November 30, 2005

Incidents with Animegirl


I am taking Mr. Brooklyn’s daughter, 14-year-old Animegirl*, to the Metropolitan Museum of Art one Sunday. (Mr. Brooklyn's son, Gamerboy, has decided to stay home with Dad for purposes related to his namesake.)

We begin with breakfast at a neighborhood diner. There are four diners within walking distance of the apartment I share with Mr. Brooklyn and, on weekends, his kids. Four we’ve found so far, that is. I’m pretty sure there are others. One of the wonders of the neighborhood.

Animegirl is in a lively mood considering the hour. We discuss various matters teenage as we board the F train to Manhattan. She has an interesting perspective on many things.

A few minutes into the ride I’m startled to feel That Feeling.

Bad. We just ate. If I am low now, it’s probably a nasty one.

I pull out my meter and poke a fingertip as the train bumps along. Animegirl has seen this many times, but we’ve always been with her dad and brother before. Today she has a question.

“Do you have scars on your fingers from doing that?”

“Not really,” I say, showing my hands. “Well, sort of. I get little dots where the blood vessels break sometimes.” Animegirl squints at my fingers. The dots are too small for her to see at this distance.

Meanwhile, my meter has done its job. 67, not a good number for a person with several units of insulin on board.

Grrr, I think. Lousy way to start the day. Stupid diabetes. Well, whatever. I’ll just eat a zillion glucose tablets and I’ll be fine.

I reach into my purse. Immediately I know. There’s a tube-shaped void in the compartment where the tablets normally sit. They’re in your other bag. Idiot.

This has happened before--rarely--but never when I’ve had a serious low. I always carry carbs with me. Always. Well: practically always.

I am on a moving train with a hypo coming on and no food.

“Do you have any candy? Anything to eat at all?” I ask Animegirl with deliberate calm. It seems very important not to freak her out. I don’t want to ruin the day. And she might not want to go places with me if this kind of shit appears to be the result.

She has no food either. I explain that we’ll have to get off the train because my blood sugar is low and I need something to eat. She asks some questions: how does it get too low? What happens if I don’t eat? I answer in what may or may not be intelligible English sentences.

I’m not familiar with the next stop--we’re still in Brooklyn but no longer in the small section I know--but surely there’s a store nearby. This is New York. There’s one of everything near the subway. But this station turns out to be deserted, tomblike, no stores in sight. Only some warehousey structure, maybe a school, in front of us when we emerge from underground. No people at all.

I select a random direction and start walking. Feeling shakier. Within half a block I see a newsstand. Phew. I heart New York.

I choose orange juice; Animegirl gets a strawberry Hershey bar. We return to the train. I retest as it rolls away. 78. The right direction.

“You deal with it well,” Animegirl says.

I feel like I’ve won a medal. “Thanks,” I tell her.

“I don’t think I could do it.”

“Actually,” I answer, “you could. You would adapt just like I have.”

She ponders this for a moment, then nods.

For the next few hours, she periodically offers me a piece of Hershey bar. But I don’t go low again, the art museum is astounding, and we have a wonderful time. Wonderful.


Animegirl is sick this weekend. She has a lousy cold and menstrual cramps.

I offer cold remedies, Tylenol, Advil. She declines. “I never take anything when I’m sick,” she states in a lofty tone of the sort one might use to announce an ethical stance on, say, the death penalty. “I don’t believe in medicine.”

I have, as you might imagine, a few small observations to offer in response to this. But I bite my tongue. She spoke as she did because she isn’t thinking of me as a person with a chronic disease, which on the whole is very much a Good Thing. And she’s sick. And I adore her. Cut the kid some slack, I instruct myself.

But I can’t. I stew quietly about her words. She’s entitled, of course, to take care of herself (or not) as she wishes. And I can appreciate the desire to thwart our cultural tendency toward overmedication. It’s also a good thing that she’s an active thinker, something of a nonconformist, a young person busily engaged in the work of figuring out who she is. I admire and (frankly) envy her these qualities.

Flip side: To be able to scorn medicine is a luxury that only a person privileged with near-perfect health can indulge--unless one is willing to suffer serious physical decline, which, cold and cramps notwithstanding, Animegirl is not currently at risk of doing. Both her stance and the slight smugness that accompanies it are enabled by good fortune, a good fortune I once had but now lack. Another thing I envy her.

Flip flip side: What’s my role in Animegirl’s life and growth as a young human being? I’m Dad’s live-in girlfriend, not her mother or teacher or counselor. Do I help her develop empathy for the less fortunate (in this case, me)? Am I entitled to decide what empathy might mean for her or whether she needs more of it? Why? Maybe she’s fine the way she is, and I’m simply pissed off because I’m diabetic and I just turned 34 to boot. (Stupid mid-thirties with no baby in the near future. Bah.)

Flip flip flip (it’s a pyramid, you see): Does a person with a chronic illness have an obligation to raise the awareness of others? Can I just be Dad’s girlfriend, or do I also have to be Dad’s girlfriend who has diabetes? If the latter, do I have to be that person all the time or do I get a break now and then? Why should I be stuck with that burden? Or am I just grousing about the burden of being an adult in relation to a child, the burden of trying to help a younger person mature and develop wisdom? Maybe that's it; it's a very new situation for me.

The next morning, Animegirl sneezes vociferously as we walk to breakfast. Deep thinking be damned. I pounce on the opportunity.

“Sure you don’t want something for your cold?”

She shakes her head no.

“You know,” I say, “if I refused to take medicine, I’d be dead by now. Literally dead. So I take insulin.”

She pauses. And ponders. And sees my (unsubtle, ungraceful, and somewhat self-indulgent) point.

“Stick with that,” she says finally. And sniffles.

*anime: Japanese-style animated series and movies

November 29, 2005

Why Nellie?

The last chapter of Charlotte’s Web finds Wilbur in a sad state. His beloved Charlotte has died. He has protected her egg sac and watched her babies hatch, only to see them sail away on balloons of spun silk. But three tiny spiders have stayed behind in the barn to remain with him. The first is called Joy, the second Aranea. As for the third:

“How about me?” asked the third spider. “Will you just pick out a nice sensible name for me--something not too long, not too fancy, and not too dumb?”

Wilbur thought hard.

“Nellie?” he suggested.

“Fine, I like that very much,” said the third spider. “You may call me Nellie.” She daintily fastened her orb line to the next spoke of the web.

Wilbur’s heart brimmed with happiness. He felt that he should make a short speech on this very important occasion.

“Joy! Aranea! Nellie!” he began. “Welcome to the barn cellar. You have chosen a hallowed doorway from which to string your webs. I think it is only fair to tell you that I was devoted to your mother. I owe my very life to her. She was brilliant, beautiful, and loyal to the end. To you, her daughters, I pledge my friendship, forever and ever.”

“I pledge mine,” said Joy.

“I do, too,” said Aranea.

“And so do I,” said Nellie, who had just managed to catch a small gnat.

[Yeah, I realize this extended metaphor places me squarely in the role of the pig. What can I say? Diabetes can do that kind of thing to a girl.]

We interrupt this broadcast...

[Cue dramatic music. Flash obnoxious 24-hour news station logo.]

This is a special report.

[Flash logo: a wilted purple flower almost entirely smothered under a pile of white sugar]

Violet's Honeymoon: The Final Hours?

Ladies and gentlemen, when we last left Violet, she was happily scarfing oatmeal after a lengthy fast. Oatmeal is one of Violet's favorite foods. It has a low glycemic index and high fiber content. It's always been easy on her diabetes. And it makes her feel warm and squishy inside.

Violet had used approximately 10 blood glucose test strips already today, but there's no stopping this spunky patient when she gets going. Two hours after her meal, she faithfully tested again, confident that she would find herself between 120 and 160.

[Cue dramatic music: DUM DA DUM!!!]

[Close-up on BG meter with numbers reading: 346]

Three hundred forty-six! Clearly a testing error. Violet tried again.

[Cue dramatic music: DUM DA DUM DUM!!!!!]

[C/U on meter with numbers reading: 367]

Three hundred sixty-seven! What could this mean? A forgotten bolus? No, Violet's pump indicated the oatmeal bolus had gone through without trouble.

A bubble in the pump tubing? No, Violet checked for bubbles when she began her fasting test. And she'd only used a few units of insulin since then.

A bad set? No, the current set had been working fine since Saturday evening.

An old set? Not really: Violet always goes 3 full days with her sets without running high.

Old insulin? On the contrary, a brand-new bottle.

Miscounted carbs? Upon recount, Violet could not find an error.

Ladies and gentlemen, please remain calm and stay near your television. It is possible that Violet's honeymoon has taken a dramatic turn for the worse. We will continue to update you as more information becomes available.

This has been a special report on...

[Cue mournful music, show logo]

Violet's Honeymoon: The Final Hours?


Results of fasting tests:

7:15 130
8:45 152
9:45 180
10:45 161
11:45 180
12:45 163
1:45 164 (broke down and ate enormous bowl of oatmeal)


1. Why didn't I do the tests on the hour so they match the way Nellie's clock works for basal delivery? Gooberhead.

2. I seem to be scaling up between 7:15 and 9:45, then more or less leveling off.

3. On the other hand, you could look at 7:15-1:45 and observe a 34-point shift, not that much overall. I'm too anal to settle for that, though. I was at 180! 180 is not a happy number! (Of course, meters vary so much that who knows what my BG ever really is...)

4. Back to #2 then. For simplicity, let's say I'm rising between 7 and 10 a.m.

5. It takes 2 hours for a basal change to take effect. So I need to bump my basal between 5 and 8 a.m.

6. Actually, what I really need to do is repeat the whole process one more time to be sure today wasn't an aberration. But I've watched the BG drift upward for a week (though I wasn't fasting) and therefore feel pretty confident about making a small change.

7. Small changes are safest. So I'll try increasing .05 units per hour during this span. I'll tell Nellie to bump me to .60 units per hour. A new record basal rate for Violet, woo hoo!

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.


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.

November 28, 2005

How we been doin?

Hello again. I live in Brooklyn now. It’s difficult to know where to start:

The waning of the honeymoon?

The problematic kidneys-might-be-malfunctioning test that turned out to be a false alarm? (The repeat test was normal.)

The hideous first NY primary-care doc visit, endured in order to get my monthly B12 shot? (My mouth is still hanging open, and it’s been weeks since I saw this guy. Actual quotes, delivered after a 1-minute discussion of my diabetes: “You aren’t type 1; they just described it that way because you were insulin dependent at diagnosis. A common confusion. Do you really like that insulin pump? New Yorkers don’t generally use them. How many units a day does it give you? It depends on what you tell it to do? Hmm. So you really don’t mind having that in your stomach? No, you don’t need to see an endocrinologist. You can visit me three times a year and that will be fine.”)

The name of Charlotte’s successor? (Nellie.)

Every time I thought about writing here about any of the above (or any of the myriad other tiny golden diabetic moments of the last 3 months) I felt so freaking tired I wanted to cry. And fairly often did.

Sometimes it helps to write and to put my writing out into the world; sometimes it makes me feel more trapped than ever. How diabetic am I? Enough to write about it every day, every week? Every few weeks? Never again?

Well, all that sounds (a mite) darker than I actually intend. A gentler explanation for my withdrawal is simply that it’s been a preoccupying few months, pulling up roots from my old home and trying to take the first steps toward replanting them here. It’s a complex, exciting, stressful process, and I can’t say I’ve done the greatest job with regard to Things Diabetic. The self-care hasn’t been a disaster on the whole, particularly considering the honeymoon complexities, but my eating has gone to hell and I’m only now trying to start exercising a bit again. Etc. etc. We know the cycles well. I’m at the beginning of an upswing, I think/hope.

Okay. There’s my start. Meanwhile, I have a lot of blog reading to catch up on...More to come here when I seem to be feeling Just Diabetic Enough.