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The Vulnerability Of Being A Patient

August 15, 2013 / / 6 Comments

This is a health related blog entry that is not just about Sjögren’s. I say this because I know that sometimes non-Sjögren’s people read the blog title or the first few sentences and decide they are not interested in the subject. I know this because well, people have told me. And for the record, I think that is awesome because I love honesty and because I frequently do the same thing when reading blogs. But this one is important because at some point in our lives most everyone, even my extremely healthy husband, has to see a doctor in this country.

We all know what the state of health care is like in this country and to be honest, I have no desire to get all editorial about that. But because I am constantly immersed in the health care system, people ask my opinion a lot and I read stories and scenarios online about other patients who find themselves in situations that they think are unique to them. So I am going to share with you all a recent scenario that happened to me and how I dealt with it. It doesn’t mean that what I did was right for everyone but I want to share it because I think it is important. I wish it wasn’t because frankly, I would rather not talk about my bladder but for the sake of the greater good, I will.

About a year ago, I experienced some new symptoms that strongly mimicked the symptoms of a urinary tract infection (UTI). Pelvic pain and a feeling like I had to go to the bathroom all the time. I was treated with antibiotics and my symptoms seemed to go away. Since that time I noticed these same symptoms on a few other occasions; sometimes I would be given antibiotics although looking back, I realize that I never had a positive urine for an infection. I was being treated primarily because of my symptoms and because I kept telling my different doctors that I thought I had a UTI. Sometimes the symptoms went away on their own. In the back of my head, I knew something else might be going on because things just didn’t seem “right”. When I went to urinate, the urine wouldn’t come out as easily as it typically did and I frequently felt like I had to go even though I had just been in the bathroom ten minutes earlier. I kept mentioning this to different medical professionals but I never made a big deal about it because it always went away and when you have an autoimmune illness as complicated as mine is, you cannot possibly pay attention to every single physical symptom. You would go crazy, trust me. Plus I was dealing with other physical issues, planning a wedding, trying to get a book published, had a death in my family, and all kinds of other more important issues.

Then the second week of June 2013 came and the pelvic pain came back with a vengeance. I don’t think it was a coincidence that it was right after my wedding (good stress). It would still come and go but I was really struggling on the toilet. Sometimes a trip to the bathroom made me sob it hurt so much. I had my urine tested and it was negative. I began to wonder if I had a Sjögren’s related complication called interstitial cystitis. So I called my nephrologist, who is a kidney doctor, and he referred me to a urologist, a bladder doctor. It was a doctor I had heard of and he was based out of a local community hospital that I hadn’t been to in years. I read some reviews online of him that seemed favorable. For the sake of avoiding a lawsuit, we will call him Dr. B (for bladder).

I was a little nervous about seeing a new doctor, especially because my symptoms waxed and waned and I had my credibility doubted in the past before I was accurately diagnosed with Sjögren’s syndrome. The whole thing got off on the wrong foot because I showed up for the appointment only to find out it had been the previous day. I had been given the wrong date. I then had to wait another several weeks to get another appointment and my symptoms were worsening by the week.

I finally got to my new appointment day with Dr. B.  I registered in the lobby of the hospital where I found out they had a lot of my information wrong. I then proceeded to the clinic/office and I was actually confused where to go. There were no signs indicating I was in the right place and when I asked a staff person, I was spoken to in a sharp tone. You could tell that she was stressed. I was told to take a seat.

After waiting well past my appointment time, I had my visit with Dr. B. I am going to start by saying that when I meet a new doctor, I go into that visit with a smile on my face and a positive attitude. I feel that it is important in building a rapport with someone. My positive attitude quickly took a turn as I found myself in a head to head argument with Dr. B. several minutes into the visit. He was asking me my medical history and I told him I had my adenoids removed when I was a toddler. He then reiterated to me that I had my tonsils and adenoids removed. I corrected him and said no, just the adenoids were removed and the argument followed. As a pediatric nurse, I know that typically tonsils and adenoids are removed at the same time these days but for whatever reason, only my adenoids were removed back in 1974. He told me that wasn’t possible. I asked him if he wanted to look in my throat. He declined. Remember, this is a urologist, not an ear, nose, and throat doctor.

The visit went downhill from there. He wanted to do another ultrasound as the one from a few months ago was suspicious for urinary retention. He didn’t seem to hear me when I told him that the nephrologist thought that the urinary retention was from a medicine I was on at the time and no longer took. He mentioned the possibilities of Parkinson’s or some other type of neurological disorder. I wasn’t against this testing but I brought up the possibility of interstitial cystitis related to Sjögren’s. I was again dismissed in a condescending tone and told that interstitial cystitis itself is rare, I don’t fit the profile, and Sjögren’s doesn’t cause bladder complications. I have come to find out that cystitis can affect anywhere from 10-30% of people with Sjögren’s. He never did a physical exam of any kind.The visit ended with him asking me why I was on Medicare. I’m not sure why that mattered but I told him I was disabled from Sjögren’s. His response indicted to me that he did not think that having Sjögren’s was a good reason to be disabled.

I sat in the waiting room in disbelief. First, I could not believe that a doctor actually got away with talking to people like that. And second, I was shocked at myself for not just getting up and leaving during the visit. Then I tried to think about my own behavior and interaction to see if part of this was my responsibility. It took me all of five minutes to realize that my behavior was extremely appropriate but it was also assertive and I knew what I was talking about. I think that may have upset this doctor. As I got my test dates and then drove home, I thought about what to do. I was very upset. I knew I was starting to get worse but I could not see myself going back to this doctor for any reason. If I started all over with a new doctor, there could be no telling how sick I might get while trying to find a new doctor and then waiting for an appointment.

I felt vulnerable. This doctor’s appointment left me feeling helpless and inferior when I left the office. I am a well educated, professional nurse who has more knowledge of Sjögren’s syndrome than probably most physicians in this country and yet I now questioned myself because someone had the initials M.D. after their name. I also knew that I desperately needed his help. It wasn’t only that he didn’t recognize or have the knowledge about my autoimmune illness, it was about the fact that he just did not care. He let his pride stand in the way of hearing me when I tried to tell him the information I read from the Sjögren’s Syndrome Foundation about bladder issues. I didn’t know for sure if that was the issue, but I did expect to have a reasonable conversation about it. I expected to be treated as a partner in my own health care. I expected to be treated with respect.

So what did I do? Within several hours of getting home, I decided that there was no way I could work with this doctor. I cancelled my tests and I started the process of finding another urologist which took me a very short period of time. Within three days, I had an appointment set up with a urologist at Lahey Clinic in the Boston area. Two hours from home. I made the decision to go there for several reasons; the biggest one being that they are nationally recognized for their urology program. Two more weeks I would have to wait.

Things did go from bad to worse for me in regards to my bladder issues. In those two weeks, I ended up in the emergency room with some of the worse pain I have had in my life; and that is saying a lot! But it was worth it. And I will explain why.

From the moment, and I literally mean moment, I stepped into Lahey Clinic, I was treated with the utmost respect. People would stop me in the hall (guess I was looking a little confused) and asked if they could help me get to my location. When I walked into the Urology Institute, I felt like I had stepped onto another planet. They were organized and on time. Before I saw the doctor the first time, I met with a nurse who did a urine test and a scan of my bladder afterwards to make sure I was not retaining any urine. She explained to me the entire process of what my visit would be like. She handed me two forms to fill out and guess what the first form was? An interstitial cystitis questionnaire. It was obvious to me that someone had bothered to look at the medical records I had sent over. It was obvious to me that my doctor had a clue about autoimmune issues.

The doctor I met with truly listened to me and we came up with a plan together. He told me he suspected that I had interstitial cystitis (IC) . Within a few days of my visit, I went downhill even further and talked to an on-call doctor on a Saturday who helped me figure out a medication plan to get me through the weekend.  When I called the office back on Tuesday, a receptionist listened to me explain my situation and got me an appointment for the next day with one of the nurse practitioners. Again I was listened to, we explored all the options, and it was decided that my procedure/OR date should be moved up. My appointment was a Wednesday and I was scheduled for the OR on Monday for a cystoscopy with hydrodistension to evaluate and treat for possible IC. While I was at the hospital for this appointment, they had me do my preoperative registration and blood work that same day since I lived so far away. Most importantly, I was treated with respect. That is excellent medical care.

So what is my point in telling you this huge and drawn out story? Well, we all must decide for ourselves what we are willing to put up with and what we are not. We must also weigh the risks and benefits of every medical situation. That being said, it is NEVER acceptable to be treated by a medical professional in a way that is demeaning, rude, or uncomfortable. It doesn’t matter what your medical issue is and it doesn’t matter how much pain you are in. It doesn’t matter if the doctor does not like you and it doesn’t matter if he is having a bad day. Doctors have bad days just like the rest of us however they are also professionals. And you are the patient. Just being a patient makes you vulnerable when you step across their threshold. I am not saying to dismiss someone because they disagree with you (I have certainly had my share of disagreements with doctors) but you should never feel disrespected and you should certainly never leave an office in tears because of a medical professional. You deserve better. We all do.

We often hear and see online and in the media about healthy relationships versus dysfunctional ones. We hear about abusive spouses and toxic friends. We learn about what is acceptable behavior and what is not. We teach our children about bullying. But what about the very people who sometimes literally hold our lives and well being in their hands? Shouldn’t they be held to the same standards? Í am not saying that all doctors are rude, inappropriate, or bullies. I, in fact, have seven who are none of those things and are some of the best doctors out there. So if you encounter a situation like this, know that there are not alone, know that you deserve better, and don’t quit until you get what you need.

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I know that I am fortunate. My experiences took place in a state where the eastern side of the state, two hours away from me, is riddled with some of the top hospitals and doctors in the country. I have never lived anywhere else besides western Massachusetts but I do understand that access to better care may not be as easy for some of you as it was for me. I would be interested in hearing your thoughts and stories regarding that or in regards to anything discussed in this essay.

Stepping Outside Of My Comfort Zone

July 28, 2013 / / 2 Comments

On July 3rd, I started a thirty day Kickstarter campaign to try and raise money to self publish my first book, Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjögren’s Syndrome. You can read more about the Kickstarter campaign on my blog entry: Tales From The Dry Side Kickstarter Project. The long and short of it is that I am trying to raise $7,000 by August 3rd. It is an all or nothing venture which means that I need to raise all of the money or I receive nothing to publish the book. If people want to donate, they go to my Kickstarter website where they pledge whatever dollar amount they want, as little as $1.00, and their credit card is not charged until the deadline and ONLY if all $7,000 is raised. The $7,000 that is raised is used to publish the book and includes a lot of services which you can read about on my Kickstarter page. It also includes fees and the cost of rewards as it works on a rewards system based on your level of donation.

As of right now, July 28th at 6:40pm, $6,075 has been raised and there are five days left. If that seems somewhat incredulous to you, you are in good company. I am sitting here tonight quite amazed myself.

This is the first time I have undertaken a project like this and I have to be honest, I absolutely HATE asking for money. I always have and I always will. And, it will be a very long time, if ever, that I do something like this again because it makes me that uncomfortable. I did not go into this project without doing my homework and exploring other options. I pursued the traditional publishing route for nine months and I couldn’t even get someone to read the manuscript. I considered publishing the book exclusively as an eBook through Smashwords or a service like Amazon Kindle but I feel strongly that this book needs to be accessible to the people who need it most, those with Sjögren’s syndrome. And many of us are disabled or broke from medical bills and do not have the access to that type of technology.

Now there are five days left and I am 86% towards my goal. Anyone can have a Kickstarter campaign but my belief is that it takes a lot of work to have a successful one. I have spent anywhere from three-five hours a day on it. And it has been difficult at times, very difficult. Because of the limited time I have to raise the money, I have felt pressure to push past my own bad physical days to get at least the bare minimum done to make the project successful. Thank you e-mails to contributors, social media promotion, canvasing towns with flyers, newspaper interviews, returning the thirty-fifty e-mails and Facebook messages I have been getting every DAY. The list goes on and on. I have also endured criticism from a few people who feel the need to try and knock me down; complete strangers who think that it is their place to criticize my choice for doing a Kickstarter campaign and promoting that campaign. I think in the social media world they are called “haters”. I will be honest, I have let a few get to me in the past few weeks. I cannot help it. I am a sensitive soul; more so than many people realize.

I have also had to step outside my comfort zone. I am very uncomfortable talking on the telephone with people I do not know extremely well, yet I have given two newspaper interviews over the phone and talked to many other people I do not know at all. I have walked into countless businesses and medical offices with flyers and letters and had to explain what I am trying to accomplish. Excluding my own doctor’s offices, each time I have done that, it has made my heart race and my palms sweat. I have had to learn the ins and outs of the self publishing world as well as the fundraising world, both of which were completely foreign to me until several weeks ago. Because fundraising is typically frowned upon for something like this, I have had many doors slammed in my face both on social media and in the non-social media world; often from the very places that people turn to for resource information about Sjögren’s. Rejection is never easy, especially when you are asking for help on a project whose goal is not to self promote but rather to assist other people.

So in addition to some anxiety and extremely long days, where has stepping outside of my comfort zone gotten me? It has gotten me to a day where I have been able to raise over $6000 and more importantly, be able to spread the word about this illness that has not only taken so much from me, but also given me so much back. It has gotten me to a place where upon coming home in the middle of the night, I stayed up an extra hour last night to read two letters that arrived in my mailbox from complete strangers; each with their own Sjögren’s story to tell. There is something strikingly personal when people reach out to you in that manner.

Stepping outside of my comfort zone has reminded me of the resilience of the human spirit. So many donations that have come in also have come with a story. Sometimes just the stories themselves come. When I had my first Sjögren’s symptoms five years ago, I never imagined that there were so many other people who suffered in such a similar way. People who, until they saw the newspaper interview I did last week, thought they were suffering alone. Every moment of stress and anxiety I have had over the past several weeks is worth it just to know that even one person in this world feels understood and less alone.

Stepping outside my comfort zone by doing this funding project has allowed me to see so much good in my family and friends as well as in complete strangers. So many people are investing their time and energy to support me in this cause; some have Sjögren’s, many do not. I have had the opportunity to hear that my taking on this book and Kickstarter project has encouraged some people with chronic illness to step outside their own comfort zone. To demand better care from their medical providers and in some small way, to start pursuing their own dreams. Because as one woman mentioned to me in an e-mail, being disabled does not equal being non-productive.

No, it certainly does not.

Excerpt From Tales From The Dry Side

July 15, 2013 / / 4 Comments

It is pretty common knowledge by now that I have written a book called Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjögren’s Syndrome. It is a compilation of thirteen personal stories told by people with Sjögren’s syndrome. I am attempting to self publish the book through a company called Outskirts Press and I am doing a funding campaign through Kickstarter.com in order to get the book published.

Kickstarter works as a rewards system funding platform which means that financial contributors can elect to receive a reward from the author based on their donation level. Rewards start at $25 but the minimum donation is only $1.00. In order to donate you must sign up on Kickstarter and have an Amazon account because Amazon handles the money exchange at the end of the project which in this case is August 3rd at 5:30pm. If you do not have an Amazon account, it is very easy to sign up for one. I have been told by contributors that the entire process takes anywhere from 2-10 minutes depending on whether or not you have an Amazon account. Your credit card (via Amazon) does not get charged unless I raise the entire $7000 by August 3rd. if I do not raise the entire amount, you get charged nothing. You can read more about the book and the Kickstarter campaign on my Kickstarter page by clicking HERE.

To date, 43% of the funds needed have been raised. There are twenty more days to raise the money.

A lot of people have put a lot of hard work into these stories and into trying to get this book published. If you think you might be interested in donating but are not quite sure, the following is an excerpt from chapter 13 of the book entitled “Christine”:

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” ~ Helen Keller

I clearly remember the day it all started. It was the week between Christmas and New Year’s 2008. I tried to get out of bed and all I felt was terrible pain in my ankles and wrists. It was like someone was chiseling through my joints. I had never experienced anything like this pain before and it didn’t make sense because the previous day, I had been fine. I got out of my bed and found it difficult to even move my legs. This was only the beginning of my journey. The journey that changed my life forever.

I tell my doctors that this is when my Sjӧgren’s symptoms started but looking back, I am not so sure that is accurate. I had been plagued for almost a year before this with left hip pain that was finally diagnosed as sacroiliac (SI) joint dysfunction and was permanently relieved by a steroid injection into the SI joint. My ophthalmologist had noticed two years prior that my eyes were starting to become dry and had suggested using eye drops. I blew off this suggestion. What was a little eye dryness anyways? I didn’t even notice it. Oh, what I used to take for granted.

I was thirty-six years old at the time the joint pain started, was married with no children. I owned a home, and worked as a pediatric nurse at a children’s hospital in Connecticut. Up until this point I had a complicated medical history as I was diagnosed and successfully treated for Hodgkin’s lymphoma at twenty-four years old, had undergone a cardiac ablation for a heart arrhythmia at thirty-one, and was also diagnosed with a blood clotting disorder called Factor V Leiden. I also had hypothyroidism. I truly believed that this sudden onset of joint pain was just another issue to be dealt with and resolved.

I sought out medical help right away for the joint pain as I was finding it difficult to walk and use my hands. My primary care doctor at the time worked me up for every possible thing she could think of including celiac disease, Lyme disease, other autoimmune diseases, the list went on and on. Tests and labs came back negative. My pain got worse and on top of it, I started to become more and more tired. Not your typical I didn’t sleep enough tired but rather that body numbing fatigue that makes every activity and movement difficult. I was sent to see other specialists including an endocrinologist and a rheumatologist but nothing could be found. This went on for months and months. Doctor after doctor visit, I would leave in tears and feeling frustrated.

I had a great amount of confidence in the doctor, a physiologist, who had diagnosed and treated my SI joint dysfunction and I sought his help. He decided to do a five day course of steroids (prednisone) and all of a sudden, I was a new person. At this point, as a nurse, I was convinced that I had an autoimmune disorder but I was assured over and over again by several rheumatologists, three of them in all, that I did not, despite my positive response to the steroids.
As time passed, my list of puzzling symptoms increased significantly. Respiratory difficulties landed me in the emergency room or admitted to the hospital. I experienced severe joint pain, numbness and tingling in my legs and hands, voice hoarseness, rashes, chills, severe fatigue, abdominal pain, and ulcers in my nose. Yet no one could tell me what was wrong with me because for the most part, my labs and tests were normal. I also had a relatively recent history of depression and anxiety, now thought to possibly be Sjӧgren’s related, and it was suggested that the root of my problems was psychiatric and not physical. It still saddens me to this day that no one thought it might be the other way around.

 

Dry Mouth

July 8, 2013 / / 8 Comments

I was recently asked by a representative of Nuvora, Inc. if I would be willing to write a blog entry about dry mouth and also review one of their products. Just for the record, I have not been financially compensated (unfortunately!) in any way. This is an unbiased review. What is interesting is that in three years of writing this blog, I have never written about my Sjögren’s related dry mouth. I am not sure exactly the reason for that except that maybe compared to the rest of my autoimmune symptoms, especially the ones that affect various organs, it doesn’t seem like as much of a big deal.

But dry mouth is a big deal. The fact of the matter is that my dry mouth was not one of my first symptoms and it took some time to develop but when it did, it came on with a vengeance. I am very lucky to have inherited my dad’s excellent teeth and to date, I think I may have developed only one cavity since I started with the Sjögren’s symptoms in early 2008. I do work very hard at keeping it this way and I have an oral care regime that if the average person knew about it, their jaw would drop. That being said, a lot of us with Sjögren’s have meticulous oral care and yet we still run into terrible complications at the dentist. Dry mouth is not just a comfort issue, it is a quality of life issue.

Dry mouth is experienced by twenty-five percent of people in the United States on a regular basis. It occurs more frequently in women and the incidence of it increases with age. The medical term for dry mouth is xerostomia and xerostomia is caused by a lack of saliva production. The problem is that this saliva is extremely important as its function is important in helping us to eat and swallow. Saliva also controls bacteria which kills germs. The result of not enough saliva include tooth decay, gingivitis, and other oral infections.

Dry mouth can be caused by many factors including medical conditions and as a side effect from certain medications. The medications that can cause dry mouth include antacids, decongestants, antihistamines, antidepressants and diuretics. The medical conditions that cause dry mouth include lupus and Sjögren’s, as well as many other autoimmune disorders. Also, people with diabetes, AIDS, and those undergoing radiation treatment for head and neck cancers can be affected as well.

Proper dental hygiene is critical for those of us with dry mouth. Brushing two to three times a day, regular flossing, the use of a water pic, and fluoride treatments are some good measures we can employ to battle dry mouth. It is also advisable to avoid coffee, tobacco, and mouthwash containing alcohol as all of these can increase mouth dryness. But for many people, these measure are not enough. We can suck on all the sugar-free hard candy and chew all the sugar-free chewing gum in the world to no avail.

Since I started battling dry mouth, I have been through many products on the market: all of the Biotene products, OraMoist, and XyliMelts. I do use Biotene toothpaste in the morning (I use a prescription fluoride toothpaste at night) as well as their mouthwash with some good results. OraMoist patches were a bad experiment for me and XyliMelts I currently use on many nights and they are helpful.

The product I was asked to review is called Salese. According to Bolko Stolberg, Executive Vice President of Nuvora, Inc., Salese is “a fast acting and long-lasting solution for people with dry mouth whether you get occasional dry mouth or whether it is something you deal with on a regular basis. Our unique delivery system provides lasting moisture for an hour or longer while also helping to improve the overall health of your mouth, leaving you with fresh breath and a clean feel.” The Salese lozenge uses a proprietary Sustained Release technology which is supposed to last anywhere from thirty minutes to two hours. This technology is designed to achieve unprecedented prolonged activity and efficacy for ingredients delivered in the oral cavity.

OK, that’s great but a lot of products advertised towards people with dry mouth make claims that just don’t hold up when you actually use the product. I won’t name any names. The folks at Nuvora, Inc. sent me two boxes of samples. Each box contains twelve lozenges. I obviously didn’t pay for them but according to Walgreen and Amazon.com, the price is $6.99 for the box of twelve.

I went to try one and then I realized I had a huge problem: they sent me a box of peppermint and a box of wintergreen. Anybody who knows me well knows that I have a HUGE aversion to anything with mint in it, except for those girl scout cookies. And I am not kidding. I don’t know where this aversion came from but I do not even use mint toothpaste and I have never chewed minty like gum, and that includes peppermint and wintergreen.

However I decided to go for it and I tried the peppermint lozenge twice. I will admit, the taste wasn’t as bad as I thought and my guess is that if you like mint, you will love these. The texture of the lozenge is very sponge-like, almost like a gummy bear. Unlike XyliMelts, they do not adhere to the roof of your mouth or gum line and as a singer, that is a feature I miss with the Salese.

I got through forty-five minutes using the lozenge the first time and an hour the second time. I had to give up because of my aversion with the mint thing but I have to tell you, I was impressed with how long the lozenge lasted. It also didn’t have a chalky taste like some other products for dry mouth. Considering what was left of the lozenge when I ended my trial use of it, I would not be surprised if it lasted a total of two to three hours, at least. Few things make me as happy as finding out that a product is as good as its manufacturer claims it is. Also, Salese is a gluten-free, dairy-free, and vegan product. You all know how thrilled I am to hear that!

I did some poking around on Amazon and by reading reviews there, I saw that most other people were as satisfied with Salese as I was. I also found out that there is a lemon flavor which made me very happy. Since there is no Walgreens around us, I ordered it and paid the extra $4.50 in shipping to give this flavor a try. If any of you want what is left of my samples, e-mail me your name and address and I will ship it to you. You know, that whole paying it forward thing and all!

Tales From the Dry Side: New Book About Sjögren’s Syndrome

June 28, 2013 / / 0 Comments

As many of you know, I have been working on a book called Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjögren’s Syndrome. The project started in December 2011 because as I was networking and meeting other Sjögren’s patients, it became strikingly clear to me that there was a need for our stories to be told. There were so many similarities in our stories, especially in regards to how long it took most of us to be diagnosed. Some of us still do not have a “formal” diagnosis.

I went through a process of seeking out Sjögren’s patients via in person support groups, a list serve system, through my blog, and via Facebook. Including myself, there are thirteen of us who have contributed to this book. The stories are amazing and compelling. I spent the better part of a year coming up with a structure for the book and editing the contributor’s stories. Keep in mind, every single one of these contributors has an extensive autoimmune illness, sometimes more than one illness, and yet they spent countless hours writing these stories for this book.

Steven Taylor, CEO of The Sjögren’s Syndrome Foundation (SSF) has written the foreword to the book and has agreed to support the book by promoting it via the SSF on their website and at conferences. His agreement to do this will be instrumental in getting this book into the hands of the people who need it most; not just patients, but caregivers and medical professionals as well.

The book is complete and has been for some time. Since October 2012 I have been sending letters and contacting literary agents to represent the book. I have attended a writing conference and met in person with a literary agent. After contacting well over twenty-five agents, I have gotten nowhere. I know this is common in the traditional publishing world however as a Sjögren’s patient with my own limited physical resources, this has been difficult. Also, I feel strongly that this book MUST get into the hands of those who need it ASAP and the traditional publishing process is not conducive to that.

I have made a decision to self publish the book. I have spent countless hours researching the process and different companies. I have poured over self published books to see what I want Tales From The Dry Side to look like. I have made a decision to self publish with Outskirts Press as they produce a quality product and have an excellent reputation in the publishing world. I will be honest, the process seems daunting to me but as you all know, I am highly motivated and this project will succeed.

Self publishing costs money upfront. How much money depends on the quality of product you want and on the services you require. I have a husband who works but I bring in a disability income and my medical expenses are a bit ridiculous. Therefore I am looking for funding to self publish the book.

I have decided to do this through a funding platform called Kickstarter.com. It is a for profit company that is designed to help people finance a variety of creative projects, including books. You can learn more about them by clicking the link above. I am in the process of setting up the project on their website and it is almost done. I also had to set up a business account through Amazon in order to obtain the funds and it will be a few more days until that process is complete. I have learned a lot in the past month!

Kickstarter is not just a site where I ask for money to fund the book. It is a lot of work on my part. There are reward incentives that I offer based on the donation level. Rewards vary from a free copy of the book to my services as a speaker at your event. It makes the process of fundraising interesting and rewarding…literally!

I am looking to raise $7000. OK, listen up because this is important!

I have to raise the entire $7000 in about 30 days or I get NOTHING…NADA…ZILCH!

If I raise $6,950, no book! This is part of Kickstarter’s policy and I have no control over it. They have found that projects are more successful with this condition. Personally, it scares the crap out of me! The Kickstarter page for the book should be up within a week and I will be posting the link everywhere so that people can read more about the book and the funding.

So this is what I am asking for, besides money. I am asking that you share this blog post with anyone and everyone. I am also asking that you be on the look out for the Kickstarter link when I post it and then share THAT with everyone you know. Getting the word out about this will be critical to the success of funding the project. It is especially important that those of you who have a Sjögren’s or autoimmune related blog and/or website share this information. If I raise the $7000, the book will be published…period.

Thank you all again for your continued support.

Much love!

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