TALES FROM THE DRY SIDE: THE PERSONAL STORIES BEHIND THE AUTOIMMUNE ILLNESS SJÖGREN'S SYNDROME
Imagine for a second what life would be like if for years, you searched for answers to mysterious physical symptoms that were so severe, you could no longer participate in the daily activities of your life. What your life would be like if not only did the medical community doubt your sanity, but you begin to question it yourself. For approximately four million people in the United States, including tennis superstar Venus Williams, this is often a reality because they have Sjögren’s syndrome; an autoimmune illness that severely affects the moisture producing glands in the body. It is difficult to diagnose and even more difficult to effectively treat as there is no cure.
Over the past decade, there has been a sharp rise in the rate of autoimmune diseases in the United States and the rest of the world. The National Institute of Health estimates that there are 23.5 million Americans who are affected by autoimmune disease, with Sjögren’s being the second most common of these diseases. According to the National Women’s Health Center, autoimmune disease is the fourth largest cause of disability among women in the United States. As the autoimmune rates rise, more and more women and men are looking to connect with other patients in similar situations. In my interactions with other Sjögren’s sufferers, as I have this illness as well, the common theme that emerges is the desire to hear other people’s stories and about how others deal with their illness.
In December 2011 Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjögren’s Syndrome was born. The 42,000 word book is a compilation of thirteen unique stories written by Sjögren’s sufferers from various regions of the United States and Canada. The book also includes information describing what Sjögren’s syndrome is, and how this book project came to be. In their own words, each contributor discusses their journey with this illness including diagnosis, symptoms and treatment, as well as how Sjögren’s has affected their families, careers, and personal lives. Their stories are a blend of fact and emotion describing the navigation of what can often be a frustrating and hostile health care system in their quest for wellness. The goal of this book is to bring forward information and hope to the millions suffering from Sjögren’s syndrome, as well as to those who suffer from the over eighty other autoimmune illnesses that exist today. This is a book that I wish was available to me when I was going through the hell of figuring out what was wrong with me and how to cope with it.
The book is complete and it includes a foreword by Steven Taylor, the CEO of The Sjögren's Syndrome Foundation. I have been approaching literary agents and publishers to pitch the idea for the book since October 2012. I kid you not when I say that I have written to well over twenty-five agents regarding this book. Unfortunately, it appears that there is not an interest in this type of book in traditional mainstream publishing. Meanwhile, these thirteen stories remain silent on my computer when they could be making a difference to the millions of Sjögren's sufferers around the world. It is my mission in life to get this book published as I am passionate about this cause.
I have decided to self publish the book through the company Outskirts Press. I am looking to do a well put together book that looks professional and polished. The money raised will be used towards the following: publishing of the book including copyediting, ISBN and copyright registration, Amazon Kindle edition, Secure Ebook edition, cover design, formatting, publicity assistance, and marketing assistance as well as several other features. The list of services involved in this package is extensive. Funds raised will cover the 5% fee charged by Kickstarter and the 3-5% payment processing charges that are required by Amazon. Money has also been allocated into the budget to purchase reward books and to pay for shipping to contributors. If you have any questions, please feel free to contact me. Thank you so much for reading and for your consideration of this important project!
If you need to contact me with any questions, my e-mail is: firstname.lastname@example.org
Risks and challenges
The book is complete and I am waiting for the funds to proceed towards the publishing stage. I need to make this absolutely clear: THIS IS AN ALL OR NOTHING VENTURE!! IF I DO NOT RAISE THE ENTIRE AMOUNT OF $7000, THE PROJECT GETS NO MONEY AT ALL and these stories remain in my computer. I see this as the biggest risk.
Let me mention this one more time: THE FUNDRAISING IS AN ALL OR NOTHING VENTURE!!
There I always a chance of a contributor backing out of the project however I have worked very hard at remaining in contact with all of them. Also, there are thirteen stories so the book is not dependent on one or two people.
Since I also have Sjögren's and complications from the illness, there is a chance that there may be a delay in fulfilling the obligations towards my backers. However I have family and friend support with this and I have given myself a reasonable amount of time in which to fulfill my commitments.Learn about accountability on Kickstarter
Why yes, yes I do!
The following is the introduction to the book which does a great job at explaining how the book came to be and what it is about.
Imagine for a second what your life would be like if every day, you had to carry a bottle of eye drops with you everywhere you went and you had to use those drops every hour; stopping what you were doing to protect those precious windows to your soul. Imagine for a second what your life would be like if every day, each single movement of your body produced agonizing joint pain and you could no longer participate in the daily activities of your life. Imagine for a second what your life would be like if every day, you struggled to catch your breath while walking or trying to climb a flight of stairs. Finally, imagine that you were so sick on the inside, yet appeared healthy on the outside, that people thought you were making it all up.
For approximately four million people in the United States, these thoughts are their reality because they have Sjögren’s syndrome (SS), an autoimmune disease which is often very difficult to diagnose and even more difficult to effectively treat. For those of us with this illness, life as we once knew it has changed. We have had to redefine what is normal for us and adjust our lives in a way that enables us to live as productive and fulfilling of a life as we possibly can. Sjӧgren’s syndrome, also known in this book as SS, is a chronic autoimmune illness first identified in 1933 by Dr. Henrik Sjӧgren. There are over eighty identified autoimmune illnesses. When the immune system works efficiently, it fights off disease and infection. In someone who has an autoimmune disorder, the immune system wrongly identifies healthy tissues as foreign tissue and subsequently and attacks it.
In Sjӧgren’s syndrome, a specific type of white blood cells in the immune system, called lymphocytes, does this attacking on the glands in the body that produce moisture. The result of this is dryness throughout the entire body. The most common symptoms associated with this illness are dry mouth and dry eyes however there is a wide range of disease involvement including but not limited to involvement of the heart, lungs, kidneys, nerves, muscles, joints, liver, pancreas, sinuses, stomach, intestines, blood vessels, and skin. The reader will see as each author tells their story, the numerous complications that can occur in the various regions of the body from Sjӧgren’s such as memory loss, nerve damage, and lung disease. Those with this illness also have a higher risk for developing lymphoma.
Nine out of ten Sjӧgren’s sufferers are women and the average age is late forties, although the illness can occur in both sexes and at any age, and although rare, including children. It is estimated that it affects approximately four million people in the United States and is one of the most prevalent autoimmune disorders.
Rheumatologists are the doctors who specialize in diagnosing and treating autoimmune disorders. There is no one single test to determine whether one has Sjӧgren’s but rather there are a variety of different diagnostic tools such as blood tests, eye tests, a lip biopsy, and imaging studies which when used in combination with a patient’s symptoms, can aid in making a diagnosis. However sometimes a definitive diagnosis is never made due to negative test results and a patient is treated as having SS based solely on their subjective symptoms.
There are medications used in an attempt to try and control some of the symptoms related to SS. The medications range from several different classes of medications such as eye drops for dry eyes to more potent systemic medications to treat symptoms such as joint pain and neurological involvement. Some of these medications are the same ones used to treat many other autoimmune conditions such as lupus and rheumatoid arthritis. At this time, there is no one specific medication designed and targeted to treat Sjӧgren’s.
There is no cure.
The idea for this book was inspired not only by my own journey through the maze of this disease, but also by the journey of other Sjӧgren’s patients. My journey, like many others that you will read about here, was riddled with a lot of fear and uncertainty. Although I have been blessed with a supportive network of family and friends, I often felt like I was stranded on a deserted island. Despite all of the love and support I was receiving, I did not know anyone else with Sjӧgren’s syndrome and therefore felt isolated.
My initial contact with other Sjӧgren’s patients came when my previous rheumatologist recommended the Sjӧgren’s Syndrome Foundation (SSF) website to me. Despite the fact that he suspected I may have the illness, he did not have the information I was looking for in order to alleviate some of the dryness and other organ related symptoms I was having. I was hoping that the SSF website could help me with that. I found an incredible wealth of information on the website but I also found information about their annual national conference that occurs every year. As luck would have it, the conference in 2010 was being held in Hartford, Connecticut which was a mere hour commute for me each way.
Although the Sjӧgren’s diagnosis was a suspicion for me and not a certainty, I decided to attend the conference anyways.This ended up truly being one of the best decisions I have ever made. Sitting in that conference room with all the other attendees made me realize that not only was I on the right track in thinking that I did indeed have Sjӧgren’s syndrome, but I was surrounded by people just like me.These were people who understood how I felt. The conference attendees all around me understood that Sjӧgren’s syndrome wasn’t usually just about dry eyes or dry mouth. They also understood what it was like to live with the chaos and the unpredictability of this illness.
As 2011 came around, I found my way to the Sjӧgren’s Syndrome Foundation Facebook page where I began to meet and build relationships with many of the members. What a relief it was for me to be able to communicate with other patients on a daily basis, either to ask questions or to learn from others. One of the members there happened to live in the same state as me which is Massachusetts. She told me about a support group in Boston hosted by the Sjӧgren’s Syndrome Foundation. I had seen it mentioned on their website but did not realize that it was an active group. I also had some reservations about getting to the group as Boston is at least an hour and a half away from me and that was without traffic. It was in the downtown area of the city which also meant that parking and getting to the entrance of the meeting was probably not going to be as easy as parking in a lot and walking fifty feet to a door. Parking in downtown Boston usually requires a bit of effort!
I did decide to attend a meeting in October 2011 and now I attend the meetings as often as I can. The meetings are oftentimes structured presentations that address various issues regarding the illness. However there is plenty of time to network with other patients during the meetings and there is also occasionally a meeting held where it is more of an interactive support group. It is a very powerful experience to attend these meetings. Being able to share tips and strategies for coping with this chronic illness on a daily basis is invaluable. Also of importance is the opportunity to know that someone else has been there.
Someone else understands.
Because of the experiences I have had with the Sjӧgren’s Syndrome Foundation support group, the Facebook page and a list serve e-mail system; one thing became strikingly clear to me: the theme of the importance of peer support and unity in battling this disease. At this same time, I was also writing and maintaining a blog called Thoughts and Ramblings on Life, Love, and Health. It had started out as an outlet for me to share my writing and helped fill the long days when I lost my job due to my illness. I write about a variety of topics but ultimately end up writing a lot about what it is like to live and deal with a chronic illness such as Sjӧgren’s syndrome. Since starting the blog, it has grown bit by bit and has reached other people affected by SS as well as other autoimmune illnesses. I receive comments and personal e-mails from other patients asking questions about my experiences with the illness and they also share their own experiences.
One day in the fall of 2011, the idea hit me. What if there was a book that compiled some of these experiences all into one place? What if we shared our stories? Storytelling can be such a powerful experience both for the reader and the writer. Writing our personal stories about our experiences with Sjӧgren’s syndrome is an opportunity to share information and let others know that they are not alone. It is a chance to inspire other people who struggle not only with Sjӧgren’s or a chronic illness, but with any obstacle in life.
So I started by writing my own Sjӧgren’s story and by the end of getting my story down in print, I realized something. The writing process was therapeutic for me. Like so many other stories you will read in this book, parts of my story were often ones of frustration and discouragement and being able to release the story on paper, well on computer really, gave me the chance to sit back and look at all that had happened to me. It validated my struggles. It validated my strength and courage.
The problem was, I had never undertaken a project like this before or even written a book for that matter. Sure I has developed this blog and immersed myself in the writing world, but a book? The idea seemed so far out of reach to me. In addition, I didn’t see how I could attack such a formidable task while dealing with so many health problems. There was also the issue of finding other people who would be willing and able to commit to a project like this because without other people’s stories, there would be no book. Some of the complications of Sjӧgren’s syndrome and the medications that can be used to try and manage it are difficulty concentrating, memory loss, and brain fog. There was also going to be issues around physical limitations and pain regarding sitting at a computer or laptop. I knew it was going to be exceptionally challenging for those who would agree to take this project on with me to sit down for any period of time to write and edit their stories.
I decided that I had to try. It was too important not to. These stories needed to be told. In December 2011, I started the process by finding people whom I thought may want to contribute, keeping in mind that I thought it was important to include people from a variety of geographic locations within the United States and Canada as well as various age groups and gender. I accessed people through the various resources I was connected to including the support group, the Sjӧgren’s Syndrome Foundation, my blog, and the list serve e-mail list. I was astounded by the response. People did want to tell their stories. Many of them were just not sure how to do it. I decided to develop a set of writer’s guidelines that included a few key elements that I felt were important to every story and then asked each writer to then tell their story in their own words, while still incorporating those elements that I thought would be important to most readers.
What resulted was the thirteen amazing stories you have before you now.
I will be honest. The process has been very trying at times. People who committed to the project had to drop out due to health or other personal reasons. Deadlines could not be met. It was difficult for me at time to even keep track of which author was who and how many authors I even had at any given time. Organization became critical. Every story that came to me needed to be edited by me before it went into the book and landed on a potential agent or publisher’s desk. Let me be clear, I am by no means an editor so I was learning as I went along about the finer points of grammar and punctuation. But because there were thirteen other writers submitting stories to me, I felt that it was important to have the book as presentable as I could possibly get it. I did not want the content of the stories to be marred by writing issues that I could fix.
Approximately two months after the project started, I was struck by another unexpected health crisis of my own not related to Sjӧgren’s syndrome. I was afflicted with an illness called Guillain-Barre and subsequently experienced two pulmonary emboli which are blood clots in the lungs. And if you are thinking this while you are reading it, yes, I do have bad luck when it comes to my health! The recovery took months and due to the illnesses and treatments, the project went on hold for months. I began to doubt myself. What was I doing? Why did I think I could off something like a book with all my medical issues and limitations? I almost gave it up on the project entirely.
I obviously did not give up and here is why. While I was recuperating from that particular health crisis, I started to read some of the stories that were sent to me; not to edit them but just to read them. I was emotionally overcome by what I read. I did not realize how many of us had shared such similar journeys on the paths to getting a diagnosis. We encountered so many of the same obstacles and ignorances. We rode on the same emotional roller coasters together, thousands of miles apart. Most importantly, I was struck by the tenacity and courage of the human spirit. I was impacted by the ability of people with a chronic and oftentimes debilitating illness to see past their suffering and still find the beauty and positivity within their lives.
The writers who were contributing to the book and other people with Sjӧgren’s syndrome who were following my blog and Facebook page became aware of the health difficulties I was having and encouraged me to press forward with the book once I was able to. At that point I made the decision that I would take this project one step and one day at a time, writing and editing in between doctor’s appointments, tests, pain medication doses, and naps. Like my fellow contributors, I did not give up.
Together, we wrote a book.
One that we hope you will find informative and inspiring.
A book that we hope will bring more awareness to this illness.
One that will hopefully make you feel less alone and more empowered.
No. Amazon processes the donations. What you are doing now is pledging the money. Amazon does not charge anyone's credit card until August 3rd and then you are only charged if this project reaches the total goal amount which is $7000.
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