Cynthia Williams - Lost: A True Story of Navigating the Healthcare System Against the Tide and Into Gastroparesis

Lost

A True Story of Navigating the Healthcare System Against the Tide and Into Gastroparesis

Cynthia Williams

Copyright 2010 by Cynthia Williams.

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.

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This book is dedicated to all those
who have not found hope in the health care
system and to those who have overcome illness
despite the health care system

I also want to thank my husband, children,
mom, dad, and my best friends Patty
and Valerie for watching over me.

CONTENTS

I am two years old. I am surrounded by people I do not know. They are talking fast and touching me. I do not understand what is happening. I am scared. I keep trying to find my mommy but I can hardly see anything between all the other crisply dressed people. I hear someone say hurry, we are losing her. How could they lose me, I am right here. I catch a glimpse of my mommy. She is standing alone in the corner of the room. She is crying.

It is dark now. I am lost.

As I open my eyes, I see my mommy first. She looks so tired. I try to speak but my voice is so soft and my throat is burning. Mommy comes to me and gives me a big hug. She is crying again but this time the tears are of joy, not fear. I am in a hospital. The crib I am in is surrounded by a plastic tent. There is a soft swooshing sound of oxygen being circulated in the tent. All I want to do is go home and play.

I have asthma and I just survived cardiac arrest due to respiratory failure. This is the only time I experienced cardiac arrest but I have a lifelong journey in front of me, with asthma defining the boundaries of my abilities.

As a teenager, the years were tumultuous and rebellious. I was a strong-headed independent teen who clearly did not have the maturity or life experiences to make sound decisions. I chose friends that I believed I could trust but boys, well that was a different story. My closest friend lived right down the road. Her family structure was very different from mine. She lived with her mom and her older sister. Her moms boyfriend lived in the other half of the house but it could have been across the town for all I knew about him. They were a very open family. They talked about everything. Some conversations surprised me into silence, especially when they talked about sex. I was a naive girl trying to be worldly. I was barely treading water but acting like the captain of the ship.

Just like any other teenager, I thought my parents were overbearing and strict. I could not comprehend that they had rules to protect me. I thought they had rules just to make my life miserable. I rebelled. I dated the bad boy types. They did not come into the house and meet my parents before a date. They smoked, drank, and drove beat-up old cars too fast. I stayed out late, drank with them, and even tried marijuana and cocaine. At one point, either by the insistence of my mom or just as coincidence, my asthma doctor told me that smoking marijuana could kill me because of the relaxation effect and that I would not be able to struggle and overcome an asthma attack. I never smoked it again.

I attended a private school for the first two years of high school. It was an elite school, and a lot of the other kids came from really big money. There were these two brothers that I got to know as friends. One was a rowdy bad boy and the other was a stunning, well-mannered athlete. Their parents would pick them up for school break in a personal jet. Other parents were ambassadors, senators, and doctors. My parents owned the country store in the center of town. Although owning that store was a magnificent achievement and certainly something to be proud of, I did not see it that way. To me, we were the poor people and I was able to attend the school as a charity case. I had no idea how things really were. It never dawned on me that the school was expensive and my parents made the payments so I could have the advantage of an exceptional education. I wore fancy clothes as we needed to dress up to go to school. I never questioned the expense of the clothes. It was to me just the way things were. My dad drove old used cars, and I was embarrassed by that. We lived in an old colonial house on the main road in town. That was something I was proud of. Somehow I knew that the house was a prize and I was lucky to be there. I walked to school each morning. Well, more like strutted to school. I walked home each evening around five, because the school required sport participation after school. I did minimal homework because I had more important things to do, like hang out with my friends. I would skip classes or skip the whole day. My parents always found out so one would think I would learn my lesson. But I did not.

My parents took me to counseling after the first time I ran away from home. I was staying at the friends house that was just down the road. I could not at the time possibly comprehend the fear and anguish that I caused my parents. Not only had I run away but after being with me year in and year out watching me struggle and suffer to overcome multiple asthma attacks, my mother must have been in a state of absolute terror. What if something happened and no one around me knew what to do? But I, with my infinite teenage wisdom, thought nothing of it.

When I was a child, my doctor at the time told my mother that she had two choices. She could limit my activity and essentially have me live in a bubble, so to speak, or allow me to find my own limitations through trial and error. My mother chose option two although it must have been a difficult and heart-wrenching decision. For her it meant standing back and allowing me to become ill as I tried activities and found what I could and could not tolerate. For me it was empowering. I found I could do a lot of things like swimming, soccer, softball, and even some long distance running if the weather was good and I paced myself. I grew up believing there really wasnt anything I couldnt do. I was just like all the other kids.

At the same time, I ended up in and out of the hospital with asthma attacks. They came on for many different reasonsa cold, too much activity, exposure to dogs and cats, and even the change of seasons, although all doctors at the time told my mother the weather does not trigger asthma. But like clockwork I would be in the hospital in the fall as the days were warm and the nights were cold. I would again be in the hospital every January as the weather dipped into a deep freeze. This was such a curse as my birthday is in the middle of January. But the worst year was when I was in the hospital for Christmas.

That year was particularly bad. The asthma attack I had was severe and I was in the hospital for over a week. On Christmas eve my dad came to visit me. He told me that he saw Santa in the parking lot as he was coming in. He told Santa he would be happy to give me my presents as he was headed to my room anyhow. I believed him as I was only four. He brought me pop-together blocks and I played with them in my hospital bed for hours. As far as I recall, that was the only time my dad came to the hospital alone. He always came with my mom.

My mom was always there, no matter what. There were multiple trips to the emergency room late at night, on weekends and holidays. One Christmas there was an hors doeuvres of mixed nuts and raisins. I tried some and found out I was allergic to nuts. I had an anaphylactic reaction and scared the whole family. I was allergic to so many things that my mother had to eliminate all foods and start with just potatoes and slowly add new foods to determine what I was allergic to. That was definitely not a fun summer. But all in all, I managed to make it to adolescence.