Living with the Wolf and Surviving Lupus

By Liz Shaw-Stabler

This book from Liz Shaw-Stabler brings passion, guidance, and hope to the struggle of people suffering from chronic illnesses. Liz has spent decades battling systemic lupus, even enduring kidney failure and the challenges of living each day after day when she feels ill and then the near-miracle of kidney transplantand all of the effects on the living of life. Liz is greatly admired by all who know hera fighter, dedicated not only to personally overcoming illness, but also to bringing health care to people of colora group that SLE strikes particularly hard. Shaw-Stabler is a professional educator and a passionate advocate, devoting hundreds of hours to founding LupusCare, which provides education and group meetings for a community in Los Angeles that is rich in African American and Latino familiesa community that needs much better access to health care and health education. This book is another step in the battle. Read it to understand, to learn, and to discover how one person can influence the battle for personal and public health. Finally, read it to be inspired and to be moved to action. This book and its author are national treasuresBevra H Hahn, MD Professor of Medicine Chief of Rheumatology, David Geffen School of Medicine at UCLA, Great Admirer of Liz Stabler-Shaw Los Angeles, California, June 2010. Lupus is a life-altering experience and wisdom provided our teachers and mentors can be enabling and empowering. Liz Shaw-Stabler has helped hundreds of women with her reassuring adviceDaniel J. Wallace, MD, FACP, FACR Chief of Rheumatology at Cedares-Sinai Medical Center Liz Shaw-Stabler was born in East Texas and received her undergraduate degree from Prairie View A and M University. She moved to Chicago, Illinois, and began her career immediately after graduation. After living in Chicago for a few years, teaching high school, acquiring a Masters Degree and doing freelance modeling, she slowed down long enough to get married. She is the mother of one daughter who resides in Chicago. Liz now lives with her husband, Jay, in Inglewood, California, where she became the Founder and Executive Director of the Center for Lupus Care Incorporated and organization that advocates for under-served lupus patients. Liz is a thirty-year lupus patient and has suffered many life-threatening illnesses but continued to believe that she was created to do something much bigger than her illness.

• Language: English
• Publisher: Xlibris US
• Release date: Jul 31, 2010
• ISBN: 9781453504567

Book preview

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Copyright © 2010 by Liz Shaw-Stabler.

Library of Congress Control Number: 2010907249

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.

Xlibris Corporation

1-888-795-4274

www.Xlibris.com

Contents

Foreword

Acknowledgments

To My Editors

Introduction

One Humble Beginnings

Two Finding And Losing A King

Three A Twenty-Year Transfer

Four Finding My Foreigner

Five The Mayo Clinic

Six Dr. Max Harris

Seven Adoption

Eight A New Wave Of Suffering

Nine D-I-V-O-R-C-E

Ten Then I Got My Groove Back

Eleven Not A Jamaican Honeymoon

Twelve California Here I Come

Thirteen Training A Doctor

Fourteen Invisible Disabilities

Fifteen The Prodigal Daughter Returns

Sixteen A Good Wolf And A Bad Wolf

Seventeen Rio De Janeiro

Eighteen Pulmonary Emboli

Nineteen The Birth Of A Dream

Twenty Dialysis Again—Stat!

Twenty-One Accepting My Husband’s Kidney

Twenty-Two Beginning A New Life

Glossary

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Foreword

I t is with great delight that I write this introduction to Helen Liz Shaw-Stabler’s book Living with the Wolf. As a rheumatologist, I enjoy managing chronic illness. Early in my training, I realized that this requires at least two people, the patient and I, at minimum. Clearly there are variables in both the doctor and the patient that need to be present to achieve success. The doctor needs to have certain knowledge and professional skills. The patient needs to have certain knowledge and involvement in self-care.

Studies in many chronic diseases reveal that certain variables in the patient can and usually do impact outcomes in chronic disease. Financial capability, level of intelligence, and compliance are three major issues that impact outcome in chronic illness such as diabetes, asthma, rheumatoid arthritis, and lupus, to name a few. Financial capability may include insurance coverage, available funds, or financial support from family. The patient needs to purchase items for improvement in outcomes.

Level of intelligence doesn’t only mean level of education achieved or I.Q. Many patients seek knowledge about their illness through many of the available resources; internet and printed media are just a few of them. When patients are diagnosed with a non-curable disease, friends and family want to help their loved ones. The patient is bombarded with try this and do that from well intended individuals. Knowing what to try or not try, knowing to keep a list of items to discuss with your doctor, are just a few of the other ways to express intelligence.

Compliance, or the ability and desire to follow the agreed upon recommendations, is another huge element in successful management of lupus and chronic disease. Compliance requires a trusting open communication relationship between patient and physician. It’s been said that medicine is both an art and a science. Chronic illness management allows for much more artful applications to the science than does acute disease such as pneumonia, stroke, appendicitis, etc. Patients need to ask questions, doctors need to listen and answer. The patient needs to prepare for the office visit with their own observations and questions. If there are several ways to address the medical problem, it is very likely to have better follow through and compliance if the patient has input into the final recommendations. The patient needs to take ownership of their disease and manage it—24/7. Physicians are there to facilitate, monitor, support, and encourage the patient’s efforts in managi ng their health.

As you read through Liz’s book Living with the Wolf watch for financial, intelligence, and compliance issues as you follow her course of lupus through her lifetime, through her eyes. I am amazed at the details she reveals and how lupus effects her many identities; patient, wife, teacher, mother, friend, model, world traveler, etc. I am amazed by the impact of lupus on her relationships and life decisions.

Liz’s life has been all about paying it forward. She is writing this book to inform us as she has gotten informed. She is rearing a beautiful daughter, Abeni, who is in a career of social service, again helping those who are disadvantaged. And, of course, it is the story of fighting the wolf that has led to the birth of the "Center for Lupus Care, Inc., a not-for-profit organization which supports, educates, and advocates for lupus patients and their families.

Lastly, I think the medical community could benefit greatly by making a book such as this Living with the wolf required reading in medical schools giving young doctors a birds-eye view of chronic illness through the eyes of an intelligent patient. This may help develop more compassion and listening skills in the medical profession. This would lead to more patient/physician partnerships in health care. Congratulations to Liz for sharing her journey and continuing to teach us all.

Max L. Harris, MD

Human Being, Son, Friend,

Congregant, Husband, Medical Colleague, Father, Partner in Health Care, Teacher, and Consultant

To my husband Jay, who has loved me for twenty-five years while being my caretaker and chose to give me the gift of life on

December 12, 2006

And

To my beautiful daughter, Abeni, who continues to give me unconditional love and a reason to fight for a quality lupus life while making me very proud to be her mother

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Acknowledgments

T here are so many people who continued to encourage me to write (and finish) this book. I owe an enormous debt of gratitude to my family and friends who have watched me suffer for the past thirty years and always knew that my story should be told so that it could possibly help someone else.

Special thanks to my mother, who before she passed away warned me that a cure will have been found before my story even gets published, if I didn’t get on the ball.

I also want to thank the many doctors who kept me alive while I suffered crisis after crisis. In particular: Dr. William Ginsburg, Dr. Max Harris, Dr. Marvin Leftick, Dr. Lawrence Devoe, Dr. Paula DeMerieux, Dr. Gideon Darvish, Dr. David Ramin, Dr. Donald Dafoe and Dr. Dwight Makoff.

Dr. Max Harris and Dr. David Ramin deserve a special thank you because they took me on as a patient, and soon after, they became my friends. These two doctors have always been accessible to me during regular office hours and beyond.

Much gratitude to Dr. Harris for writing the foreword.

To Dr. Dan Wallace, I thank you for writing The Lupus Book: A Guide for Patients and Their Families. Your book has not only contributed to the knowledge and wellness of so many lupus patients, it has been embraced by many as the official lupus bible.

Dr. Bevra Hahn, how can I thank you enough for signing on to my dream. You helped make my passion to educate underserved lupus patients a reality, and you have always been there when I needed an expert or a friend.

Words cannot express the love and gratitude for the three people who stood by me during my last major episode. To my husband Jay: how can I ever thank you for giving me the gift of life? You were so willing to give me one of your kidneys, and I love you even more than when I said I do. To my daughter, Abeni: I needed you here for the two surgeries, and you were here holding my hand. And to my only sister, Odessa Marie: what a caretaker you are. There are no words to describe your tenderness and competence in nursing a wounded soul back to health. For thirty days you were right there, and I love you and thank you for taking good care of me.

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To My Editors

Robert (BOB) Boone, my dear friend and educator, you were the first to read some of the chapters and suggest corrections and translations then advise me on how to continue. Thank you for letting my manuscript take some of your time, knowing that you should have been grading your students’ papers.

When you talk and spend the kind of time that I spent with Gina Smith, while reading this book line by line many times, you develop a close friendship because so many things that are not in the book are discussed.

From the moment you agreed to read and edit this book we knew that it was going to be a journey—because both of us are lupus patients and lupies have special relationships with one another.

Gina, without your encouragement, support, guidance, enthusiasm and belly laughter, this book would not have made it to the publisher. I can't thank you enough for your contribution.

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Introduction

When you learn, teach

When you get, give

As for me,

I shall not be moved.

—Maya Angelou

T o all lupus patients throughout the world—especially my fellow lupies whom I have been close to and involved with for the past fifteen years—and to anyone who suffers from a chronic illness, I offer you some of what I know for sure.

My reason for writing this book is to try and share love, give hope, and encourage all of you to keep the faith and continue to fight. And when you are feeling good, do these things for those patients who are not feeling so good. Find out who you really are and what makes you want to be the best that you care to be. It has been my experience that the more you know about anything, the easier it is to understand it, to live it, and/or cope with it.

In order to do this, you must know your body, and the only way to do that is to listen to it talk to you. This may sound funny, but I am serious, and I have the research to back me up. Your body tells you when it’s tired, excited, happy, hungry, angry, in love, and so on, if we would only listen. Once you become accustomed to listening and hearing, then the next step is to take that information seriously and do what needs to be done. If you can communicate with your body and solve its problems, that’s fine. But if you cannot solve the problem or problems with your own wisdom, then you must involve an expert.

If once you get to know the expert and trust him or her enough to tell them what the body is saying to you, they should and will help you solve the problem. Remember they can only help you. They cannot do it alone. You have the greatest role to play, and that is communicating with your body and your expert. It’s called partnering in the care of your mind, body, and spirit.

I finally began to listen to my body speaking to me in 1978. I had ignored it for so many years until it continued to speak louder and louder. Finally, I sat still to listen because it had begun to talk so loudly that I wasn’t able to ignore it any longer.

After searching for a year, I found an expert that I trusted and told him what was being said to me. He studied my script for a few days and concluded that the body was saying that I had systemic lupus erythematosus, commonly known as SLE or lu*pus.

Lupus is a chronic autoimmune disease that produces inflammation of many major organs, especially the skin, brain, lung, heart, joints, and kidneys.

Lupus in Latin means wolf. Years ago, perhaps even before 1851, some doctors believed that the tale-tell rash often seen on the nose and cheeks of many lupus patients (and commonly called the butterfly rash) is very similar to the facial markings of a wolf; hence the disease is called lupus.

Our immune system is given to us to protect the body from viruses, bacteria, and other foreign material. The body, as stated by Dr. Dan Wallace in his fourth edition of The Lupus Book, is always looking for foreign substances that pose a threat to the intricate workings of our machine.

He also explains that the monitoring system consists of blood and tissue components, which include certain proteins and blood cells that travel back and forth between blood and tissue. In an autoimmune disease like lupus, the immune system loses its ability to tell the difference between foreign substances and its own cells and tissues. This triggers antibodies to attack whatever appears to be foreign, causing them to destroy our own healthy cells and tissue. That’s why lupus is called an autoimmune disease.

Lupus is not a simple disease to explain or to understand. Many people have a difficult time convincing others, even family members, that they are sick. It is considered a look good—feel bad disease. Too often our disabilities are invisible, and in our culture, if one isn’t missing a limb or an eye or even bleeding visibly, they are not seen as being disabled.

Dr. Wallace also reports that In the United States, lupus is more prevalent than sickle-cell anemia, cerebral palsy, multiple sclerosis, and cystic fibrosis combined. It is America’s least recognized or talked about major disease. Research shows that there are approximately 2 million people who have been diagnosed with lupus in this country alone. We can only guess how many people there are who have not been diagnosed.

At the present time, there is no cure for lupus, and it is not contagious. It affects women disproportionately to men and African American women disproportionately to all other ethnicities. Lupus patients are like snowflakes, each case is different, even though some of the same symptoms are common to almost all patients.

No one knows exactly why we get lupus, but scientists believe that individuals are predisposed to lupus then something happens that causes it to surface. Some known causes that play a role in the condition becoming active are: pregnancy, environmental factors such as infections, antibiotics, sunlight, and extreme stress.

There are three types of lupus:

• Systemic lupus erythematosus is the most common form and can be the deadliest. Systemic simply means that it can affect many major systems or organs. Lupus is usually diagnosed in young women during their childbearing years; ages fifteen to forty-five.

Ninety percent of diagnosed cases are women; the remaining 10 percent are men unless it is a case of neonatal lupus. There can be times when lupus shows no interest; therefore, a few or no symptoms are seen or felt, and this period is called remission. When the disease is very active and many signs and symptoms are evident, this period is called a flare. It is systemic lupus that causes so many women and men to be classified as disabled, forcing many to fall below the poverty level.

• Discoid or cutaneous lupus erythematosus consists mainly of chronic skin manifestations. Visually, it is a raised rash that appears mostly on the face, neck, or scalp, but it can occur any place on the body. About 10 percent of patients with discoid lupus will be diagnosed with the systemic form of the disease. Cutaneous lupus refers to skin lesions that appear on parts of the body exposed to the sun, which usually leaves no scarring.

• Drug-induced lupus is a form of lupus caused by certain medications. The symptoms are similar to those of SLE (joint pain, rashes, fever, chest pain), and they usually disappear when the drugs are stopped.

Because lupus mimics so many other autoimmune diseases, it remains difficult to diagnose. The American College of Rheumatology (ARC) has created the universal criteria for a lupus diagnosis, stating that experiencing four out of eleven symptoms will give you a definitive diagnosis of systemic lupus.

There are a myriad of lupus symptoms, and a rheumatologist (specialist who treats lupus) is the appropriate doctor to guide you along your journey while treating the symptoms that your body speaks of.

Common signs and symptoms of lupus:

1. Red rash or color change on the face, often in the form of a butterfly which appears across the nose and cheeks (butterfly rash)

2. Painful and/or swollen joints (arthritis)

3. Unexplained low-grade fever

4. Chest pain with deep breathing (pleurisy)

5. Swollen glands (usually in neck, underarms, and groin area)

6. Extreme fatigue (tired all the time)

7. Unusual hair loss

8. Pale or purple fingers or and toes from cold or stress (Raynaud’s phenomenon)

9. Sensitivity to the sun

10. Low blood count

11. Depression, trouble thinking, memory fog

12. Mouth sores and ulcers

13. Unexplained seizures (convulsions)

14. Seeing things that don’t exist (hallucinations)

15. Repeated miscarriages

16. Kidney problems or failure

17. Antiphospholipid syndrome (risk of developing blood clots, sticky blood)

Now take a minute and review the introduction. This short capsule of information will benefit all patients, especially those who can recall key facts to discuss with their physicians and other health care professionals. Help them take a greater interest in you and what your body is saying. Together, you can partner in your health care endeavor.

Living with the Wolf is a composite of my thirty-year struggle with both systemic and discoid lupus. The ups and downs, remissions and flares have taught me patience, knowledge, how to love and be loved, and how to accept as well as give support and understanding. It has certainly increased the depth of my faith.

Now continue to read about my journey with this insidious disease called lupus, and I hope that you will find something that will give you the inspiration needed to continue to live and live to the fullest.

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One

Humble Beginnings

O N APRIL 24, 1979, one of the old psychological myths that I had been forced to live with was shattered. It was a wonderful feeling to realize that I had been right all along; when I said, I can’t stand being in the sun. I had been told repeatedly by my siblings and others that I didn’t want to get in the sun because I was afraid of getting blacker .

You see Black was not beautiful until 1968 and I was born in 1943.

I was born to Timothy and Karella Shaw on November 28, 1943, in Marshall, Texas. Marshall is a small sunny East Texas town, forty miles west of Shreveport, Louisiana. My parents lived on a farm when I was young, and the survival of our family came from that small farm. It is