Lynn Crowe - The Diabetes Manifesto: Take Charge of Your Life

The Diabetes Manifesto

The Diabetes Manifesto

Take Charge of Your Life

Lynn Crowe

Julie Stachowiak, PhD

Acquisitions Editor: Noreen Henson

Cover Design: Carlos Maldonado

Compositor: Absolute Service, Inc.

Printer: Hamiton Printing Company

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2011 Lynn Crowe and Julie Stachowiak. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the publisher.

Medical information provided by Demos Health, in the absence of a visit with a health care professional, must be considered as an educational service only. This book is not designed to replace a physicians independent judgment about the appropriateness or risks of a procedure or therapy for a given patient. Our purpose is to provide you with information that will help you make your own health care decisions.

The information and opinions provided here are believed to be accurate and sound, based on the best judgment available to the authors, editors, and publisher, but readers who fail to consult appropriate health authorities assume the risk of any injuries. The publisher is not responsible for errors or omissions. The editors and publisher welcome any reader to report to the publisher any discrepancies or inaccuracies noticed.

Library of Congress Cataloging-in-Publication Data

Crowe, Lynn.

The diabetes manifesto : take charge of your life / Lynn Crowe, Julie Stachowiak.

p. cm.

Includes bibliographical references and index.

ISBN 978-1-932603-94-1

1. DiabetesPopular works. 2. DiabetesPsychological aspects. I. Stachowiak, Julie. II. Title.

RC660.4.C76 2011

616.462dc22

2010038543

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Contents

This is a book about dignity.

More specifically, this book is about living with dignity while simultaneously dealing with diabetes. Like many chronic diseases, diabetes can eradicate our sense of control and our self-esteem if we are not actively fighting to keep ourselves whole every moment. However, diabetes comes with some extra challenges to maintaining our confidence in our choices and ourselves.

Diabetes comes with a lions share of blame and guilt. The blame comes from others (including doctors) because they often believe that we did this to ourselves (in the case of type 2 diabetes), that any complication that comes along indicates that we were not vigilant in following treatment plans, any blood glucose reading that is a little high is proof that we are not trying hard enough or that we gave into temptation because of a lack of willpower. The guilt comes because maybe we believe them, if even just a little bit.

This, my friends, is bullshit.

It is my goal to bring you information and ideas that give you a healthy perspective on living with diabetes, balancing hope with realism.

To clarify, we are all still accountable for our actions and for the impact of our actions on our diabetes. Yes, we need to work like hell to stay healthy (many of us more than others) and, no, it is not fair (whatever that means) that we have this burden and others dont. However, one of my goals in this book is to put things in perspective. We need to get away from the black and white equation that tight glucose control equals a life free from diabetes-related complications. For many of us, complications enter our lives, despite our efforts. Because the threat of complications has been used as motivation to keep us compliant to treatment, not only do we feel shame at our failure to keep complications away, but also we are terrified of them. Another important part of my message is that complications are not a death sentence. They can be managed, just like we manage our diabetes.

So, while I am telling you that only part of diabetes is under anyones control, I also want to emphasize that we do need to constantly be taking action to try to keep our blood glucose within our target rangestriving for accountability for our decisions and actions without shame around any diabetes-related problems. I, personally, have decided that my best shot is to do my best to attain ideal glucose levels without totally sacrificing my life and becoming a walking disease, unable to think or talk about anything else. Living with diabetes is about vigilance and balance. Even though I cannot realistically maintain ideal blood glucose levels, I work toward that goal, knowing that perfectionism in diabetes is a losing battle. It is a challenge every day.

To that end, The Diabetes Manifesto will take you through different aspects of life with diabetes, in search of ways to increase the possibilities of your life. This includes optimizing medical care and managing complications, but also extends to relationships, emotions, activism, and much more. In each of these areas, The Diabetes Manifesto will help you to figure out what you need, identify opportunities, understand the challenges, and get your needs met.

Take Charge

Decide to be a person living with diabetes, armed with knowledge and confidence, who is prepared to take action.

Each Persons Diabetes is Personal

We know that there are two primary types of diabetes, and some other, less common, types. To complicate matters, even within the different types, we all have different disease paths. Even among people sharing a complication, the spectrum is hugewhat is an annoyance to one person can strike another person much harder and become disabling.

Despite these differences, there are things that make us similar as people living with diabetes. We cant say for sure what the future holds. We really dont know what our next complication might be or when it will show up. We dont know which medications or procedures will help us feel better until we try them.

We do know that we didnt do anything to cause the diabetes, even though there are some contributing factors to type 2 diabetes. And, sadly, we know that, for the moment, there is no cure for diabetes. Most of all, we know that we would really rather not have diabetes.

For People With Diabetes, by a Person With Diabetes

As a person who is living with type 1 diabetes, admittedly some days more successfully than others, I want to share with you what has worked to keep me going. To keep me from losing my confidence, and to preserve those parts of myself that I take pride in. I have tried to capture the essence of my strategies and feelings in the pages of this book.

We now know a great deal more about other aspects of diabetes and the tools we have to manage diabetes are light-years from where they were when I was diagnosed as a child. I am fortunate to have these tools at my disposal today, but often wonder where I would be in terms of complications if they had been in my arsenal since day one. However, I know that there is much more for the scientists to learn about treating diabetes and preventing complicationsin terms of a cure or a way to manage this disease free of complications, we are not there yet.