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Showing posts from 2013

Looking Back And Looking Forward

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 consid…

What Does It Mean To Love Someone?

I have had the topic of love on the brain lately. And by love I don't mean just the romantic kind, but rather, the love that exists between two human beings, no matter what the relationship is. I was married six months ago, I went to a family wedding recently, I have ended several relationships in the past year for one reason or another, and I have this crazy dog that is getting older whom I love more than just about anything else in this world. My capacity to love is great and my ability to receive love is even greater.


We are so reckless with the term "love" sometimes. The words come tumbling out of our mouths, sometimes without a second thought. Maybe I am a bit of a skeptic on this topic, but to me, there is no such thing as love at first sight. I can hear the readers gasp as they read this, as I have made no secret about my overwhelming and whirlwind courtship with my husband. My attraction to him was immediate, but I did not "fall in love with him" at fi…

My Sjögren's Update (And It's Not About The Book!)

I think it has been a little while since I have posted an update about how I have been doing medically. There are many reasons for that; I was away on my honeymoon, I have been tied up with the book being published, and most importantly, I have been feeling better.


I started back on Plaquenil sometime in August as it was clear that the alternative medicine treatments alone were not doing the trick. They help, a lot, but they were not enough to keep me from having more complications, such as with my bladder. I wasn't doing terribly, but there was a lot of room for improvement, hence why I went back on Plaquenil. I never thought Plaquenil did much for me in all the years I was taking it, which is why I stopped it in February, but I may have been mistaken on that.


By the middle of September, I was still having a lot of issues with increased joint pain, especially in my shoulders, hips, and hands, swollen lymph nodes that were causing some alarm, fatigue, and this new interstitial cy…

Mentally Becoming A Runner

About seven weeks ago, I decided I was going to attempt running. For more of the back story on that, you can read about it here: Running, Sjögren's, Races, and Disney.


As I mentioned in that blog post, this running thing is a big deal. First and foremost, it is a big deal because of my autoimmune issues, which include problems with my joints, asthma, fatigue, etc. The second reason it is a big deal is because I was told that I would never be a runner due to these issues. I will admit, it has been a challenging seven weeks. The very first time I ran, I thought there was no way in hell I could keep this up, never mind get up to the 3.1 miles needed to run my first 5K. At that point, a race was just a pipe dream.


For the first two or three weeks, I would run only a mile, and then feel like I was going to die afterwards. But also like I mentioned in the previous blog entry, I became very dedicated to doing strength training and other activities, such as yoga and Pilates, which would …

Tales From the Dry Side Now Available!

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 w…

Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren's Syndrome: Published!

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 …

Disney Honeymoon Part Two: Getting Myself Around Disney World

I wasn't sure exactly how I was going to do this whole Disney blog series. I originally was going to write about it park by park and I still may do that, but today, I want to go with what I think is most important and that is how I, Christine, a person with Sjögren's syndrome, and a lot of complications that come along with that, managed to get around Disney for eight days.


If you would like to read my first Disney Honeymoon entry, you can find it here: Disney Honeymoon Part One: Animal Kingdom Lodge.


Previously, I also wrote a blog entry, before going to Disney, that you can read here: To Scoot Or Not To Scoot, That Is The Question. It is the precursor to this blog entry about how I struggled with the decision about whether or not to rent a scooter for our trip.


As all of you know who have been to Disney know, they have a bus transportation system that runs throughout the Disney property. We did stay at a Disney property called Animal Kingdom Lodge (AKL). I did quite a bit …

The Impact of Tales From the Dry Side

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 enou…

Women of Faith

This weekend I had the opportunity to once again attend a Women of Faith (WOF) conference. For those of you not familiar with Women of Faith, it is an organization that runs events all over the North America. They are a Christian-based group based in Plano, Texas. They produce several types of inspiration events with a mission to connect or reconnect Christian women with their faith. The arena events are scheduled throughout the year and every year, there is a different theme. The theme for this year's conference was "Believe God Can Do Anything"." Last year was the first year I attended the conference and to be honest, I am not sure how I originally heard of it. But I had the opportunity this year to go again with my aunt/friend, Jean, and once again, I was not disappointed.


Like last year, I was also not feeling well once the first weekend of November came around. Last year, I was struggling with sudden abdominal pain and some vomiting. I ended up in the hospital…

Yoga and My Body

This past April or May, I started taking a gentle yoga class at my gym. I have been pretty consistent with attending the class, with the exception of a period of time this past summer when I was not feeling well and at the doctor all the time. It is a gentle yoga class with a wonderful instructor, who has gone out of her way to show me modifications to help accommodate the joint issues with my wrists and knees.


Since I started the classes, I have seen some dramatic improvements in my flexibility, strength, and balance. As some of you may remember, I dealt with a bout of Guillain-Barre in February 2012 which required me to go through months of physical therapy to regain full functioning of my legs. However, I continued to struggle with mild balance issues at times. Since starting yoga, my balance issues have all completely resolved. I probably have better balance now then I did pre-Guillain-Barre.


I have noticed in my last several classes how far I have come in the class in terms of b…

Running, Sjögren's, Races, and Disney

As a child and teenager growing up, I was not the athletic type. One of my worse memories as a freshman in high school was having to run a hundred yard dash in gym class. And then a relay. A relay involves team members and after the hundred yard dash, I was known to be the slowest runner. Of course you know what that meant. I was the last person picked for my relay team. I was embarrassed and humiliated; which was a common occurrence for me in gym class, except for when I was playing volleyball. I was, and still am, decent at playing volleyball.


Over the past several years, I have been working on my fitness level. I have lost about sixty-five pounds and I am probably in the best cardiovascular shape of my life. My joints are often a mess but my heart does just fine. I pale in comparison to many other people who can spend hours at the gym, but I know I am doing the best I can with this lousy autoimmune illness, so I try not to compare myself to others; just to myself.


About two years …

The Patriots, The Red Sox, and Me

Yes, I know I am supposed to be writing Disney blog entries right now, but sometimes I just have to go with whatever thoughts are running around in my head and today, it is about sports. Yes, you heard me correctly; sports! I realized as I was getting ready to write this that I don't think I have ever written a blog entry about organized professional sports or sporting events. What a shame.


In all honesty, I have not been to too many professional sporting events. Until this past year, I had been to maybe two Red Sox games when I was younger, a handful of minor league hockey games, and one Boston Bruins hockey game. I come from a family of New England Patriots fanatics, but I never cared too much about sporting events until sometime in my early thirties when I was trying to make my first marriage work by attempting to meet my ex-husband halfway. I thought that participating in some of his interests would help our relationship. That didn't work out obviously, but I did develop s…

Kickstarter Contributors: Tales From the Dry Side

As many of you may remember, I did a Kickstarter funding campaign this past summer in order to raise money to self-publish my first book, Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren's Syndrome. The campaign was an astounding success and I exceeded my fundraising goal of $7000 by raising $7305.


The campaign was based on a rewards program, which provided an incentive based on the dollar amount donated. One of the incentives was that the contributor's name would appear in a special blog entry on Thoughts and Ramblings. This is it!


I feel like I don't have adequate words to describe the gratitude I feel towards my Kickstarter contributors. All of them believed enough in this project, and in me, to donate their hard earned money towards my dream of publishing a book that talks about what it is like to live with this challenging illness. Sometimes I lie awake at night, right before I drift off to sleep, thinking about how many people this…

Disney Honeymoon Part One: Animal Kingdom Lodge

Exactly one week since we have returned from our honeymoon at Disney World and I am finally getting some time to start my blog series about the trip. I am not sure yet how many parts there will be, but I am guessing at least six or seven separate entries. Some of the writing will be informative and some of it will describing my own personal experiences; especially in relation to how I managed my illness while traveling.


Today I will be focusing on the hotel we stayed at: Animal Kingdom Lodge. My husband took his kids to Disney years and years ago and stayed at one of the value resorts. I went with college friends about twenty years ago and stayed at a Red Roof Inn somewhere in Orlando. Because this was our honeymoon, we wanted to stay somewhere special and it was very easy for us to decide that we both wanted to stay at Animal Kingdom Lodge (AKL).


During a very scary emergency room visit in February 2012, I asked my then fiancé to talk about something good to distract me from the fac…