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Diary of a Mad Lupus Patient: Shortness of Breath

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The medical information in this book is provided without any representations or warranties, expressed or implied.

You must not rely on the information in this book as an alternative to medical advice from your doctor or other professional healthcare provider.

Printed in the United States of America

Published by Unique Variety Sales LLC

www.uniquevarietysales.com

First Printing, 2012

ISBN: 0988881055

ISBN-13: 978-0-9888810-5-1

ISBN: 9780988881075

This book is dedicated to my mother who never saw me as sick and unable. She prayed for me to be well and able to do everything that she couldn’t. Mama, I can do whatever I want because of you.

Acknowledgments are for those who know what they mean to me. To my husband Glenn, thank you for coming into my life. Thank you to my aunt Esther and my beloved mother, Hettie Ann. Thank you to Brandi, my pride and encouragement in many aspects of my personal life and career. A heartfelt “thank you,” goes to my best friend Carmen, for her patience and endless laughter.

A very special thanks to Shawn, my sister and friend, who had the courage to accept my illness as it was from the very beginning. Thank you for walking to my house almost every day afterschool to keep me updated on the latest high school gossip. Thank you to all who helped me complete this project, kept me in good health, cheered my next steps, and provided the best care and personal support possible. Thank you to all of the women in my life that took the time to care and share. Thank you to Mrs. Beverly Clyburn, Mrs. Marion Gary, and Dr. Eavon Hickson for your encouragement, time, and support through the years. You touched my life and I grew. Dr. Hickson, thank you for taking the time to provide “love” edits where I needed them most.

And last, but not least, I want to thank my physicians, nurses, and friends who encouraged me to live and move forward. Thank you to all of my physicians for their patience and care. God is magnificent– I thank Him for giving me a gift of knowing who is best to cross my path in life.

Through God, all things are possible.

“I can do all things through Christ which strengtheneth me.”

∼ Philippians 4:13 (King James Version)

This book is a re-write of a handwritten little notebook that was used to record medication changes, thoughts, feelings, pain, hurt, treatments, and the end of the world as I saw it when I was first diagnosed. Simply put, these pages compose the exact notes of my experiences upon the onset of systemic lupus erythematosus (SLE). Names have been changed to protect the privacy of others.

According to the Lupus Foundation of America, lupus is defined as a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). The body’s immune system produces auto-antibodies that attack healthy tissue and cause inflammation, pain, and damage in various parts of the body. At the time this diary was written, lupus was considered life threatening and incurable. At the time this diary was prepared in traditional book format, lupus was still considered a life threatening illness. There is still no cure for the disease.

Many symptoms affect those diagnosed with lupus in different ways. Lupus can affect several major organs of the body to include the brain, central nervous system, and the digestive system. Often called SLE by medical practitioners, lupus is known for creating a skin rash in the form of a butterfly. Forms of lupus vary and may include varying symptoms such as: chronic fatigue, fever, mouth sores, loss of hair, sensitivity to sunlight, and depression.

More information about the wide range of symptoms, forms, and treatments for Lupus can be found at http://www.lupus.org.

“Am I dead yet? Well, dang! The doctor lied! The doctors said that I wasn’t going to make it ten years. Yet, here I am and still kicking. What is it that they say? It ain’t over until it’s over!” I must admit, in the beginning, I wasn’t too enthusiastic about writing this diary. I had second thoughts about revealing my personal and intimate thoughts. A doctor’s orders brought about the transcribing of this journal of my life. Out of frustration with me not being able to explain what my symptoms were, the doctor in charge of my initial care told me that I needed to write how I was feeling. So, I began to write down how much pain I was in at any given time or day. I was upset, scared, and hurt. I was seventeen, and confused–I was mad!

All of my notes and my instant reflections were written by hand. This was my way of quickly expressing my thoughts and feelings. I didn’t think about it then, but now, I’m glad to see that keeping a journal of as much as I could at the time, had helped me. Whenever I had an inkling to do so, writing gave me a chance to reflect.

To anyone who doesn’t know me, this may seem like useless, simple typed scribbles from someone’s notepad. Yet now, when a doctor says I need to stop a medication or start a new one, my hands quickly move to my purse. This presents a sort of stop-motion for the doctor as I pull out my journal to show that no disrespect was intended. Now, my physicians smile. And from the pause, my physicians move right back into the recitation of orders as it may be. I still have more of my life’s story to tell and this compilation of my first reflections is only the beginning of my journey with lupus.

“And he said unto her, Daughter, thy faith hath made thee whole; go in peace, and be whole of thy plague.”∼Mark 5:34 (King James Version)

DEDICATION

ACKNOWLEDGEMENTS

PREFACE

INTRODUCTION

1 ACCEPTANCE

2 DENIAL

3 HEADACHES

4 MANAGING

5 SURVIVAL

6 REMISSION

7 ADJUST

GLOSSARY

ABOUT THE AUTHOR

During this time, I was in my last year of high school. While all my friends were enjoying fun activities, I was homebound for my entire senior year. And worst of all, my hair was falling out for no reason at all. Scabs formed on the top of my head. I had a high fever that I couldn’t explain. I felt weak all the time. At times, I couldn’t even pick up a glass of water. My skin was constantly dry. Patches of dry skin could not be remedied with anything I tried. My mother would have to help me bathe and dress myself. The many tests I had to take seemed insurmountable.

The various physicians I went to see did not know what was wrong with me. They diagnosed me with various illnesses. Each doctor’s appointment awarded me a new Girl Scout badge. After various different appointments, I was said to have had rheumatoid arthritis, the flu, pneumonia, and mononucleosis. I was frustrated and confused. And all of the medicine I had to take made me feel like a walking guinea pig. A patient physician finally diagnosed me with lupus. At the insistence of this doctor, I started jotting down short notes in a little spiral notebook. No particular format, no structure to sentences were used, because there was no structure to my thoughts. I was attempting to accept my diagnosis.

Thursday, October 7, 1993

Diagnosed with Systemic Lupus Erythematous- SLE; also known as lupus.

Tuesday, April 19, 1994

Increase to 60mg Prednisone