Manage Your Chronic Illness, Your Life Depends on It: One Hundred Recommendations to Help Prevent Illness and to Manage Your Physicians, Hospital Stays, Insurance Providers, and Well-Meaning Caregivers

By Edward J. Lopatin

Manage Your Chronic Illness,
Your Life Depends on It

One hundred recommendations to help prevent illness and to manage your physicians, hospital stays, insurance providers, and well-meaning caregivers


Edward J. Lopatin

• Language: English
• Publisher: Xlibris US
• Release date: Jul 21, 2011
• ISBN: 9781462847440

Book preview

Copyright © 2011 by Edward J. Lopatin.

Library of Congress Control Number:    2011911472

ISBN:         Hardcover                            978-1-4628-4743-3

                   Softcover                             978-1-4628-4742-6

                   Ebook                                  978-1-4628-4744-0

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.

This book was printed in the United States of America.

To order additional copies of this book, contact:

Xlibris Corporation

1-888-795-4274

www.Xlibris.com

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100644

Contents

Foreword

Acknowledgments

Chapter 1

My Journey From Prime Of Health

To Multiple Chronic Illnesses

Chapter 2

Listen To Your Body And

Then Research Your Symptoms

Chapter 3

When To Fire Your Physician And

How To Find A Better One

Chapter 4

Support Groups

Chapter 5

Applying For Disability

Chapter 6

Navigating Your Way

Through A Hospital Stay

Chapter 7

Learning How To Ask For Help

Chapter 8

Retain The Best Health

Insurance Possible

Chapter 9

Finding Medical Care Immediately

Chapter 10

Make Sure Your Retirement

Doesn’t Make You Sick

Chapter 11

Adhere To Ten Commonsensical Precautions To Avoid Injury,

Illness, Or Death

Chapter 12

Conclusion: Build Yourself

A Strong Health Management Team

The Patient As Team Leader

About The Author

Resource Listing

References

Do You Know The Right Questions To Ask?

Summary Of The Book’s 100 Recommendations

List Of Abbreviations Used In Book

Dedication

This book is dedicated to all of the people

who have had or will have chronic and difficult to diagnose illnesses,

which really is almost everyone, sooner or later.

Foreword

Manage Your Chronic Illness, Your Life Depends on It provides a candid and personal story of my search for the diagnoses of several chronic illnesses and for strategies to treat them.

This story emphasizes my frustrating four-year effort to have my painful bladder illness, known as interstitial cystitis (IC), diagnosed and to find treatment protocols to treat it. My story also chronicles my effort to resolve six other chronic illnesses, including degenerative spinal disk disease.

The book chronicles my effort to find the best possible physicians, my attempts to maximize the use of my health insurance, and my extended effort to obtain social security disability. The book also documents my effort to recover from multiple surgical procedures and improve my overall health.

My candid and personal story includes candid details of specific medical providers, including physicians, nurses, and medical office staff that misdiagnosed me or treated me with disrespect. I speak of my uncomfortable experience in the hospital, of my efforts to maximize my health insurance, and my frustration in obtaining emotional and practical support when I was home and incapacitated.

On the other hand, I cite many examples of physicians, nurses, friends, and others who provided me with excellent and nurturing care and helped me find the right answers along the way. I also cite the support of the Interstitial Cystitis Association (ICA) to help me find a roadmap for health and for helping me focus my thoughts to allow me to write this book.

Using my life experiences as a person with multiple chronic illnesses, I provide you with one hundred recommendations for taking control over your health care. Although many, if not most of these recommendations are simple and based on common sense, I believe that when I am not feeling well, I am sometimes emotionally unfocused and do not always make commonsensical and rationale decisions. During the years I was most ill, I wished there was someone who could have pointed me in the right directions when I was not feeling well and unsure how to get well.

At the end of the book, I recommend that you build a strong health management team, with you, the patient, as team leader, and with your primary care physician as your most trusted assistant. If you don’t take command over your health and health-care team, no one will.

Acknowledgments

I want to thank the many people who helped me find my way through the maze of physicians’ offices, hospitals, insurance companies, disability applications, and well-meaning caregivers. Without them, I would not have made progress in identifying, treating, and resolving my health issues. Without these people, I would not have had the vision, patience, and endurance to write this book.

I appreciate the staff of the Interstitial Cystitis Association (ICA), who helped me navigate the organization’s resources during the year after my diagnosis of IC.

The ICA is a national organization that promotes research, funding, and advocacy for the treatment of IC disease. The organization, located in Bethesda, Maryland, has a staff that designs and publishes a quarterly magazine, manages a website, lobbies for research money on Capitol Hill, promotes educational preprograms for patents and health-care providers, and manages a range of other worthy efforts.

The ICA gave me the tools for learning how to improve my diet, how to apply for disability, and how to find physicians and other medical professionals who were interested in and able to treat my IC. I am most grateful to the ICA for linking me with the Orange County IC support group. Additionally, I am delighted that the ICA highlighted my experience with IC and my search for viable treatment options in their fall 2010 ICA Update magazine.

I am indebted to the Orange County IC support group and to Jean Gardner and Bev Laumann, the women serving as group facilitators during the time I regularly attended the group. The support group provided me with invaluable resources about how to apply for disability, about physical therapy options, about which physicians in Southern California understood and know how to treat IC, and about the medicines, techniques, and strategies for coping with this disease.

I want to recognize the many physicians, nurses, medical assistants, and physical therapists who listened to me, treated me with respect and compassion, and helped me on my journey to wellness. I particularly want to acknowledge my physical therapist, Robin Christiansen, MPT, for providing me with compassionate and effective care and for helping me understand how IC may or may not be related to other physical ailments.

I thank Karen Twichell, author of A Caregiver’s Journey, a book about the practical and emotional issues facing the families of persons with illnesses and disease. Karen encouraged me to write this book as a first step in getting my message of patient empowerment out into the community.

Finally, I want to thank the many friends who helped me edit this book. Special thanks go to Brenda Martin, PhD, Linda Smith, Julian Levant, Paul Clark, Sheryl Roush, and Madelon Alpert. These friends gave me advice and perspective on how to organize my thoughts and how to get my book published. These friends also helped me improve the overall tone of the book and assisted me to improve my use of the English language as a tool to focus my personal story.

Chapter 1

MY JOURNEY FROM PRIME OF HEALTH

TO MULTIPLE CHRONIC ILLNESSES

Attention to health is life’s greatest hindrance.

—Plato

I was a single male, forty-nine years old, in the prime of health, and heading to Southern California. I had just retired as a Director of Finance and Administration from the city of San Francisco government, with a pension, money in my pocket, travel plans, and intent for two years of settling into the house I recently built. My long-term goal was to remain retired for two years and then return to work as a management consultant, a finance director, or as a program analyst somewhere in Southern California.

At that time of my life, I took my health for granted. Yes, I had experienced my share of nuisance ailments, including allergies, arthritis, and acid reflux disease, but never experienced a serious chronic illness or a life-threatening condition.

I expected that if I were to become sick one day, physicians, specialists, pain management staff, and other health-care providers would immediately diagnose my medical problems and would ensure I recover in a timely manner. That expectation was not always fulfilled.

Once I became sick, I thought my insurance providers would pay for all of my medical treatments. I also thought that all of the recommended treatment options and tests would be covered by my insurance providers and paid for. These expectations were not based on reality.

As a patient, I expected all of my physician bills to be correct and without error. I expected that the physicians I wanted to see would be willing and able to accept the insurance that I had. Those expectations were not met.

I thought that if I were ever to become sick and require hospitalization, the hospitals in the relatively affluent area that I lived in would provide me with quality and attentive health care in a pleasant and clean environment. At the time, I couldn’t know that that expectation would not be fully realized.

I expected all of the prescription drugs given me would ensure a swift and complete recovery from any illness. I assumed that all prescription drugs would be helpful, without significant negative side effects. That expectation was wrong as well.

I was partially wrong to make these assumptions and partially wrong to trust the local medical community to completely take care of me should I ever become sick.

During these past years, I learned that when I was not feeling well, I became vulnerable and sometimes helpless and dependent on the medical community to determine what was wrong with me and take care of me. Feeling weak and vulnerable sometimes left me passive and unwilling, unable, and not energetic enough to challenge physicians and others when they did not care for me or give me the treatment I needed.

Very often, I felt even more helpless and vulnerable because I had to wait weeks and sometimes months for medical appointments. I hoped that the long waits would be warranted as I would be cured as soon as I met with a physician.

Over time, I learned that I had to take control and manage my illness, treatment, and recuperation. In order to do that, I had to better manage my physicians, insurance providers, ancillary medical providers, hospitals, and the well-meaning caregivers who were there to help me after a hospital stay, or when I was not feeling well.

I am here to tell you that you can and should plan to do the same.

Over time, I learned that I had to become a team leader, working hand in hand with my primary care provider to find and manage available resources, including specialty physicians, to find the answers and strategies to overcome illness.

I am writing this book because I want you to learn from my experiences, to do a better job than I did, and to realize better results and sooner result than I did. I hope that the lessons I learned could help you get the care and attention you need.

I am not a medical professional. I am a regular guy who has experienced my share of medical challenges. I wrote this book because I learned the hard way that to get well in the most timely and effective way, I had to take the leadership role in managing my own medical case.

I am hoping that my story, my mistakes, my lessons learned, and my ultimate success in managing my own case will help you in taking charge, and in navigating your own pathway through doctors’ offices, hospital stays, and in coordinating the effort of well meaning caregivers.

My particular experiences will not be exactly like yours. We will have different illnesses, different symptoms, and different lifetime experiences. We will not be the same age, have the same genetic makeup, and have the