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Bonded by blood
Valley students take charge of their diabetes...

By Kelsey Dayton, Jackson Hole, Wyo.
December 10, 2008

Danika Comey’s fingernails are painted hot pink. Her fingertips are dotted, hardly noticeable, the marking of finger pricks needed to squeeze out a drop of blood.

She is in jeans and a T-shirt, and on her hip is a Walkman-size box, but the chords, instead of trailing to headphones, disappear under her shirt and then into her flesh.

Danika, 15, is the picture of health, athletic and a member of the high school ski team, rarely sick – except for her diabetes.

Those who know Danika know about her diabetes. For more than 10 years, she has managed her Type I diabetes, in which the pancreas produces little or no insulin, which is needed to convert sugar into energy for the body.

Danika still hates needles – they’ve always hurt – but she’s used to them now. She has become a pro at managing her disease, even discreetly testing her blood or administering a shot under the table at a restaurant. But with stress and hormones keeping her blood-sugar levels in flux, high school is still hard.

“You don’t want to be known as the girl with the machine,” Danika said. “You want to fit in.”

According to the Wyoming Department of Health, only about 0.25 percent of students in Teton County have diabetes. Of those, most have Type I, commonly known as childhood diabetes, even though it can appear in adults. With such a small percentage of the population affected, being a middle school or high school student with the disease can feel isolating.

But now there is one place where Danika can go, where everyone around the table wears packs on their hips and no one questions a beep signaling someone’s blood sugar is too high or low.

“I like your medical bracelet,” Cailin Deiter said to Danika at a fall meeting of a support group for students with diabetes.

The group started at the end of the last school year. The monthly get-together draws about six students, said Kathi Holzer, who leads the group.

The goal of offering a group was to provide a safe place, free of judgment for kids to talk openly about issues related to diabetes, said Maureen P. Molinari, a certified diabetes educator who helped found the group. Subjects range from bullying to technology to favorite foods and how they affect how a person is feeling.

The group aims to help kids continue to learn to control their diabetes and leave them feeling empowered, Molinari said.

It’s about education, Holzer said. A big part of the group is helping students learn to stand up for themselves as advocates, she said. She wants the students to learn about advocating on all levels.

Once, before Cailin, 11, moved to Jackson, she had a substitute teacher in gym class who wouldn’t let her leave when she needed to check her blood, she told the group.

“What would you do now?” her mom, Siobhan Deiter, asked. “I’d just leave and take care of myself,” Cailin said.

The others nodded. All of the kids have learned that their health is their priority, even if it means breaking rules like no eating on the bus.

Holzer knows firsthand what the students are going through. About 10 years ago, she was diagnosed with Type I diabetes.

After the relief of knowing what was wrong with her faded, the reality of living with diabetes sunk in.

“It’s not just my disease; it’s everyone in the family’s disease,” she said.

Danika’s mom, Kendall Comey, worries about her daughter getting her learner’s permit for driving. Other parents ask if Danika had to mark on her permit that she has diabetes.

The students use each other as a sounding board and find empathy.

It’s nice to be around people and be able to say, “I’m a 300 today” and have them know what that means, Danika said.

Cailin’s friends know she has diabetes and always stand up for her when kids might say, “Ewww gross,” when she is testing her blood, she said.

But only those who also have diabetes really know what it’s like to live with it.

Cailin was 8 years old when she was diagnosed. She had to go the bathroom up to three times an hour and couldn’t quench her thirst. She lost about 12 pounds in two days. She looked as though she was starving to death, her father, Dale Deiter, said.

Cailin was misdiagnosed before going back to the hospital, where she went into a diabetic coma.

At the hospital, Cailin learned to give herself shots.

“I kind of trust myself more than anyone else with needles,” she said.

Her fingers are calloused from testing her blood.

Sometimes she has to prick them up to four times to get enough to run a test.

Her family knew nothing of diabetes when she was diagnosed. They learned if Cailin managed, she could lead a normal and healthy life.

She plays soccer, hikes and skis. But any time she leaves the house, even for a bike ride around the block, she grabs a prepacked backpack she keeps handy and stocked with water, extra batteries, glucose tabs and extra lancets.

She tries to raise her blood sugar before she exercises, but she never knows exactly how the activity will affect the level. It’s always an experiment.

She’s been five miles away from the car when her blood sugar dropped too low.  When that happens, her legs get weak, she can’t see well and she becomes irritable. When it’s too high, she gets thirsty and lethargic.

“There is nothing to do but take a shot and wait for it to come down,” she said.

Danika doesn’t remember life without diabetes. She was 4 years old when she was diagnosed. She was thirsty all the time and kept eating, yet couldn’t put on weight. She was so thin her preschool teachers thought her mother wasn’t feeding her enough.

After her diagnosis, Danika, who has always hated needles, never complained.

Back home, Danika tried to go back to being a normal kid. But spontaneous adventures even around the block in the neighborhood took planning and packing of supplies.

“She was always kind of getting held up,” her mom said. “It basically took her childhood away from her. All of a sudden she couldn’t be free.”

Danika would come home from preschool, a crumbled cookie she couldn’t eat in her backpack, left over from a birthday party. In grade school, she ate lunch with the school nurse, who helped her count carbs.

When she is swimming, Danika wears a pump and every hour leaves the pool to check her blood sugar. When she goes backpacking, she must make room for her diabetes supplies.

Danika has a family friend who travels taking only a credit card and identification on the plane.

“I’ll never be able to do that,” Danika said wistfully.

Even to go to school, Danika has to make sure she is properly packed.

Fruit snacks, insulin, machine to test her blood, and extra water for classes in which she gets so thirsty she goes through multiple bottles.

Diabetes takes constant management, but even as Danika got used to the disease, she understood how serious it was.

“She, at an early age, realized she was mortal,” Kendall Comey said.

In the fourth grade, Danika’s insulin pump opened and squirted more than 100 units into her body, compared to the normal five. Even as a fourth-grader she knew what to do. She began eating and drinking juice as fast as she could. She called her parents, who ended up taking her to the emergency room.

“She knows it’s life or death, and it is,” her mom said.

Early on Danika was taught to advocate for herself. By second grade she was doing presentations for her class on diabetes.  Her mother gave her shots in public.

“I never wanted her to be ashamed of having it or think there was a reason to hide it, because there’s not,” she said.

Danika Comey’s fingernails are painted hot pink. Her fingertips are dotted, hardly noticeable, the marking of finger pricks needed to squeeze out a drop of blood.

About six times a day, Danika pricks her finger and checks her blood sugar, programming the pump with the numbers. She doesn’t spend time feeling sorry for herself or thinking about if her life were different, even on the days she has to prick her fingers  multiple times, prodding them until they ache to get the blood to pool.

“It’s never going to go away,” she said with a shrug. “I don’t really have a choice.”

Some of the needles she uses feel like slightly more than a pinch. But the one she uses when traveling – because it allows her to check her blood sugar only once every 12 hours – hurts enough that her face deepens in a frown as she twists it in.

She can feel the needle break the skin and settle inside her, she said.

Danika knows when her blood sugar is dropping. She gets desperate, with an urgent need to eat. Stress is another factor. Before a test, she gets nervous, which makes her tired as her blood sugar levels fluctuate.

Most frustrating to Danika is when people assume she has Type II diabetes, telling her if she would just exercise or lose weight she’d be fine.

There is no cure for diabetes. People with it often have shorter lives and face health complications from blindness to increased risk for heart disease.

Danika knows the health risks.

“If I don’t take care of it, I could go blind, lose limbs or have kidney failure,” she said. “But I don’t really worry about that because I think I’m doing a pretty good job of taking care of myself.”

And because she takes care of herself, sometimes, for up to an hour, Danika can forget.

“Then I’m just normal,” she said. “But then it always comes back.”



 
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