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 who cannot stand up because of Intracranial Hypotension caused by a Cerebrospinal Fluid (CSF) Leak, those that cannot lie down from Idiopathic Intracranial Hypertension (IIH), those so incapacitated from Chronic Pain they cannot have a life, those maimed by Fluoroquinolone Antibiotics, and left unable to walk on their own for the rest of their lives, those who are too crippled by Ehlers-Danlos Syndrome (EDS) to hold a pen and write their own story, and finally, it is dedicated to those with Invisible Disabilities and Rare Diseases whom the Medical Establishment has forsaken. This book is your story, not just Karen's. It is the story that your health condition will not allow you to write. This is the story that you wish you could get your friends and relatives 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 myself I find peace by learning from Karen, help promote the creation of new treatment methods. Lobby for the removal of dangerous medications from the market and demand the Medical Establishment treat those with Chronic Pain 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.
Foreword from front of book
This glimpse into Karen’s own writings offer hints of the depth of her suffering, yet like many with chronic disabling illness, much of what she endured was not openly shared. Sadly, devastatingly, it is only after her suicide that a greater awareness of what she endured has come to light.
I never met Karen. I became aware of her story after she ended her own life. Her husband, Bob, has been tireless in raising awareness about the health issues from which she suffered.
She was being treated for spinal CSF leaking. My understanding is that she endured disabling symptoms for decades before a diagnosis. At times her suffering was trivialized or dismissed, at other times, she was met with compassion in the medical world. She learned to navigate the waters of our troubled health care system with variable degrees of success, like so many with chronic illness.
For those with spinal CSF leaking, despite frequent profound disability, the correct diagnosis remains elusive for months, years and even decades, as in Karen’s case. Even after a diagnosis is made, timely access to appropriate diagnostics and treatments is often far from optimal. The degree of suffering and disability is too often underestimated. The large gap between actual care and optimal care is what motivated me to co-found Spinal CSF Leak Foundation. By raising awareness, we hope to lessen such suffering. We can all learn from Karen’s experience. We need to.
Connie Deline, MD Co-founder, Spinal CSF Leak Foundation.
Text on the Back Cover of the Book
There are four parallel stories running through Karen's writings:
What it is like to live in Chronic Pain every day, the pain of systemic tendonitides caused by the Fluoroquinolone antibiotic poisoning from Levaquin® (Levofloxacin) and what it is like to be ostracized by family and friends to end up alone with no help, no support. Too constantly hear from doctors “that there is nothing wrong with you” “you are just doing this to get attention or pain pills”.
The idea behind this book is that if you see yourself in one of those threads that you can put this book into the hands of someone, family, friend or doctor and say “This is me!” in the hopes that they 'get it' instead of thinking of you as a crazy hypochondriac out to get attention or drugs.
If someone you know who has Chronic Pain gave you this book, they want you to understand, through Karen, what they are dealing with, possibly every moment of their life. What your friend or relative wants to hear the most from you after you've read what Karen had to say is “I believe you.”
Your brain is meant to be floating around in your skull and when it is not due to Intracranial Hypotension from a Cerebrospinal Fluid (CSF) Leak or the opposite Intracranial Hypertension (too much pressure), things are getting yanked on that were never meant to be yanked on, causing debilitating pain that the word 'Headache' fails to describe.
Karen's Journal is required reading at Duke University School of Medicine.
Foreword by Connie Deline, MD, Co-founder, Spinal CSF Leak Foundation.
If you have Intracranial Hypotension caused by a Cerebrospinal Fluid (CSF) Leak; Idiopathic Intracranial Hypertension (IIH); Chiari; Chronic Pain; Ehlers-Danlos Syndrome (EDS); Invisible Disabilities, Rare Diseases, Scoliosis or injury from Fluoroquinolone Antibiotic this may be the book that resonates with you.
“Karen's first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day.” - Reporter Savannah Barr, September 8th 2014 cover story of The Derrick Newspaper.
The contents of all the books listed below are exactly the same, only the cover colors and title vary.
Amazon will donate 0.5% of the price of your eligible AmazonSmile book purchases to the Spinal CSF Leak Foundation whenever you shop using AmazonSmile via the links below.
Select the Spinal CSF Leak Foundation after signing in to AmazonSmile.
AmazonSmile is the same Amazon you know. Same products, same prices, same service.
Support the Spinal CSF Leak Foundation charitable organization by starting your shopping at http://smile.amazon.com and using the AmazonSmile links below.
Buy book to support the Spinal CSF Leak Foundation
100% of the royalty from the purple cover book goes to the Spinal CSF Leak Foundation.
The cost of the physical paper book is $14.95, the cost of the Kindle version is $2.99.
If the book is bought from:
- Publisher directly the Foundation will receive $6.95.
- Amazon the Foundation will receive $3.74.
- Kindle Store the Foundation will receive $1.05.
If you need to buy in bulk to give away many copies to Friends, relatives and doctors, a version is available Publisher direct for $6.98 each. Cannot be made available from Amazon at this price.
77 cents of each book goes to support this site and to pay for giving away free books to doctors and others to raise awareness.
Kindle Edition $2.99.
INVISIBLE: Karen's Journey with Invisible Disability: How debilitating head pain and Levaquin (Levofloxacin) Killed Me is to support those with Hidden Disables or Rare Diseases. Pricing is same as the foundation version above. This version has world wide distribution via all possible channels available from the publisher.
Unless this is the title or world wide distribution that you need buy the purple one above.
Why so many books that are the same?
Why are there four books that look seem the same?:
When I first got the idea to turn Karen's Journal into a book I figured publish one nice color version for $7.99 and distribute it world wide then be done with it. Sadly I did not know anything about book publishing at that time. I've learned a lot since then.
Color books are significantly more expensive than Black&White books. Distributing world wide also adds to the cost. I had wanted the book to be cheap enough that people would want to buy an extra copy or two and give to their family or doctor.
So to do want I wanted I had to split the book in to a full color version that costs so much few will buy it and a low cost version that I hope is low enough to buy extra copies to give to family and doctors that “don't get it”.
Someone then told me that the book would reach a wider audience with a different title which is the red book cover. This book is available on Amazon and has every possible distribution channel, world wide.
I had wanted the royalties to go to the Spinal CSF Leak Foundation. Sadly the IRS would not allow that. A separate account was setup by the Foundation to keep the IRS happy which sells only the purple cover book.
I see people are selling the books at a discount, I do not know anything about that. Find it a bit annoying actually.
There is a short supplemental book “Karen's Most Intimate Thoughts,” that contain Karen's most intimate responses to questions raised in the book “Avoiding Wedding After-Shock or I like You Even Better Now That I Know You” by Charlie Michaels with Mike Brown. Alone the book is meaningless. In conjunction with this the other books above, it gives a window into Karen's Soul. Karen penned the words in her own hand between our engagement in August of 1992 and our August wedding of 1993. They were written shortly after her car accident when she had hope for relief from her Chronic Pain and before her poisoning by the antibiotic Levaquin® (Levofloxacin).
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 till someone is gone to want to get to know them…
Over the years some of her views changed as the pain relentlessly continued, causing her to evolve into the strong woman that I will forever love.
This book will be available in 2016 (finding it painful to work on ). As this book is based on page scans, it would be illegible on Kindle.
The books started out as Karen's: My Story found here on the web site.
The book has been heavily edited and refined since that was written. Sometime in the future, Real Soon Now, the book contents will be back ported to replace that so they are both the same.
These appendices are obscure things that Hubby and I learned on our journey together. They are here in the hopes they point you to some lesser known techniques for health challenges that will lead you to the great health that you deserve. They are not meant to take the place of direction from doctors in the Medical Establishment; Always study for yourself, be an informed patient, my involvement with the Medical Establishment as a whole did not end well.
Some of these were removed from the book to reduce page count. Cerebrospinal Fluid (CSF) Leaks Explained in the book was replaced with the more medically detailed version courtesy of the Spinal CSF Leak Foundation.
- Cerebrospinal Fluid (CSF) Leaks Explained. Please see note above.
Biography of Robert Paddock 'Hubby'
I was born with “The Knack”, per Dilbert[TM], and have been programming and designing Embedded Systems ever since. I am a American Society for Quality - Certified Quality Software Engineer, with background in Analog/Digital hardware system design and layout.
Designing low power 'Green' systems are now all the rage. I have designed Embedded Systems like these, that ran on batteries or other low power energy sources, such as Intrinsically Safe systems, for years. I understand the Medical Implants power challenges as my Dare-To-Dream Medtech Design Challenge 3rd place win demonstrates.
I worked for many years in a electronic Contract Manufacturing (CM) environment. I know what it takes to have a idea come in on the back of a napkin, and get a finished product out the door, from Bill-of-Material (BOM) to PCB. See my blog on the subject: Is there a rule of thumb for estimating the cost of getting circuit boards assembled?
My work for the Centers for Disease Control and Prevention (CDC)/National Institute for Occupation Safety and Health (NIOSH) Mining Division may be found in the these links: A Technology Review of Smart Sensors with Wireless Networks for Applications in Hazardous Work Environments by John J. Sammarco, Ph.D., P.E., Robert Paddock, CSQE, Edward F. Fries, and Vijia K. Karra, Ph.D. and http://www.designer-iii.com.
My nme is found in the First Edition of the uCOS-II Real Time Operating System (RTOS) book: “MicroC/OS-II The Real-Time Kernel; A complete portable, ROMable scalable preemptive RTOS”, and the wxWidget book: “Cross-Platform GUI Programming with wxWidgets (Bruce Perens Open Source)”.
My particular interests are in the area of requirements management and Software Safety. See my award winning web site on the subject at http://www.softwaresafety.net , and my blog http://blog.softwaresafety.net.
Now I am returning my interest to the medical tech field, one I helped start. It is my goal to bring better imaging techniques for finding CSF Leaks to the world via T-Rays (THz) a safer 3D Real Time alternative to X-Rays.
If I may be of some help to you or your organization with technology or speaking about any of the subjects raised in this web site or Karen's book please contact me at email@example.com or (814) 314-9158 .
Warnings for Leavaquin
How many people have actually read the nearly 67 pages of warnings for Levaquin?
Grab it before they move it or hide it:
Book's Facebook Page
The book has a Foreword not a Forward by Connie Deline, MD, Co-founder, Spinal CSF Leak Foundation.
I just love the English Language…
Book Distribution and Pricing
So that no one thinks I'm doing this for the money, I'm doing it to raise awareness, here are the actual prices enforced by the Createspace robots and the actual royalty The Designer-III Company, LLC received for each copy sold.
Currently this income goes to production costs and giving away a lot of free books to doctors and organizations to raise awareness.
|Title||Minimum Allowed Price||Book Price||Createspace Royalty||Amazon Royalty||Expanded Distribution||Kindle||Kindle with book|
|Blue Book||$39.92||$42.00||$9.65||$1.25||N/A||$1.05||35 cents|
|Red Book||$12.03||$14.25||$6.95||$3.74||89 Cents||$1.05||35 cents|
|Green Book||$6.02||$6.98||77 cents||N/A||N/A||$1.05||35 cents|