November 29, 2005

And so it goes

How did your honeymoon end?

Mine’s dying off “not with a bang but a whimper,” to appropriate a phrase from an expatriate (that's an edit: sorry, Mr. Eliot) poet unable to defend himself from such abuse (because he's dead, not because he was an expatriate...)

It’s an interesting process from an observational point of view. About 3 months ago--very shortly after my last post here at the beginning of August--I noticed a weird pattern. My morning and post-breakfast numbers were fine, but the BG never finished coming down after breakfast. So at lunch the number would be about the same as the post-breakfast number or sometimes a bit higher. This despite past success with the same foods eaten at the same time, etc., so I decided it couldn’t be the effects of fat or other diabetes bugaboos.

Then the same thing started to happen after lunch.

After enough repeats of this pattern convinced me it probably wasn’t merely stress (which I had in fair amounts at the time and which can certainly affect BG), I started fasting during selected periods to test my basal rates. A tricky business: you have to be sure you start the fast with no residual carbs on board and no extra insulin on board. Then you test, test, test. If your pump (or Lantus or whatever) is giving you sufficient basal insulin, your number shouldn’t move more than 40 points during the test period.

Aha. All those fingersticks showed I was climbing throughout the day. Dr. Patronize, my endo (whom I now rather sorely miss despite his deficiencies), had advised me to watch for this type of change. It signals the end of the honeymoon, the (ahem) blissful post-dx period during which one’s pancreas kicks out enough insulin to have an impact on the BG, albeit not necessarily enough to keep one out of the hospital.

There’s not a lot out there in the diabetes literature that details how honeymoons end. I wanted to know how fast the changes would take place, whether only my basals would change or my carb ratios as well, and what kind of basals I could expect to end up with. The only specific information I could find, though, is that honeymoons end differently for everybody, and at this point no one is sure why. Some people see a drastic skyrocketing in numbers all at once, others a more gradual creeping over time. Some have to adjust basals, some mealtime insulin as well. The point everyone agrees on is that control gets harder, a lot harder, after the honeymoon because the pancreas is Just Not Helping Anymore.

My numbers suggested that I am a creeper. No 400s yet, nothing drastic: 180 when I would have previously been 110, for example. Subtle but meaningful changes. An interesting thing to be grateful for, but there you have it.

The next step was a moment of glory for Pumplandia. Thanks to Nellie, I was able to adjust my basal rates in tiny increments to correct the problem without overcompensating and causing lows. It takes about 2 hours for a basal change to take effect on the BG (all this is from Smart Pumping, a most helpful ADA book by Dr. Howard Wolpert). So I identified the time of day when the numbers started to climb, subtracted 2 hours, and boosted my basal insulin for that hour. In my case, since I was climbing over a period of hours, I made adjustments over many hours.

Then I fasted a lot and tested a lot. Again. What mainly happened is that the numbers improved but not enough. So I kept adjusting. It took a couple of weeks to get it right, and I ended up with 6 basal rates over the course of 24 hours where I’d previously had two. For some parts of the day, my rate doubled, while for others the increase was less drastic, and for still others the rate stayed the same.

A strange business ensued. After these fixes, whenever I ran high and corrected as I previously would have done with happy results, I started going low. In other words, I now needed less insulin than before to fix my highs. I experimented further to find my new correction ratio. Although I can’t be sure why this would happen, I think it’s because the higher basal rate gives me more insulin on board, so I need less to fix a high. (This doesn’t entirely make sense to me, though. A mystery.)

I was stable for the next month or so. And then it happened again: high numbers at lunchtime despite a good post-breakfast reading. This time I didn’t have to tweak quite so drastically, just a bit more morning insulin.

And then I was stable for another month. Today I am fasting because it’s started again and I need to find out why.

Thoughts:

1. Beta cells, please stop dying. I need every one of you.

2. Part of my body is killing another part of my body. I would like this to stop. I have no control over what’s happening to me.

3. Wrong. Pumping gives me the most control I could possibly have. On shots, the best I could do would be to modify my daily Lantus, which can’t come close to rivaling the precision of Nellie.

4. How many times will I go through this before I get to where I’m going and can figure out how to handle full-blown type 1? What will happen then?

5. I’m really hungry. I have to work soon and it’s very hard to work when I’m hungry.

6. I feel like a freak.

7. I’m not a freak. I’m not the first, won’t be the last.

8. In accordance with the above, I would really like to hear the honeymoon-ending stories of the O.C. Share here or link back to your blogs. Thanks, guys.

8 comments:

  1. Violet, you really struck a chord with this post-- so much so that I'm posting on our experience this morning.

    Strange, but I've noticed that, just as you write here, Joseph is also far more sensitive to corrections than before we began increasing his basals... hmmmm.

    I'll let you know if we come any closer to solving that little mystery...

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  2. Violet, what an excellent explanation. I'll blog more about this tomorrow (today I have my writing tips thing), but I will definitely share it with my parents' list today.

    I'm not sure if our son's honeymoon is over, since his total insulin needs haven't really changed. But I do notice, and have for the past 6 months or so, that the disease is much more unforgiving of errors. It used to be we could miscount or underdose him without huge concern. Now, I even have to bolus for the cough syrup he's taking today. So. There you go. I'll be interested to read the rsponses you get. Martha

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  3. Violet - this is my first time to your blog and can I say you really hit the nail on the head with this post. My daughter is going through the exact same thing - we go for about a month doing what we do on a daily basis, then I start to notice some changes. Nothing major, but enough to alert me that something is going on, and we're going to have to make the proper adjustments. You are not alone!

    Man, this disease is so frikkin' unpredictable.

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  4. My diabetes was snagged at my school physical before second grade. I was barely "sick", clocking in at only 230 mg/dl. Diagnosed at age six, I honeymooned for over five years.

    Doctors (and my mother, who may as well be a doctor) hypothesize that I honeymooned for so long because the diabetes was "caught" in it's earliest stages. And that, since it was a virus that assumedly attacked my bitty beta cells, the cells were dying slowly. Whatever the case, I don't really remember coming out of the honeymooning period. But I do realize the possible effects of honeymooning for so long. I am so sensitive to insulin and exercise. My TDD is pretty low for a 26 year old, average sized girl. Every little freaking thing affects my bloodsugar levels. Everything.

    "Brittle" is a word they used to use to describe me. The term is now since replaced by other, more medicinal sounding words like Somogyi Effect, but "brittle" works just fine for me. To me, it means it's sometimes a wild battle for homeostatis, with an aggressive aggregate of variables and an increased sentitivity to all emotional and physical states.

    Or maybe it's just plain Diabetes.

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  5. Thanks, all of you.

    I feel like I'm being waaaay too melodramatic about all this. How embarrassing, especially reading what K has contended with for years with considerable grace.

    Yet it's where I am. I'm in a new place and I'm freaked out. I'll get my equilibrium (emotionally if not sugarly) back in time, with the help of you good folks.

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  6. Hi again,

    All right, my entry on this is up. I feel kinda dumb about it, but there you go. Any input's welcome!
    Here it is.

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  7. You're definitely not being melodramatic. No way. This must be pretty confusing -- one day you work, the next, what is going on??

    I think I was lucky in that my memories of a childhood with diabetes are more of my mom taking care of me. You, diagnosed as an adult, having a decidedly trickier transition.

    And considerable grace? Kind words, but I've been all over the map, both emotionally and physiologically. If I was bold, I'd post my logbooks and you could see how truly insane some of these numbers are!

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  8. Violet-

    Your story sounds so much like mine! I am going through the same thing right now. You can read about mine on my site, www.diabetesdaily.com

    I hope that you are feeling better, and good luck!

    P.S. I'm linking you to us, if that's ok!

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