Wednesday, April 23, 2014

Coming Full Circle


In 2010, I had the great fortune of attending the Sjögren's Syndrome National Patient Conference in Hartford, CT. As I have written about in my book, Tales From the Dry Side, attending that conference was a pivotal day in my journey with this illness. When I attended the conference, I didn't even have a diagnosis yet, but somehow, God led me in the direction of that gathering and it was there that I met my current rheumatologist, Dr. Parke. It was also there that Dr. Parke agreed to see me for a second opinion. Well, it was a fifth opinion, but it didn't matter because she was the one who finally diagnosed me with Sjögren's syndrome.


During the summer of 2011, I received my diagnosis and by November, I had decided that I wanted to write a book that brought together many different patient stories in one place about this often misdiagnosed and misunderstood disease. It was a full two years from the time I started the project until its publication in November 2013. Those two years were filled with a lot of hard work, learning, disappointments, and doubt. But the end result has been this incredible resource for patients, families, friends, and medical professionals. Some patients, who have written to me, have said that Tales from the Dry Side is a beacon of hope. Family members have told me that they finally "get it." And, medical professionals have written that they had no idea how complex this illness could be. Thanks to my twelve fellow book contributors, we have a made a difference in this world.


In fourteen hours, I will be leaving for the airport to fly to Chicago for this year's National Patient Conference. I will be speaking on a patient panel and doing a book signing. I will have the opportunity to meet in person, for the first time, one of my fellow book contributors, several blog followers/friends, and people from the SSF organization that I have known for so long via e-mail and phone calls. I have no words to adequately describe the anticipation and joy I feel over this opportunity.


I will also have the opportunity to hear my own rheumatologist speak on a physician panel; four years after I initially heard her speak in 2010. How different my journey has turned out compared to when I first met her in Hartford, CT. I have gone from a scared, lost, and very sick patient, to one who knows more about her illness than most in the medical community. One who can utilize her challenges and difficult times to help others. One who has learned how to cope (on most days!) with the devastating effects of Sjögren's syndrome. I don't say this out of a sense of pride, but rather to show that it is possible to not only survive, but thrive, with this illness. No matter how sick you are or how discouraged you may get, you have something valuable to offer to this world.


I have been doing a lot of thinking this week about this coming full circle thing. I have not gotten here alone. Yes, I am going to the National Patient Conference to represent Tales From the Dry Side, but I am representing so much more than one book. I am representing all my fellow book contributors, and every single person I have ever met with this terrible illness. Behind this book is the financial support of over one hundred people who contributed to the book's Kickstarter campaign last summer. The book is backed by the countless friends and blog readers who have emotionally supported me on this journey.


I am able to get on a plane in fourteen hours for this journey because I am blessed by the grace of God and by an incredible family and circle of friends that love and support me and this book every single day. From the bottom of my heart, thank you. Thank you for believing in me and for always supporting my writing. Mostly, thank you for just loving me.

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