For Everything There is a Season

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

Category: writing (Page 2 of 3)

The Impact of Tales From the Dry Side

November 8, 2013 / / 6 Comments

I got a very exciting e-mail this week from my publisher. It was notification that my galley proofs for Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren’s Syndrome were ready for my review. This is a big step in the publishing process for me. Galley proofs are basically the actual book digitally presented for me to review; the cover, the interior, all of it.

It’s a scary process editing these galley proofs because if there are any mistakes, the full responsibility is mine. I have to say, as a perfectionist, that is much more responsibility than I want. On the other hand, one of the things I have enjoyed so much about the self-publishing process has been the opportunity to create a book that is completely and uniquely mine. With that, comes great responsibility. However, I can only do my best and in my heart, I know I have given this process everything I have. The final product, with any imperfections, will be enough. Just as I have been enough.

My goal during this entire publishing process has been to have this book, my very first book, available to customers in time for Christmas. Of course I only have so much control over that, but yesterday was my opportunity to speed up that process. So in between having some work done on my car, doing a hospice volunteer visit, taking care of a sick dog, and choir rehearsal, I worked fervently on reviewing the galley proofs. And this means rereading and editing the entire manuscript…for like the zillionth time. That may be an exaggeration, but I have read this thing more times than I can count. And last night, at 8:30pm when I was exhausted, cranky, and ready to throw my computer out the window because I would rather be concentrating on watching Grey’s Anatomy, I realized just how sick and tired I was of this whole book writing/publishing thing.

That was, until I got to Laura Jeanne’s chapter….again.

It is still surprising to me that every single time I have to review this manuscript, some part of one of my contributor’s stories moves me to tears.

Last night was no exception.

Laura Jeanne’s story is an amazing testament to the strength of the human spirit. This woman, like many of us, has gone through such hell in her Sjögren’s journey. Yet, her faith in God remains steadfast and certain. She still wakes up every morning putting one foot in front of the other. She counts her blessings and while several times has become close to just giving up on life entirely, she finds some hope and continues on her journey.

Rereading Laura Jeanne’s story last night reminded me of why, for two plus years, I have continued with pursuing this dream of mine to publish a book of personal Sjögren’s stories: to inspire, bring hope, and remind people to put one foot in front of the other. To remind them that it is possible to survive, and sometimes even to thrive.

Thank you Laura Jeanne, and thank you too all of my amazing story contributors. We are just one more step away from actual publication and one more step away from bringing these stories out into the world. There is no doubt in my mind that these stories will help countless Sjögren’s patients. These stories will make a difference. They will educate and bring awareness to the medical community. They will bring hope and comfort to the four million people diagnosed with Sjögren’s syndrome.

The Tales From the Dry Side stories will….

Encourage.
Inspire.
Change the world in a small way.

Thank you.

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.

 

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!

Hang On As Tight As You Can

December 27, 2012 / / 3 Comments
 
 
“I’ll lean on you and you lean on me and we’ll be okay.” ~ Dave Matthews Band
 

It is the day after Christmas and I am sitting here thinking of all the blog entries I want to write. My writing has taken a nose dive recently for a variety of reasons and I can always tell when it has been far too long since I have done any writing. Whole sentences and paragraphs start to form in my head in the middle of the night when I am fighting my enemy, the evil insomnia. Or I will be having a conversation with someone and sometimes find my mind wandering to all the thoughts in my head that I want to get written down.

Today is my day to get my mind and spirit back to my passion. To be honest, over the past month or so, I have been so distracted and overwhelmed, that I couldn’t even concentrate long enough to put all of those sentences and paragraphs together. But like so many other times, it was my fiance, Chuck, who gently reminded me with one of his Christmas presents, that writing is the one of the things in this world that I need to do.

He is so good like that; paying attention to what is going on with me and supporting me. I used to worry that because of my illness, he gets the short end of the stick, having to be the strong one more often than not. We have only been together a little over two years and we have endured our share of challenges, in regards to life, my health and, as all couples do, our relationship. Usually though when some type of challenge faces one of us, the other person is in a good enough place to be a strong support. But then what do you do when:

One of you gets so sick that you are hospitalized for five days. And more testing and uncertainty follows.

One of you is having a lot of stress at work.

Your dog gets sick enough to require four vet visits in one week and multiple tests.

One of your cars breaks down.

One of you has been hurt by someone you love and trusted.

One of you is faced with the possibility of another autoimmune illness.

One of you has a sister who undergoes life changing surgery.

One of you is told that you have a growth on your gallbladder that has a remote possibility of being malignant and you have to make a decision about whether it is worth the risk of surgery.

Christmas is fast approaching.

One of you is told that your mother is dying.

And all of this happens within the time frame of one month.

So what do you do? What do you do as a couple with so little time under your belt when both of you are stressed beyond limits that you think you can handle?

They say that love conquers all but I am not sure I agree with that anymore. Rather, I think love, friendship, determination, faith, compassion, selflessness, and most of all communication conquers all. Because once you are committed to someone, experiencing crisis is no longer a solo event. You have to be able to not only support your partner in their struggles, but deal with your own feelings as well. It is easy to get caught up in your own challenge of just getting yourself through the day, but it’s no longer just “your” day. The day belongs to both of you.

I cannot speak for my fiance but for myself, in the past month, if I was trying to be there as a support for him, I rose to the occasion. Almost to an extreme. If I knew he was stressed out and then asked me how I was doing, I would sometimes downplay something going on with me. I think there is a time and place for that, depending on the seriousness of what which each person is going through, but I am here to say that for the most part, it doesn’t work well. Because he knows me so well, he then worries more. Being a martyr for your partner’s sake is not the answer. Open and honest communication is.

We are by no means on the other side of the current challenges that we face and we may not always get it right, but I can say what has worked well:

*We ask each other “how are you today?” It seems like such a basic question but if you are in a relationship, think about the last time you actually asked your partner that question.

*By sitting down together, we have learned to prioritize the most immediate needs of the week, day, and even hour. It may be him traveling to Boston Christmas morning to spend time with his mother, knowing that I physically can not make the trip that day. It could be me doing some Christmas shopping for him so that he is freed up to deal with other things.

*We make sure we connect as frequently as possible and make each other the priority right now. I will actually consciously have to stop whatever I am doing sometimes and make sure that I have not been so wrapped up in my own problems and stress that I have not made myself emotionally available. On the flip side, I will also ask him if he needs time alone.

* Make sure we laugh together every single day, at least once.

* Depend on other people. Historically, both of us are terrible at this and the events of the past month have taught us that not only is it okay to ask for help, but that you also need to know who you can depend on for help. Especially when you need a listening ear. One human being cannot be all things to another.

Finally, and maybe most importantly, we hang onto each other as tight as we can.

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