Laurie Edwards - Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties

Praise for Life Disrupted

Eloquent and funny. If youve experienced chronic illness, or if you care for someone who has, you need to read this book.

Amy Tenderich, www.diabetesmine.com,
coauthor of Know Your Numbers, Outlive Your Diabetes

As a person living with a chronic illness, it is inspiring to hear such a fresh and important voice. Laurie Edwards puts adversity in its place and teaches us to not only go on living, but to create a better life. High five, Sister!

Kris Carr, author of Crazy, Sexy, Cancer

For those young people suffering from chronic illness, Life Disrupted offers strategy, advice, and hope. For those of us lucky enough to grow up without illness, it tells us how to be respectfully helpful to friends, family, and colleagues in this situation. Superb and engaging writing.

Paul F. Levy, president and CEO of Beth Israel
Deaconess Medical Center, Boston,
www.runningahospital.blogspot.com

A wise and valuable addition to the literature on chronic illness, illuminating with verve and wit the particular struggles faced by young adults. Ms. Edwards is a delightful and seasoned guide. She knows what the issues are, how to decipher them, and how to live a rich life while shuttling between hospitals and high heels.

Dorothy Wall, author of Encounters with the
Invisible: Unseen Illness, Controversy,
and Chronic Fatigue Syndrome

Laurie Edwards is a generous writer who describes with grace and clarity how she has learned to live with multiple chronic conditions. This book is a gift to young people who are navigating chronic illness, school, and their new adulthood all at once.

Jessie Gruman, author of AfterShock:
What to Do When the Doctor Gives You
Or Someone You Lovea Devastating Diagnosis

Chronic illness neednt change your life for the worse if you let Laurie be your guide to everything from doctors to dating to why we sweat the small stuff (because sometimes thats all we feel we can control). Laurie Edwards is a compassionate confidante, an understanding friend, and a witty chronicler of all things chronic illness, even the not-so-pretty parts. Bravo!

Susan Milstrey Wells, author of A Delicate Balance:
Living Successfully with Chronic Illness

Laurie Edwards is a life-enhancing writer. If youre a person with chronic illness, you should always keep this wonderful book handy.

Sarah M. Whitman, M.D., psychiatrist specializing
in chronic pain management, www.howtocopewithpain.org

Laurie Edwards has written a moving and meaningful description of the issues that people face when they live with unpredictable and debilitating disease. Her words reminded me of my own strugglesand her laughter helped me remember the good times, too.

Rosalind Joffe, author of Women, Work,
and Autoimmune Disease: Keep Working,
Girlfriend! and president of Chronic Illness Coach

Both a practical and a philosophical guide for those navigating this heretofore uncharted territory.

Lynn Royster, J.D., Ph.D., director of The Chronic Illness
Initiative at The School for New Learning at DePaul University

Life Disrupted is moving and often humorous, as Laurie Edwards informs readers about how they can navigate successfully through the medical storms, live well, and maintain fulfilling relationships.

Douglas Whynott, author of Giant Bluefin
and A Country Practice

The time for patient empowerment has come and Laurie Edwards voice is leading the way. As a fellow lifelong patient, I appreciate her honesty in disclosing private patient moments which reflect the often unspoken truth of living with chronic illness.

Tiffany Christensen, www.sickgirlspeaks.com,
author of Sick Girl Speaks!: Lessons and Ponderings
Along the Road to Acceptance

Getting Real About Chronic Illness in Your Twenties and Thirties

Laurie Edwards

Copyright 2008 by Laurie Edwards

All rights reserved.
You may not copy, distribute, transmit, reproduce, or otherwise make available this publication (or any part of it) in any form, or by any means (including without limitation electronic, digital, optical, mechanical, photocopying, printing, recording, or otherwise), without the prior written permission of the publisher. Any person who does any unauthorized act in relation to this publication may be liable to criminal prosecution and civil claims for damages. For information address Bloomsbury USA, 1385 Broadway, New York, NY 10018.

Published by Bloomsbury USA, New York

Bloomsbury is a trademark of Bloomsbury Publishing Plc

LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA

Edwards, Laurie (Laurie Elizabeth)
Life disrupted : getting real about chronic illness in your twenties and thirties / Laurie Edwards.-1st U.S. ed.
p. cm.
Includes bibliographical references.
1. Chronically ill. 2. Young adults-Diseases. I. Title.
RC108.E39 2008
618.920478-dc22
2008000245

eISBN: 978-0-80277-973-1

First published in the U.S. by Walker Publishing Company in 2008
This e-book edition published in 2011

To find out more about our authors and books visit www.bloomsbury.com. Here you will find extracts, author interviews, details of forthcoming events and the option to sign up for our newsletters.

For Dorothy Dollie Shea, who loved books,
and John T. Shea Jr., who valued truth

Your chart doesnt mention it, but are you a nurse, by any chance? I mean, you know so much of the terminology, my nurse asked. Her name was Tracy, she looked like she was in her late twenties, a little older than me, and she brought into the stale hospital room a refreshing whiff of light perfume. I had never seen her among my batch of regulars, but by the weeks end she would know to bring diet ginger ale without being asked and would look aside when visitors arrived long after visiting hours ended.

We had just finished discussing my IV line and how I feared it was infiltrated and would likely need changing soon. It was July 2003, and I was in the hospital for the fifth time since the previous spring.

I chuckled slightly at her question, seeing that she was completely in earnest.

No, Im not a nurse... Im a twenty-three-year patient, I said. Seems like nursing may have been an easier way to get so informed, huh? I asked, using my free arm to motion to the oxygen tubes and the heart monitor banked to my left, obvious indicators of my lifelong experience with illness.

It wasnt the first time Id been asked if I were a medical professional and it wouldnt be the last, but it would be the first time that I stopped to consider the implications of Tracys assumptions, and the value of my patient experience. In fact, later that same summer it was this recognition that prompted me to leave my doctor and hospital and embark on the diagnostic journey that finally yielded the correct diagnoses Id waited a lifetime to get. I have primary ciliary dyskinesia (PCD), a rare genetic respiratory disorder that means the cilia (tiny structures) that normally line the lungs and respiratory tract and help clear out mucus and infection either do not work or are not there at all. The symptoms of PCDfrequent infections, thick mucus, decreased oxygenation, etc.are similar to those of cystic fibrosis (CF), as are the treatments. According to the PCD Foundation, there are only about a thousand documented cases of PCD in the entire United States, though an estimated twenty-five thousand people may have the condition but have yet to be accurately diagnosed. Because I have several other medical conditions (bronchiectasis, celiac disease, and thyroid disease, to name but a few), it was often difficult to tease out where one disease ended and another began, so I have spent most of my life looking for explanations of my illness that match my