Real people talk about their diabetes victories
For Jerry Nairn, success is running 44 marathons; for Naomi Kingery, it's being satisfied with her body despite her disease; and for Aspen Arbuthnot, it's learning to manage diabetes and cystic fibrosis at the same time. But success can also be found in small, everyday acts, even something as seemingly minor as passing on that doughnut at the morning meeting. "In sports, you don't get successful by running the marathon the first day. You have to train up for it," says Paul Ciechanowski, MD, MPH, associate professor in the Department of Psychiatry and Behavioral Sciences at the University of Washington in Seattle. Consider that doughnut. Avoid it day after day and you may reach even bigger goals: losing 5 pounds, then 10 pounds--and gaining blood glucose control.
That's not to say you need to measure success by the numbers, by the way. Most of the people on the following pages have "good numbers"—A1C, cholesterol, weight, and the like—but few would say that this alone constitutes a victory. As Kristen Blake sees it, success "means having a full, interesting, satisfying life—while having good control of my diabetes."
Kristen Blake 
Ballet dancing—with intense rehearsals that left no time for lunch and nighttime performances that didn't allow for dinner—made managing type 1 diabetes, and in particular, avoiding dangerous lows, difficult for Kristen Blake. "At that time"—this was 1985—"we didn't have Lantus. My schedule was such that having to eat at certain times, I couldn't do it," she says of keeping her blood glucose in a healthy range. But even years later, when she began using long-acting insulin, Blake still had hypoglycemic episodes that brought the paramedics to her home on a regular basis. "My doctor would always suggest [getting a pump], but he knew it had to be my decision," she says. "I had always thought it would be the size of a paperback Gone with the Wind."
It wasn't until she closely examined a friend's pump that Blake decided to give it a try. "I was pumping within a week and a half of making the decision," she says. Now, her blood glucose levels don't tank overnight anymore. Without the pump, she says, "you get your shot, and you can't suck it out if you decide to go on a long hike. But the pump "makes it easier to adapt to the eating circumstances. I can bolus for dessert. I can change my mind. I can deal with lousy restaurant service." That flexibility is to Blake a benchmark of diabetes victory: "Having a very fulfilled and adventurous and unlimited—not limitedâ€"[life with] control is success."
Linda Weaver 
Linda Weaver had type 2 diabetes for 7 years—with an A1C between 5.5 and 5.7 percent—when the problem started. "I was craving candy," she recalls. "And I'd say, 'You're a diabetic. You can't eat this candy.' I'm not a chocolate eater, but I could have eaten one of those king-size bars. I was truly eating more sugar than regular food." Then, one night, she had a seizure. Her blood glucose had been low before she went to bed, so she had loaded up on carbs before she hit the sheets. Still, in the middle of the night, she became so severely hypoglycemic that she couldn't even manage to check her blood glucose. (Doctors later estimated her pre-seizure glucose level fell somewhere in the teens.) At the hospital—after Weaver crunched on some peanut brittle, downed a glass of orange juice, and threw back two packets of sugar—her blood glucose level was just 35. That's when doctors made a breakthrough in Weaver's treatment: Her oral medication was causing recurrent blood glucose lows, and she was compensating with sugary snacks.
Weaver counts surmounting her hypoglycemia as a major win. A year after that trip to the hospital, she is taking different meds, she's lost 63 pounds, and has joined a walking club in hopes of losing even more. More important, Weaver says she has gotten back on top of her disease. "I'm under control now."
Naomi Kingery 
Simi Valley, California
The nearest hospital was 3 hours away. By the time Naomi Kingery arrived by ambulance to the town of Coimbatore, India, she had slipped into a coma from diabetic ketoacidosis. For the next 9 days, Kingery stayed at a Bangalore, India, hospital for treatment for type 1 diabetes. It was a brief encounter there that changed her life.
"There was this diabetic that I met," she remembers. "And he was negative, and he hated his life. [At the time] I needed someone to help me. I said, 'I'm not going to be like that. I need to stay positive.' " Kingery vowed to encourage others with diabetes to see their disease as a challenge—not a curse.
After poring over various diabetes books, she knew exactly how she would do it. "I started to write the book that I wish I had when I was in the hospital," she says. She was only 12 years old. It took Kingery 3 years to chronicle the emotional ups and downs that follow diagnosis (and growing up generally). This past April, Kingery self-published the work, Sugar Free Me. Kingery hopes it can help others cope with their disease. That's also why she teaches yoga, a practice she began studying during her childhood in India. The exercise keeps her blood glucose levels in check, and Kingery hopes that the class she teaches in her California town will help others deal both physically and mentally with diabetes. "When I'm doing yoga, I'm only thinking about yoga—not the blood sugars," she says.
And yet, she adds, "If I didn't have a book and if I didn't have yoga, I would still say I have success. If I can't go to sleep and say, 'I'm OK with who I am,' then I'm not successful."
"You need to say, 'I love my body, not despite diabetes, but with diabetes.' "
Lloyd Mann 
Twin Brooks, South Dakota
For 12 years, Lloyd Mann's A1C wouldn't budge below 7 percent, despite increasing doses of his type 2 diabetes medications. Then, 2 years ago, Mann yielded to his doctor's recommendation to start insulin—even though he had an aversion to needles. But when 100 units of insulin a day couldn't bring his blood glucose down, Mann took an even bigger step. He purchased an insulin pump. "I was ready," he says. Within 2 weeks of attaching the device, Mann's average reading dropped from the 130 range to 99.
Suddenly, Mann was less hungry between meals and was able to lower his carbohydrate intake from 150 to 80 grams per day. "That helped my control a lot. And I lost 35 pounds over a year. And it's stayed off," he says. "I feel better because of the weight loss." Mann also triumphed over other aspects of his health: He reduced his cholesterol and brought his triglycerides down from between 150 and 200 to less than 100.
Willingness to modify his diabetes management is, for Mann, integral to successful control. "If your attitude is, 'I'm going to give it a try and see how it goes,' you have a chance of succeeding," he says. "But if you say, 'I'm going to do whatever it takes,' you're going to achieve success."
Jerry Nairn 
"I've been running since junior high," says Jerry Nairn, who to date has sped through 44 marathons and two ultra-marathons. Nairn had heard about other people with diabetes running long distances, and once home blood glucose meters became commonplace, he figured that stashing one in his pocket during the 26-mile course would allow him to compete. In 1998, Nairn completed his first marathon, igniting what is now a passion for racing fast and far.
Today Nairn runs between 30 and 50 miles per week. "I'm more or less always training for a race," he says. "I think in general it helps keep me healthy." Monitoring is crucial, so Nairn checks his blood glucose levels halfway through a race. He carries glucose tabs or energy gel for unexpected lows, and wears a medical alert bracelet to signify that he has type 1. While planning for a race may take extra forethought, Nairn doesn't let his disease hold him back. "It's something that I could have said, 'It's just too hard.' Instead, I've been able to figure it out," he says.
That mindset has helped Nairn achieve personal goals—like competing in the Boston Marathon—and undertake new experiences. This February, he'll embark on another journey: a 182-mile relay race through Arizona with a team of 12 other runners, all of whom have diabetes. "I had always thought that it would be neat to do something like that," Nairn says of the team he'll be heading. "There's nothing like cheering for your teammates when you're not running."
Aspen Arbuthnot 
Twenty-five years after she learned she had cystic fibrosis (CF), Aspen Arbuthnot received another diagnosis: diabetes. At first, it was too much to handle. "I was frankly in denial for quite a few years," she says. "I did the minimal that you can get away with. I had horrible control. I just did not want to deal with diabetes on top of everything else."
Cystic fibrosis–related diabetes is even more complicated than the type 1 it resembles. "With CF," she explains, "we can't digest hardly anything, so I'm on a high-calorie diet": about 5,000 calories per day, making it hard for Arbuthnot to eat the healthy, balanced meals diabetes demands. On top of that, poor diabetes control can intensify her CF symptoms. "If my blood sugars are going crazy like a roller coaster, I can feel it in my lungs," she says.
It was about 6 years after diagnosis that something clicked; Arbuthnot started counting carbohydrates, frequently testing her blood glucose, and altering her diet to include healthier foods like fruits and vegetables. While her A1C dropped from 9.3 to 8 percent, it still hovered in a too-high range. Then she started using an insulin pump. "My doctor called me up giggling one day," she recalls. Her latest A1C? Six percent.
Managing dual diseases has been an emotional challenge; that's part of why Arbuthnot reaches out to others in the same situation. She recently began working for a pediatric pulmonary group at the Children's Hospital in Denver. And on her blog, saltyandsweet.org, Arbuthnot chronicles life with CF and diabetes.
Now, her focus is on the future. "There are new treatments coming down the pike, and I want to be there," she says. From the vantage of her accomplishments, that future "is a lot clearer than it used to be."
Kendall Krug 
Kendall Krug received his type 1 diabetes diagnosis in 1981, just as the first at-home blood glucose meters were hitting the market. Now, Krug is managing his diabetes with another piece of cutting-edge gadgetry: a continuous glucose monitor. After participating in a study for a medical technology company, Krug continued using the device he had been testing. The device has changed the way he manages his diabetes, he says. "I just played racquetball for an hour and a half. Being able to know what my blood sugar is, it gives me a lot of confidence," Krug says.
The continuous monitor didn't help Krug lower his A1Cs, mainly because those levels were in check beforehand. What it did do, though, was help him understand how the foods he eats affect his blood glucose. "The biggest surprise came right after I had it. It was amazing to see the different foods and how your blood sugar goes up," he says. Maintaining level glucose to sidestep complications is the hallmark of success, says Krug, who as an optometrist sees patients with diabetic retinopathy on a regular basis. "Coming from a medical background, I'm always scared of complications. I see people every day who have vision problems from diabetes," he says. "It certainly is motivating for myself personally, and I do whatever I can." For Krug, that includes being self-disciplined, a characteristic made easier thanks to the little monitor he relies on every day.
Morris Older 
He thought it was restless leg syndrome. But at age 54, Morris Older was diagnosed with type 2 diabetes--and neuropathy. "I am a fairly educated person, but I didn't know anything about [diabetes] at all," he says. "My mother had it, but she didn't talk about it. I didn't even know enough to know how serious it could be," he says. A 4-week diabetes education course taught him the basics. It also surprised the self-proclaimed health nut. "I think probably the Aha! moment for me was [when] I met with a dietitian/diabetes educator," says Older. "We went over my diet, and I was shocked. I was somebody who thought I was eating really well."
Thanks to a new meal plan and medications, Older reduced his A1C from 12.4 to 4.8 in about 6 months. The most noticeable difference: the way he feels when exercising. Six months before diagnosis, Older had organized a 4-day group horseback ride. "Every day I'd come in after riding 15 miles, and then I'd have to set up my tent ... and I was just burned out," he says.
A year later—shortly after being diagnosed with type 2 diabetes—Older joined the same ride. "Every day ... I had great energy," he says. "The contrast was just amazing to me. And it's a contrast that extended through my life." Case in point: The neuropathy has all but disappeared. And what was the onset of the eye disease retinopathy has stopped progressing.
He now takes part in a weekly hiking group that logs 9 to 10 miles a trip. He's active in rebuilding and blazing hiking trails in the San Francisco Bay area. And he's helping others as a regular poster on the ADA message boards (diabetes.org/messageboards), an online forum that helped him connect to others dealing with the disease. "[Success is] being able to live a normal life, being able to be physically active, and doing things people my age don't normally do--like going out and doing a 23-mile hike. If I wasn't successful in managing my diabetes, I couldn't do that."
Kelsey Sterling 
When Kelsey Sterling was diagnosed with type 2 diabetes in 1998, she says, "My doctor's approach was, 'OK, no medication. Change your diet.' No information on how to do that." It was a friend who launched Sterling's weight-loss program by sharing information from a local hospital. For 9 months, Sterling stuck to a strict Atkins diet, filling up on broth-based soup and plenty of salads. "I knew that I had to reduce my blood sugar. I knew that, difficult or not, I just had to do it. It certainly wasn't pleasant," says Sterling of her no-carb meal plan. After 6 months, her A1C was under 6 percent, and weight was coming off; she plunged from a size 24 to between a size 14 and 16.
At her next doctor's visit, Sterling learned about another aspect of diabetes control: exercise. So she bought a bicycle. Then came winter. "I live in Canada, where it's gosh-darn cold. By the end of September, October, I thought 'I can't do that!'" she says. The next best thing was a stationary bike, which Sterling still rides for 2 hours every day. Being physically active has allowed Sterling to reintroduce carbohydrates to her diet, and an oral medication has made it easier for her to retain an A1C of 5.5. It sure isn't love of exercise that keeps Sterling at it. "I'm stubborn," she says. "I don't like it. Every morning when I get up I think, 'Do I have to do that?' But every day you eat, so you need to exercise. I don't see a way around it." She's similarly realistic about her meal plan. Though she misses the comfort foods that were once a staple, Sterling knows that proper meal planning is part of living well with diabetes: "You don't have to like it, but you do have to do it."
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David Schmidt 
St. Louis, Missouri
When David Schmidt was diagnosed with type 2 diabetes a year ago, he took his doctor's orders seriously. "It scared me a lot. I've always been concerned about my health. I get real fanatical about keeping things in control," he says. The then 53-year-old started taking oral medications and exercising, and after two weeks, he was down to half a pill a day. Still, Schmidt knew he needed to change his lifestyle if he wanted to control his diabetes.
"I was pretty out of shape. I was about 50 pounds over what I should be," he says. Cutting carbohydrates, watching his calorie intake, and sticking to an exercise routine helped Schmidt lose more than 20 pounds and go off medication for good. Now, Schmidt's management plan focuses on maintaining his level of success. To do so, he walks an hour a day, counts carbohydrates, and logs everything he eats on his meter's online site.
Schmidt also practices self-control—even when he'd rather forget about the disease. "I understand why people give up. I have those days where I'll say, 'This sucks.' You go out with friends and they're stuffing pizza and garlic bread down their mouths, and you're foaming at the mouth," he says. But avoiding highs is more important than indulging, he says. And as long as diet and exercise alone will keep his A1C around 5.6, Schmidt's willing to sacrifice for diabetes control. "I know my health is better in some respects. I know my heart rate is better. I know overall I'm in better health. The weight's gone. My diet's 100 percent better than it was. I kind of cut most of that [bad food] out," says Schmidt. "It's giving me more control of my life again. It makes me a little less fearful of the future."
Kelly Booth 
Kelly Booth was always cautious when it came to her feet. Her type 1 diabetes had triggered neuropathy, so when she noticed that a patch of dry skin had broken open, Booth called her doctor and immediately started treatment. Her quick response explains why, when rushed to the emergency room with sudden stomach pains and fever of 103 degrees, Booth didn't think of her foot. It was an MRI that told the story: The bone in her foot had become infected.
After a week, Booth left the hospital with antibiotics to treat the infection. But her foot didn't heal. Soon, she was diagnosed with MRSA, an antibiotic-resistant form of staph infection. "I was getting really sick, and it kept getting worse instead of better. And I was getting worried I would lose my foot," she says. When doctors told her that her bone was softening, Booth followed a friend's recommendation and made the three-hour drive to and from Pittsburgh to speak with a specialist able to treat her foot without amputation.
"I was terrified," she recalls. "He wasn't 100 percent sure what he was going to find. He said he wouldn't know until he opened my foot. That was the scariest part." In the end, the surgeon was able to save Booth's foot, but with much damage to its under-side. While Booth would be able to walk again, she had a long road ahead. She had to move to Pittsburgh while she underwent a physical recovery program and spent 5 months in a wheelchair while the wound healed. "[Not being able to exercise] was literally the first thing that went through my mind. I've always done really well on my treadmill. That's the one thing that I can do and really enjoy doing," she says.
Now, with her foot fully recovered, Booth has regained control over her blood glucose levels, which skyrocketed during the infection and her recovery. She exercises for 30 minutes twice a day on a treadmill and has lost 60 pounds. Being able to keep her foot and remain mobile is the biggest marker of victory, says Booth. "I still have my foot. A lot of people may not have it. I was still able to push myself to exercise and lose it [the weight]. I do have mobility issues, but I do get on that treadmill."
Peter Buckingham 
Raymond, New Hampshire
When Peter Buckingham was diagnosed with type 1 diabetes in 1950, the most modern conveniences were bulky glass syringes, urine testing, and sugar cubes (to treat hypoglycemia). Fifty-eight years later, Buckingham says part of the reason he's lived so long with diabetes is that medical technology became so much better as the decades passed. "Life has just gotten so much easier today with all this technology," he says. "If all this exists now, imagine what things will be like in the future."
Buckingham also says differences in the way the medical profession treats diabetes makes understanding the condition—and achieving personal control—much easier. "One big thing: it's knowing that each person is different and is unique rather than [assigning] one size for all people," he says. "That's a major difference. Your treatment is now tailored to the individual."
Despite all of the innovations in care that have revolutionized diabetes management, Buckingham's stepping stones to success-a positive attitude and daily exercise-are timeless. "One of the things people do that's unfortunate is they say, 'Oh, poor me,'" he says, citing a relative who died young after giving up on caring for his health. "If you put in the effort to take care of yourself, you can be very successful, and you don't have to dread the disease. You are controlling your own destiny."