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The Diabetes Disconnect

Recently I saw a friend whom I hadn’t seen for a long time. When I pulled out my daughters’ meters and lancets to check blood sugars, she said “I didn’t think you still had to do that.”

This is not the first time I’ve heard someone say this. People seem to interpret the advent of continuous glucose monitoring systems (CGMS) as the end of fingersticks. Not only were we on a break from the CGMS, but the CGMSs can lead to more fingersticks due to the alarms for low or high numbers and the need to confirm the readings, as well as the need for calibration with fingersticks.

I think there is a big disconnect as to what people think it’s like to have Type 1 diabetes and what it actually is like. Some of that confusion is due to the muddling of throwing Type 2 diabetes into the same pot, like when I get asked if my children are overweight. And some is probably due to confusing headlines, as in Cure for Type 1 Discovered (…it’s in mice) or New Drug for Diabetes (…it’s for Type 2).

Also people are not aware of all the variables that come into play to control blood sugars. I think people think you take your medicine and you get a steady blood glucose of 120, when in fact you have to guess what the dose of your medicine is based on your guess of what the carbs in the food is based on what your guess of the portion of food eaten is, plus take into account your guess of the amount of fat and protein in the food, and whether you just exercised or if you’re about to exercise, or whether you’re going to sleep, or if you’re going to be somewhere difficult to treat a low (such as a child on a school bus); and don’t forget to pray that your pump infusion set is working and that your insulin didn’t fry in the heat. Now push go on your pump or stab your arm with a needle and, voilà, you’re done!

There is one place where there is no disconnect in the world of diabetes and that is at the Children With Diabetes Friends For Life conference in Orlando, which begins on Wednesday July 10th. There everyone gets it, and no one thinks you’re texting while someone is talking to you when you are actually giving your daughter life-saving medicine. And when people see you look up in a distracted manner instead of replying to their questions, they know you are just doing math in your head, plus the complex analysis of variables and prayer as listed above, and will just wait patiently. At Friends For Life, no one will think your daughter can’t go on a playdate because she has diabetes. Here the friends are real, and the conference is one big playdate that makes up for all the playdates and sleepovers that your daughter isn’t included in. There my daughters will wear their pumps and put on the CGMSs and wear them proudly and no one will point and say ‘what’s that?’.

And as if this week isn’t exciting enough, Monday July 8th to Wednesday July 10th is the JDRF Children’s Congress. 160 children from all over country will travel to Washington, DC, to meet with their representatives and explain what it really is like to have Type 1 diabetes. These young diabetes advocates will have one goal: to get the Special Diabetes Program renewed this year by congress so Type 1 medical research can continue. The Special Diabetes Program provides for 110 million dollars in funding and you can learn about it here or become an advocate yourself here. Have a great week!

 

 

 

 

 

 

1 comment to The Diabetes Disconnect

  • Guessing is right! Everything is a somewhat calculated “guesstimation”. I’ve tried to explain this to a few nurses and dieticians. Some of them really don’t understand.
    We’ve moved to more natural foods and cooking, so there are no carbs conveniently printed on packages. So we’re even guessing on the cooking ingredients.
    It’s working fairly well for us now, but it’s a ton of work and a lot of people don’t understand. 7 months ago, I was one of those people, when our 3 year old was diagnosed. It’s nice to see others experiences and to know we’re not alone. Thanks for sharing!!!

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