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Getting lost in the Amazon rain forest without a backpack is bad news for a person with diabetes.
Five hours into what should have been a two-hour hike, my guide was slashing his way through the lush, tropical growth with a machete. With each confused and trembling step, I could feel my blood sugar going lower. The humidity and the hypoglycemia sweats blended together and soaked my shirt through.
That was my scariest time as a person with diabetes. My disease turned a collegiate travel adventure into fear for my life. My blood glucose was somewhere around 20 mg/dl when we finally got back to camp. I blamed myself because I should have planned better. I should have taken food and water along. I should have told someone I had diabetes.
Getting Used to Diabetes
Young people getting used to diabetes can face self-recrmination and guilt in managing the disease. It can be over what kinds and amounts of foods to eat and when; anxiety over who might be watching the eating and what they might say, and anger at others-especially parents -who tell young people with diabetes how to manage their condition.
"I notice a lot of fear and nervousness," says Pat O'Connell, a nutrition diabetes educator, in reference to her younger patients and their parents at the Joslin Center for Diabetes in New Britain, Connecticut. "We say this for adults too. We have to remember that people are people first before they're people with diabetes. While we can't throw all caution to the wind, with children, we can set looser goals."
O'Connell stresses that numbers are to work with, not to label somebody as a good or bad person.
"Parents can panic when they see the numbers," she says. "I've heard parents literally yell at their kids, when it's really not their fault at all."
Dr. Kort Knudson, a veteran internist/endocrinologist in Middletown, Connecticut, agrees.
"We try to explain to parents that the range will be difficult to control during adolescence because numbers are much more volatile given mood, social and physical changes," says Knudson. "It's important to be encouraging and to think of another solution to the problem and not be discouraged if it doesn't work."
For me, it seemed that no matter how hard I tried to address all variables that would affect my blood sugars, something was almost always overlooked that would send them soaring into the 300s, or plummeting dangerously low.
College with diabetes wasn't any easier than high school. My lifestyle was as unpredictable as ever with classes, two jobs, the swim team and socializing. Every party in or out of school involved pizza, candy, soda and chips. Consequently, the rigid structure recommended in those days for controlling type 1 diabetes was impossible.
Diagnosed at 14, I learned to do all the meal planning, blood glucose testing and insulin injecting myself, with little parental input other than mom's constant reminders: "You can't have sugar" and "Did you test your blood sugar?"
Knudson says, "Today the emphasis is on timing and size of meals rather than composition. There are no rules. Only goals for control."
Giving Teenagers Control Over Their Diabetes
Knudson says it is critical to give a child or a teenager as much control as possible in managing his or her disease.
"Psychology could be the most important thing," he says. "It all hinges from that. We try to have the young people give their insulin and measure their blood sugars as early as possible, sometimes as early as 5-years old."
Knudson adds that the best way to get teenagers to cooperate is to give them goals to reach and to tell them how difficult it is going to be to reach that goal.
"They'll do things to reach goals in ways you never thought possible," he says. "So, my standard approach with teenagers is to tell them there are no rules at all. I tell them, 'Here are your goals. Any way you can accomplish them is fine. If you go out with your friends at midnight and have a large Coke and pizza, if you can find some way to keep your blood sugar controlled, that's perfectly all right.'"
Things were different for me. There were rules, and I felt guilty when I couldn't follow them.
For the first four years I stuck to a regimen of one shot per day. Testing at breakfast was a given, but anything more was simply good behavior. I was always working to keep sugars down by exercising, but my blood sugars were still all over the map. It felt defeating when the doctor suggested two daily insulin injections per day.
Little did I know that multiple daily injections-at least six shots per day-a decade later would give me the flexibility and control I wanted as a closer match to normal pancreas activity.
"One shot of insulin doesn't mimic the body's natural rhythms," Knudson says. "One shot will never mimic the body's natural control."
Variables of Controlling BGs
Controlling blood glucose levels has been like a struggle to stay on an overgrown trail, much like that explored while studying in the Amazon. It was impossible to walk the straight and rigid path of scheduled, sugar-free meals, measured portions and regular injections required for blood sugar control. Variables, including stress, puberty, exercise, peer pressure, unplanned food, and unexpected adventures came in, shrouding and blocking the path toward control.
It wasn't until I gained experience and awareness of the difference between high and low blood sugars, and started multiple daily injections of fast-acting insulin that my blood sugars finally fell within the ideal range of 60 to 140 mg/dl and my HbA1C tests fell from 18% to 9%.
And they finally reached 7% when I started using the insulin pump last July.
Living in an Age of Better Diabetes Technology
I am lucky to live in an age of technology. People with diabetes have always struggled with maintaining blood sugar levels, especially in the past when less was known about insulin therapy and the benefits of multiple daily injections.
"They really didn't know what their blood sugar was doing," recalls Knudson. "The only formula for control of any sort was to have a completely regulated diet and lifestyle. The theory was that following a rigid lifestyle was the best you could do. Then the insulin would be matched to that. If your numbers were bad, you were blamed for doing something wrong. We were blind to the idea that there were other factors, like stress, exercise, etc."
The rigid structure recommended in the early years of my diabetes failed because it didn't accommodate the sporadic tendencies of adolescence. Diabetes was presented to me 12 years ago as a disease of limitations. I learned about all the foods I couldn't eat, how to look for grams of sugar on nutrition labels and how to avoid anything with more than 4 grams of sugar per serving. I was also told to eat the meals on my plan every two hours. I was told to go out and exercise if my sugar was high, rather than taking a shot.
The diabetes of decades ago created "a really unhappy situation," Knudson says. "Back then you didn't tell friends about your diabetes. It was something you had to hide."
Family and Community Support
Today, Knudson encourages family and community support for people with diabetes. For children who are at least 8 years old there are no rules-only goals.
"With children, we're very concerned about not causing hypoglycemia, because they aren't as careful about recognizing it. They are not as aware. They're distracted by activities, and they seem to be relatively protected from the complications until adolescence. With young kids, we do accept a little bit looser criteria for control as long as we try to get the best control we can with the least amount of hypoglycemia."
In his practice, Knudson treats children by talking about their activities and schedules.
"We design the insulin to match what they need," he says. "We have a lot more flexibility today with the insulin because the needles are smaller and less painful. The insulins are easier to use and don't cause the same kinds of allergic reactions that the older ones did. Giving multiple injections of insulin throughout the day is, in many ways, the easiest approach to managing diabetes-especially for young children."
The goal Knudson has for people with diabetes is to prevent long-term complications by getting after-meal blood sugars down to 80 mg/dl and for HbA1Cs to measure 7% or less.
"The more improvements we have in medications and technology, the more we can do what the pancreas would normally do, which is match the insulin to the body's requirements rather than adjust the person's diet and lifestyle to the limitations of the medication," says Knudson. "But we always keep in mind that we're shooting for goals. We try to eliminate rules. Nowadays we work with the patient."
Psyching Out Diabetes
A year ago, it was the support from friends, my doctor, other people with diabetes and people at the American Diabetes Association that helped me run my first marathon and meet a high fund-raising goal during the six months of training. It was support from these people that got me across the finish line.
"If you had to choose one thing that's more important than anything else, maybe the psychology is the most important thing," says Knudson. "If you're not working together, it doesn't matter how much you know, it doesn't matter how much your patient knows, and it doesn't matter what technology and medications you have available."
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