Jessica Rowshandel - Lupus: 365 Tips for Living Well

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ISBN: 978-1-936303-87-8

e-book ISBN: 978-1-61705-251-4

Acquisitions Editor: Julia Pastore

Compositor: diacriTech

2016 by Jessica Rowshandel. 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 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

Rowshandel, Jessica.

Lupus : 365 tips for living well / Jessica Rowshandel, LMSW.

pages cm

Includes bibliographical references and index.

ISBN 978-1-936303-87-8 ISBN 978-1-61705-251-4 (e-book)

1. Systemic lupus erythematosusPopular works. 2. Systemic lupus erythematosusTreatmentPopular works. I. Title.

RC924.5.L85R69 2015

616.772dc23

2015036143

Printed in the United States of America by McNaughton & Gunn.

15 16 17 18 19 / 5 4 3 2 1

For the members of my lupus support group, with gratitude

Sometimes it might feel as if lupus has taken over your life. Thats because lupus impacts every part of it, the most obvious being your physical health. If you dont feel well, its hard to live the life youre used to or the one you had planned. Lupus can impact your self-esteem and emotional health, social life, romantic relationships, family life, ability to work, income, and personal goals. It can feel overwhelming and bleak. This is why its important to have the tools to manage these parts of your life and reduce the impact lupus has on them. In turn, you will improve your quality of life. This book is filled with hundreds of tips to help you do that.

With this book, you will learn how to obtain medical care, which is step one. You will then learn how to become an active participant in your health care and how to advocate for yourself in many areas of your life. The book ends with tips on how to get involved with awareness and advocacy activities in the lupus community. There are also resources in the back, including contact information and website addresses. These will help you learn more about topics covered in some chapters and connect with relevant organizations.

The books structure reflects how learning to live well with lupus builds on itselffrom the important foundations of learning about lupus and obtaining medical care, to addressing specific personal needs, to broad community issues. When developing this structure, I was inspired by the proverb, Little by little, a little becomes a lot. The proverb is also a reminder that progress does not happen overnight and does not need to happen fast. With the hundreds of tips in this book, if you take on too many at once you will feel tired and overwhelmed. Start small and with whats most important to you, and build on them little by little.

Dont strive for perfection. Perfection is impossible, and striving for it creates a lot of pressure and disappointment. Do the best you can for where you are in life today. Some days that will mean doing less. Sometimes you will do more. Go at your own pace. Be patient and compassionate with yourself. Remind yourself that you are doing the best you can.

As the former Director of Social Services of the S.L.E. Lupus Foundation, I listened to the stories of hundreds of people with lupus who all did their best. At support groups, they showed each other the compassion that they sometimes had trouble showing themselves. Sometimes we have trouble taking our own advice, and we need the help of others. I facilitated the groups, but even I found myself in this situation. If I hadnt listened to the stories of my support group members, I would have never seen a rheumatologist for my lifelong, but worsening, symptoms of body pain and fatigue. I was finally diagnosed with fibromyalgia. With this diagnosis, I suddenly had a fresh understanding of many of the coping strategies we spoke about at length in the groups.

Though there are some similar symptoms, lupus is not fibromyalgia, and it was only through these stories that I gained a better understanding of what life with lupus is like. In order to translate lupus from a list of symptoms to a real experience, we need these stories. But even more important is that I got to know who each group member was and learned, first hand, that no matter what, lupus does not define anyone no matter how much it feels like lupus has taken over. You are not lupus. You are much more than lupus, and hopefully this book will help you continue to realize and live that.