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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Comments
  1. So very sorry for your loss, Jan. She sounds like a wonderful person and a wonderful friend.

    Posted by Deb |
  2. Very well put Jan. I too am flooded with memories of Liz and our times at Camp Lobegone. And of Dauna and everyone else we have lost. It must be time to start having camp again! Big Hug to you Jan!

    Posted by John |
  3. She is still alive in many hearts. I just wish that she was still here on earth with those that love her the greatest, her daughters and her husband. Another joy is now missing from all of our lives. Adieu sweet Liz.

    Posted by George |
  4. Sorry for your loss. You wrote so lovingly about your friend- I hope my pleasure at reading what you said offers you some additional comfort.

    Posted by Sheri |
  5. All of us who knew Liz are grieving. Her family contributed so much to the camp activities, from us sitting on the deck watching our kids fish to the great meals that our cabin managed to create time after time. We will remember Liz with fondness and will keep her husband and daughters in our prayers.

    Posted by Randall |
  6. I shared the same cabin 2 years in a row, but as the resident RN, CDE invited to be with the group.
    Liz was a sweet young woman with a beautiful family. She will be missed by many people, most especially and most painfully by her loving family.
    Liz, Andy (Spot), David, and Dauna are singing with the angels and NOT with their insulin pumps in hand. No need for additional life saving attachments anymore…they are cured by entry to Heaven.

    Posted by BarbaraB |
  7. Jan,
    What a wonderful remembrance. I got to enjoy Camp Lobegone one year and it is just as you describe it. The spoonbread and fudge were special carby treats! One piece of advice I would give in addition to the pump that cuts off insulin if a low is detected: BE CAREFUL when bolusing at bedtime. Bolus 50-75% of what you would during the day. Continuous glucose monitoring revealed that many people are most insulin sensitive, and blood sugar drops the lowest, at around 2 am. So please be careful and don’t let it happen to you, or your loved ones. If your loved one takes insulin and is restless or very sweaty at night, wake them and ask them to check their sugar! The harder it is to wake them and get them to do it, the more important!! Larry, her husband asked that in lieu of flowers, donations be made to insulin-pumpers.org, and we have a sackful of diabetes supplies to donate for those in need. Eat joyously, bolus cautiously!
    Yours, Katie, Liz’s little sister with type 1 too.

    Posted by Katie |
  8. This is a lovely tribute to Liz and a helpful message as well to all of us with diabetes or with family members with diabetes. There was another newer member of Insulin Pumpers who died of Dead in Bed a couple of years ago - Cynthia Kahn - she was only 37 and studying to be a medical educator. Thank you Katie for your comments as well. I am so sorry to all of you who have lost a sister or a friend in Liz.

    Posted by Julia |
  9. Hi Jan

    I am sorry to hear about the sudden death of Liz. My daughter, Danielle also died in her sleep from Nocturnal Hypoglycaemia, or Dead-in-Bed Syndrome! She would have been 13 years old the following day and was looking forward to her special birthday party. I found her myself and the flashbacks are awful. Every day is a living hell that I have to hide from everyone to be able to live.

    I am also Type 1 and so are a lot of my immediate family.

    I send my heartfelt wishes to the family.

    Babs (UK)

    Posted by Babs |
  10. Mama Chait,

    As always, you have written beautifully what is in your heart and mind. Camp Lobegone was some of the most fun my family and I have had on vacation. We do not usually vacation due to financial reasons and Lobegone gave us a chance to relax and really enjoy ourselves. Everyone at Lobegone was and is loved whether still with us or not. They are also remembered. Matthew was 5 years old when we started going and is now 16 almost 17. He still remembers “Wasatch Lake” with fond memories and still talks about it and all the people there occasionally. Since Sara called me I have had a really tough time dealing with the fact that we can’t all just decide to meet up again and Liz will, of course, be there. I had already placed the flower/angel order prior to hearing Larry wanted donations so please apologize for me. Liz you will truly be missed by all who knew you. Diabetes can really stink!

    Posted by Leslie |
  11. Dauna was 38 when she died. I miss her to this day. I have wonderful memories of Liz and everyone from Lobegone that I will always cherish. My heart goes out to her family. She was just too young to leave us.

    Posted by PRL |
  12. So very sorry about the passing of your friend. I am glad you did “write it out” even if it made me tear up here at work. This post is a beautiful tribute to the ones gone on before us. Just reminds us still passing through this life how very short our trip may be. We who are still here need to try to do the best we can to reach out to the ones we love, enjoy the simple things like spending time with friends and making memories for the children. Jan, you do a wonderful work here with your writing every week.
    God bless you all.

    Posted by Linda Martin |
  13. I saw Liz in February, as I do almost every year, and when I hugged her neck, I said “see ya next year.” I am so incredibly sad and shell shocked and numb, I am almost without words…any GOOD words, that is. G.D. diabetes!!! I hate it with a passion, but it brought us all together on the underground…remember Lurline…whoever she was is the reason we are all gathered together like this, even scattered across the country. I saw Lobegone rides again next summer….whaddya say???

    Posted by Sara Smarty Pants |
  14. This is a horrible tragic event. This sudden nighttime diabetes related passing is more common than we think. I have had type 1 diabetes for almost 60 years and have lost many good friends to this sudden death syndrome. Almost all of the deaths were the result of a low blood sugar event. I have made it a habit to take a high carb snack just before I go to bed to avoid the lows while I sleep. This will keep my morning blood sugar slightly elevated and I cover this with a humolog sliding scale.

    Sorry for this loss and my prayers go out to her family.

    Kenny Bernstein

    Posted by Ken Bernstein |
  15. Jan, your remembrance of Liz was very moving.

    I am an older widower who lives alone. I have posted extensively at I-P about my frustrations with Medicare refusing to recognize the life saving benefits of CGM for those of us subject to severe nocturnal hypoglycemia.

    Medicare policy refuses to cover CGM because it is PRECAUTIONARY! It may prevent some people from serious complications such as coma, seizures, cognitive impairment, and especially being found Dead in Bed.

    Unfortunately, the use of common sense is not a trait that is practiced by the bureaucrats at the FDA or Medicare who are decision makers.

    RIP Liz Davis and condolences to your family.

    Jerry Smith
    Rochester, NY

    Posted by Jerry Smith |

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