Monday, January 29, 2007

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!

Saturday, January 27, 2007

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.

Wednesday, January 24, 2007

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.

Tuesday, January 16, 2007

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.

Monday, January 15, 2007

"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?

Saturday, January 13, 2007

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

Wednesday, January 10, 2007

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.

Tuesday, January 09, 2007

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.

Wednesday, January 03, 2007

Another 3 am, another set change.