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.


Bernard said...


Do you have an alternate clinic or team you could work with?

These folks don't sound as if they're listening to you a great deal.

What would happen if you were to start changing the basal and bolus rates on your own? Would they arrest you? Take away your pump? I don't believe they can actually do anything to stop you using it.

I really think you'd benefit from finding an alternate set of medical folks if you can.

I hope it starts improving for you soon.

In Search Of Balance said...

I'm so sorry to hear about how frustrating that all is! I agree with what Bernard says, though of course I'm sure you've worked on these things already.

Best of luck in finding something that works for you, and best of luck in finding the kind of care you need and deserve.

Scott K. Johnson said...

I agree - how very frustrating.

You know you best!

Lili said...

Bernard - I found out about one other place that does training in the whole area, and I was told they work very closely with the clinic. It was also quite far away and very difficult to get to (Seattle traffic is bad). The clinic told me to absolutely not change my settings on my own. I took them seriously because they are the ones who called in my precription to MM.

Beth - Thank you.

Scott - I agree, heh. I was starting to think the world had gone mad there for awhile.