Living with Lupus

By Paul McAfee

I had ample motivation for writing this book. The possibility of some new income certainly has to enter a writers mind before undertaking such a venture, though I do not have any illusions of a big payday. I also wanted to see how difficult it is to get published for the first time and if it was even possible for someone like me, whose experience included almost exclusively newspaper work.
But there were other, more important considerations. The experience was therapeutic, and I honestly wanted the world to see more clearly how tough living with a terminal illness can be. Maybe those who read the book will have a newfound compassion and understanding for those who suffer daily, and maybe they will find ways, if only small gestures, to make the patients life more fulfilling.
For someone with bad lungs, there is ample time to write and watch television. I can only tolerate so many reruns of insulting sitcoms, so I chose to give the book a shot. Regardless of how well it sells, I am glad I did it. I hope the family and friends of those who suffer from lupus and related diseases come to better understand what their loved ones endure and, as a result, show them the love they deserve. The book is meant to allow people to experience, if only through words, what the lupus patient suffers regularly: pain, frustration, hopelessness, and depressionall wrapped in one destructive package.

• Language: English
• Publisher: Xlibris US
• Release date: Mar 28, 2015
• ISBN: 9781503556003

Book preview

Copyright © 2015 by Paul McAfee.

Library of Congress Control Number:   2015904570

ISBN:   Hardcover   978-1-5035-5598-3

   Softcover   978-1-5035-5599-0

   eBook   978-1-5035-5600-3

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Rev. date: 03/20/2015

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CONTENTS

Preface

Understanding Lupus and Interstitial Lung Disease

Drug Benefits Versus Drug Side Effects

The Early Reaction to Unexpected Prognosis

Other Illnesses Take Center Stage, Overshadowing Lupus

Impact On Family and Friends

A Friend in Lisa

The Psychological Impact

Depression: The Ultimate Downer

Palliative Care to the Rescue

Women’s Perspective

A Little Mental Help

Bucket List

Dealing With One’s Future Outlook

Does Hope Remain?

PREFACE

I had ample motivation for writing this book. The possibility of some new income certainly has to enter a writer’s mind before undertaking such a venture, though I do not have any illusions of a big payday. I also wanted to see how difficult it is to get published for the first time and if it was even possible for someone like me, whose experience included almost exclusively newspaper work.

But there were other, more important considerations. The experience was therapeutic, and I honestly wanted the world to see more clearly how tough living with a terminal illness can be. Maybe those who read the book will have a newfound compassion and understanding for those who suffer daily, and maybe they will find ways, if only small gestures, to make the patient’s life more fulfilling.

For someone with bad lungs, there is ample time to write and watch television. I can only tolerate so many reruns of insulting sitcoms, so I chose to give the book a shot. Regardless of how well it sells, I am glad I did it. I hope the family and friends of those who suffer from lupus and related diseases come to better understand what their loved ones endure and, as a result, show them the love they deserve. The book is meant to allow people to experience, if only through words, what the lupus patient suffers regularly: pain, frustration, hopelessness, and depression—all wrapped in one destructive package.

After vomiting violently for what seemed like the eight hundredth time in a period of approximately four hours, I decided it was time to make my first ever visit to the dreaded emergency room.

Fresh off a stay at Fort Sanders Regional Medical Center in one of many trips to the Knoxville, Tennessee, hospital while battling the early stages of lupus, I was now headed back only hours after returning home. The cause of the return trip: a certain antibiotic my body rejected with gut-wrenching tenacity. As a youngster, I had always tried to avoid what friends laughingly described as "blowing