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Doctors: Bound by Secrecy? Victims: Bound by Pain!

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Hooray! The book is complete and has made its debut. The questions and comments are already coming in. First, cheers to all who have given the story a big thumbs up! I'm very thankful for Melissa's courage to allow her mom to "put it out there" for all the world to see!

Knowing so many others suffer from the painful condition of Adhesion Related Disorder, a book of this nature (in my opinion) is way overdue! Unbelievably, Melissa suffered fourteen years in agonizing pain due to a condition that has been cloaked in silence among the medical world. When we finally uncovered the truth behind her debilitating condition, I became determined of mind that no other little girl suffer as my little girl had suffered. 

Remarkably, when we finally penetrated the infuriating medical fortress that had insisted Melissa must succumb to a life of pain, her condition was corrected in a mere FOUR HOUR surgery!

Doctors: Bound By Secrecy? Victims: Bound By Pain! lifts the veil of silence from an illness that is widely known among the medical community, yet hardly known to the public at large.

Unfortunately, just like Melissa, victims of adhesion related disorder often spend years being treated for illnesses they do not have (misdiagnosed), and/or being forced to seek out doctor after doctor in an effort to find someone who will listen to them. The most common and insulting thread that remains strong and unbroken among sufferers is the many physicians (even specialists) who quickly sum up the adhesion sufferer as a person who is "depressed;" totally negating the fact that these people are in real pain. 

Doctors: Bound by Secrecy? Victims: Bound by Pain! is a story that, at times, was difficult and painful to write. With each click of the keyboard I was transported back to many painful moments and relived those moments as if they were all happening once again. I knew the writing writing would also bring pain (once again) to Melissa, my husband, sons and youngest daughter--a pain that all of us (especially Melissa) have wanted to put behind us. This is one reason I added some of our humorous incidents into the story, as anyone who has been dealt such a hard blow from life surely needs times of escape. Knowing Melissa would read the book, as told by her mom, I dreaded her reliving the pain all over again, therfore I sprinkled the book with some of the moments that caused us to laugh so hard our sides ached. 

I've been asked if the book was hard to write. Painful, yes. Hard, no. Honestly, the words came fast and furious during most of the writing. When it was all done, I read and re-read. There were many things I wanted to remove from the book, but there was a nudging inside telling me to leave it.

I have a good friend, Mark, whom I admire and trust. I handed him the manuscript and allowed him to be my compass. He spent a few days reading every word, making a list of notes, and then called me up. When I went out to meet with him, I was nervous. It was as if I had handed him my soul and I just knew he was going to rip it apart.

He didn't.

He spoke from his heart, sharing thoughts about how the story caused him to reflect on things in his own life. He was honest, kind and empathetic. Then he told me, "I laughed, I cried, I laughed, I cried....and...I think you need to remove this one portion!"

I took his advice and removed an entire chapter from the book. This man, who knew little about our family, gave me an invaluable gift by his extension of openness, kindness, concern and wisdom. Thanks, Mark.

Though there are passages and chapters in the writing that I (or Melissa) may be judged harshly for, the story is what it is. Take it, read it, sift it, throwing away what you don't like and keeping close to your heart the things that you do. 

© Karen

*Note: Doctors: Bound By Secrecy? Victims: Bound By Pain! can be purchased through paypal (click on right hand side of blog), or at www.amazon.com. 

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Comments

I feel very fortunate to have received one of the first copies of this wonderful book. I consider it an honor to be allowed inside the very personal lives of the Steward household as they struggled with this sickness. This book was informative, heart breaking, inspirational, and eye- opening. Karen Steward made me feel like I was right there with her as she and her family came to grips with this life long illness. This family's strength and determination should be a model to us all. I laughed. I cried. I laughed and cried at the same time. A must read!

Unbelievable! It is done and it is great! You have shown us your live and opened your heart to help many others so they don't have to suffer as much as your family and especially Melissa did. Thank you for sharing and being so courageous!

A book that finally tells the truth about the on going illness of adhesions. Well written and a true page turner. Bravo for Karen Steward and her daughter Melissa for sharing this unbelievable and complelling story with us. Doctors:Bound by Secrecy? Victims: Bound by pain will hopefully change the way doctors treat their patients. I laughed and cried from start to finish. Congratulation Karen for "Shouting from the roof tops."

I can't believe the book is really finished!
I am so proud of you mom for writing this book,I am excited knowing this book offers hope to all ARD sufferer's.This book speaks all truth to my illness and everything we went through.I think the book is very well written,I am so glad it tells truth to the core!!This is a book about my life and all that me and my family went through for years with this hidden illness,I am very proud to say it was written exactly as it happened.Mom you did a great job!!This book makes you cry,angry,outraged,but most important it makes you laugh and feel hopeful. I Thank God for my mom who never gave up and wants to help other people who are suffering with this hidden illness!
Melissa Steward

Its time for the world to see the hidden truth about ARD sufferers. I KNEW in my heart this book would be special. Thank you mom for NEVER giving up hope with our sissy. You gave me my sister back! You are the true backbone of our family. You STAND UP for what you believe in and you NEVER back down till you TURN EVERY STONE. Praise God for moms, fathers, daughters, brothers, grandparents or just friends who will stand up and not back down-who will be the voice for the weak when the weak is unable. NEVER GIVE UP FAITH! My sister is OUT OF BED LIVING LIFE AGAIN!!! HALLELUJAH!!!
This book will be a turning point for SOO many people. THAT ONE LAST STONE THEY WERE LOOKING FOR! Your crown will be waiting for you in heaven, mom.
I love you

I am so glad that someone has finally written a book about this awful disorder. I am 25 and have been suffering with ARD for 2 years now. Please visit my blog to read my story.

Thanks again!
http://ergowrite.blogspot.com/

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DISCLAIMER

  • The information found on this website is to share the personal story of my daughter's trying journey with Adhesion Related Disorder. This website is designed solely to: inform, educate, and shatter the silence that surrounds the illness of adhesions, or ARD (Adhesion Related Disorder). The postings within this site are the opinions of the author and/or guests who post here. No content of this website should be construed as medical advice. This site does not provide medical advice. Please consult your physician for all matters concening physical and mental health. 3/14/07
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