A Life of Control

Kathleen Wolff, Anne W. Brown, Alan L. Graber

Description

Diabetes 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.

Sujets

• Médecine
• Spécialités médicales
• Santé et bien-être
• Santé du quotidien
• Medical
• Metabolism
• Health
• Endocrinology

Informations

• Publié par: Vanderbilt University Press
• Date de parution: 01 novembre 2010
• Nombre de lectures: 0
• EAN13: 9780826517340
• Langue: English

Extrait

A Life of Control
Stories of Living with Diabetes
Alan L. Graber, MD
Anne W. Brown, RN, MSN
Kathleen Wolff, RN, MSN
Foreword by Steven G. Gabbe, MD
Vanderbilt University Press NASHVILLE
© 2010 by Alan L. Graber, Anne W. Brown, and Kathleen Wolff Nashville, Tennessee 37235 All rights reserved First printing 2010 Second printing 2011
This book is printed on acid-free paper made from 30% post-consumer recycled content. Manufactured in the United States of America
 
Library of Congress Cataloging-in-Publication Data
Graber, Alan L. (Alan Lee), 1935– A life of control : stories of living with diabetes / Alan L. Graber, Anne W. Brown, Kathleen Wolff; foreword by Steven G. Gabbe p. cm. Includes bibliographical references and index. ISBN 978-0-8265-1732-6 (cloth : alk. paper) ISBN 978-0-8265-1733-3 (pbk. : alk. paper) 1. Diabetes—Popular works. 2. Diabetics— Family relationships. 3. Self-care, Health. I. Brown, Anne W., 1952– . II. Wolff, Kathleen, 1953–. III. Title. RC660.4.G73 2010 616.4'62—dc22 2009049239
ISBN 978-0-8265-1734-0 (electronic)
Contents
Foreword by Steven G. Gabbe, MD
Preface
Part I   The Patient in Control
1  To Hell with Diabetes
2  I Threw Away the Sugar Bowl
3  Running for My Life
4  A High Price for Weight Loss
5  I Refuse to View Myself as Sick
6  E-mails from Angela
7  A Difficult Decision
8  A Life without Control
9  We Control What We Can
10  The Cadillac of Disabilities
Part II  Control of Diabetes Is a Family Affair
11  A Family Affair
12  This Invisible Counterpart
13  Who’s in Control?
14  God, Do Not Let Me Cry
15  Every Moment of Every Day
16  It’s Not About the Mom, It’s About the Baby
17  I Need to Hear His Voice
18  Like Having a Partner
Part III The Social Context of Control
19  It’s a Bet
20  Blown Away
21  Warrior Mode
22  On the Road and In the Air
23  A Better Life?
24   Semper Fi at the Dialysis Center
25  Jocks Face Hypoglycemia
26  School Fashion
Part IV Role of the Clinician–Patient Relationship in the Control of Diabetes
27  A Fairly Typical Situation
28  Non-intensive Care for Diabetes
29  Driving Under the Influence . . . of Too Much Insulin
30  I Had to Sell My Milk Cows
31  If Shoes Could Talk
32  Everything Is Not Always Due to Diabetes
33  Playing the Numbers
34  The Doctor Was Hoodwinked
35  A Glimpse of Longevity
36  Different Paths to the Same Destination
Conclusion: Prevention—the Best Method of Control
Acknowledgments
Notes
Glossary
Internet Resources for Patients with Diabetes
Reader’s Guide to Topics
Index
Foreword
I diagnosed myself to have diabetes mellitus more than four decades ago when I was a medical student. Since then, I have lived every day with diabetes. There haven’t been any holidays, three-day weekends, or vacations without diabetes. It hasn’t been easy. Yet, with very few exceptions, it has not limited my life in any significant way.
As with any long journey, there have been periods when I thought I was walking up the steepest hill imaginable, periods of smooth sailing, and several detours. A map lets us know where we started, where we are going, and how we can get there. Here are some of the important lessons that have helped me chart my course on my long journey with diabetes mellitus.
First, diabetes is an important part of my life, but it is not me, and it is not my life. I haven’t let control of my blood glucose control me. To put it simply, I am more than a blood sugar! As a medical student, I was given the appropriate advice that a career in pathology or radiology might be more compatible with the regular lifestyle that would be best for someone with diabetes. Instead, I chose to go into the subspecialty of high-risk obstetrics or maternal-fetal medicine. I could not have chosen a more demanding field, given its long and irregular hours. Yet, it was the field I was most passionate about, and its patients the ones I most wanted to help, and so I followed my heart.
I have never regretted that decision. I decided to pursue a career in academic medicine that would enable me not only to care for patients but to teach others and conduct research. It has been highly rewarding. I am now privileged to serve as the Senior Vice President for Health Sciences and Chief Executive Officer of the Ohio State University Medical Center, and I still have the opportunity to help others understand what I have learned about diabetes mellitus. Along the way, I have run two marathons and many half-marathons, and with my wife, Dr. Patricia Temple Gabbe, raised four children.
Second, living with diabetes mellitus requires a team effort. It begins with your family, and I could not have done this without the support of my wife and children. Living with diabetes day-to-day also depends on a team of skilled professionals, including physicians, nutritionists, nurse educators, social workers, and pharmacists.
Along the way, I have benefited so much from the care and guidance I have received from my doctors. Dr. Priscilla White of the Joslin Clinic not only taught me how to live with diabetes, but she inspired me to follow in her footsteps, providing care for pregnant women with diabetes and conducting basic and clinical research in this field. At the University of Southern California, Dr. Jorge Mestman told me, “Steve, don’t think of diabetes as a disease. Think of it as a condition that you live with. I bet that if you follow your diet, get regular medical care, exercise, and don’t smoke, you will be far healthier than most of your friends.” That simple message—diabetes as a condition and not a disease—has stayed with me for more than thirty years, and Dr. Mestman was right! At the University of Washington, Dr. Irl Hirsch convinced me that I should try an insulin pump. While I was hesitant at first, I am so appreciative that he recommended this therapy, as it has given me greater flexibility in living with diabetes. At Ohio State, Dr. Sam Cataland has helped me deal with the challenges of exercising and avoiding hypoglycemia.
During the past five years, my colleagues and I have conducted research studies to examine burnout in academic leaders. Risk for burnout can be related to three important factors: demand, control, and support. Living each day with diabetes is certainly demanding, and there are times when, as a patient, you feel that no matter what you do, you have lost control. It is for this reason that support is so important—support from your family, from your friends, and from your health care team.
Third, I have learned so much from my patients over the years. Pregnant women with diabetes are incredibly motivated to do whatever they can to have healthy babies. I have been inspired by their commitment, and it has helped me on my journey with diabetes.
Finally, I have always been an optimist. I recently spoke to our medical students about my life with diabetes, and I called my talk “A Half Full Glass of Lemonade.” Because I work at one of the leading academic medical centers in the country, and because each day I hear about the advances in research and patient care that are being made, I am more optimistic now than I have ever been. When I began my long journey with diabetes, there were few insulins available, and we used glass syringes and needles that had to be sharpened. So much has changed! We have a variety of new insulin analogues that help us live more flexible lives, new oral medications for individuals with type 2 diabetes mellitus, portable blood glucose meters that keep getting smaller and faster, glycosylated hemoglobin measurements to give us overviews of our control in previous months, and insulin pumps that can help us adjust to even the most hectic and erratic work schedules and lifestyles. Continuous glucose sensors have recently become available; in the coming years, I am confident we will see sensors talking to pumps, effectively creating an artificial pancreas. And then there also remains the hope that continued research in stem cell biology and immunology will lead to interventions that can prevent and cure diabetes.
It is my hope that wherever you are on your journey with diabetes, my comments and the stories in this important book will make your trip just a bit easier.
Steven G. Gabbe, MD
Preface
There are many perspectives to the story of diabetes: those of doctors, nurses, pharmaceutical investigators, molecular biologists, behavioral scientists, and epidemiologists studying a worldwide epidemic. But the most significant perspectives are those of the individuals whose lives are involved with this illness. The history of an illness is inseparable from the life being lived around it—the person’s family, his work, his world. Diabetes happens in a life that already has a story. The purpose of these personal narratives is to situate the diabetes experience within patients’ lives and the meaning of those lives.
Both the patient and the health care provider have stories about their relationship. Their stories are intertwined but not always harmonious. The encounters between the two are a significant part of a patient’s life, but not necessarily the most important part. These narratives offer both patients and providers opportunities to reflect upon the richness and tension of such interactions.
While we have provided some information about diabetes—at least enough to allow the reader to understand the significance of each story—we have not intended to make this a textbook on diabetes or a self-care manual for patients. There are many excellent resources for self-care both in print and on the Internet, some of which are listed at the end of this book.
Unless otherwise noted, I (Dr. Graber) am the narrator of this book. It is based not only on my forty years of practice as an endocrinologist, but also on that of the two nurse practitioners whose compassion and skill have aided me and my patients. Anne Brown and Kathleen Wolf