Run Carrie Run!

Changes…

On my run this morning I had lots to think about.  The season is changing, my zip code is changing by 2000 miles and everyday my gait changes.  The only thing constant in life is change…This is one of the mantras I remind myself everyday…Running for a person with Dystonia is quite challenging, everyday is a new surprise on how my feet will land on the pavement.  I never know what tomorrow’s run is going to be; today was no different.  I woke up at 5am to beat the South Florida heat and today’s 7 miles was more challenging than the 16 I did 2 weeks ago.  I didn’t get frustrated, I took today’s situation in stride.  I tried my best and did what I could squeeze out.  I am so thrilled to be running the Chicago marathon in October 9th…I am excited, scared and I know whatever happens I gave it my best!  Some of us are meant to be runners, some of us take the miracle of science and sheer determination to make it happen.  The next 30 days will be alot of running – in a new city, a new temperature but I know whatever happens…change is inevitable, somedays my feet will help me, somedays my feet will need a break…Each day brings a new surprise and however my gait changes, I know that change is constant and my dream to run a marathon will one day come true!!!

Please help me find a cure for Dystonia by donating whatever you can to support me on my run!

http://www.rsvpbook.com/event.php?460916

Wow. Miracles. Dystonia, Wheelchairs. Glitter

I run because I can.  I woke up this morning thinking I may not be able to do the 15 miles I committed to do.  But I got over that quickly and ran/walked 16.2 miles!!!!  I knew I would be able to run today because of all the children I met yesterday with Dystonia.  Kids that you would never think have Dystonia to those whose bodies were so tightly wound up I am not sure how they ever get the chance to feel relaxed.  Yesterday, I met the cutest little girl (6-8 years old) whose Dystonia was so bad she was in a wheelchair, has limited use of her arms and could barely speak, but she had swag!  Swag you say?  Absolutely, check out her shoes below!

Her shoes were silver lacings, rhinestones on the front of her shoe and glitter on the petals of the flower.  Her smile was so infectious.  Her mom was the sweetest person ever, helping decipher what her daughter was trying to tell me.  After I told her what I was doing, she said “hug”?  I fell in love…I knew this morning when I laced up for today’s run, it wasn’t about me, it was for every child or adult that has dystonia to help find a cure!

Please help fund research and donate to this wonderful cause..and if you donate today a wonderful donor will match all funds raised!

http://www.rsvpbook.com/event.php?460916

Don’t Stop Believing….5 years ago…if only…5 years later…I CAN!

My inspiring song of the day…

As I am in full on training mode, I am also trying to figure out the science on hydration and nutrition…it is all new to me since I never thought I would be full on marathon training.  I am learning that training is all about the mind, the legs and the fuel to go on….as well as the people that are cheering you on.  I am on track a little behind but my goal is to finish in the time it took me to have brain surgery….around 6 hours!  I am not pushing, I am definitely slow and steady but I have finally figured out what to think about when I am running.  My highs/my lows in life and then when I think I can’t go on  April 4, 2006…the day that changed my life the day I did believe that something great was going to happen.  I am as optimistic as the day I had surgery that I am going to cross this finish line and if I don’t there will be others and I will never stop believing or running!

Please help support me as I run to raise funds for Dystonia research!

http://www.rsvpbook.com/event.php?460916

Dogs Days Are Over….Chicago Marathon here I come!

This week’s kick Carrie’s butt song…..

This weekend I did 13 miles!  The first 10 miles were great…good music, and every time I thought I was tired I kept on thinking about my sister training, my legs finally being one with the ground and being at peace with my Dystonia.  The lake as always was amazing, I passed one of my favorite Equinox instructors Julie, paced myself with these 2 older women and smiled at anyone who let me smile at them.  I always wondered what to think about for such a long run and yesterday it wasn’t too hard…great friends, the dougie (the dance), my sister training for her 5k, wheelchairs, my brain surgery and finally reminding myself that I should try and do the marathon in the time it took for my first brain surgery – 6 hours.

I couldn’t run this without medical research, without those who spend all their time searching for cures for Dystonia and in return, I run for those that tirelessly work to help find a cure!

Please donate anything you can to help…

http://www.rsvpbook.com/event.php?460916

It’s not the destination, it truly is the journey!

Yesterday was one of the best physical days I have had.  I completed 10 miles.  I did it through the Jeff Galloway method…I ran 3 minutes and I walked a minute.  I adapted, I don’t need to train the way everyone else is, I am not everyone else.  I am a Dystonia patient, who with the use of wires and stimulators and a lot of drive and stubborness will never let the disease take the best of her.  I cried on mile 6.  Not tears of pain but tears of joy.  I still dont believe it some days.  I had to pause and  walk…I couldn’t let that moment pass me by.

I also then thought of my sister who reached a major milestone and walked 2.5 miles yesterday – something not so easy for her…to be honest some days not so easy for me…but every step is one more step I have in me and one step we all have in ourselves.  One of the lessons I have learned with my sister this week is that once she decided that she had the will to do it, she did! We all have to remember that we can try and beat the disease! Some days it seems impossible, but never give up there is always tomorrow.  When there are moments your mind tells you to give up, dig deep, find your heart and soul and all of a sudden you will be 2 more miles further.  The hardest part is often getting up for the run but when I get to the lake and see such diversity – wheelchair racers, women and men in their 70s, people you can tell have their personal demons, I get excited.  Yet, we all smile to each other and acknowledge we are on the same journey.

Enjoy the journey!  I am, not pushing myself, but digging deep.  I am training for the Chicago marathon, not sure how much I am going to complete, but I will still cry and I will still be thankful of how lucky I am!

Running for Dystonia.  Running with Dystonia.

I am beyond excited to start training for the marathon (even though I am only planning to do about 13-15 miles).  For the first week in a long time, I feel great.  Its been awhile  quite frankly that I have felt this great…since last summer I sustained 2 stress fractures, a broken foot and some minor battery issues.  Last Saturday marks my come back.  I am running again, doing my pilates and getting my strength training in as well.   I learned a lesson from the last year.  I have limitations and instead of ignoring them, I am working within the parameters of my Dystonia. I run. I run/walk.  I pace at 13 minutes.  I have 4 miles to run tomorrow.  I will do my tempo drills.  I will do it at my pace.

Last new year’s my friend Carolyne said to me I had no idea how hard it is for you to run.  I said it is, running for me isn’t about floating in the air and becoming one with the road…it is about thinking about every step and reminding myself to make sure my right foot does invert on the landing.    But it is also about thinking about every child that is in a wheelchair and that can’t run.  I am happy to spread the word about Dystonia through my running.  I would love a child, teenage or young adult to read this website and be inspired to lace up and walk or run or whatever get on a spin bike and ride….It is not about 26.2, it is not about winning, it is about doing your personal best.

New Year’s Eve, I felt bad Carolyne who paces sub 9 was running with me at 12+ pace and I kept on saying to her “I am sorry”….I have left that guilt in 2010…There is nothing to be sorry about; quite the opposite…She looked at me and said it is my honor to run with you my friend.  My friends are my source of energy and who make me want to get across that finish line…Be inspired, take your friend’s hand, and do the best you can do!

And it Begins…and it begins with me!

I woke up this morning to emails from friends and family who all watched the clip from Living Healthy Chicago and the words that kept on repeating in the emails were inspiration, motivation, hope.  I decided today that I am going to run as much or as little as I can of the Chicago Marathon. My goal is to do the first 5 miles and the last 5 miles to run with my best friend Liz who is running for Dystance for Dystonia with me.  Liz has seen it all: the ups, the downs, the limps, the brain surgery, the finish lines, the scars, all of it.  I am truly honored she will be running this with me to raise money for a cure.

Today, I started running – I ran about 3 miles and loved every minute of it.  When I needed to stop, I stopped.  Running with Dystonia is not about beating PRs or timing myself; running with dystonia is about sharing the awareness of the disease…letting others know that Dystonia is not a death sentence and most of all letting others be inspired to get up lace their shoes and do what is your own personal goal.

For me 10 seems reasonable.  Maybe even 13 miles…But its not about the distance or the time, it is about the run and the journey of getting there.  I have limitations, I acknowledge that; but I also love the ability of inspiring!

Please support me in raising funds for the Dystonia Medical Research Foundation!

http://www.rsvpbook.com/event.php?460916

Here is the clip from my interview on TV…

http://www.cltv.com/videobeta/5ccead6f-6399-4492-afa2-423a3cb24385/Health/Dystonia-Profile

I wish I could make it a little fancier or a little better but my code writing isn’t great!  This is one of the best things I have ever done on my journey with Dystonia.  Learn to be open, learn to accept that Dystonia is a part of you and love yourself for the journey that you are on….no matter how hard some days are, there are more days that are even better!

Its been a while since I have blogged but was waiting for my clip on Living Healthy Chicago to air and it was on TV this morning.  It was all about my life with Dystonia.  It was amazing telling my story; telling the TV community about my life with Dystonia….that’s never happened.  The plight of not feeling attractive, not dating, yet focusing on what I have – my brain and that was all I had.  My intelligence, my drive to be successful.  Seeing the clip made me understand my resistance to DBS, my legs were taken away from me  at 11 how could I risk my brain being taken away from me as well…None of this ever dawned on me till today.  Life changes, daily, you never know what each day brings and it became apparent in today’s clip that my right leg drags a little these days…but that’s okay.  I may just have to run a little slower now, but I still run for the 300,000 of us that life with Dystonia everyday…. smile…be grateful for all your friends and family that love and support you in your daily battle with Dystonia….Thanks to everyone for loving and supporting my in my crazy endeavors, I finally told my story on TV!

Clip to come soon…

When life hands you lemons…

Recently I have been thinking about taking time off from running because I have broken my foot so many times recently.  It dawned on me, my gait has changed…My feet are adapting and that is one of the interesting things about Dystonia…it evolves and you need to evolve with it!  DON’T get stuck…I was bummed for about 10 minutes and I decided I would take up power walking!  I am going to be that fast walker, fist pumping person who sings as she walks…I would always look at that person and think why isn’t he/she running but I understand now, they probably can’t.  So I am going to race this year, but 2011 will be all about power walking!  I will finish and I will continue to spread the awareness of Dystonia.

If anyone who is reading this post would like to run the Chicago Marathon and run for me and others that can’t  please email Tammy at treed@dystonia-foundation.org as soon as possible. The DMRF has been awarded a handful of post close entries that must be filled by June 30th and we would love to have you join the Dystance4Dystonia team to raise awareness about dystonia!  There is still no cure and research is still necessary to learn more about the disease!