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About This Book

This book is not to memorialize Karen, rather it is to shine light upon the conditions from which she suffered and to help those she left behind.


This book is dedicated to those that can not stand up because of Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks, as well as those that can not lay down from Idiopathic Intracranial Hypertension (IIH); those so incapacitated from Chronic Pain to have a life; those maimed by fluoroquinolone antibiotics left unable to walk on their own for the rest of their lives; those too crippled by Ehlers-Danlos Syndrom (EDS) to hold a pen to write their own story and those with invisible disabilities and rare diseases that the medical establishment has forsaken. This book is your story not Karen’s, the one that your health condition will not allow you to write. This is the story that you wish you could get your friends relatives and doctors to understand.


I shared a large part of Karen’s life, writing this book has been a tear filled experience, I cry as I type these words. Help Karen and I find peace by learning from Karen to create new treatment methods, remove dangerous medications from the market and to change the medical establishment to treat those with Chronic Pain et. al. with respect and dignity.

Karen gave her life for this book,

please make something good come of that

and help change the world for the better for all.

Since Karen’s death many people have told me that they wish they had known Karen, or that they had spent the time to get to know her better. This book is one way that you can get to know her. No one knew how smart she truly was. Each of us is to quick to judge without spending time to learn the journey the other person is on. Karen has shown us all by her death that tomorrow is promised to no one. Do not wait until someone is gone to want to get to know them...


The cover photo is Karen’s wedding photo in 1993. She had hope...


There is one thing you will find that this book is not. It is not polished proper grammar and spelling, such as using the less common spelling tendinitis, but accepted, in place of the medical standard tendonitides. Karen always felt self-conscious about communicating in writing and in person. She was always studying ‘people skills’ type books. The errors in Karen’s writing have been left deliberately as she wrote them, they are a reflection of her state of mind at that moment. In addition, entries from Karen’s Journal that have no time stamp are from notes she made to herself. The exact date or time are unknown.


Dawn Lee gave an analogy I love to illustrate how CSF Leaks work in their book Called to Suffer about her daughter Maegan’s CSF Leak:

“... Pretend Maegan is an hourglass filled with sand. The hourglass is fine lying horizontal in the bed. Once the hourglass is ‘upright,’ the sand starts running out. Eventually all the sand is gone. With Maegan she is better lying horizontal. Once she sits or stands, the CSF fluid starts to leak out at a more rapid rate. When she had been ‘upright’ for a period of time, like the sand, the CSF fluid drains to a point where the pain is unbearable. We must calculate her time up by the second. Can you imagine? Can you imagine knowing the longer you are up the more sever the pain is going to get. You know it is coming. ...” Used with permission, see September 27, 2015 entry later in this book.


I want to thank Tambra Warner Sabatini for helping me put this book together. If she can sell ice cream in a snow storm, she can make your own book a reality.


Sincerely, Robert “Hubby” Paddock August 7, 2018.

Contents | Start | End | Previous: World Health Organization on Chronic Pain | Next: Foreword