Reflections and Resolutions

For the last 2 years on this day I wrote "I may not be free of pain just yet, but it is a goal I have set for myself for [2011 & 2012]." 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 2013 I will finish up with my surgeries (hopefully there aren't any crazy curveballs), 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.

In 2012 I had 3 surgeries which is half of the surgeries I had in 2011. I see that as progress and an accomplishment. I had my right shoulder reconstructed and I have regained full range of motion again. My shoulder finally stays 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 also had screws removed from a previous knee surgery and had a muscle release on the same day. A little over 2 weeks ago I had my sixth hip surgery and so far the recovery has been going smoothly. I am set to begin physical therapy this week and look forward to working with Cam to strengthen my hip, regain motor control, and overall get as strong as possible before the next round of surgeries in the summer.

A year ago I was still looking for answers for my headaches. We now have those answers in terms of a diagnosis and a potential plan. However, I am still not willing to go through with the cervical fusion and therefore, will not pursue any head/neck related surgery in the near future. I have considered seeking another opinion for Chiari in our area but have not set up any appointments or done any research at this point. Perhaps that is a small side goal but it is not a focus point at the moment.

I finished 2 more semesters at SJU this past year! I made Dean's List in both semesters which is something I am proud of. However, the best news is that I only have 2 more semesters until I graduate. I am officially a college senior! This year I will need to organize a plan of attack for nursing school. This includes finishing all of the prerequisite classes, getting letters of recommendations from professors, and making sure everything is ready when it comes time to hit "submit." I am very excited about my future nursing plans/goals but most of those will come in 2014 (next year's post)!

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 2013 Goals:

-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

-Possibly look into second opinion for Chiari 

-Apply to nursing schools....(getting in comes in 2014)

....and GRADUATE (commencement may or may not be in 2013)

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 2013...one (very small) step at a time ;)

I hope that 2013 is a healthier and happier year for everyone!

....and if anyone has any idea of how to get the NHL back in the New Year please feel free to share. I miss my Bruins!