Diabetes Self-Management Blog

You know those questionnaires that go around on the Internet, asking you to share information about yourself with your friends? One asked where you’d like to be right now. “In the kitchen,” Liz wrote, “cooking with Jan and Carolyn.”

But the three of us will no longer have that pleasure: Liz failed to wake up Saturday morning.

We met online at insulin-pumpers.org a dozen or so years ago. Liz was a charter member of Camp Lobegon, which, basically, is a group of friends that have at least one pumper in the family. It’s a small group that hasn’t met for a couple of years: Maybe more. I began having medical problems that affected my mobility about the same time the economy tanked, so it was put on the back burner. Basically, we got together for a few days each summer, usually at a private lake with rental cabins near where I live.

It’s a family affair — we pack up the spouses and the children along with our clothes and diabetes supplies and bring ‘em along — and Liz, Carolyn, and I all had children, so we stayed in the same cabin. Another family also had young children, but they stayed in a cabin with other adults. Besides, their children were well-behaved.

Anyway, Liz, Carolyn, and I all like to cook. Since Camp Lobegon meets down a gravel road that takes off from a country road in the middle of nowhere, we prepared all of our own food, with cabins taking turns providing meals. Oh, how the e-mails flew in the weeks leading up to camp as we planned our menus. I don’t know how the other cabins coped, but the three of us performed our kitchen dance as if we had rehearsed together all of our lives.

Liz lived in a sun-filled house on top of a hill in San Francisco; one I visited countless times when I worked for a company based in Marin County. Mostly I telecommuted, but I visited the office every couple of months or so. The house has a garage, family room, and full bath on the ground floor, with the rest up a flight of steps. I would settle into the sofa bed that sagged in all the right places that was in the family room.

Knowing that I couldn’t handle the steps, Liz told me recently that she’d bring my food downstairs to me if I would visit. I wish I had. We all think we have forever, but life sometimes has other plans.

Why did she die? How? I don’t know. Her husband didn’t, either, when he called. I know that we’ve lost four Campers: Two had some serious medical problems; the other two just didn’t wake up one morning.

Was it “dead in bed” syndrome? According to several sources, about 6% of deaths in young people with diabetes are from “dead in bed” syndrome. Affected people die suddenly without an apparent cause, although nighttime hypoglycemia (low blood glucose) is suspected to be a contributing factor.

From what I’ve read, the syndrome seems to be contained to people under 40 years old. Liz, who got Type 1 diabetes when she was a preteen, would have been 51 on Thursday. I’m not sure how old Dauna (the other Camper who didn’t wake up) was, but probably 40-ish (give or take). With Dauna, it likely could have been the syndrome: The coroner’s report said she had too much insulin in her for the amount of food present.

The problem is, you can’t tell if the person died from a bout of hypoglycemia. It just doesn’t show up. A person who seems in good health goes to bed one night and doesn’t wake up in the morning. The bed covers are undisturbed. Nobody knows what happened.

A heart attack? Maybe. Many people — even those who don’t have diabetes — die when they have a heart attack during the night. On the other hand, hypoglycemia can cause cardiac arrhythmia (when your heart beats too slowly, too fast, or irregularly).

How can you prevent overnight hypoglycemia? Make sure you don’t confuse your insulins: If you inject insulin, you use both a long-acting and a short-acting insulin and you take larger doses of long-acting. Be especially careful not to mistakenly inject short-acting when you mean to give yourself long-acting.

Check frequently after exercising. Physical activity can cause your blood glucose to drop. You might need to lower your insulin dosage after exercise.

Ask your doctor about getting a continuous glucose monitor (CGM) so you can determine your overnight blood glucose patterns and adjust your insulin dosages accordingly.

Medtronic makes a pump/CGM combo called the MiniMed Paradigm Veo System that will suspend insulin delivery if your glucose falls below a certain level. It’s available in more than 50 countries. The United States is not one of them. Applause, applause for the US Food and Drug Administration (said with sarcasm).

I didn’t mean for this blog post to be a downer. I had a couple of other topics in mind and was in the midst of trying to decide which to do first when I found out about Liz. At that point, Liz was all I could think about. (Writers tend to work things out by writing about them.)

She’s still alive, if only in my heart. When I think about her, it will be about good times. Good times were all we had. I can hear her laugh as she watched her oldest daughter and me fight over the last turnip on the dinner table. I can see her look of panic when she realized we were on the 17-Mile Drive between Carmel and Monterey with the gasoline indicator on “empty” (I have a tendency not to check the gas gauge) — and her relief when we got to a gas station. I can see the smile when I switched from Israeli rap music to a San Francisco-based blues group in the car. Her concentration as she determined how to turn her infusion set to lock it in (I try one way; if that doesn’t work, I turn it over). Her drawl “like white on rice” as we observed her daughter shadowing my grandson. Alternating between laughter and serious talk in a coffee shop in San Francisco’s Noe Valley with Insulin Pumpers Executive Director Michael Robinton and Sara Smarty Pants as the rain poured down outside. I took over her kitchen one Thanksgiving when she had a broken ankle. She put my infusion sets in for me when I wanted to use my back and my husband was unavailable. She was a Type 1 who understood Type 2s.

She wanted to come to Camp Lobegon again.

How will I find the Noe Valley Bakery without her? Who will I call when I can’t remember whether to peel the turnips before tossing them with olive oil, salt, and pepper and baking them?

Most importantly, what will her daughters do without their mother? If I recall correctly, one just turned 13 and the other will soon be 17. It’s a rough time to lose your mother. All I can do is keep them in my prayers and tell them how much their mother loved them and bragged about their beauty — both inner and outer — their intelligence, and their talents. Will you please put them in your thoughts and prayers, too?

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