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Inspirational Stories for RSD/CRPS
Inspirational Stories for RSD/CRPS
Inspirational Stories for RSD/CRPS
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Inspirational Stories for RSD/CRPS

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This Inspirational Story Book for Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS) is to help inspire, educate and bring awareness to the public about the challenges we face with our illness. The courageous people have told their story to help others find ways to reinvent themselves through their stories. We inspire to educate others about our trials and tribulations we go through. RSD/CRPS is one of the most painful illness there is in the world. Five percent of all injuries end up with RSD/CRPS. By bringing awareness we hope to encourage clinicians to find a cure and find the empathy that is needed in order to give proper treatments. Our illness is called the "Suicide Disease." In the back of the book you will find a story of one person whom's challenges were lost. By putting his story with the inspirational stories we can not forget the challenges that have past in order to have inspirational stories. My goal is that we as a community will come together and help each other find ways that may or may not help one another but at least try. First and foremost I want others to know that they are not going through this illness alone. That there is a support network available. All You have to do is reach for it. The only way we can find encouragement and support with this illness is to speak out and not be silent. I hope that you all will find this book as inspiring as I have.

LanguageEnglish
PublisherMaria Guerra
Release dateNov 27, 2015
ISBN9781311348739
Inspirational Stories for RSD/CRPS
Author

Maria Guerra

Money raised from this project will be going to RSDSA to help raise awareness for doctors and clinicians.Former Life: I went to school to attain my dream for Law Enforcement. I was in Martial Arts (Tang Soo Doo). I contracted CRPS in 10/11/2011 I stepped off a stair and tore a ligament off my ankle bone that changed my life forever. I was told I had the world’s most painful disease Called Complex Regional Pain Syndrome (CRPS). Since then, I have had to learn to reinvent my life. God has blessed me with this illness to do this. I have become an advocate and opened a prayer group and others on FB. “I can do nothing without HIM” (John 15:4-6) God is my Inspiration and Strength. I could no longer pursue the career I had worked on for seven years. I am a mother and a grandmother. My family struggles with the complexity of CRPS (complex Regional Pain Syndrome) as do so many medical professionals. I compiled an anthology as an advocate for CRPS Awareness. To support many warriors needs. I also do interviews with others called "Let Your Voice B Heard" with this illness to help others cope with their illness and bring about education. I have created groups to help those in need with Chronic Illness. I am a student of the One True God to seek HIS Face and help educate others on what I learn.https://www.facebook.com/CRPSHopeAwarnessExperiences/

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    Inspirational Stories for RSD/CRPS - Maria Guerra

    1

    LETTER FROM THE EDITOR

    What a journey editing this book has been for me!

    I have met so many people that touched my heart through their stories. I have seen success and failures; hope and heartbreak. I have witnessed, though the stories, a medical care system that is seriously inadequate, if not totally broken. I have seen families and friends support, as well as turn against, the victims of the illness of Chronic Regional Pain Syndrome (CRPS), formally known as Reflex Sympathic Dystrophy (RSD), as well as other and related disorders.

    Employers do not seem to understand the ramifications of the condition and employment is a difficult, if not impossible, task. Mobility is either reduced or eliminated and once independent people have been reduced to requiring caregivers to perform even the simplest tasks. Transportation that formally was easy has become difficult. Sleep and eating patterns are erratic; pain management is difficult; family life as you once knew it is gone. There are new rules now.

    Personally, I have been a caregiver for a CRPS victim for four years. When the accident occurred, I did not think much about the injury until it did not heal. Like many of the contributors to this anthology, I was in for a rude awakening! I learned, as a caregiver, I am not alone just as the victims are not alone. I have learned many things along the way and discovered there are many more to learn.

    I was awakened to a vast support network administered mainly by victims! Amazing! The community cannot seem to do it; the medical support cannot seem to do it; but you guys can. Each and every victim has an important story to tell and there was not one which I did not gain something positive. The further I read stories, the more interaction between victims I seen and understood. The faith, dedication, and tenacity displayed, in some way, by every story I read literally choked me up and many brought tears to my eyes. I often thought ‘what would I do if afflicted with CRPS?’ Honestly, I do not know if I could display the courage and positive outlook presented in the stories I read while working on this project.

    I offer my heartfelt thanks to each and every contributor for sharing their inner-most feelings in the hope that their story can bring some sort serenity and comfort to another human being. Many of you have successfully worked to reinvent yourself and some are still trying desperately to get there. I encourage each of you to continue your fight and faith that someday this horrible disease will end its hold on humanity. Each contributor has gained my respect and support. I offer my prayers to all, whatever your denomination may be, that our Lord will heal and show his mercy. Maria, I thank you for allowing me to participate in this project.

    Neil A. Mipe

    2

    Living with Chronic Illness

    by Janis Mason List

    Life is so full of ups and downs, uncertainties, and disappointments. Pain hides behind smiles, and tears streak cheeks behind closed doors, so no one can see. Struggles of fear, hopelessness, helplessness, and worthlessness run rampart for those who bear their secret battles…

    Shame…for not controlling the animal that possesses the body that they once did. Looking out the window those who suffer and fight their demons wonder why? Wonder what if?

    Dream of the miracle that may never come…

    Guilt is overwhelming! Should have done this! Didn't do that! Missed that event! Didn't carry my weight! This illness is costly. It’s a burden on spouse, children, friends, & others. I'm not the person that I was… wanted to be… may never be again…

    Wondering always, will it end? Will I be pain free? Will anyone really understand? Will I ever have my life as it once was? Will I reach the goals on my bucket list? Will there be life WITHOUT regular doctor appointments, pills, tubes, extra rest, special meals, and a job again? Will my illness NOT be the subject of conversation?

    … And GUILT! We should be happy right? Smile! Act positive! Quit complaining already! Fake it until you make it! Become the best actor ever! Walk tall, hold your head up, and never complain! Act like you're fine and suck it up already! Don't you know that others have it worse? Why are you feeling sorry for yourself? You could have this illness or that disease! Something more severe…Why don’t those comments make anyone feel better?

    Each day passes. The Sun rises…it falls. Moments of each day bring joy and smiles to lips. Although small, they are to be cherished and savored. Each day is one more in which to live to its' fullest, not one thought as dying. Perspective will make or break each if us. Our minds control how we define each day.

    I choose to relish the smallest memories of my life right now. Viewing photographs of the past is a time to relive the best days of my life. Each day I’m embracing a story deep within my heart. I’m missing the days of youth, children growing up, vacations that seemed endless, and loved ones who are gone!

    Gazing at the rise and fall of the sun each day is a time of beauty when I can observe the glorious ball painting the sky with fire… oranges, yellows and purples…

    I’m missing the days when I could cradle my children. The kitties will have to suffice, now.

    I light candles for the vanilla aroma; no special day needed… just because. I buy flowers because I admire them and they're beautiful to photograph…

    And I do dance when no one is watching! Life is what you make it! Live it as if it is your last day with no regrets.

    LOVE. FORGIVE. FORGET… But never give up the fight, whatever it may be!

    Preface

    Life is full of challenges. As a child you expect your parents to comfort and protect you. Some of us get this and live the fairy tale life. Me? I have been fighting since the day I was born. I first need to share a little about myself. This is the truth; the real story behind who is Maria Guerra? My first name is Dawn but I like to be called by my middle name, Maria. My mother named me after the character in West Side Story. I was a child from a rape victim. I know that my mother loved me but every time she looked at me I could see anger in her eyes. I felt it every time she beat me with the nylon spoon on my hands and body. I never knew exactly why until I got older. I was always questioning why and what I did so wrong. I suffered through many forms of torture as a child. The abuse I grew up with was a whole different story. I lived from home to home and was raised up in the military. I was adopted and lived my life on both sides of the fence.

    My life was very complicated growing up. One day I will write a book about it and maybe even one about domestic violence (DV). I married and lived in domestic violence for 10 years until we divorced. Even got into drugs. I went to school for Criminology and Criminal Justice and graduated magna cum laude. I woke up one day and wanted to make a change in the world and a better life for my children. Law enforcement meant everything to me until one day my dream was stripped completely away from me. Everything I worked so hard to achieve was gone and I thought it was the end of my life. My goals, outlooks, and directions needed to be changed.

    How was I going to reinvent myself? Through God. Through Love. I never knew how cold and hard my heart had become until I was blessed with this illness. Yes, the illness blessed me! God taught me how to appreciate life. God changed my life and taught me to care about others rather than only myself. This is why the Inspirational Stories were compiled. I wanted to create a tool for others to use to be able to wake up to or when they are depressed to pick up and read. Imagine the power of learning and receiving inspiration through others by sharing their experiences. We need to let others know that YOU are NOT ALONE! Many others are feeling the same thing that you are feeling: the helplessness, loneliness, and not knowing what the next day will bring. We must understand there is someone out here that understands what you are going through too. See, just because one person with CRPS has your symptom does not mean we all feel the same way. We all feel different and have different symptoms and yet we are the same. That is why it is called COMPLEX Regional Pain syndrome.

    Our illness isolates so many of us. We can't be around the noises or bright lights or take long rides because of the vibrations in the vehicles bother us (vertigo). The electrical impulses from storms make some of us scream. The wind from you walking by hurts us and you are so unaware of the effect. We cannot stand or sit for long periods and in some situations cannot find comfortable seating. The clothes that we wear hurt us so many times we are wearing practically nothing and this causes isolation. The heat in our room in winter is such a high temperature that no one comes to see us. Many of us are bedridden. This illness is referred to as a suicide disease. Depression is another battle that we face with this illness. I wanted to give us another tool in life to use to help us through our pain by compiling our inspirational stories together to gather our community to help one another. If you are reading this and don't know anything about CRPS/RSD, you will find more information at the end of this book on how you can become educated.

    Through God there is healing and peace. I am here for anyone that ever needs to talk. God never left me and God never gives up on you. Through stories of determination and attitude you can succeed. How would you like to help spread CRPS awareness or help others by sharing your inspirational story?

    E-Mail YOUR Story TO: RSDCRPSInspirationalStories@yahoo.com or

    www.facebook.com/InspirationalStoriesForCrpsRsd

    INSPIRATION is defined by the Encarta Dictionary as Stimulation for the human mind to create thought or to the making of art. What a powerful declaration! Imagine what we can accomplish if we can actually stimulate the minds of others to create the positive atmosphere that creates the art of healing. WOW! Author and motivational speaker Jane Rubietta, author of better than a dozen inspirational and motivational books, audio, and brochures, which is internationally recognized as a leader in this area, states that Someone may have stolen your dream when it was young and fresh and you were very innocent. Anger is natural. Grief is appropriate. Healing is mandatory. RESTORATION IS POSSIBLE!

    We are all members of the CRPS community, as well as related areas. This affiliation did not happen by choice, but here we are—all together—all devastated in one way or another—and all trying to find a way to successfully cope. Our lives, without warning, have been turned upside down, inside out, and torn apart. Everything changed in a nanosecond. Inspiration is so very important to CRPSer’s; whether you are an old timer or a newbie. There is not a time when each of us has not wondered why we are continuing. What is the future? Where are we going? What can we do? Poet John Donne, around the late 1500’s, penned a poem No Man is an Island. How true it is—there is strength in numbers and we are our brothers’ keeper. The human spirit must be fed in order to grow strong. Believe it. Live it.

    The inspiration stories recorded here are the light at the end of the tunnel that we all NEED. There are thousands of success stories out there as well as many failures. Success stories of how you survived or beat the odds are so very important to share. Every day is a new challenge and a new story.

    Failures are never in vain, but bring out the desire to succeed and not fall prey to similar circumstances. Failures, as well as successes, need to be viewed as an entity to inspire us to restore. It does not matter how you are affected, directly or indirectly. Every person that comes in contact with CRPS, whether you have contracted it or someone you know or love has contracted CRPS, has a story to tell of how you have lived with it. CRPS not only affects the victim, but has lasting and devastating effects on friends and family. Life for all of us changes. The facts that we are here to write them are the stories of CRPS.

    There is no such thing as a story that is not worth telling. Life is made up of many stories, mostly personal. History is stories—one after another. The founding of this Nation is a book of stories. The Industrial Revolution is a collage of individual stories. Medical breakthroughs are stories we have built upon. CRPS is a story to be built upon and you are the construction crew. There is no story too small; no accomplishment too small; no story that should not be told. Do not allow those of us that have fallen to have passed in vain. We need to learn; to progress; to restore. Their stories are important to teach us how not to fail. How often we see a movie where the hero dies for the cause. Life needs to be built on love, kindness, and courage. This philosophy certainly is sharing and caring for and with others.

    Please submit your story in a PM to Maria Guerra or PM the site itself (Inspirational Stories). I am sure you have many stories that will help inspire others to continue the fight. Submit as many as you can; each will carry a message to at least one person. Maybe, just maybe, your story will make the difference in someone else’s life…one at a time. Inspirational Stories is about bringing hope & awareness for CRPS/RSD+. Honor a Family Member/Loved One/Give Our Respect to those we have lost. Whether you are a Crps'er/RSD'er, Caregiver, Lover, Friend, To Whom It May Concern - Be A Hero!

    During my transition of reinventing me, and of course you are always reinventing yourself, you never stop growing; this is life. The hardest words you will ever hear from yourself, let alone anyone else, are those right after you make that big, big jump into that transition: What am I to do with my life? Where do I go from here? But, you get up and start to search and do not quit! There will be someone there around the corner to help you make that transition, but you cannot give up on yourself. You have to do the work; no one else can do it for you. Then, you will find there are one or two people that will help you along your journey. Me, I was blessed with a few people; God was good to me. It took some time. Jim Broach from RSDA Reflex Sympathetic Dystrophy Association of America was the first person I meet for CRPS/RSD and he helped me make my transition in to finding some medical help for my illness. Next we have a few others that have made a huge difference in my transition to reinventing myself and would like to give some acknowledgment. Neil Mipe, Jane Gonzales, Barb Reilly & Dr. John A. Brooks II. Thank you all for your contribution to my life and helping make my transitions through my storm. I would like to say also that every author was asked the same questions and if they wanted to write Something About the Author.

    My purpose for this book was not to just compile others stories but to help us learn from one another. I would like to have us have something to turn to when we wake up and read for those days that the depression sets in and we think that we are alone. To have and learn tools that may help us achieve our goals and to create new ones. To see that depression and loneliness can be overcome through help and strength from others. To not forget those that have passed from their illness that we all have something to learn from and share even when death occurs. That our lives have meaning and validation even for those that have passed on. When reading these stories keep in mind they may be a couple years old. Some may have progressed, went into remission or worse.

    4

    Mentoring by the Book

    by Mary Jane Gonzales

    I was blessed to have, not one, but three mentors. Two of them were women; one was my age and one was older. Both women were Christian friends and pillars of their church, inspirational and exemplary. The older woman, who has passed on now, was my Sunday School teacher for a while and was like a mother to me. The other woman has been a close friend for thirty-five years, is truly like family to me, and has had the greatest influence on me.

    The third was a male Sunday School teacher. Seeing as I had no decent male role model in my life, he made a huge impact on me. Through him, I saw Christ-likeness in a way I had never seen before. It permeated his entire being. He loves the Lord and Christ shines through him in every area of his life…his character and integrity, his marriage and parenting, discipleship, finances, giving, joy, etc. In today's society of broken homes, when friends tell me they've never seen a happy marriage, he and his wife come to mind as what a marriage should be.

    All three of these people inspired me as they mentored me in my Christian walk and faith, which, as you know, affects all aspects of life. I could never have complete assurance of my future or live a life of pain without trusting God as I do. And that trust was developed through their mentoring, and the steadfastness I observed in their own lives. Bearing in mind, it was the Word of God and the work of God through these instruments that affected and helped form my faith and my life.

    5

    Living with Chronic Illness

    by Janis Mason List

    My story is a lengthy one, but I will attempt to condense the early years. I have been one of those people who seem to have always set high goals and standards for

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