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Sharing the Pain...The RSD Interviews

Sharing the Pain...The RSD Interviews

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Sharing the Pain...The RSD Interviews

Lunghezza:
185 pagine
2 ore
Pubblicato:
Sep 22, 2014
ISBN:
9781310136399
Formato:
Libro

Descrizione

In "Sharing the Pain...The RSD Interviews", an informative book that is sure to enlighten the public, Gonzales conducts fifty interviews of RSD/CRPS patients, giving readers a glimpse into the struggles of both the patients and their families. Their struggles will astonish you and their strength will astound you, as you read how they cope with chronic pain and debilitation of an incurable disease.

Pubblicato:
Sep 22, 2014
ISBN:
9781310136399
Formato:
Libro

Informazioni sull'autore

Mary Jane Gonzales is an author, poet and lyricist. She loves to write, and poetry is her passion. She also advocates for awareness of RSD /CRPS, a debilitating nerve disorder. Her works can be found at Barnes & Noble.

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Anteprima del libro

Sharing the Pain...The RSD Interviews - Mary Jane Gonzales

SQUATTERS

FOREWORD

Author, Mary Jane Gonzales, is an RSD advocate, having been an RSD sufferer for 28 years. This book, entitled Sharing the Pain...The RSD Interviews, is a great compilation of stories and poems written by RSD patients. This book will give the reader a great insight into how patients have developed their RSD, and how they have coped and lived their lives with this very unrelenting disease we call Reflex Sympathetic Dystrophy (RSD). Some patients in this book have developed RSD from the following types of injuries or surgeries: venipuncture (i.v. needle injury), broken bones, infections, crush injuries, falls, back/foot/hand surgeries, car accidents, and work related accidents.

Patients who are newly diagnosed with RSD, along with their families, will benefit a great deal from reading this book. The book will also give patients and their families the feeling that they are not alone in dealing with this awful disease. By reading these remarkable stories it will give the reader a sense that this disease is not in the patient's head and that RSD is a very real disease. The readers will feel a great sense of support in each and every story in this book.

As an RSD sufferer for over 27 years, I have seen a lot in my many years of helping other RSD patients and dealing with RSD myself. The main thing I have learned over the years is that we all have one thing in common, the chronic pain of RSD. I have seen how this disease can change a person's life in the blink of an eye, as it did to me after a car accident on December 7, 1985.

Another thing that I have learned from my mentor and best friend, H. Hooshmand, M.D., is that Truth is the only survivor when it comes to RSD. This book shows the truth from the patient's view of dealing with this unrelenting disease. As Dr. Hooshmand would say, most RSD patients know more about their disease than most doctors do. That is why every RSD patient should take the time to read this very informative book. Reading these stories will make you feel sad or make you want to cry, but they will also make you feel that you are not alone in this very small world that we live in.

RSD is a very difficult disease to deal with in life. People cope with RSD in many different ways. Some people deal with it through faith, music, support from another RSD patient, or family and friends. Having a book like this is a great tool to help patients and their families cope with the problems that arise from living with the monster we call RSD.

In conclusion, the purpose of this book is to help patients tell their stories, inform the readers that we all share a common bond through this awful disease and raise public awareness, as well. The readers of this book will learn that RSD can happen to anyone and lives can literally be changed in the blink of an eye.

Eric M. Phillips, President and Founder of

The International RSD Foundation (Lakeville, MA)

www.rsdinfo.com

PREFACE

I have thoroughly enjoyed this project and everyone who participated in it. I sincerely hope that our family, friends, physicians, etc. will gain insight and understanding of our disease through this book. God bless!

INTRODUCTION

IMAGINE

Could you imagine what it would be like

living day by day in constant pain?

Could you imagine staying up all night

wishing the pain would go away?

Could you imagine sitting all day long

with nothing to do except sleep?

Could you imagine crying every day,

feeling so alone, yet, you're not?

Could you imagine wanting to do things

that you once were able to do, but not anymore?

Could you imagine wanting to go for a walk

but all you can do is dream of it?

Could you imagine wanting to go away

only to find you can not go too far?

Could you imagine having limbs so big

that clothing or shoes don't fit?

Could you imagine wanting to bake

only to find you can't bend?

Could you imagine wanting to drive around

only to find you can't?

Could you imagine being bored everyday

for there's nothing you can do?

Could you imagine feeling like a puppet

for you're all wired up in your back?

Could you imagine maybe death is better

than having to live like this day by day?

Could you imagine the pain your family goes through

and how much it bothers you a lot inside?

Could you imagine friends turning their backs on you

for you can't do the things you once could do?

Could you imagine wondering day after day

why it was you who had to end up with RSD?

Could you imagine all the tears and pain

because no one believes you are hurting inside?

Could you imagine what my life is like

only to dream of these things?

Could you imagine? is the question.

Yet, no one has the answer.

So please take a moment and close your eyes

and put yourself in my place.

Think of the times you're not able to walk

for it hurts too much to move.

Think some more and just imagine

what your life would really be like.

I don't have to imagine any more

for this is what my life is like.

Copyright Lori Drummond

RSD INTERVIEW #1 - WITH NOELLE LOPEZ

HOW AND WHEN DID YOU GET RSD?

In March of 2001, I slipped and fell down a flight of stairs, causing an ankle fracture. Over the next three years, I had six corrective surgeries. After the last surgery, the expected recovery did not happen. I developed severe burning pain, swelling, and color changes in my left leg and foot. Suspecting I could be developing RSD, my ankle surgeon placed me in rigorous physical therapy and began the Neurontin protocol. Despite this, I did not improve. I was referred to a pain management specialist and anesthesiologist, who diagnosed me with RSD at the age of 24, on my birthday in February of 2004. Since then, the RSD has spread into my hand, arm, and upper back on the same side.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

RSD has affected my life in so many ways. I now live with unrelenting pain 24/7. It's like an annoying side kick that never leaves! I must plan my life out in advance. I have endured numerous Stellate Ganglion and Lumbar Sympathetic Blocks, medications with unpleasant side effects, grueling physical therapy, and spinal cord stimulator trial, surgery, and revisions. I now struggle with anxiety when my pain levels are high.

Finishing college, working, and having a busy social life are all things of the past. I've accepted that right now I can't do those things, but I never give up hope that I can do them once again.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

I have an amazing support system. First and foremost, my husband and best friend, Alberto. He is my rock. We met about eight months after my diagnosis. He's been with me through it all, and I couldn't imagine life without him. My parents, also, are a huge source of support for me. Anytime I need help with basic day to day activities, like grocery shopping, they are right there to help. My entire family and friends have supported me since day one.

I must give credit to my dog Bear; ninety pounds of pure, furry love. He knows when I'm flaring, and won't leave my side. Finally, I want to mention my pain management doctor. He is an incredibly knowledgeable and compassionate doctor who has provided me with excellent care since my diagnosis. I'm so fortunate to be surrounded by such caring people!

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

I am not a religious person, but believe in peace, love, and kindness. I do have hope that one day we will know more about what causes RSD, and better treatments, or even a cure, will be discovered.

HOW HAVE YOU REINVENTED YOURSELF?

I enjoy lending support to others with RSD, spreading awareness, and fundraising for RSDSA.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

If I were answering this question several years back, my answer may have been different. Today, after living with RSD for nine years, I can say a lot of positive things have come from this. I have learned to truly appreciate the small things, and let go of the negative in my life. I've discovered an inner strength I never knew I had. I consider myself an RSD Warrior. You have to be strong to endure what we go through on a daily basis. I have also connected with some amazing people through RSD support channels. One of the best things that has come from this is the strength I get from knowing I can persevere despite being dealt a very difficult hand. I've made it through things I never imagined I could (before my diagnosis).

WHAT THINGS DO YOU MISS THE MOST?

The number one thing I miss the most is the ability to be spontaneous. I no longer have the luxury to do things like go out to dinner or see a movie without planning several days in advance. When we do go out, I must make sure I have my medications, stimulator remote, comfortable clothing, etc. I also miss working. Although I do part time work mainly from a home office, it is not satisfying or what I had planned for my life. I've always had a job, even working full time in high school. At the time I got injured, I was a pharmacy technician and pre-pharmacy student in college, with aspirations of attending pharmacy school. Now, when I hear my husband or friends complain about long days or problems at work, I envy them. You never know how lucky you are or what you will miss until it's ripped away from you.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?

I want the general public to know what RSD is, and how it impacts my life and the lives of my family. I want them to know that I struggle every day and life can be very hard. Despite this, with the help of my support system, I can persevere, and have some semblance of a normal life. Finally, I would like everyone to know that I am strong and I do not let RSD or what it's done to my body define me. I am not a victim.

RSD INTERVIEW #2 - WITH PEGGY LINDSAY

HOW AND WHEN DID YOU GET RSD?

I got my RSD in my left arm after falling and breaking my left wrist. I had to have surgery and have a T plate and screws put in my wrist. The surgery went well but I overextended myself afterwards. I rotated my wrist and caused the ulna bone to splinter and the plate to loosen. This was followed by excruciating pain, swelling and cold temperature in my entire left arm.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

My RSD has affected my life in so many ways. I cannot do anything like I used to. I am having to relearn how to do things with only one hand, as my wrist cannot lift, pull, or push anything over 3 lbs. I also stay nauseous from all of the strong medicines that I have to take. I am already experiencing severe bone loss in left hand. My RSD pain is through my entire left side. The medicines that I have to take to somewhat control my pain make me have short term memory loss, confusion, balance problems, anxiety attacks, and I cannot even drive.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

Absolutely!! I tell my husband and sister everyday that I could not make it without them. I cannot imagine what my life would be like without the two of them. I am truly blessed there!

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

Absolutely again, I am nothing without God, but can do all things with Christ, and I call on him daily to overcome obstacles that I cannot overcome by myself.

HOW HAVE YOU REINVENTED YOURSELF?

I am still in the process of this. I learn every day that I am limited in ways, and all of the complications, that go with this disease.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

I look everyday for lessons throughout this journey but, thus far, all I can see is that God knew that it would take something this serious to slow me down.

WHAT THINGS DO YOU MISS THE MOST?

I miss my

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