A New Start... ~ Living with Ehlers Danlos Syndrome

It's time to reflect on the past year and set goals for 2012! Last year I wrote, "I may not be free of pain just yet, but it is a goal I have set for myself for 2011!" Unfortunately, I did not accomplish the goal of being pain free but I have taken more steps towards that overall goal. It is easy to say that that is my goal for 2012 as well. However, after learning more about myself and my disorder I have come to understand and have accepted that I may never be 100% pain free but I will do everything in my power to be as comfortable and as pain free as possible. It's all about the mindset.

In the past year I have had 6 six surgeries. Some minor hardware removals, other reconstructive surgeries...including my RPAO. Thankfully my surgeries were combined so that I wasn't under anesthesia 6 times. There will be more surgeries in 2012 but hopefully not as many. I am still recovering from all of my 2011 surgeries. In February I will start back at therapy with Cam and will work hard to regain motor control and function. Better mobility is a major side goal. I also have more diagnoses and symptoms to deal with in the beginning of this year but I have plans set up to find answers.

I went back to school this fall and successfully completed my first semester back after taking a year and a half off. It was definitely a challenge but I feel very accomplished that I was able to push through despite discloations, therapy, and pain. I even made Dean's List! I am looking forward to a full year of classes this year. I feel 'normal' being back at school and going through a normal schedule.

I have learned more about myself, my disorder, my capabilities and strengths, and I have made adjustments to my life. 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 blessed.

My 2012 Goal:
-Stay positive and keep living my life despite Ehlers Danlos Syndrome. Work towards living as pain free as possible by staying committed to my therapy.

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 a positive step towards a pain free life..one (very small) step at a time ; )! I hope that 2012 is a healthier and happier year for everyone.

Oh and to sum up 2011 in a few words... THE BOSTON BRUINS WON THE STANLEY CUP!

To get up in the morning only to know that you have to face another obstacle takes strength. To smile when the only thing you can do is cry takes bravery. To act happy and laugh when you know that times are at their worst takes courage. To be joyous when the only good news is the best of the bad news takes support.