Living with and managing type 1 diabetes
November is National Diabetes Awareness Month, and with over 8 percent of the population living with diabetes (according to the American Diabetes Association), it makes sense to stress the education of this disease. And this year, Illinois will amp up its awareness by making November 14 Illinois Diabetes Day.
Diabetes is an incurable disease marked by high levels of sugar in the blood. Type 1 diabetes (previously called juvenile-onset diabetes) can occur at any age, but it is most often diagnosed in children and young adults, according to the Centers for Disease Control. With this type of diabetes, the body makes little or no insulin; therefore daily injections of insulin are needed.
Type 1 and type 2 diabetes are both currently on the rise, with 2.5 million people living with type 1 and 25.8 million people living with type 2. There are ways to prevent type 2 from occurring, but there is no way to prevent type 1, according to the CDC.
“When you have diabetes, you are constantly managing the disease,” says Dr. Louis Philipson, MD, PhD, and director of University Chicago’s Kovler Diabetes Center. “Managing type 1 diabetes is getting easier; the technology is helping dramatically—but it’s still a full-time job.”
Some of the newest technologies include a continuous glucose monitor (CGM), which gives the user a glucose reading every five minutes; specially programmed software allowing patients to track and analyze trends; and smaller and smaller insulin pumps.
Diagnosed at 10
Kara Speer, now 32, was 10 years old when she began seeing the signs of type 1 diabetes—lethargy, thirst and rapid weight loss (about eight pounds in two weeks). Her mother was quick to take her to the pediatrician, who sent her to the endocrinologist, whereupon she was checked into the hospital—all in one day.
“I remember trying to understand how my life would change,” Speer says. “I remember the hospital feeding me wax beans, and I remember asking my mom if I’d have to eat these the rest of my life.”
Type 1 diabetes did change Speer’s life—once diagnosed, she had to take daily insulin injections, painful finger sticks and glucose checks before every meal—but her parents helped and supported her throughout the transition. In high school, she started becoming more independent in her care. “I think having diabetes made me who I am—it certainly made me have to be responsible at a younger age than most,” Speer says.
And she definitely is. Every day for the past 22 years, Speer has consistently monitored her blood glucose and planned each meal, counted the carbohydrates and injected herself with insulin. “I have stayed on track,” Speer says. She doesn’t consider it difficult; it’s just her life. “The key is—everything in moderation,” she says. “I don’t want to say there’s a diabetes diet—I’m not restricted—it’s just a healthier way to eat.”
Currently, she take two kinds of insulin every day, Lantis at 7 a.m. and 4 p.m. and Humalog with every meal.
Speer says the advances over the years have made her diabetes easier to manage. She uses a continuous glucose monitor. A needle-like sensor is placed under her abdominal skin and measures glucose in tissue fluid. The wireless sensor transmits data every five minutes to a monitor so that she can simply check her blood sugar before every meal and throughout the day.
“I make daily spreadsheets of each of my insulin levels, meals and physical activity,” Speer says. Her monitor includes computer software that tracks and analyzes trends. With the combination of her own spreadsheet and the software’s data, she can email her doctor her spreadsheets before a visit, helping to decode any adjustments she should make to her treatment.
Diagnosed at 44
Mitch Canoff, now 70, was diagnosed with type 1 diabetes when he was 44. He wasn’t shocked about the diagnosis—his younger brother had type 1, but his grandfather, father and uncle were type 2.
Canoff grew up watching his brother struggle with it. “He was diagnosed when he was 8 years old, and it was never controlled—he was a rock ’n’ roll musician who was always on the road, and he didn’t like the restrictions,” Canoff says. Unlike Speer, it was difficult for Canoff’s brother to control his diabetes.
“Watching that struggle and watching him literally die [of renal failure] made me want to take care of myself,” Canoff says. “I didn’t want to hurt myself by my own hand.”
Being diagnosed midlife was a drastic adjustment for him. “I had a good lifestyle when I was diagnosed, but it became a more healthy lifestyle after I was diagnosed,” he says. “And I did everything to mitigate the potential effects of diabetes with diet and exercise.” He immediately had to monitor his blood sugar, everything he ate and how much of it. “I could not go to a buffet and eat all I wanted.”
Nowadays, Canoff is up at 4:15 every morning, checks his blood sugar with a glucometer that gives a reading in a matter of seconds, which “sure beats the days of [urinating] on a stick,” he says; something he had to do when first diagnosed in order to get a reading. He’s in the pool, swimming laps, by 4:30. He checks his glucose levels again before breakfast and takes three shots of insulin throughout the day. It’s a constant monitoring game, but he’s learned how to keep it under control.
Because of an improvement in technology and the dedicated efforts and understandings of the disease, type 1 diabetes can be managed whether you’re diagnosed at the age of 10 or 44.
Morgan Lord is a writer, teacher, improviser and mother. She is currently a professor at the University of Illinois Chicago.
