Robert H. Phillips - Coping with Lupus

A Practical Guide to

Alleviating the Challenges

of Systemic Lupus Erythematosus

ROBERT H. PHILLIPS, PH.D.

AVERY

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Penguin Group (USA) Inc.

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Copyright 1984, 1991, 2001, 2012 by Robert H. Phillips, Ph.D.

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Published simultaneously in Canada

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Library of Congress Cataloging-in-Publication Data

Phillips, Robert H.

Coping with lupus : a practical guide to alleviating the challenges of systematic lupus erythematosus / Robert H. Phillips.4th ed.

p. cm.

Includes bibliographical references and index.

ISBN: 978-1-101-57994-7

1. Systemic lupus erythematosusPopular works. I. Title.

RC924.5.L85P45 2012 2011049380

616.772dc23

Printed in the United States of America

1 3 5 7 9 10 8 6 4 2

Book design by Meighan Cavanaugh

Neither the publisher nor the author is engaged in rendering professional advice or services to the individual reader. The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consulting with your physician. All matters regarding your health require medical supervision. Neither the author nor the publisher shall be liable or responsible for any loss or damage allegedly arising from any information or suggestion in this book.

While the author has made every effort to provide accurate telephone numbers and Internet addresses at the time of publication, neither the publisher nor the author assumes any responsibility for errors, or for changes that occur after publication. Further, the publisher does not have any control over and does not assume any responsibility for author or third-party websites or their content.

ALWAYS LEARNING

PEARSON

This book is lovingly dedicated to my wife, Sharon, and my three sons,
Michael, Larry, and Steven; my daughter-in-law Heather and her family;
my grandsons, Shaun and Carter; my parents, sister, mother-in-law,
nephews, nieces, cousins, other relatives and in-laws
and to my friends.

This book is also dedicated to the memory of
my aunt Helen and uncle Phil. Knowing them,
learning from them, and being loved by them was,
and always will be, a blessing.

The book is also dedicated to the memories of wonderful,
inspiring friends who have significantly furthered the
cause of lupusRon Carr, Bernie Engelhard, Gordon Sousa,
Murray and Doris Shaer, Sergio Finzi, and Henrietta Aladjem.

Finally, the book is, as always, dedicated to the memories of my four
beloved grandparentswonderful people who were cherished and
respected, and who, through the years, repeatedly demonstrated
positive ways to cope with medical conditions. They have provided the
foundation of who I am; I think about them, and miss them, every day.

Appreciative words of thanks must be accorded some very special people who provided invaluable assistance in the preparation of this book. Thanks to Betty Diamond, M.D., Robert Lahita, M.D., Lawrence Phillips, M.D., Yehuda Schoenfeld, M.D., and Harry Spiera, M.D., for their knowledgeable suggestions for the manuscript.

Thanks to the thousands of members of the Lupus Foundation of America, Lupus Alliance of America, and other independent local and international lupus organizations who provided such essential insight into the critical aspects of living with lupus. Special thanks to all of the important past and present members of these organizations who have played a significant role in the development of public awareness of lupus. Unfortunately, I cant thank all of them by name or wed run out of pages before the book even began.

I would like to acknowledge some special friends and colleagues, past and present, who have impressed me with their dedication and achievements throughout my years of involvement with lupus organizations. They include Gail and Steve Alberti, Glenda Amon, Kathleen Arnsten, Jane Bailey, Steve Balch, M.D., Mike Belmont, M.D., Barbara Bourgeois, Jane Bozarth, Ann and Reeve Bright, Jill Buyon, M.D., Michelle Callender, M.D., Steven Carsons, M.D., Karel De Ceulaer, M.D., Jo Dewhurst, Betty Diamond, M.D., Ann Dominger, Enid Engelhard, Julius Erving, Jeri Falk, Joan Finzi, Cindy Flower, M.D., Sandy Frear, Richard Furie, M.D., Carol and Alan Goldklang, Paula Goldstein, Susan Golick, Evelyn Hess, M.D., Rudolf Hocks, Judi Jones, Elaine King, Honi Kurzeja, Ginger Ladd, Bob Lahita, M.D., Pat Leisy, Robert Marcus, M.D., Kellie Martin, Brenda McCormack, George Nicholson, M.D., Richard Nussbaum, Jenny Palter, Duane Peters, Sefra Pitzele, JoAnn Quinn, Sandra Raymond, Noel Rose, M.D., Ph.D., Yehuda Schoenfeld, M.D., Peter Schur, M.D., Goldie Simon, Christine Smith, Marilyn Sousa, Harry Spiera, M.D., Fredda Steidle, Roger Sturdevant, Norman Talal, M.D., Cathy Thomas, George Tsokos, M.D., and Shelley Weir. (I beg forgiveness of anyone whose name was inadvertently omitted.)

Thanks to Renee Glick for word-processing assistance, and to Miriam Rich and Megan Newman at Avery, who made it a pleasure to correspond with my publisher.

Finally, thanks to Daniel Wallace, M.D., for his professional contributions of the highest caliberhis expertise, wisdom, and guidance are greatly valued.

Questions, questions, questions. Newly diagnosed lupus patients have lots of them. They dont want to bother their rheumatologist. After all, they need to be respectful of his or her time, so they limit themselves to a few queries that are very important. But how can they cope with the disease? How does it affect their life? Can they have a family? How much sun can a lupus patient be reasonably exposed to? What about relationships, diet, exercise? Are they going to die? What can I do to live as normal a life as possible? is one of the most common concerns patients express to me. There is no one-sentence answer. In fact, the true responses would take any knowledgeable practitioner hours to articulate. If one searches the topic lupus on Amazon, there are at least two hundred books on the subject. Which one should patients buy or rely on? Dr. Robert Phillips has had a special interest in lupus for decades. His skills in assisting lupus patients to cope demonstrate a consummate professionalism and competence that borders on breathtaking.