“One Mans Quest to Survive!”
© 2011 Timothy W. Lawson, Provo, Utah
All rights reserved. No part of this book may be rare produced or transmitted in any form or by any means without written permission from the author.
Dedication Page of my New Book Coming out soon
I dedicate this book and my life to Nicole T. Lawson. For without her constant support, comfort and commitment to stand by my side during the most difficult times of my life, I would not have survived. For Nicoles tireless quest to find what was killing me even when to doctors claimed there was nothing wrong. To learn new and creative ways to make rice, and to her absolute and unwavering clarity of vision to achieve the one thing that all Celiac brothers and sisters strive to find; a world where we can live and not be forced to eat food that resembles dry sponge or cardboard with salt sprinkled on it.
For my beautiful and loving wife Nicoles' compassion and understanding of my pain, her patience with my depression and love that inspired me to keep fighting to live. I promise you, God as my witness that while Nicole was praying for answers to my illness, I was at the same time praying that God would call me home so the pain, sickness, depression, and overall feeling that I was alone would end. So to my best friend, my companion, my One and Only True Love, my Wife and Mother of my seven children I publicly say thank you for giving me the Hope to live.
To Mark E. Johnson friend, scientist, chemist, and the man through his feedback testing was the first to diagnose me with Celiac Sprue/Gluten intolerance. When first we met, Mark was sure I was dead man walking; I just hadn’t lain down yet. I was feeble, pale and pasty, on oxygen full time, walked with a cane, had extreme difficulty in expressing myself in a coherent fashion. I had trouble remembering simple words, phrases, or thoughts, that to the normal person was be as effortless as breathing. I struggled to stand or sit for longer than 10 minutes at a time. The murky and dark clouded pools I once called my brain had seemed to have abandoned me for the first time since I was slapped on the butt by the Doctor when I was pulled from my warm comfortable womb inside my mother and force into this world. Mark stood by my side along with Nikki, never gave up. Research what must have been hour upon hour for the elusive answers of how to save my life. Through the miracle of science, technology, ancient Chinese medicine and his tenacious drive to solve this riddle I now am on the path to healing, all be it still fraught with pain, lulls, and challenges.
To Dr. Umaprasanna Karnam MD, GI who I went to as the renowned top in his field of Gastric Enterologist in the State of Utah. Once I knew what to look for (due to Mark E. Johnson) Uma was able to medically determine a prognosis, treatment plan and a long term solution that would be preferable over death. Uma’s first words to me when we met were as he took my hand cupped with his, and with all the sincerity of a human being, softly said, “Don’t worry my brother, we will get you better!” Wow! What a novel approach. He was offering to heal me, not give me medication, send me to a physiatrist, or send me to yet another highly educated but still ignorant intern that neither cared or understood what I was going through. For two and a half years and test after test, the scope narrowed till we at long last arrived to the point that just medical science and tests could take me no further.
To Utah Attorney General Mark L. Shurtleff: My dear friend and sounding board of whom I can only surmise I abused with my constant complaining of pain, self pity, and depression. The tenuous times of figuring where to eat lunch when most of what was on the menu made me sick to even think about, much less eat. To most, in this great State of Utah, Mark is the strongest Attorney General to every ware the mantel of AG. They see him as the “Shield of Truth” against injustice, the voice of the faceless masses and the “Sword of Justice” for the people’s right to live in a free Democracy. To me, he was my dear friend, my sounding board and my confidant that always listened, always cared, and always tolerated me. One of the most difficult issues as a person with Celiac is the constant pain, illness and challenges that face us. I felt so alone and isolated. It was so important to keep a positive attitude while I began to recover and get my system restarted. What a comfort Mark was when I couldn’t remember simple details and he would make a self effacing comment to take my embarrassment away. Or, when he would call just because he had a feeling I was down in the dumps, when I was going through surgery after surgery to rebuild internally what the Celiac had destroyed. And most especially to put up with extreme mood swings as I struggled to get my body back into sink. If I were a doctor I would prescribe to all that have celiac or any illness to have a friend like Mark Shurtleff by their side.
To Dr. Glenn Blake PHD who I met years later as my health started to slowly return. I shared with Glenn my experience of this horrific disease call Celiac Sprue. I told him of my wavering physical and mental health and the tumultuous upheavals that it had caused me. Glenn simply listened and then said, “You should write a book about it!” “And, when you get it done I will publish it for you!” It never dawn on me that there were other people out there going through the same roller coaster peaks and valleys of the celiac experience. Some in the beginning stages, some in the middle of the nightmare and others dead from years of misdiagnosis. Glenn showed me how self pitying I had become, selfish and self centered in thinking that I was the only one that was going through this. Tens of thousands of Americans struggle with this disease. Tens of thousands of Americans have died from mis-diagnosis, never knowing why they were suffering and how to stop it. Glenn put a mirror up to my face and showed me that others that are in the beginning of the celiac experience or the middle of it deserve the right to know that they are not alone. They deserve to know, what I have found out, what I have learned, and how I survived to live and fight another day, week, or decade.
What a blessing to have all these people in my life to support and gird me up on my most dire, sad and feeble point I never thought I could be at.
Now was the time for me to stand, have faith, believe in myself and choose to live again. But, more than just to live but to share with everyone the small and simple things I learned along the way, that made my life more focused and clear rather than like Vincent van Gogh Painting all twisted and distorted. With my wife Nikki, the Scientist Mark Johnson, The Doctor Uma Karnam the friend AG Mark Shurtleff and my personal Life Coach Dr. Glenn Blake, I found the will to pull myself from the puddle of self-pity and what had become hell on earth for me to start the next great adventure. To share my story in the hopes that others won’t have to go through the pain and suffering I did. For me now with the white lesions in my brain, the cyst that is growing and all the pain, my fate is written.
According to my doctors the damage of being misdiagnosed is now terminal which I guess is not good. The Doctors said, “Well Tim Your screwed. The Damage done in your body because you were misdiagnosed is extensive, irreversible, and progressive!” It was the Progressive that caught my attention. When I asked what they meant they simply said, "there is nothing we can do to stop the chain of events in your body." "You will continue to be in pain, it will get worse as time goes on and it will kill you!” It may be to late for me to live a normal life, but, who wants to be normal anyway?
To start this story out I chose to have a person that knew me before the Celiac and after I became an echo of the shadow of the man I once was. I asked my beautiful wife Nicole to write our story so you have both a sense of what she went through as the spouse of a celiac person and the celiac person as well. The disease is devastating to more than the person who has it. It permeates throughout space and time and touches other in ways you can only imagine if you were asleep having a nightmare.
It is not my intention to give this disease a sinister soul of its own. However, the far reaching affects and crippling nature of this disease pales in comparison when our most trusted allies in health care, “The Doctors” misdiagnosis it and people die never knowing why! If you or someone you love has an illness that can’t to this point be explained then please, read this book or give your loved one a copy. It may be too late, but, at least they will know WHY!
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