The January 2014 issue of the Sjögren’s Syndrome Foundation newsletter, The Moisture Seekers:
The “I Stood Up For Sjögren’s” article. Thank you to the SSF for letting me be a part of their newsletter. |
"In order to write about life, first you must live it." ~ Ernest Hemingway
I had a moment yesterday. Like one of those moments (actually, several moments) where you realize something important. I was lying on an exam table, having an abdominal ultrasound done. It wasn’t a big deal, minus the fact that the tech was specifically looking for my gallbladder and that little booger was tough to find. I go for ultrasounds every several months to check a previously suspicious growth that is attached to the gallbladder.
I first found out about this growth in November 2012 when I was hospitalized with dehydration, vomiting, and stomach pain. It ended up that the issue causing my symptoms was an esophageal motility disorder, mostly likely related to Sjögren’s. I also had severe GERD. When they did a bunch of tests to initially find out what was going on, a surgeon appeared in my hospital room telling me that by the way, they also found this thing on my gallbladder that shouldn’t be there and although gallbladder cancer is very rare, we might have to consider surgery to remove the entire gallbladder.
More tests and investigation ensued and the end result was that this “thing” had showed up on a CT scan three years prior. I don’t know if the doctor at the time read the report, but I was never told about it. Yes, you have to love our health care system. But truly, it was good news because by comparing the scans, it was obvious that the growth did not change at all in size or shape during those three years. That made it highly unlikely that this was a cancer of any sorts because to be frank, I would probably be dead. After months of discussion and more scans, it was decided that this was likely something I was born with and since I had no specific gallbladder symptoms, we would just monitor the growth.
At this point, I feel that the continued scans are a bit overkill, but I respect this particular specialist and trust his judgment. I have to tell you though, it was a horrible time for me. I was dealing with the symptoms at hand and this gallbladder scare on top of it. My mother-in-law was very sick at the time and honestly, I don’t even know how my husband and I got through it all.
This brings me back to the exam table yesterday. The tech made a comment about how much easier it was for her because I was good at taking very deep breaths. She jokingly said that I must have a lot of experience doing so.
True enough.
Then this realization hit me. I have had significantly fewer medical appointments over the past few months and the impact of that has been huge. Overall, I am much calmer about my health issues. My last big crisis was over the summer with bladder issues, but things have been quieter since September. I am very well aware of the fact that this is when I started prednisone again, but I don’t think the reason is that important. Although I continue to struggle every day with different Sjögren’s related issues that significantly impact my life, I am not in crisis mode. Looking back over the past several years, there have been weeks and months where crisis mode has been the norm around here. I do not exaggerate when I say that I have had weeks that have included anywhere from seven-twelve medical appointments in one week. How do we live like that? How do we get through each of those dramatic and tedious weeks to the other side? One step and one day at a time.
So as my day continued yesterday and through this morning, I reflected on all of this. Sjögren’s is so unpredictable. I could write this today and be in the hospital by the weekend with some unsuspecting complication. But, I have gotten better about not worrying when the next medical crisis will hit and rather, I have tried to fully live the day I have in front of me.
Taking one day at a time has served me well this year. To say that 2013 was a big year for me would be an understatement. I got married (with a two day wedding!), traveled to Disney for our honeymoon, conquered my fear of heights with parasailing, ran a very successful Kickstarter campaign, and published my first book. I reevaluated a lot of my relationships. I made new friends and lost some friends as well. I have learned a lot about myself and about other people. I have rejoiced. I have mourned.
That’s a lot. And I did some of this in between medical crises, and sometimes even during them. I think that is why I no longer make New Year’s resolutions: my life is a constant resolution. To be healthier, stronger, more relaxed, more patient, and more tolerant. I consistently work on finding ways to be a better and stronger person. Sometimes it means learning how to say no. Sometimes it means saying yes. This year in particular, it has meant setting boundaries with other people and learning that no matter who it is (i.e. not just my partner), we all deserve to be treated with respect, kindness, and love. Becoming a stronger person this year has meant that I have learned to respect where someone else is at, to forgive, and to truly move on. Most importantly, I have continued to just be myself and not worry about what people think of that.
So while I am I am excited to see what the journey of 2014 is going to look like, I will miss 2013. I am grateful for all the beautiful moments and the growth that I have experienced. However I must say that part of me is looking forward to not having so many big events and instead, just savoring the little pleasures and joys of each day.
One day at a time.
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Do you make New Year’s resolutions and have you made any for 2014?
Well, it would appear that Amazon is really on the ball these days because Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren’s Syndrome is already available for purchase from their website; both in paperback and Kindle formats. There is a link on this blog page, in the right hand column, that will take you directly to the book’s Amazon purchase page. I cannot even tell you how long it took me to figure out how to get that widget on my blog….or even figure out that a widget was what I needed!
The paperback version and an eBook are also available directly from the publisher at www.outskirtspress.com.
The Barnes and Noble Nook account is still in the process of being verified, but I will put out a notice when that is set up for all you Nook fans!
The Sjögren’s Syndrome Foundation has been in contact with me and their plan is to launch the book from their organization, via their book store and newsletter, sometime in February/March, which will be right before their Annual National Patient Conference in April. I will be attending that conference in Chicago in order to do a book signing during the event.
I have had a lot of help today with publicity and marketing from many of my fellow book contributors so a big thanks to them and to my family/friends who have been helping to spread the word. It has been quite an exciting day around here!
I got an e-mail today confirming that Tales From the Dry Side was officially published. Very exciting news!! It has been almost exactly two years since I first got this project underway and I have to say, this is a great day. So much work on the part of so many people: my story contributors, my family and friends, my Kickstarter contributors, and my community. I owe you ALL a debt of gratitude.
There will be some lag time until the general public can actually get their hands on the book. The publisher is mailing me a hard copy for my review so I can make sure they did not make any mistakes when it went to press. Once I review it, I will order all of the Kickstarter books and get them in the mail ASAP.
What happens is that is takes the wholesale distributor (Ingram) about two weeks from today to get the book listed with the retailers (i.e. Amazon) and then the retailers will need some time to get the book listed on their sites. You will be able to purchase the book through a variety of retailers either in hard copy or eBook format. The regular copy is $15.95 and will be available through the Outskirts Press bookstore, Amazon.com, and Barnes and Noble.com. All three retailers will also provide the eBook format for $4.99 (Amazon and Barnes and Noble) and $5.00 (Outskirts Press). I will be honest: the commission I receive on the eBook is much less via Outskirts Press. I am looking to use my initial royalties to pay stipends to my story contributors, so it does matter. Most importantly, after I receive and review the hard copy, The Sjögren’s Syndrome Foundation (SSF) will be ordering and carrying the book in their bookstore. If you are a member of the SSF, PLEASE purchase it through them as it will be offered at a discounted rate to you and the SSF will profit from the sale. Money for Sjögren’s research equals a win for all of us.
I will be following up with the marketing representative from Outskirts Press regarding the book going into traditional brick and mortar bookstores such as Barnes and Noble. Since I am new to the book publishing business, this is definitely a learning curve for me. The amount of information I received just today has been overwhelming, so one step at a time. The book has been priced and trade discounted to allow for maximum exposure in traditional bookstores.
I will be posting updates on this blog page regarding the book and frequent updates on the blog’s Facebook page which you can find by typing in Thoughts and Ramblings on Life, Love, and Health into the Facebook search box at the top of the page.
Thank you all once again for your support!
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.
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