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A Life of Control
Stories of Living with Diabetes
Alan L. Graber
Anne W. Brown
Author BioAlan L. Graber is an endocrinologist; Anne W. Brown and Kathleen Wolff are certified diabetes nurse practitioners. In 1986, while in private practice, the authors organized one of the first Outpatient Diabetes Education Programs in the country recognized by the American Diabetes Association. They later worked together for many years at the Vanderbilt Eskind Diabetes Center.
Main DescriptionDiabetes happens in a life that already has a story. This book, composed of nearly forty personal narratives, based on taped interviews, about the lives of actual patients with diabetes, draws upon the collective experience of an endocrinologist and two nurse practitioners who worked together for twenty-five years.
The people who describe their experiences with diabetes range from teenagers to physicians, immigrants, athletes, pregnant women, accountants, a prisoner, and a dairy farmer. They speak of the variety of ways they handle monitoring, diet, insurance coverage, sports, and fashion. Some talk of how they manage to drive trucks for a living or, for recreation, fly airplanes or go spelunking. Many speak frankly of their anxieties and frustrations.
The authors acknowledge that both the patient and clinician have a story about their relationship, and describe the richness and tension in their interaction. Families, too, are sources of both support and conflict. These relationships are acknowledged in the organization of the book, which is divided into sections defined by the main elements of diabetes control: patient self-determination, the role of the family, the social situation, and the patient-clinician encounter.
The book provides a wealth of information about diabetes, including material on prevention, complications, and new technology, as well as a superb glossary, but it is not intended as a textbook on diabetes or as a self-care manual for patients. Rather the book provides a textured account of the health professional's view of diabetes control and the perspective of the patient whose life is complicated by diabetes.
Reviews"A Life of Control will greatly interest not only those with Type I or Type II Diabetes, but their family members, physicians, and clinicians."
Named a "Best Consumer Health Book of 2010" by Library Journal
"..if you or someone you know is struggling to find camaraderie during a particularly troubling time with their diabetes, this might be a perfect gift."
"One of the largest challenges people living with diabetes face is taking care of themselves on a day-to-day basis, which means assuming responsibility that, in many other cases, is left up to the doctor. A Life of Control depicts 40 years of diabetic patients' stories through the narration of the doctor and nurse practitioners who collected them, acknowledging the often complicated relationship between people living with diabetes and their doctors. A cleverly organized group of stories, which reveals the difficulties, both physical and emotional, that come along with diabetes, but leaves the reader feeling confident about taking control."
--Steven Edelman, MD, Founder and Director, Taking Control of Your Diabetes, Del Mar, California
"Dr. Graber and his team share a collection of stories that not only educate but motivate. As a healthcare professional with diabetes I have learned most of the really important lessons about control from my patients. These stories are very engaging and you will find this book both enlightening and inspirational."
--Virginia Valentine, certified diabetes educator; co-author of Diabetes Type 2 and What to Do (1994 & 2000) and Diabetes--The New Type 2 (2008); former member of board of directors of American Diabetes Association
"This is a unique and well written volume describing personal experiences with diabetes of those who have it, their families and their providers of medical care. It yields valuable insights that will help with the issues for everyone who has to deal with this challenging disease."
--Mayer Davidson, MD, Director of the Clinical Center of Research Excellence at Charles R. Drew University of Medicine and Science in Los Angeles, past president of the American Diabetes Association, and author of The Complete Idiot's Guide to Diabetes
"With health care reform on the horizon and the cost of managing chronic disease impacting our economy, the doctor-patient relationship is often quantified in merely economic terms. Through personal stories about living with diabetes, Graber's patients show 'control' is more than insulin, blood sugar testing, and managing one's diet, and a successful doctor-patient relationship is a lot more than what's reflected by billing procedure codes."
--Kim Emmons-Benjet, mother of a child with Type 1 diabetes and blogger for Healthcentral.com
"In these touching stories, you will hear real-life tales that are funny, sad, life-affirming, aggravating and more. Read this and realize that you are not alone."
--William H. Polonsky, PhD, CDE
At a GlanceThe varied personal stories of people living with diabetes and the experiences of their families and medical care providers
“It was a team effort. We had this play, 26-trio, where the tailback ran right behind myself, the guard, and the tight end. With the three of us, an eight-hundred-pound mass exploded into one poor defensive lineman. We just blew him up and sent him into the backfield. The play could be run on either side, but it was probably more effective on my side. I love to hit. We won because we hit hard,” boasted Jack.
I asked Jack to describe how he handled the combination of football and diabetes. He said:
“I was diagnosed in fifth grade. When I went to my pediatrician, my blood sugar was over 600 mg/dl, indicating that my pancreas had issues. Once I started taking insulin shots, I gained weight. The whole school knew I was diabetic. I was in that K-12 school since kindergarten. At first, I was the only one with diabetes, but later a girl a class below me got type 1 diabetes also. In the summer, I went to the Tennessee Camp for Diabetic Children, where I met lots of kids with diabetes. I had diabetes for four years before football.
“By the eighth grade, my height was 6’7”, and I weighed 208 pounds. Then I quit growing vertically, and I started working out in the weight room. My footwork and coordination never developed, so I concentrated on football. By my junior and senior years, I weighed about 315 pounds.
“I played both defensive and offensive tackle. I played all the time except for punts and kickoff returns. On offense, I was the strong-side tackle. I liked defense better because you played with more emotion. You just hit the guy in front of you and went for the ball. I was so much bigger than the other guy, I beat him out most of the time. Once I got by him, I had to think, “Where is the ball, is the quarterback passing, is it going to the tailback or up the middle?” It was easy. Most of the time the ball didn’t come my way, but when it did, I caused a few fumbles. I recovered a few, and I got a number of sacks.
“During practices and games, I purposely kept my blood sugar high. Coach always pushed us. With our coach, winning was just what you did. We worked hard, practiced 2 1/2 or 3 hours after school, and it was challenging at times. It was miserable, but it was good. We took care of what needed to be taken care of. Coach said I was responsible for 75 percent of the gray hairs in his head.
“The only thing I did differently from the other players was to check my blood sugar if I felt low. I had enough awareness of hypoglycemia that I could usually feel my blood sugar getting low. They never had to step in and stop me; I would be the one to say I needed to stop and check my blood sugar. The trainers knew the drill, and sometimes they would remind me to check my blood sugar. With my meter close at hand, I could just stop, take off my helmet and glove, and prick my finger. If my blood sugar was below 70 mg/dl, I’d have a little shot of Gatorade, then go back to work.
“There would always be a water bottle with some trainer’s tape on top to let me know which bottle had the Gatorade. The biggest problem? Every football player preferred Gatorade to water, and they all knew which bottle had the Gatorade. The trainers had an emergency glucagon kit in case I ever actually fell out, but I never needed the glucagon.
“If hypoglycemia had been an issue, it would have come up during two-a-days in August. We practiced twice a day when it was 95 degrees and the heat index approaching hell. That’s far more strenuous than a game would ever be. I got through two-a-days without an issue.”
When asked what he did when his blood sugar was very high, Jack replied that he would usually “run it down if I felt like it” with wind sprints.
I inquired whether he ever had to come out of a game because of suspected low blood sugar. Jack was vague in his response. “Coach never took me out, but he probably wouldn’t have noticed it in the intensity of a game. Whenever I came off the field, I would check my blood sugar. Occasionally, I’d take a whole bottle of glucose tablets or a bottle of Gatorade. That would push my blood sugar up to 300 mg/dl, but I’d rather have it 300 than 30. We had enough depth on our team that it didn’t matter if I had to stay out for a few minutes. Most guys had to come out for a breather.”
Jack recalls an episode during practice when he felt a little goofy due to low blood sugar. He was flattened and almost seriously injured by a massive block from one of his teammates. He had a mild concussion. “I was kinda in a daze that day,” he explained. “But a lot of these guys play like they’re in a daze all the time.”
Many of the Southeastern Conference and other Division I colleges approached Jack about a football scholarship. He began receiving letters of interest from them as early as his freshman year. His father kept them all resulting in a six-inch stack of letters from colleges all over the country. “They could see on game films that I was not inhibited by diabetes,” Jack said. “Every college recruiter said they had a boy with diabetes on their team and that they knew how to look after him. They completely reassured my parents that the coaches would treat the fact that I had diabetes with the utmost respect, but parents being parents, they always worry.”
They should worry. Every player hits hard in college football.
Dairy farming can be profitable, but it’s hard work: milking twice a day, no days off, calving, growing hay. In order to deal with these demands, the dairy farmer must be healthy.
Nathan and Elaine had grown up on farms within three miles of one another. They rode the same school bus together for twelve years, were childhood sweethearts, and married as soon as Elaine graduated from high school. Seven generations on each side of the family had made their living farming the fertile Kentucky fields between Nashville and Louisville. They all milked, but their main crop had usually been tobacco. “I milked a cow when I was six years old,” said Nathan. “My grandfather lived three miles back over there.” He pointed at a nearby hill. “This here was my wife’s grandfather’s land. He hand-milked and poured it into a can.”
Their farm is 117 acres of rolling green pasture. Nathan had won the award for the top milking herd in his county several times. He described his dairy farming operation:
“I kept 60 milk cows which I milked by myself twice a day and about 120 heifers for replacement or resale. I was milking so many cows, the milk truck from the dairy had to come every day, and they don’t like to do that. I went off and bought a bigger milk tank. The tank was refrigerated and the milk would keep so they could come every other day. I had registered Holsteins most of the time, but I’ve always liked the Brown Swiss cow better than anything.
“I never sat down much. I got up at 4:30 a.m. and milked three hours. I had a small dairy barn with a milking parlor where nine or ten cows could eat while they were milked. The cows entered the barn on a 12’ x 50’ concrete floor. I had to get behind each cow and push her into the parlor. I milked from the rear of the cows, not from their sides, as they were packed side by side in the parlor. I did all the labor myself.”
Nathan is especially proud of the technique of clipping the cows’ tails he had devised. The tails were so short that they didn’t get soiled with manure and were not in his way as he milked.
After the morning milking, he would cut hay or harvest crops for winter feed, then milk again at about 4:30 p.m. “My cows grazed in the summer on grass or clover, and I chopped my silage, wheat, hay. In the winter I was working and feeding all the time. It was never over for me. I had expensive cows and artificially inseminated them with the best bulls in the nation. I always kept the baby calves and bought others for replacement or resale. I didn’t want to lose a calf. If I was worried about one, I would check it at 10 p.m. before I went to bed, then again at 2 a.m., then again at 4 a.m. After a calf is about two weeks old, it can learn to drink milk from a pail. It was less expensive to buy powdered milk for the calves and sell the cow’s milk.”
While Nathan milked, Elaine kept the books and ran the business. “I can’t do math and she can,” he elaborated. They had decided that both of their children would get a college education, which their dairy farming operation supported. Their son had helped with the milking until college, but after graduation he had gotten a higher-paying corporate job in Louisville.
Nathan said he had tried raising beef cattle and couldn’t earn a nickel, but he could make dairy farming work. For fifteen years, Nathan never took a vacation. “Elaine and I might go to Nashville or to a dairy convention for a night or two, and my son would milk,” he said. When his daughter became ill, she was hospitalized at Vanderbilt for several weeks. One Friday evening, his son came home from college and milked, enabling Nathan to visit his daughter. On the day that she had surgery, Nathan’s brother and father and Elaine’s brother milked, and Nathan and Elaine had been able to stay in Nashville overnight. Nathan recounted the episode: “My brother is a city man; he left the farm when he was twenty. Elaine’s brother is a farmer, but he’s a beef farmer; he doesn’t know anything about milk cows. But my dad knew how to do it, and they got it done. I was gone only one night.”
And then, four years ago, diabetes entered Nathan’s life. He was visiting his local physician in a nearby small town for adjustment of his high blood pressure medication. “The doctor snapped his finger and said, ‘I know what’s wrong with you—it’s diabetes. Your mother has it; your sister has it; your brother has it.’ A nurse came in and drew some blood, and I was diagnosed with diabetes.”
He took pills for diabetes and felt well for a few years, but when his daughter became ill, everything began to fall apart. Elaine says it was due to stress, because she stayed with her daughter at Vanderbilt Hospital and Nathan had to handle the farm alone. His strength and energy vanished, and sometimes he let his son and father milk in the afternoon. He developed severe thirst and had copious urination day and night. He lost weight rapidly. The local physician prescribed a different pill for diabetes. When this had no effect, he prescribed two different types of pills. When they didn’t work, he prescribed a third type of pill to decrease Nathan’s blood sugar.
Even with three different types of pills, Nathan’s blood sugar remained high, and he felt progressively weak and rundown. The physician increased the dosage of the pills. It made no difference. Elaine said that Nathan was so tired he fell asleep immediately after dinner. “I had always been strong,” said Nathan, “short and stocky and strong, but now all I wanted to do was lie on the couch and sleep. I told Elaine ‘I’m sick. I can’t do it any more.’ It got so bad I had to sell my milk cows.”
The auction was held at Nathan’s farm on a blistering hot Saturday in June. Because of the heat, not as many buyers as expected showed up. The price was not what Nathan had hoped for, but all the milk cows were sold that day.
Even after selling the milk cows, he still couldn’t do more than sit on the couch. “I said that I’d just rest and try to get well,” but he didn’t feel any better. He had no income. Three months after the auction, his doctor mentioned insulin treatment for the first time.
At the time of his first visit to the Vanderbilt Diabetes Center, Nathan’s blood sugar was very high. He felt lousy from uncontrolled diabetes. It was obvious he needed insulin. He started on insulin that day and within a few weeks felt much better. He rapidly regained much of his strength and the weight he had lost.
As his new physician, my initial reaction was regret—that he had been treated so ineffectively for so long, until he had become too weak to milk his cows. Why hadn’t his local doctor prescribed insulin, or at least referred the patient to someone who could? On insulin therapy, he might have been able to continue dairy farming for many years.
Primary care physicians face many questions and barriers about starting insulin treatment for type 2 diabetes. Some physicians still believe that insulin should be used only as a last resort in patients with type 2 diabetes, after all other available therapies have been tried.1 In the setting of severely uncontrolled diabetes, with typical symptoms and weight loss, insulin therapy is the treatment of choice and should not be delayed. In many cases, a single daily bedtime injection of insulin, while continuing the pills prescribed earlier, can normalize the fasting blood sugar quickly.2 Recently published guidelines simplify and encourage the appropriate use of insulin throughout the primary care community, where 90 percent of all patients with type 2 diabetes are treated.3
Six weeks later, Nathan’s problem had a different focus. He was only fifty-two, and he wondered what he would do with the rest of his life. He knew he could return to work, but he had been a self-employed farmer all his life. He couldn’t envision working for someone else or taking a “public” job. Someone had suggested that he apply for disability. “No one in our family has ever taken government help. We just don’t believe in that,” he said. “Maybe I shouldn’t have sold the cows.”
When asked why he hadn’t hired someone to help with the milking so that he could work shorter hours and occasionally take some time off, Nathan replied, “We’ve done everything on the farm ourselves; it’s a family operation. My mom and dad helped us get our crops in, and we helped them. We’ve always done it the old-timey way. If you hire somebody, they won’t take care of your cows. They won’t watch them. You get one infected udder and it may cost you over $1,000. If you don’t get them milked out every milking and watch that milk line, they’ll get infection. If they get infection in that mammary system, that cow is ruined. You can try; you can give her penicillin or tetracycline. There are four teats on a cow, but once one of them gets infected, you’ll never get as much milk out of her. She’s good for nothing but beef. The milk company docks you for having a high somatic cell count, so you don’t get a good paycheck. Mastitis will put you out of business.” In other words, the job wouldn’t have been done as well as Nathan had always done it.
When Nathan sold his milk cows at auction, he kept 100 young heifers. He and Elaine thought that if he got well, he could eventually milk again and continue their farming operation. “He just fed them. He didn’t milk for over a year,” Elaine related. With no income for over a year, money was still going out. Feed costs, especially for corn, were expensive—so much that Nathan planted a field of corn, something he hadn’t done for ten years. There were other substantial expenses, particularly for medicine and for health insurance. The savings Nathan and Elaine had been accumulating for a new house were exhausted. He tried milking again for a month but didn’t feel well enough.
“I couldn’t get out there and push those cows,” he said. “Some of them weigh up to 1500 pounds. My dad is seventy-eight; he helped me clean up and sanitize the milkers, but he wasn’t strong enough to push them. A cow is stubborn—you have to be strong and used to heavy gates and equipment.”
It was costing more to milk than he was making. When he got a good offer, he sold his remaining cows. He learned later that one of the cows he sold broke the three-year-old Kentucky state record for annual milk production. Elaine went back to school and took a job in town as a secretary.
When I visited Nathan and Elaine two years after he had sold his milk cows, he lamented, “If I was able, I’d try to milk again. Dairy farming is good around here now, and corn and soybeans have also made money. I’d like to stay on the farm, but I can’t work like I used to.”
The economic impact of diabetes includes both the direct costs of medical care and the indirect costs to society of lost productivity and loss of tax revenues. The effects of lost productivity are even more substantial than the direct medical costs of diabetes care.