In My Shoes: A Journey to Living Well with Multiple Sclerosis
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About this ebook
When people hear a diagnosis of multiple sclerosis, their reactions range from denial to confusion to all-out panic. Mary Monaghan Sypawka was diagnosed with MS in 1993, when no medications were available. Due to the lack of information about fighting the disease, Sypawka went on a personal journey to find out as much as she could. In In My Shoes, she graciously and realistically shares what she has learned.
There are many elements of MS that people "don't talk about." Sypawka tackles those aspects with grace and humor. She openly discusses her medicine injections, difficulties with public places, and her relationship with her husband. She lays it all out in the hopes of helping others get and stay smart about MS.
Packed with information about medications, resources, doctor visits, and adapting home and work environments to fit MS needs, this simple, uplifting guide does away with clinical, complex jargon and explains MS in a way everyone can understand. Whether you have been diagnosed or you know someone who has MS, In My Shoes is a must-have aid to understanding, treating, and coping with the disease.
Mary Monaghan Sypawka
Mary Monaghan Sypawka was diagnosed with multiple sclerosis in 1993. She and her husband live in Pennsylvania.
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In My Shoes - Mary Monaghan Sypawka
In My Shoes
♦
A Journey to Living Well with Multiple
Sclerosis
Mary Monaghan Sypawka
iUniverse, Inc.
New York Lincoln Shanghai
In My Shoes
A Journey to Living Well with Multiple Sclerosis
Copyright © 2007 by Mary Monaghan Sypawka
All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.
iUniverse books may be ordered through booksellers or by contacting:
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Because of the dynamic nature of the Internet, any Web addresses or links contained in this book may have changed since publication and may no longer be valid.
The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.
ISBN: 978-0-595-44446-5 (pbk)
ISBN: 978-1-4620-7934-6 (eBook)
Printed in the United States of America
Contents
Foreword
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
References
To my family and friends, especially Steve, Mom, and Dad
Words I try to live by:
We have one solid source of happiness in all our journeying—we can keep our hearts fixed on God.
—Catherine McAuley
Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.
—Dr. Seuss
I am only one; but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do.
—Helen Keller
Hope is the feeling you have that the feeling you have isn’t permanent.
—Jean Kerr
The only way to have a friend is to be one.
—Ralph Waldo Emerson
Foreword
This book began as a journal, reminiscent of one of those diaries I had as a kid. I just loved those little books, with their tiny keys. I remember I had a little red diary in which I wrote about my first crushes, details of conversations with my girlfriends, and complaints about getting scolded in school for talking too much. I could write to my heart’s content and then lock the diary, in hopes that I was preventing my four older brothers and everyone else from unlocking the book and finding out my secrets.
Like the contents of my diary, I kept all my MS secrets locked up, for many reasons. My doctor suggested that I use a journal as a way to release those pent-up secrets. I was astonished to find out that journaling was quite therapeutic. The writing helped me to express my thoughts and feelings, without the pressure of a clock ticking off the forty-five minutes of a therapy session or the difficulty I sometimes had with saying some things out loud to another person.
After I figured out that I actually enjoyed writing, my vision soon became to write a book that could be helpful, amusing or educational to others, who, like me, have multiple sclerosis. And, because my husband and I are geeks, we decided to take it a step further and parlay the writing effort into a Web site, with the same goal of helping people with multiple sclerosis or their friends and families through my personal experiences.
Thus, In My Shoes, and our Web site, www.livewellwithms.com, were born. The effort has been, and continues to be, quite a learning experience. It is not only cathartic, but my way of educating people about my real-bottom line, no-holds-barred-life experiences with multiple sclerosis. I initially planned on using a pen name, but decided against it when I recognized that a pen name defeated my goal of communicating honestly. I have chosen to use fictitious names throughout my writing in order to protect my family and friends’ privacy.
Throughout the course of my illness, I found that the majority of reading material relating to MS was often quite clinical, over my head or just plain depressing. I had so many unanswered questions like: What symptoms do other people with MS experience? How does the illness progress? How do they feel about having MS? How do other people treat them? How do they deal with everyday-life MS challenges?
After more than a decade of living with MS, I feel like a veteran! I hope that by sharing some of my pitfalls and coping mechanisms, it may provide other persons with MS and their families answers to some of their questions and suggestions for living well with multiple sclerosis.
1
My Black Suede Shoes
Ever since I was a little girl, I have always loved shoes. My friends and I used to play dress-up, and it always included a pair of someone’s old high heels. I remember my white, patent-leather Easter shoes. I had black, patent-leather Mary Janes, too. I remember the Christmas when Santa delivered go-go boots for me. Summer footwear included flip-flops and sneakers—and remember those wooden sandals that were supposed to feel good on your