Sunday, July 28, 2013

Stepping Outside Of My Comfort Zone

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.

Sunday, July 14, 2013

Excerpt From Tales From The Dry Side

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 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.


Monday, July 8, 2013

Dry Mouth

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, 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!