Friday, December 29, 2006

T+

Well, I started on insulin. That's good, I suppose. I'm not happy about it, though. I had to change my set at the second training today, so I did, and it hurt. I figured it was just the insulin being on it, but then when I was leaving I saw blood in the tubing. I went into the bathroom there, and you can imagine what happened. I luckily didn't get any on me, but it's the most painful hematoma I've ever had. It happened two hours ago and it still hurts. What's strange is it didn't hurt like this before I took the set out.

So the CDE talked to my endo and it seems she confirmed that my TDD should reduce by 25% and it should be 40% basal at the least. So they put me on .2/hr basal, which I foresee no problems with. But they changed my carb ratio from 1/14 to 1/35. They changed my correction factor from 1/50 to 1/100. Also, I'm not supposed to correct if I'm under 200(!!!) and I can only do normal boluses. The CDE said I had two choices: do this for at least 24 hours (or maybe even three days), or take the pump off. That's it.

I am not unreasonable. I know that they are basing this on years of experience with different people, and formulas, and the CDE isn't allowed to change it. But what I know is that my diabetes doesn't act like everyone else's. I lost my phase one and phase two insulin responses early. I don't think putting the burden back on my pancreas is the answer, even if it works. If it does work, I expect that it won't work for very long. Sometimes my pancreas will "recover" for a day or a day and a half, but then after that things get worse than they were before. I also said when I tried to do this (run high) before that I couldn't do it again because the illness and fatigue were just too much. Well, it looks like I'm doing it again. I haven't eaten yet, so I know it's not a foregone conclusion, but I just can't comprehend my insulin sensitivity changing *that much.* The CDE said I could call the doctor on call if I was having problems, but who is going to understand in a short time period why 135 is completely unacceptable for me? How I need to correct even if I'm under 200? I am not looking forward to this at all. We have a friend visiting from out of town. We were planning to go to a movie tonight, but I have decided not to go. We were planning to go shopping tomorrow, but I may be too exhausted to go. I called the endo, but she hasn't called back yet. I feel like my freedom is just gone.

4 comments:

Bernard said...

Lili

Sorry to hear about the bleeding, that really stinks and I know just how painful those can be.

I'm really torn. On the one hand the CDE you have sounds very controlling. On the other hand, it seems as if they are being very cautious. I wonder if that's because of the recent case that made the press about a pumper dying.

Can you just agree with them, and then go home and do the adjustments yourself? Or are they requiring you to come back to the office after a few days?

On a related topic, can I suggest the excellent book, Pumping Insulin by John Walsh and Ruth Roberts. If you get it, go for the latest edition. It's very informative and an easy read. I think if you finish this book, you'll know more than most CDEs about pumps.

I wish you the best of luck adjusting to the pump and the freedom that I think it ultimately brings.

In Search Of Balance said...

Wow. I didn't get any rules. They just sort of handed me a pump, showed me how to use the serter-thingy, and sent me on my way.

Have you thought about testing their way for a day or so, and then gradually sliding back into your own correction plan? The pump does behave really differently than long-acting insulin, and it's easy to crash (and crash hard) in the first few weeks, so I understand their caution. But once you're used to it, it seems like there's no reason you couldn't tailor your treatment to what you need.

Also, in terms of bleeding sites, I found that my bleeding sites and poorly functioning sites cut down dramatically by just sticking the site in without the serter. That way, I can see if it bleeds a little when sicking it in, and choose another place... also, places that hurt a lot when i touch the tip of the needle to the skin usually yield poor results.

Best of luck with this, and hang in there! In no time at all you'll be the one making the calls.

Lili said...

Bernard - thanks. I do have Pumping Insulin, and the CDE pointed out that he used the formula, too, so that didn't help my case much. We did talk about the article and she was of the same opinion that I was - that it wasn't the pump's fault.

She said that I am not allowed to adjust the settings. The choice she gave me was to do what they said or take the pump off. She does sound controlling, but only because she is not allowed to deviate from the plan, either. Even if I convinced her, she couldn't tell me to change it. I know it may only be for a couple days, but for me it's like a lifetime because I feel so awful. I have another appointment on Wednesday to review.

Beth - I do see where they're coming from, but so far I have been right. I just came back from dinner and I'm high, unfortunately. I'm not even allowed to correct since I'm still under 200. :(

I don't have an inserter - with the Sure-T's, you just pop it right in. I think in the future I will look in the mirror before inserting to see if I can see any blood vessels to watch out for. That should help somewhat.

Megan said...

I had rules when I started too, mainly because they started my basals off way too high and I was hypoing out a lot. I was also told all the don't correct under 150 (for me) and given insanely low insulin doses.I listened for about a day, then did things my way.

I also had a lot of set problems.I personally tried Cleos, Insets,Comforts, Comfort Shorts, and Contact Detaches, trying to find ones I like. I am using cleos most of the time, but still occasionally have issues. I recommend just trying a bunch of sets.

And man, we are a lot alike. I also cna have fine days bs wise, followed by awful days. And I also feared killing off the beta cells I did have.