, "oh, I wrote my thesis on that!" Yes! Oh, and my endo thought it was perfectly alright for me to see her.

So after many appointments with her for the above, today I had my diabetic eye exam and my last appointment for the next year. I had a dilated eye exam four years ago (before I was diabetic), so I wasn't expecting anything. She didn't find anything diabetes-related, but she did say I have some thinning of the retina, which happens in really near-sighted people but diabetics need to keep more of an eye on it. She was really surprised that the thinning wasn't at least mentioned to me after the last exam. I was and I wasn't, if you know what I mean...

Holy wayback, Batman

Check out this video of an insulin pump from 1980.

Seven things

I've been tagged by Cass!

Seven Things to Do Before I Die
1. Finish learning Mandarin, German, Latin, Japanese
2. Learn how to program (I mean the real way)
3. Get a passport
4. Get out of the US
5. Go outside
6. Visit Israel
7. Pat a bunny

Seven Things I Cannot Do
1. Be spontaneous (which is actually my nature)
2. Be disorganized (also my nature!)
3. Just go somewhere I want to go
4. Run
5. Change environments too quickly
6. Stop worrying
7. Fix things

Seven Things I Find Attractive in Others
1. Kindness
2. Intelligence
3. Wit
4. Politics
5. Weirdness
6. Loyalty
7. Talent

Seven Things I've Been Known to Say
1. What the hell?
2. Are they on crack?
3. What in the crap?
4. Who's my little brattywatty? (to cat)
5. WHAT?! (to meter)
6. Why am I so tired?
7. Oh noes!

Seven Books I Love
1. Harry Potter series
2. Miles Vorkosigan series by Lois McMaster Bujold
3. Nero Wolfe series by Rex Stout
4. His Dark Materials series by Philip Pullman
5. Just a Geek by Wil Wheaton
6. The Silent Language by Edward T. Hall
7. Nightrunner series by Lynn Flewelling

Seven Movies I Recommend
1. Addams Family Values
2. Muppet Treasure Island
3. Office Space
4. Army of Darkness
5. Heathers
6. Hobgoblins (MST3K)
7. Harold and Maude

Maybe everyone's been tagged?

Great endo visit

Wow, I had a great time seeing my endo. I must admit that can't give her my highest recommendation because she's so busy she can't return phone calls until after 5pm the next day (or sometimes the next week if you call on a Thursday or Friday), but she's so fun! Yes, really.

I got my new data cables this morning and hastily uploaded my data and printed out a bunch of stuff. I didn't have much time to look at them, but I really like the reports on Carelink; they're good at showing the right data. The endo was so happy to see them; she said she loves data. Good thing, because I do, too. I was feeling bad because I hadn't done any logs, but I ended up not needing them. We didn't really talk about famous diabetes clinic, but at one point she said, "it looks like you do really well when the settings are right." Heh.

She completely understood why I don't have different basal rates or insulin sensitivities right now - everything is changing, so it's all I can do to just keep up with that. It's difficult to gather enough steady data. She said it looks like all my settings are good, but she agreed that I could lowering my ratio to 1/13! I'm amazed, because I think the reaction of 99% of people would be to look at the current numbers, say they're great, and that I'd have lows if I took more insulin. I'm pretty sure I won't, though; my body is just weird that way.

She'd ordered a cholesterol test, but I don't do fasting so well, and I just had it done in June, so I said no. I brought in the results (looks like they never sent it over, big surprise), and finally! Someone looked at my results and had the same reaction I did. She said it was excellent. Can you believe that I needed/wanted someone to congratulate me on my cholesterol test?

My A1c was 5.3%, up from 5.1% in November. I can probably only expect it to rise as my insulin production declines. I hesitate to even disclose the number and often don't on forums, since the tendency is to compare it to a regular Type 1 number. That, or to insist I must be having lows all the time, or in the middle of the night. I'm not having lows, I promise. It's really just the insulin production and the lack of overactive hepatic glucose production. Neither of those things lasts forever.

The endo said she wished I could come in and give a motivational talk to some of her other patients. I really do wish I could, but I get quickly overwhelmed by negative attitudes, and I'm just not good at turning them around. Also, it really is a lot of work, and many people just can't do it, or wouldn't have as much success even if they did do it. Still, it was great to get a lot of validation...from a doctor! I think some of you might be hearing me on this.

Oy vey

I am giggling like a madwoman. It's really not funny, really. Heh. Ok, I have an appointment with the endo on Tuesday Wednesday. I thought it was on Tuesday, but it's on Wednesday. I opened up my pump box last week to get out the data cable and download my data. Except, it wasn't in there. The software was, the meter was, but the cable was not. What? So, I called MM to have one overnighted to me. They said it was supposed to be in the box, so they sent it for free! I got it today. I was very surprised to see that it's just a USB cable with a test-strip-looking thing on the end of it. It looks flimsier than actual test strips, even. So I plugged everything in and started installing. Somewhere in the middle, I accidentally knocked the meter off the chair. The connector broke off inside the meter *and* at the base of the cable. So I had this cable about five minutes and broke it. I called MM again and got the same guy (he must think I'm a nut) and he said he'd send me two more, free overnight shipping. But it's the last time!

I shouldn't laugh, really, but come on!

What is LADA?

Sometimes I forget I'm diabetic. I wake up in the morning and go about my business, forgetting to test my blood sugar. It's not until I'm about to eat breakfast that I remember. That fasting reading is really important to me, though. I don't mean to forget; it just happens.

This is LADA. I've only been diabetic for two years. It hasn't pervaded every aspect of my existence yet. Most of my memories are not diabetic memories. When I dream, I usually don't have diabetic dreams. Is it easier or harder this way? I don't know. Does anyone really know? Does it matter?

So what is it like to have LADA? It has its good aspects and bad aspects. Sometimes, though, it's hard for me to tell them apart.

Good or bad?

- Growing up without diabetes, you had a "normal" childhood filled with overdosing on candies, pies, cakes, cookies, and high carb foods during every celebration. You expected to carry on these traditions as an adult. You have to reject or modify big aspects of your culture, which alienates your family.

- After a lifetime of spontaneity, you find out that you're going to have to think about everything you eat for the rest of your life. You can't just drop everything and go somewhere, or eat something, or just be in the moment. Low maintenance is valued, and high maintenance is maligned, but you no longer have a choice.

- Everyone knows you can't get "juvenile diabetes" as an adult and you're (generally) not in DKA, so you must have Type 2. Your family, your friends, your doctor, your diabetes educator, and even your endocrinologist will tell you this. LADA? What? That doesn't even exist.

- After trying to connect with other Type 2s and finding out that you have very little in common with them (no insulin resistance, no lifestyle to change), you try the Type 1s. Many of them don't want you, either.

- There is no book about LADA. Explanations of the effects of insulin on Type 1s and Type 2s do not apply to you, until you stop making insulin. Insulin formulas often do not apply to you. Information widely available for "honeymooning" Type 1s is for children. You will be told what does and does not affect your bg, but get different results. You will be told you shouldn't be testing your bg, shouldn't be on insulin, given inappropriate insulin doses, and fear ever being admitted to a hospital, because you could die. You will have to work hard to find any information that is even applicable.

- Since so little is known about LADA, it takes years for you to amass a wealth of information about it. Because this information is not collected anywhere and is barely touched on by existing resources, people will often inform you that you must be wrong about it. You will try to advise other LADAs, but with the majority of people giving advice from a Type 1 perspective, they won't know whom to believe.

- You're still making insulin, years after diagnosis. While this means that you probably won't have as many severe lows and you'll have a much easier time controlling your bg with a buffer of endogenous insulin, it also separates you from other Type 1s, and sometimes the chasm is just too deep to cross.

- You can do really well on a carb counting regimen or an insulin pump, but you will repeatedly be told that this is impossible. You should really just be on Type 2 drugs until your beta cells burn out completely.

- You will finally get approved for an insulin pump, and sent to a clinic for training, where they inform you that instead of 1/14, your new insulin ratio is 1/35. When you start to run high and feel awful, you are told that these are normal numbers and that you should stop complaining. You point out that the safeguards are in place to prevent lows, and you're not having ANY, but no one will listen. The formula can't be wrong; it's been tested on hundreds of Type 1s.

- When you finally break free of the clinic and start adjusting on your own, you find that after 2.5 weeks of running high, your insulin production has declined very rapidly. Coincidence? Who knows.

- Getting diabetes as an adult means that you will be told you're "not a real Type 1" and told you can't join someone's group because of it. You don't really "know what it's like." You can't. Your good friend is a Type 1; surely they can support you, right? No, your friend is strangely distant, mutters about how you "gave diabetes to yourself" and tells you that you should have exercised more. Once the confusion about LADA is finally cleared up, they still don't think of you as "a real diabetic."

- But getting diabetes as an adult also means that you're doing all your learning as an adult. You can become very informed about your diabetes right at the beginning. You have access to excellent modern treatments.

Yes, I know not everyone has the same experience, but this is mine. I know the people who think LADA is all sunshine and roses probably aren't reading this, but I guess I felt I needed to write it anyway. Not many people are telling my story, so maybe someone should, even if I'm not the best choice.

Huh?

Well, it seems there is no end to strange diabeted-related goings on I can have in only one month, heh. This morning I woke up and tested (81). Then I went to the bathroom (trust me, this is relevant), then started the coffee and went to check my email since it takes 30 minutes for the coffee to cool off enough to drink. After 30 minutes, I bolused for breakfast, then went to the bathroom again (huh? okay). But this time, something was different! My tubing was hanging free, neatly sliced in two. What? How could this happen? I literally have no idea. It was in my pants the whole time! (Hey, I heard that giggling). I stay far away from anything in the least bit sharp; I can't even have tags in my clothes. The cut was closer to the infusion set, so I can't even come up with some weird pump-cutting-tubing scenario and anyway, it was fine 30 minutes before! So it's completely inexplicable.

Anyway, my breakfast bolus ended up on me, so what did I do? Well, I rewound the pump, changed the tubing, and reconnected it to my infusion set. Then I did a fixed prime. I did that because I know missing a little insulin isn't going to have a huge effect on me, and I can always do a correction. Trying to (needlessly) insert an infusion set before breakfast and coffee, though? I don't think so.

surprise

There's a first time for everything. That's what they say. I've just reached another first: my first scary diabetes moment.

There I was sitting on the couch, long after dinner. I noticed I was trouble focusing on the captions as I watched tv (I always have the captions on). As time went on, I started to feel, well, high. But how could I be high? My blood sugar was perfectly fine after dinner. I'd just tested at 86 an hour before. I don't *ever* have random highs. Do I?

I checked. 215. What? I wouldn't ever expect anything over 95 at this hour. I even went without basal insulin all day the day before I started pumping, and I was perfectly fine. That was only a month ago! I washed my hands and tested again. 209. I stood up and walked to the office. As I walked, I could smell the high. My meter hadn't lost its mind. I got out my Precision Xtra to see if what I was smelling was ketones. I wasn't thinking very clearly, I admit.

Sidebar here: if you have a Precision Xtra and you've never learned how to use it, do it before you need to. You should have heard what came out of my mouth trying to figure it out. After 10 minutes I realised I didn't need to figure out how to put a lancet in (it was nowhere in the instructions) because I have my own lancing device. Finally I got the giant drop of blood in there. Countdown....then .1. What the hell does that mean? Ok, that's the lowest detectable. Hooray.

I decided to change out my site, but not the reservoir or tubing because I just put it in yesterday and I can't afford to throw away that much insulin (another story). Bad site! Bad! As soon as I took it out, I could see that things were not right. It's too soon for me to tell if it's infected, but I definitely hit a blood vessel (and somehow didn't feel this when it went in), and it sure was angry.

But the high is not supposed to happen to me. I've suspended my pump for hours at a time. I've had pretty consistent blood sugars every time I haven't recently eaten since forever. I'm taking a higher dose of basal than I supposedly need, to preserve my beta cells. I'm still making insulin, right? I know to some of you this isn't much of a high, but in the universe of my diabetes, this is firmly against all the known laws. This changes everything for me. Now DKA is a part of my universe, and all the laws just shifted.

Meme time

I saw this on Fading to Gray and it looked fun.

Put your mp3 player on shuffle, and the song that comes up is the answer to the question:

What does next year have in store for me?
Ednaswap - 74 Willow

What's my love life like?
Namoli Brennet - For These Hearts

What do I say when life gets hard?
Cyndi Lauper - Time After Time

What do I think of on waking up?
The Corrs - Dreams

What song will I dance to at my wedding? (Too late!)
Tara MacLean - Silence

What do I want as a career?
Sarah McLachlan - World On Fire (uh...)

Favorite place?
Ani DiFranco - Back Back Back

What do I think of my parents?
Nine Inch Nails - Head Like A Hole (heh)

What's my porn star name?
Michael Franti - Yes I Will

Where would I go on a first date?
Midnight Star - No Parking (On the Dance Floor)

Drug of choice?
Sisters of Mercy - This Corrosion

Describe myself
Metallica - One

What is the thing I like doing most?
Shakira - No Creo

What is my state of mind like at the moment?
Poe - Another World

How will I die?
The Bobs - The Golden Road

That was kinda scary!

win an insulin pump

Attention Canadians! A chance to win an insulin pump by signing into Myspace:

GET INTO THE SPIRIT Contest with Accu-Chek!

I think the format of this contest is unfortunate what with all the phishing going around, but that's a legitimate site.

Made In America

Today I finally watched the episode of Made in America where John Ratzenberger goes to the Smiths Cozmo plant. It was really interesting to see how the pumps were made; it's more clear to me now why they cost so much. I didn't agree with everything he said, but it is TV after all. We should be happy when people at least know the difference between Type 1 and Type 2. Of course *he* would, since his son is diabetic. So I would definitely recommend it.

John Ratzenberger will actually be in Seattle tomorrow (at the University Village QFC from 5 to 7) promoting his new book and the “Ducks For Kids With Diabetes” Campaign to raise money for the Pacific Northwest Research Institute. I just found out about this about an hour ago, so it's doubtful that I would be able to go. I think what he's doing is great, but the book itself doesn't sound like something I'd really be interested in.

I've seen the campaign at QFC before but I feel like I can't contribute to diabetes research...because I have to spend so much money on my own diabetes (and other things) that I don't really have much to spare. I definitely feel bad about it. I do give when I can.

It's just always something, though. Last night my glasses broke and we've only been marginally successful in gluing the pieces back together. I cannot see without them. When I went to make an eye appointment to get new ones, I found out that the ex-company screwed up our COBRA payments and we don't actually have the vision coverage we've been paying for. So we're probably looking at $400 out of pocket that may take up to two months to recover. It seems like something like this happens every time we get ahead. I'm not really worried; it's just that it would be nice to be able to save sometime.

Well, things are progressing somewhat steadily. I am feeling better most of the time now, so that's a relief. I'm down to 1/15 and I think it's right at least some of the time. With more testing, I will see if I'm going to need a different ratio for different times a day.

Not much is happening around here with the snow. We have four wheel drive so we're pretty much okay if we need to go out, luckily. My husband got switched to the night shift, so he's taking the car and doesn't have to bother with the bus wackiness right now. I was a bit worried about taking the bus to the Intro to Judaism class, but it got cancelled. I admit to being a bit disappointed about that, but obviously no one is going to make it there, so.

"I'm an adult and I'll do what I want."

This article hit me pretty hard. At first I didn't want to talk about it, I don't know.

Do we all know someone like this? I'm coming from a different perspective, though. I may a diabetic now, but I've been in a similar position to the woman in the article. The person I am thinking of had no qualms about putting their or my life at risk so that they could feel a little more like diabetes wasn't changing anything about life for them. Unfortunately, that's just not the reality of it.

The reality is trying to force juice down someone's throat when they're fighting you and saying they won't treat it, because they refuse to keep glucose gel (or glucagon for that matter) around. The reality is realizing you're out of test strips and you can't bum one because this person doesn't even know where their meter is and probably doesn't have any strips, even though they could get them for free. The reality is recognizing lows by the way the person is driving and never being able to convince them to eat some carbs (yours, no less) until you arrive at the destination. The reality is the constant ups and downs - both bg and mood. Everything has a readymade excuse: "I was high." "I was low." Sometimes it's not even true. The reality is carrying three times as much sugar as you could ever possibly need and seeing it all disappear into the other person's mouth in the space of ten minutes because they just can't get the hang of carrying their own, even after 20 years. The reality is the ugliness that comes out of this person's mouth automatically when you tell them you've just been diagnosed with diabetes: "I guess you should have exercised more" followed later by "you test too much" and "I have no sympathy for you whatsoever." The reality is knowing that all your concern, your planning, and your rearranging of things to make it easier to manage your own diabetes is often not only not appreciated, but explicitly resented. The reality is the cold sweat that breaks out over you when someone who *never* sleeps late does, but you know how angry they're going to be if you try to check on them.

You'd think that becoming diabetic would change my mind about the whole experience, and yet it hasn't. I want to understand how someone could have such a poor relationship with their diabetes that they feel compelled to treat people that care about them like that. I want to, but I don't. Maybe if I could, I could help. Or maybe, as I've often been told, I just need to let it go. But how do you stop caring?

new year

Well, I'm doing a little better. I finally had a low (63, not so bad) and I have to say it was actually a relief! It was a carb counting problem; we went to a new restaurant. My ratio is down to 1/16 and it seems pretty darn close.

It's been snowing here for two days. People seem a bit more prepared this time. It certainly is cold out there, though!

I wasn't sure I'd have resolutions this year. I think every year I say I'm not going to do it anymore! But here they are:

• Lose the rest of the 10 lbs I gained in three (3!) weeks of taking Actos last year
  


• Learn more about Judaism - I signed up for a class
  


• Completely overhaul the website I admin for the new year
  


• Visit my aunt and grandma - just have to find a way around that chainsmoking issue
  


• Visit a foreign country - might help if I got a passport first!
  


• Look for a job - already started, haven't found anything
  


• Send out the rest of my holiday cards! - gaah
  


• Finish the Mandarin series I was taking - found a place but can't get there yet
  

well what do you know

So I'm experiencing a new feeling right now. I'm simultaneously elated and shaking with rage. Why?

Well, the endo called me just now. I told her I'd had it with the clinic and that they were never going to let me have enough insulin. I'd explained all this to her previously, except I didn't know then about that last part. Well, this time she actually seemed to get it. She was shocked that they'd told me I couldn't have more bolus insulin and that I had to be at 50-50. I thought the world had gone mad there for awhile, so it was reassuring to hear her say that I was right. I mean, I was pretty sure I was right, but after the past ten days of being treated like I'm wrong, it's nice to hear the endo say it. She said we don't need to deal with the clinic anymore and that she's happy to make the adjustments I think I need. The first thing we did is lower my insulin/carb ratio to 1/18, although it looks like that's going to be pretty conservative. She agreed that my beta cells seem to be rebelling against the added load.

Why rage? Because I talked to her about all this last week, and told her how I was at my wit's end and I couldn't take anymore, and I even started crying. But she never said anything like this then; she just kept repeating that I had to stick it out with the clinic for a few weeks. It's just that...I feel like I've been through a war and the worst part is that it was completely unnecessary! I guess I just have a problem with inappropriate, rigid rules being forced on me. I always have.

So I hope things will be getting better soon, but it is going to be really hard for me to remember this whole time.

it wasn't great while it lasted

And so it goes. There's no point in thinking about what might have been when faced with the continual reality of what is. Here is what I know: 50% basal and 50% bolus does not work for me. I am still making insulin, just way more basal than bolus. I know this is backwards - believe me, I have certainly let my pancreas know all about it. But it goes blithely on, making an imbalance of insulin. I can only take 8-9 units of basal insulin, total. I know this number is too low. And yet my bg persisted in being low when I (unintentionally) exceeded it. I know that it's not normal for someone my size and weight, still making insulin, to have an insulin-to-carb ratio of 1/14. I know that, but all the knowing in the world doesn't make it not be. I know it's not normal (and some believe, not possible) to have crushing fatigue and illness with bg over 130. That doesn't make it stop happening.

Here are the facts:
- The clinic says everyone's TDD will reduce by 25% on the pump.
- My basal is running at 40% and they want it at 50%.
- My insulin-to-carb ratio is set to 1/25 but it's pretty clear that 1/20 or lower (carbs) is right.
- My highs after meals currently are 160-210. If you think those are great, consider that on injections they were 110-120.
- I haven't had a single low on the pump, but I almost never had lows on injections and no severe lows, so this is not a net win.
- I feel I should say it again: I am not having lows. How is it dangerous to change things when I am not having any lows?
- My endo is behind the clinic 110%.

Six months ago, I went on insulin, and it was like instantly losing 50 lbs. For the first time since I could remember, I actually had energy. I could wake up and get right of bed, most days. I didn't have to weigh continued pain with the continued health of my liver or developing a tolerance or having it hurt worse when the painkiller wore off. I could go out and see people and do things, without having to rest all the time or take frequent naps. I *had* gotten used to how things were, but after having the most amazing six months of my life, how can I give that up? I can barely get out of bed anymore. My quality of life is down to about zero.

At my last meeting with my CDE, she said she could not give me any more bolus insulin because my basal would be less than 40%. She seems to believe that I'm not getting enough insulin at meals. So she increased my basal after meals. Now, this approach might "work" for someone who's not making insulin, but my beta cells don't care; they will increase or decrease insulin production when the basal rate of supplemental insulin changes so that it comes out the same. So changing the basal rate (other than making it more than 8 units - injection-equivalent, or stopping it completely) does nothing. But let's take a minute to consider a system that is so rigid that she has to give me more basal insulin to try to cover meals because there is no other choice. I thought maybe since I have so much leeway, she could increase my basal as high as possible to give me more insulin at meals, but when I worked it out, even doing that would not allow as much bolus insulin as I need and not go over 60% bolus.

After this last change, she told me to email my numbers on Friday. I did, and emailed her Sunday and Monday. Then today I called, and found out she didn't work Friday, or Sunday, or Monday. I talked to another nurse, who told me that they never allow patients to adjust their own settings, and that it usually takes five weeks to get things set right. No patient adjustment. Five. Weeks. The CDE I've been dealing with never told me this, and hedged when I asked her, repeatedly.

And so, I think, this is where the clinic and I part ways. I am the first to admit that their formulas and approach work for 99.9% of everybody. I know that, but knowing it does not make it true for me, no matter how much they or I want it to be. I've heard all the arguments about how pump therapy is so great. I think it would definitely be for me if I was allowed the insulin I need, but I'm not, and I don't think I ever will be with this place. Maybe someday I can move somewhere where everyone doesn't go through this clinic, and then I'll be able to start the pump again and have an experience more like everyone else's.

And I guess it doesn't matter if people believe me anymore, or if they say, tl;dr (but have an opinion anyway). I think this is the last thing I'm going to say about all this since this whole experience is only relevant to the .1%, which so far is me.