Chuggin' Along into 2014

For the last 3 years on this day I have written "I may not be free of pain just yet, but it is a goal I have set for myself for [2011, 2012, and 2013]." While I still have not accomplished the goal of being pain free, this year I am going to change the goal as I don't believe "pain free" living with EDS is entirely realistic. I have residual pain from almost every surgery and I know that I will forever have some level of pain. I have accepted that I may never be 100% pain free but I will continue to do everything in my power to be as comfortable and as pain free as possible. Instead of hoping for a completely pain free year (and life ahead), my goals for the coming new year are more specific and realistic.

In 2014 I will finish up with my surgeries, strengthen muscles to maintain stability, regain longterm mobility, and remember that while my situation may not be perfect or ideal it can always be worse and I have a wonderful support system behind me! It's all about the mindset. This coming year, 2014, will be a major turning point in my life as I will embark on my journey to become a nurse--after all EDS may be a big factor in my life, but it is not my life. EDS does not define me. I still have goals and dreams that I will accomplish.

In 2013 I had 3 surgeries, though I was supposed to have 6 (a kidney infection a week prior resulted in a modification of the original plan). The remaining 3 surgeries have been postponed several times and will happen in March of 2014. I had surgery on both the left and right knees. I have reached a point where my left knee is about as good as it's going to get. My right knee, on the other hand, needs more work. I also had right hip surgery this past summer. My ITB was released, though because of anteverted femurs, I still have snapping hip. This will be readdressed in my upcoming hip surgery, along with a scope to repair the labrum (which is likely ripped to pieces) and fix FAI (impingement). My right ankle was also operated on and I had an AFO brace customized. The goal of the brace was to correct the anatomical position of my lower leg, as well as allow me to put the walking boot on the shelf. I still have pain, though the brace has helped. Hopefully we can avoid another ankle surgery in March but that is still an option if things have not improved.

Though I have finished my shoulder surgeries, I am still happy to report that both shoulders still stay in place and I couldn't be happier. It is hard to appreciate something as simple as waking up in the morning with your joints in place until you constantly wake up with them out of place. I still have scapular pain on the right side but I can handle that as long as there are no dislocations.

I still have headaches from Chiari but nothing has changed in terms of my level of functionality and my willingness to go through with a cervical fusion.

I am officially done with my undergraduate education. I finished my last semester at SJU this fall and I will walk in May with the Class of 2014 (I am the Class of 2013). I have also been accepted into nursing school and I will begin in June. I have worked hard and I am proud of my accomplishments, though I still have a lot of work ahead of me until I am a certified nurse! Thank you to everyone who has supported me and provided encouragement throughout my journey. It was difficult, but worth it.

2013 was also a very special year for my family. My uncle got married and had a baby girl! I now have a new aunt and cousin and I could not be happier for them! This summer we celebrated the wedding in NYC and it was great to see extended family.

Two of my best friends also got married and I was honored to be able to celebrate with them at their wedding!

The Boston Red Sox won the 2013 World Series going from worst to first! The Boston Bruins returned to the Stanley Cup Finals, though unfortunately came up 2 games short of lifting the cup again. Hopefully Boston sports teams continue to challenge for a championship. After all, Boston is the City of Champions!

Every year I continue to learn more about myself, my disorder, my capabilities and strengths, and I continue to make adjustments to my life (when necessary). I am blessed to have a wonderful and supportive family. I have an amazing group of friends who have been there for me during the rough times. Having a wonderful support system of family, friends, doctors, surgeons, and therapists makes this all possible. I am truly blessed. 

So without further ado...

My 2014 Goals (strikingly similar to 2013):

-Stay positive and keep living my life despite Ehlers Danlos Syndrome

-Finish up with the remaining surgeries and recoveries

-Regain better longterm mobility and function

-Increase overall muscle strength for stability 

I may live with an incurable disorder and face challenges everyday, but this doesn't stop me from living. I truly "live" with Ehlers Danlos Syndrome despite the challenges I face. I don't let my disorder define me and I don't hide behind it. I live each day with a positive and optimistic outlook and I try to "conquer" EDS...always remembering that there is someone who is fighting a tougher battle. This doesn't mean that I don't feel pain, but it puts my suffering and struggles into perspective. I am allowed to have my moments, but living in self-pity and talking about pain all the time puts a major spotlight on pain and struggles. That's emotionally draining and I just can't live that way. I don't want to focus on the negatives of my disorder. I want to focus on living my life...EDS just happens to be something I have to deal with. Remember, "you can't always decide what happens to you, but you can decide how you react."

So again...here's to taking positive steps in 2014...one (very small) step at a time ;)

I hope that 2014 is a healthier and happier year for everyone!