The Insulin Experiment: Who’s Counting Anymore?

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So, it’s 12:45 in the morning, my apartment is in a shambles (we’re about to move) and I am exhausted. How exhausted? I am sitting here staring at the “anymore” in the title and wondering if that’s really a word. Is it? Is it two words? A word at all? Whatever. I’m about to go to bed.

But I wanted to blog first, not just because it’s been a couple days, but because if I don’t write about these experiences, the frustration just keeps building up inside until the only reasonable option seems to be to burst into tears — and you know what? I’m tired of that. My pancreas doesn’t deserve this much attention. (The second option is to go to kickboxing class and punch the shit out of things — which I’ve been doing regularly as well.)

So. Here I am. Typing this blog entry in bed. I just noticed that my bedside table is a perfect indication of what my main interests in life are right now. It has on it: one glass of water. One large bottle orange-flavored glucose tablets (haven’t had to use them for a while). One blood-smeared diabetes log from my insulin workshop containing records of everything I’ve eaten, taken, felt and done for the past two weeks. One red case of glucagon. My continuous glucometer. A lancet and a bottle of test strips. And, to top it off, some bedtime reading: Michael Bliss’s classic, The Discovery of Insulin. Did I hear someone say I should get a life? (For what it’s worth, there’s a copy of Anne Lamott’s writing guide, Bird by Bird, underneath the insulin book. But I haven’t opened it in a while.) Oh, and also, mint foot cream. Because everyone needs that.

Anyway, like I said, it’s been a couple days since I’ve blogged. And I want to thank all the commenters who have left notes — it has been so, so nice to hear from people who know exactly what it feels like to eat a perfectly measured meal, take a perfectly measured insulin dose, and watch their blood sugar sky rocket. (And then wait . . . and wait . . . and wait for the “fast-acting” insulin to start doing something.) As luck would have it, that’s where I’m at now (high, that is, awaiting my Humalog), and where I’ve been since whenever it was I last wrote.

To refresh your (er, my) memory, I believe the last thing I was trying was to cut out the Symlin to see whether eliminating one variable could help me figure out the puzzle of what the hell is going on with my blood sugars these days. I tried it over the weekend, and had no success: on day one, my banana and pb breakfast (again, measured on a freaking scale) sent me to 250 despite a 10-minute aerobic bike ride. On day two, I only hit around 170, sitting on my ass. Same banana. Same insulin ratio.  I don’t think those are what a scientist would call helpful results.

I also discovered that without the Symlin, my blood sugars were going even higher than they were earlier in the week — which makes sense, given that part of the point of the Symlin is to stop the liver from dumping excess glucose into the blood (thanks, liver — I really appreciate the help). I also felt hungry after meals, and was pretty convinced that if I kept that up, I’d regain all the weight I’ve lost since starting on the Symlin. And I’m sorry, but I don’t want to do that. I want to be healthy; I have no illusions of a super-skinny future, or developing an eating disorder in addition to diabetes. But I grew up in Manhattan, god damn it, and I find it very, very difficult to accept the circumference of my thighs, no matter how promising of a soccer career they could have provided. Right now I am happy with how I look, I am happy with how I feel (about my body, not my pancreas), and I DO NOT WANT TO EAT MORE CHOCOLATE!!

So I went back on the Symlin. (I mean, hell, if you’re damned if you do and damned if you don’t, why not do what makes you feel happier in a bathing suit?)

Then I tried to stick to my experiment, measuring those stupid bananas, eating at home for lunch. I even lowered my ratios a bit more so that I’d have even larger boluses. (I’m at 1:7 or 1:8 for most meals, btw, and I feel like I need even more — how does that compare to other people? I’m 5’4 and very athletic — it seems like a lot of insulin to me.) You know what happened? A whole lot of nothing. Oh, wait, actually, I take that back. What happened was a whole lot of 250s, a whole lot of high blood sugar headaches, and a whole lot of time spent bemoaning the idea that while I look really healthy from the outside, on the inside I’m destroying my kidneys.

Ugh. Adding to the challenge was that last night my husband and I took his grandmother out for her Christmas present — dinner at the Big Sur Bakery (I worked on the cookbook and my grandmother-in-law has become our #1 fan). And I accidentally left my Symlin in my hotel room. What’s more, I’d just spent two weeks depriving myself, with only high blood sugars to show for my efforts. So when they presented me with a plate of house-made bread, I’m sorry, but I ate a piece. A big one. With butter. And you know what? I enjoyed it.

The rest of the meal, while large, wasn’t particularly carby — and I began worrying that the arbitrary 8 or so units I’d given myself might actually cause me to go too low (this was not a meal made for carb counting). I’m serious. I actually thought that. So when it came time for dessert, I had some. Not a chocolate sundae to myself, mind you, but let’s put it this way: if I were Bill Clinton, I’d have had to admit I inhaled.

If I were on my old regimen, I’d anticipate this meal might have sent me into the 200s (if I’d miscalculated the dessert) but also would have thought that with a little extra effort (and probably a little self-hate, let’s be honest), I’d be able to get my blood sugars down within a couple hours. But oh, not this time. Still worried I might go too low, I checked to find myself in the 260s. Aware it was still rising, I took a 3.8 correction bolus. Checked again an hour later. Still there. Took a correction bolus, got ready for bed. Still there. Went to bed. Woke up an hour later. And an hour after that. And again at five in the morning, stacking up correction boluses like I’d never been to an insulin workshop before. And you know what? By the time I woke up again at 8, I had only managed to get myself down to 150. That meal took something like 16 units of insulin. (I don’t know what other people’s ratios were but before I began this adventure, I would have considered 8 units for a meal to be a pretty large dose.)

Are you bored yet? I am. Let’s just say that having tasted the butterscotch ice cream cake last night, today I went cold turkey. I ate the eggy part of a quiche for breakfast (no crust), a salad for lunch, and another salad for dinner. Minimal carbs. And yet, I was in the 230s after each meal. In fact, even now I’m above 200, which is part of the reason I’m writing this post instead of falling asleep.

I AM SO FRUSTRATED!!!!

And so tomorrow, I’m trying a new experiment. Before I went to my kickboxing class this evening, I spent some time looking at a list of my old basals, a list of my new basals, and figured out a self-designed blend between the two. Slightly lower  than the original levels in the late afternoon (since I was going low at that point), and higher (than my current rates) during the day. Whereas my former basal total was about 17.55 and the one I’ve been trying was about 9, this new one is around 12.5. I don’t know if this will have any effect (so far, not much), but I feel like at this point, I just have to rely on the faith that eventually, this will get better. It has to get better. And I am also under a lot of stress right now, both from diabetes (it’s really been awful) and because my husband and I are in the process of packing up our entire lives and moving across the country. (Actually, before we settle we’re taking a few months to travel. Our first stop? Iceland. I shit you not.)

I continue to be very upset, more fearful of diabetes than I’ve been at any point since being diagnosed nine years ago. But I have to trust that it will get better. In the meantime, I’ve got a bedside table brimming with glucose tablets and a big glass of water — and a wonderful husband to give me a hug. And for that, I’m very lucky.

May your dreams be sweeter than your blood sugars. . . .

Post script: I have just identified another potential culprit: Allegra. I have really bad allergies this year, and have been taking it regularly. I always put it down for the “what drugs are you taking” question at the doctor’s office. No one’s ever said anything. And yet I just found this, thanks to google:

Other Medical Problems

The presence of other medical problems may affect the use of this medicine. Make sure you tell your doctor if you have any other medical problems, especially:

  • Diabetes mellitus (sugar diabetes)—Use of this medicine may cause an increase in blood glucose levels

I don’t think my recent hell has been entirely due to my allergy medication . . . but it definitely seems like it would be worth stopping it for a few days. WHY ARE THERE SO MANY VARIABLES?!

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larry eScott K. JohnsonJessica AppleCatherineKarmel Allison Recent comment authors
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larry e
larry e

you don’t say what fast acting insulin you are using unless it is buried in your blog.
The fast acting insulins are too concentrated for fine control.
Stop eating bananas. They are loaded with glucose.  Eat a whole grain bread that will release carbs more slowly.
Do you you a slow release glucose like Lantus for daily maintenance?  If not you should start.
 

Scott K. Johnson
Scott K. Johnson

Great post.  It can be SO FRUSTRATING when it feels like you can’t figure out what the heck is going on.  Unfortunately, I’ve totally been there, many times.
I’m sure you’ll get it figured out.  Hugs!

Jessica Apple

I was going to ask you if you’ve tried Claritin for allergies b/c that’s what Mike has been taking for the last few days.  But then he mentioned that his blood sugar has been constantly high for two days.  Maybe it’s the Claritin…
Anyway, gesundheit!

Catherine

Hi guys — thank you so much for the support and ideas. It’s amazing to wake up in the morning to a whole community of people rooting for you while you sleep. (Also, thanks for the personal info on your insulin/carb ratios — very interesting.) I’m about to go eat breakfast, I’m sneezing like crazy (no allegra), and I have hope that my adjusted basals are going to help me through breakfast. You know what they say: another day, another banana.
More soon!

Karmel Allison

This series of posts has been both familiar and touching– I’d give you a hug if you were here! One idea just to throw out there: are you sure the insulin is good? Have you switched bottles at least once during this process? Given all that’s changed with your daily routine, it seems more likely that the highs are caused by the other factors, but you might want to switch bottles at some point just to be sure. This is untested and unscientific personal folklore, but I’ve had bottles that seemed to become substantially less effective, especially after severe altitude… Read more »

Jan
Jan

Seems like you’ve got a lot of potential BG raisers going on all at the same time: stress from the impending move, stress from the diabetes workshop (all the unaccustomed weighing, measuring, poking and prodding), stress from the negative results of the workshop (!), the allegra, and probably stress from the allergies for which you’re taking the allegra. Whew!   I’ve only been diabetic for a year and a half, since I lost my pancreas to a bout of necrotizing pancreatitis, but I’ve come to a conclusion about perfect control: it’s impossible. There’s a good reason why evolution didn’t put… Read more »

Jessica Apple

Very impressive post for someone who was typing half-asleep.  Jane’s thought about Big Sur insulin resistance sounds pretty plausible to me.  But then it could be the stress of the move, Allegra…
I hope you’re not coming down with a cold, but I’ve noticed with Mike that the day before a cold sets in, his blood sugar is high despite his regular insulin + corrections.
I laughed out loud when you addressed your liver.  I often tell mine to lay off the glucagon a little when I go to sleep.

Jane Kokernak

I thought of one more thing, a while after I left the earlier comment. It does seem as if you have every variable open at once, which makes it hard to isolate and therefore nail one variable. I see a diabetes nurse who is the most awesome person on my team (and she has Type 1 herself), and she’s very strict about making only one change at a time. So, if I perceive that I’m always going high in the afternoons, I should fast in the afternoon for at least two days, track the effect of my basal rate on… Read more »

Jane Kokernak

I feel anxious reading your posts on this experiment. Evocative writing. I hope there are some endocrinologists/diabetologists out there reading this, esp. ones who attribute a person’s lack of control to lack of effort. Your effort, persistence, and problem-solving seem immense. It’s *not* you. It’s the bloody disease. You’re like a cab driver with a very demanding and fickle passenger sitting in the back seat, driving. I don’t know anything about Symlin or its effects. I have a pump and live on only basals and boluses of Humalog. However, yes, I would agree, what you’re taking seems like a lot… Read more »

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