Ever since I started the insulin workshop at UCSF last Monday, I’ve been keeping detailed logs of everything I eat, all the insulin I take, and all of my activities, in hope that some patterns will emerge that will help me refine my treatment. Before last week, I was managing diabetes well, but it was mostly by a system of guesstimation that I’d developed over the years. I knew roughly how much insulin it took to cover, say, a banana with peanut butter, and I also knew that eating omelettes and salads for lunch made things relatively easy to control. I had a vague insulin-to-carb ratio (about 1:15, but I needed far more in the morning) and I gave myself roughly one unit of correction per 50 points that I wanted to drop. It was a relatively effective system, but it was far from scientific.
The past week, however, I’ve been living my life as if I were a lab rat, eating as consistently as I can, counting carbs down to the half gram, and trying my best to isolate variables so that I can figure out what ratios actually work. My hope is that if I can figure out a slightly more scientific way of calculating insulin doses, I’ll have the freedom to eat a wider variety of foods — which will be especially useful when we’re traveling and I don’t have access to my normal diet.
It’s been an interesting week. So far, I’ve broken down in tears twice, and despite eating the exact same breakfast for the past six mornings, haven’t even figured out how to deal with that meal, let alone all the rest. I have also discovered that thinking constantly about diabetes makes you the world’s most boring person — even my husband, whose tolerance for blood-sugar-related topics is near super-human, has begun tuning me out. (I’ve begun to feel like my diabetes log book is an unwanted house guest, constantly demanding my attention.)
I’d feel somewhat better if patterns were starting to emerge, but the only pattern so far is that this is all really confusing. For example, yesterday, I woke up at eight at 103, ate my banana with peanut butter (weighed on a scale), took 3.2 units for the 31.5 grams of carb, and at 10am was only 131. By twelve noon, however, I was 160. My first question: is the problem my bolus rate, or my new low basal?
You might say basal, right? Because even with Symlin, it doesn’t usually take four hours to digest a banana on an empty stomach. If I’m 131 two hours after eating (and my post-meal goal is 130-180), my boluses would appear to be good — if not a little too high.
Fast forward to this morning. I wake up at eight and am at 114. I eat my banana and peanut butter at 8:15. I take my 3.2 units of insulin. By nine, my blood sugar is already 174 (and this is with Symlin). Now it’s 20 minutes later and it’s 138 (though probably soon to climb) — an upward/downwards spike I didn’t see yesterday (and I would have seen it, since in addition to manually checking with finger sticks, I’m on a CGM). I had relatively similar levels of activity both mornings.
Another example: two nights ago, I went to bed around 127, woke up at midnight at 106, and at 8am, was at 103. Fantastic, right? Basals must be perfect. Last night, the same insulin-to-carb ratio for dinner that had given me the lovely 127 resulted in a 290 instead. So I took a correction bolus at 10pm and went to sleep. Woke up at 2am — four hours after correction, which means it should have stopped working — at 169. Didn’t take another correction. Woke up at 8 at 114. That means last night I dropped 55 points between 2 and 8am with no corrective insulin (which suggests my basal might be too high), whereas the night before, on the same basals, I stayed steady between 2 and 8 (which suggests my basals are perfect). A message to my body: WTF?
At this point, I bet you can recognize two things: 1. my frustration and 2. the fact that this is an extremely boring subject. So I’ll wrap this up. My plan for today is to eat one tortilla (28 grams carb) for lunch with some cheese and a salad, and something equally predictable for dinner (though I do plan on going to kickboxing, which throws a wrench into things). And despite the fact that I think some of these bolus/basal rates aren’t working, I’m going to try to stick with the doctor’s recommendations so that when I go back to the office later this week, I will have consistent data to show her. But it’s hard, really hard, to be living like this — obsessed (even more than normal) with the carb counts of everything I put in my mouth, worried about the effect the slightest bit of activity will have on my experiment, and frustrated that this week — thanks to my efforts to follow my doctor’s recommendations without question — my management of diabetes is even less under my control.
Yeah, this whole series underscores that fact…insulin is no cure, and an iffy treatment.
OK, “hidden Markov model” made my day.
This is why I get so annoyed when people think that managing diabetes is so simple
NOTHING replaces a normal, working pancreas. Nothing.
Being the proud owner of an extremely successful transplanted pancreas, I can say that with certainty. How else do you explain that no matter what I eat, my blood sugar is always in a range from 85ish to 135ish and my A1Cs are always in the 5 range? There’s just no way to mimic it. And I’m with Jack – insulin’s no cure. Even a transplant’s not a cure. That’s what we desperately need.
Yeah, I don’t think you are alone in this. I deal with WTF moments all the time. It’s extrememly frustrating when you wake up at 100, eat nothing, take no insulin, and 3 hours later yoru sugar is over 300.
All this underscores is that insulin is NOT a cure, but a treatment. And a poor one a that. Case in point:
http://www.fairfoundation.org/factslinks.htm
$42/per death. <sigh>
WTF indeed. I am so with you, especially this morning. Some days I feel like I’m a black box, and there must be some reason my body is acting the way it is, but that reason is invisible to me. So I sit there and throw inputs at myself, trying to figure out what’s going on inside based on what comes out… Living life as a Hidden Markov Model is not so fun.