Tuesday, September 7, 2010

Is It Just Me?

"Wilson - surely, you must also have atypical
basal insulin needs."

I've been doing what I've been doing so long, that I sometimes forget it's not "typical". 

My P.A. and I have been tweaking my basal rates for several months, and finally have things to a point where I'm not consistently running low or high anywhere; i.e. I'm at the basal rate I should be for that time of day and will mostly have in-range, predictable numbers, SWAGing notwithstanding.

It didn't occur to me that my basal insulin needs were out of the ordinary until I saw a CDE last week.  Since I haven't been to an endocrinologist for two years, I haven't had access to a CDE, either.  I've pretty much been winging it, and the numbers seem to suggest that it's been working well for me.  It's a very detailed system, and took months to figure it out, but it works.  And I'm okay with that.

The CDE, however, was not okay with that.  And now I'm wondering if I should still be okay with that, too.

This CDE knows her stuff.  It turns out that she was actually the one who trained me and worked with me on my first insulin pump at Dr. B's office (which she doesn't work at anymore).  She's very knowledgeable, and given our track record, I'm comfortable with her.  She knows what she's doing, and I mostly trust her.  (I say mostly, because when it really comes down to it - I know my body best.  I've been living with this for 24 years, and I know what will work for me specifically, and what won't, in most cases.  I reserve Veto Power.)

Here's the deal:  I have a lot of basal rate changes Monday - Friday.  Twelve different rates, to be exact - which is also the maximum amount that the Ping will let me program for one pattern.  I didn't think this was weird - I mean, they give you up to 12 because some people will use that many, right?  I have scheduled exercise twice a day, and instead of eating a snack, I have a reduced basal rate programmed in there to accommodate that exercise.

Once the CDE and I had gone through my pump settings, and she had everything written down, she sat back.  She looked at the paper she had just written all over, and said, "Wow.  Um... wow.  This is going to be challenging." 

Her thoughts were that I was working with too many variables.  That, if I could get myself down to no more than 6 rates during those weekdays, life would be easier, because adjustments could be made more easily.  The "less is more" approach.

I can see where she's coming from, and part of me can agree with that.  But, I also look at the side that says, "But this is working for me right now I don't want to mess it up!"

I will hopefully be seeing my P.A. on Thursday of this week, and I'll see what her thoughts are.  The CDE said she'd call my P.A. and talk through what she told me, so at least I don't have to go in and explain what she's talking about.

So...  I'm wondering, from my fellow pump users - how many pre-programmed basal rates do you use on a typical day?  Does anyone else go into the double digits, or is it just me?

(P.S.  You may be asking why I went to the CDE in the first place - if it isn't broke, don't fix it, right?  Well, maybe I'll have more of an explanation on that another day.  Cliffhanger!)

7 comments:

  1. I only have four basal rates, but I have wondered if I should have more. My doctor is in the process of tweaking them because he keeps reminding me that the "magic" of the pump is being able to tweak them. But I feel the same way. Every time he changes something I just want to yell "but if we change it, I don't know what's going to happen!" Keep us posted on what changes you make, I'm curious to see how this is going to affect your numbers.

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  2. I have 7 different rates right now - I think I've been as high as 9 - and those were all set with the help of my CDE.

    I can see why she said it would be challenging, but I'd also say to make sure you exercise those veto powers. You ARE the one who knows your body best. I've found that my relationship with my CDE is most effective when I make her explain the whys behind her tweaks. She's never lived through trying to figure out how to bolus for coffee (1u for caffeinated, less than that for caffeine, and it's different depending on the time - that's not SWAGing. That's working miracles), so how could she know why I might have that 11 am BG dip?

    Interested to hear how all your tweaking goes. I'm so sick to death of it, I could scream. Maybe you'll end up with some good tips!

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  3. I only have 4 basals right now, but I already recognize this isn't enough for me. I need another overnight basal and another one for late afternoon. My exercise is completely erratic right now, so I use temp basals instead of having it figured into my regular basal rates. Once I make a regular schedule for myself, I think I'll be better able to manage my basals. Right now, I'm doing okay with temp basals and an occasional snack.

    I've said it to you before, but I really enjoy repeating myself (ha!). You know your body better than anyone. You have worked very hard to get your blood sugars under good control. If you think you can handle managing your blood sugars the same way you are now when things get a little more hectic, I think you are making the right choice for yourself. However, this is also nothing wrong with experimenting a little bit too! You know what's best :o) ~C

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  4. I, too have 6 rates. I am also like Anonymous up there. My exercise isn't engraved in stone and changes from day to day and activity to activity. I rely on Temp basals to cover it. When I read your post I was actually quite envious that you could predict your exercise enough to pre-program it into your basal rates. That's awsomeness, and way to go.

    Also, everybody is going to say this... you do what's best for you, if it works there is no reason to change it. doctors or not. So the CDE says "wow that's challenging" I think maybe they need to be challenged. They can't possibly think we should all follow under 7 basal rates. That's incorrect. I think they sort us into too many stereotypical groups. I hate it when they say what we should and shouldn't do. It sounds to me you're fine right where you are and you have every right to stand up and say so.

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  5. She also told me that she's "never seen anything like this", which is another reason I wondered if I was the only one. Maybe she's sheltered. Or maybe I'm too awesome for her to handle?

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  6. I've got 7 different rates in my basal pattern. I went through a lot of tweaking with my Endo. after getting a new pump (went from Cozmo to Animas Ping).

    I've done fasting basal testing several times, and my BG seldom varies more than 10 points over 4 to 6 hours (which, to me, means that these variable rates are half the solution. The other half is the I:C ratio...which also changes throughout the day.)

    Like others have said, I also make use of temp basal rates when I know I'm going to be more (or less) active for a period of time.

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  7. I have 6 total. 2 patterns, with 3 changes each.

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