For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

Page 21 of 44

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!

Embracing Prednisone

June 24, 2013 / / 5 Comments

I am back on prednisone. There, I said it. Anyone who follows my blog knows how I feel about prednisone. It is a miracle drug and a drug from hell all mixed into one small white pill. Over the past four years or so, I have been on it more than I have been off it. However since I started seeing an integrative medicine practitioner last November, I was able to wean off prednisone at the end of January and have been off it ever since. Folks, that is the longest I have ever been off of it; FIVE whole months!

Now, I  saw my rheumatologist in April which was about a month before my wedding. Because of the increase in joint pain, she wanted me back on 10mg of prednisone or Arava. It was my choice based on the side effects. I gave it a lot of thought, gave it another week, and decided to hold off. And no, I never called my doctor. I am not an advocate of going against doctor advice so please don’t leave me comments saying I give bad advice. People have sent me those types of comments and e-mails. I did what I thought was best for me. Maybe I will be right. Maybe I will be wrong. I followed up with the integrative medicine doctor, I clamped down on my diet, and my pain got better. I made it through both days of my wedding very successfully.

After the wedding, it looked to others I was doing well and I kind of was, to a point. But I was having issues. I think what was really happening was because I was feeling better, I was more active which then caused my symptoms to flare. Also mentally, I am coping MUCH better with my symptoms, especially my pain. And that makes a big difference. So whereas before I would go back on prednisone, I really tried to tough it out. I spoke with my integrative medicine practitioner again because the amino acid supplement dose she had me on was doing wacky things to my body and I had to come off it completely to make sure that was the issue. My hormones had gone bonkers and she told me that this could happen. The mood swings were enough to make me stop the amino acids temporarily at least. However she did add in an anti-inflammatory supplement called boswellia and then told me it was going to take about a month to work.

Shortly after this appointment, I realized that things were still getting worse. Now “worse” for me is all relative. Even though I was doing “worse”, I was still functioning much better than last year. However my fatigue had come back with a vengeance, I constantly had pain, tenderness, and swelling in my glands around my face, less exercise tolerance in terms of joint pain, and the issues with my bladder, which I still have to see a urologist for, intensified. My option was to call several different specialists about each issue or just go back on a course of steroids to see what improved and what did not.

Luckily, my rheumatologist is flexible about my dosing of prednisone and when I take it. She makes suggestions and also relies on me to figure out what I need depending on what is going on at the time. That is hard for me sometimes. While I appreciate the flexibility, I am stubborn about being on traditional medications because I know that most of the time, the side effects can be just as bad as the Sjogren’s symptoms. I have a lot of arguments with myself about the prednisone. I still feel very strongly that it is NOT the answer as a constant modality of treatment for Sjogren’s syndrome because it suppresses your immune system. It does not treat the cause of the illness. That being said, I think that when you are in an acute situation, there is a definite place for it. The problem for me is trying to decide when I am in an acute phase. Having a serious asthma flare or joint pain so bad I cannot walk is acute but I also think that maybe when there are several less critical autoimmune issues going on at once, my body is telling me that it desperately needs to bring the inflammation down.

I struggled with the decision to go back on prednisone because I felt like I had come so far with my alternative treatment. I also do not want to go back on the medication regularly. But then I realized that enough was enough. I needed to do something to get me through this period of time until the integrative medicine treatment plan was more effective. I was also concerned not just about my pain levels, which for the most part I was coping with, but about the possibility of what the disease and inflammation was doing to my organs. I decided to start myself on 20mg and do a one week course by starting at 20mg and tapering down every two days until I reached 5mg and then stop. Typically prednisone needs to be weaned down slowly but this is only if you are taking it for two weeks or more. I have done steroid tapers like this before for my asthma and also for severe allergy issues.

Today is Day Four and I am so grateful that I put my negative feelings about prednisone aside to try this course of treatment. I have never started at this particular dose or done the tapering exactly in this fashion. The 20mg has been enough to settle things down quite a bit but not enough to send me bouncing off the walls in a constant mood swing. I am still sleeping well and although I am a little hyper, I can sit still and rest when I need to. I am not even sure I am hyper as much as I am just feeling normal and like I have enough energy to get through the day. This has by far been my best experience with prednisone. Until I started this week course of prednisone, I did not fully appreciate how bad I was feeling. I was getting through it because my mental state was in such a good place. The gland swelling and pain is almost gone, my joints, especially my shoulders, are dramatically better, and I am not in agony when I go to the bathroom. I don’t know what will happen when I come off in a few days but I am hoping for the best. Because if the best happens, then I have a new way to use prednisone for when things get really tough and unbearable. Or for when I go on our honeymoon to Disneyworld in September.

Now if I go through this week’s treatment and things get bad again, I will have to discuss this with my integrative medicine practitioner and my rheumatologist. No matter what, I still have to follow up with the urologist. But meanwhile, I have helpful information to pass on to him about the prednisone helping that issue.

I guess what this current run with prednisone is teaching me is that my medical treatment does not have to be all black and white. It doesn’t have to be the doctor’s way or my way; the rheumatologist’s way versus the integrative medicine practitioner’s way, and it doesn’t have to by high doses of prednisone versus nothing at all. It’s about listening to my body and trusting myself. It’s about trying to combine the best of what integrative medicine and traditional western medicine has to offer while aiming for the one most important goal: to get my body to a level of functioning that is sustainable and tolerable to me as an acceptable quality of life. I know I will never not have Sjogren’s; it will never leave me. But meanwhile, I will continue to do my best to optimize my health and give myself the best life possible.

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