January 18th, 2011

Posted on by Carrie Siubutt

Disabled, Handicapped, Crippled, Retarded.

These labels used to swirl around my head often when I think about Dystonia.  I have to say after much work, I don’t let these labels get to me.  I have been given a challenge that makes life interesting.  Today, I had a challenge training session when I admitted to my Equinox trainer that my left hand was contorting a little.    So we modified, lighter weights, more reps…

Modifications, limitations – these are labels I now use.  I don’t let Dystonia get to me.  So worse case I can’t run a marathon on my two feet, maybe I modify and complete it in a wheelchair.  I need to let my brain work with the DBS; not against it.

I am going to the doctor next week and hopefully this terminator will get a great tune up.  But either way, life has a way of presenting challenges daily…the question is do you sit there and cry or do you attack the situation with a game plan to modify.  We all have limitations that’s fine to admit, but never dismiss your life to a label others call you…define your life…and dream…no dream is too big!

January 15th, 2011

Posted on by Carrie Siubutt

Broken Foot, Tremors, I am thankful.

For some 2011, may have been a super start, for others life has already thrown many curve balls in their way.  For me, I may have been thrown some lemons, but I am making lemonade!

I found out 2 weeks ago I broke my foot in my NYE race.  For a period of 24 hours I felt sad for myself, then I realized that wasn’t my style.  I am still working out 6 days a week, doing upper body training, pilates and “cranking” riding with my arms and still kicking butt!  Lemonade variety #1

I have also been experiencing tremors again in the last couple of weeks.  Not ideal.  But honestly I didn’t even flinch. 2011 is not proving to anyone but myself of what I can and cannot do.  So what if I can’t do another MUD race?   It is okay because I did 1!  how amazing!  Life is about attacking the hills….the tremors are temporary, I am seeing my fav person Joan in two weeks to see what’s wrong.  Lemonade Variety #2.

You grow stronger from life’s setbacks.  Life is amazing and unfolds everyday.  Smile.  I am stronger than this hill everyday!  I never used to like lemonade but varieties 1 and 2 taste alright to me today!

January 2, 2011

Posted on by Carrie Siubutt

Happy New Year!!! at 12:01, I celebrated 2011 by running 4 miles in Central Park.  It was the firsts of many – first time running 2 miles non stop and first time I ran about 90% of the course.  I felt super strong and ready for what this year is going to bring me.

Today I started “Born to Run” and I realized we all may not be born to run but that shouldn’t stop any of us from trying.  I have done plenty of stupid over training tactics in the years past, but this week I am going to try and see a doc, get this stress fracture looked at again and let it fully heal so that I can accomplish this year’s big goal of 26.2.  I am going to train properly, eat properly and get to cross the finish line of 26.2.  Dystonia, won’t hold me back and neither should I.  This year is about being slow, steady and confident!

thanks to my team for getting me across the finish line –

Happy New Year and I am looking forward to all that 2011 is going to bring me!!

December 26th, 2010

Posted on by Carrie Siubutt

2010.  Falling, learning, standing stronger. 2011

2010 was such a year of learnings about limitations, modifying, reminding myself I am bigger than this hill everyday and admitting I just can’t do it without my cheering squad.  I am the person I am because of my friends and family, they are my foundation.  They remind me that as much as I am the “Terminator” part robot part human, the human part is the part I need to take care of.  My fan club is my greatest strength of motivation and my best reality check.  Days when I want to pretend that THAT limp isn’t back or I don’t have a slight tremor, they are the ones that remind me to modify and not push.  Humility.

This week I had a tremor episode at work and was so embarrassed at work to be shaky that I started to panic because I didn’t want people to say “OMG, she is such a freak”; of course the complete opposite happened.  Everyone was very encouraging and offered support and words of encouragement.  Lesson learned – getting tremors is part of my Dystonia life.   People don’t think of me any differently.  I need to get unstuck in my own head.  Acceptance.

2010.  Life has a way of giving us gifts that are unplanned.  Where I am and what I have accomplished is not what/where I thought I would be – it is better!  I am challenging myself in new ways – professionally, personally, athletically and growing in ways I didn’t know were still possible.  Open Mind.

As I think about what I want to achieve next year, as always on the list will be the proverbial 10 pounds, to work out every day, but more importantly it is just having an open heart and be open to what life is going to throw in my way every day.  Life is not what says in Outlook, it is what happens every day as I leave my apartment in the morning.  I just need to remember to be true to myself, to be honest with others  and remember that “I am bigger than this hill everyday”.

I would like to thank my mom, dad and sister – Suzie for constantly supporting my crazy ideas and are constantly cheering for me.  Carolyne (“coach”) and Liz(“rev”) for being a part of my Mud adventure, we are bonded by this experience forever.  Both of you crazy chicks constantly carry me to the finish line and you believed in me when everyone else just thought “give it a shot”; you both knew I could do it.   The 900 NM Equinox team – Jason, Drew, AJ, Dawn and the rest of the team, you encourage me to dream bigger every day.  Thanks to the Dystonia Medical Research Foundation for believing in me and allowing me to run these races on behalf of your foundation.  Thanks.

2010 – You were great! 2011 I KNOW you are going to be amazing!!!!!

 

December 12, 2010

Posted on by Carrie Siubutt

Fortitude.  Frustration. Strength.  Smile.

This weekend has been quite a weekend of learnings – believing in myself and trust in others.  I decided to be honest with my trainer, AJ at Equinox and let her develop a program to help me be stronger in my racing endeavors.  In two short weeks I have seen a difference in gait and balance.  Yesterday despite the Chicago weather I went to the gym for a run.  I accomplished a goal which hasn’t happened in years – I ran 5 miles on a treadmill.  I felt a difference in my gait and my running ability and completed 5 miles…I was so amazed to accomplish this goal!!!  I have yet to stop smiling because I know 2011 is going to be the year!

So as I look back on 2010, I started building the foundation for my future runs…2011 is shaping up to be an amazing race year.  Many friends are going to be out there supporting me and being there for me in multiple races.  I am looking forward to many more muds, many more half marathons and whatever else is in store for 2011.

I can’t do this by myself and won’t.  My cheering squad will be with me all the way- My friends and family make me a better person.  They are all my rocks.  They let me choose my pace and follow.  I am inspired by all of you.

I am planing a big Dystonia run in the Shamrock Shuffle so please reach out to me or the DMRF foundation if you want to help me continue to raise awareness of the disease and help me run for every one that can’t.  Running across the finish line and smiling, there is nothing more to life than that…

 

December 1, 2010

Posted on by Carrie Siubutt

Open. Honest. I have Dystonia.  Stubborn. Stupid.

These are all emotions that have been circling me quite recently.  I am learning how to grapple and not be embarrassed by admitting I have limitations.  Today, a friend of mine said to me “carrie, we all have limitations, stop being stupid.” He was right.  I am more open and honest now than I have ever been about my disease but sometimes it still hurts, it still makes me sad.  I have decided everyday to practice to learn how to be honest with myself, old friends and new friends along the way.

Honesty will only help me become stronger physically and mentally.  Telling my trainer “I have a really rare disease” is not anything to be embarrassed about but likely is the right thing to do.  Informing her that I need to focus on certain areas is probably the most helpful thing to do.  Sometimes the words are painful to say but I know everyday that when I tell people I am having a bad day or I can’t do that exercise, I am not being weak, but instead being strong.

Today was a run and a swim…and the training has begun for all 5 races I have planned….but more than that today was about learning how to train my brain to start saying the words “I have Dystonia” and realize that I am a strong person whatever I do daily, because I have already done the impossible….”we all have our limitations”….I just need to start admiring mine…

November 25, 2010

Posted on by Carrie Siubutt

Giving Thanks. Today AND everyday.

I believe everyday is a day to celebrate life and be thankful.  I am thankful to have so many loving and supporting friends and family.  I am thankful for everyone that supports me in my sporty endeavors.  I am thankful for having success with my brain surgery.  I am thankful that I am learning everyday how to celebrate life and be thankful that I am able to use my DBS success to inspire other Dystonia patients to define their personal success.  Mom, Dad, Suzie and everyone else….I love all of you that cheer for me daily, believe in me and make me a better person!

Enjoy the love and warmth of turkey day but bring that thankful spirit not one day but everyday!

 

November 21, 2010

Posted on by Carrie Siubutt

Family, sisters, Dystonia.

This week I went on a cruise with my entire family to the Caribbean.  My sister and I share more than just the same parents, we also share a common disease – Dystonia.  We may both have Dystonia, but we have very different lives.  The DBS has been successful, but I can publicly admit, my success has been better.  I forgot after almost 5 years of running how lucky I am and this week as I walked with my sister, I remembered the old days, the days when I was passed by, too afraid to try anything because I was embarrassed or thought I couldn’t do adventurous things…This wasn’t going to happen to Suzie on this trip…I made sure that we did stuff that she knew she could do, maybe with the help of big sis…

I am so proud of Suzie, she didn’t let the Dystonia scare her from being adventurous-she ziplined in a forest in mexico, swam with dolphins in cozumel and worked out with me!  She owned her life this trip, she had fun, we tackled all obstacles as a team….when the ship was ready to leave, I took control and got us a tram because she was tired…Always remember, sometimes 5 minutes in your day or a week to help someone..a helping hand or a simple “you can do this”…can make a world of difference and help someone feel “normal” … creating a lifetime of memories…

November 7, 2010

Posted on by Carrie Siubutt

Why run?

Last week my friend Liz sent me this awesome article about running marathons and I met to blog about it, but life got in the way.  Today I was reminded by many Facebook updates about my friends completing the NYC marathon.

This is a great article about why running is so amazing and how powerful and therapeutic it can be, if done without 14 gadgets, but instead the runner, a pair of shoes and a spirit for a personal best.

http://nyti.ms/bEYGaa

I find that personal best in every race.  I am beating all odds and it has been about a month since Tough Mudder, but lets be real my body needed the break.  I pushed it to its limit and recovery is equally important as my training.  In about two weeks, I plan to start training for 2011 race season!

I run because I have Dystonia and every day is a miracle and every time my foot touches that ground I often tear up.  What’s your finish time? What’s your pace? My answer to these questions – I finished with tears in my eyes.

My goal now is simply to inspire myself and others to find their inner athlete and find their personal best!  My friend John ran his first half marathon today and said I inspired him to run.  I can’t wait to run a race with him and others next year.   Run for what inspires you to be the best person you can be!

October 24, 2010

Posted on by Carrie Siubutt

Sometimes we forget….Sometimes we just need to be reminded.

Two weeks ago, I ran the race of my life and two weeks after I spent the entire weekend in my apartment.  Why?  I got a cold and often times when I take cold medicine, it affects my Dystonia.  I thought I could take a class and almost hurt myself.  Sometimes I need to be reminded, I am special, I suffer from Dystonia.  I am not ashamed of it anymore, it is who I am…but I forget!  The irony is that the Dystonia is the reason why I am so passionate about fitness!  I sometimes need to be reminded that my body is special, it is not “normal” …this weekend was one of those reminders!  Thanks flu!  I owe you one!