November 3, 2014

Inspired. Awe. Giddy

This weekend I had the pleasure to fly to NYC to cheer on two of my friends while they ran the NYC marathon.  I stood in the blistering cold for 5 hours and I have to say the energy of the runners, the love of the families out there cheering made me warm – my toes were numb but my heart was so warm.  I was touched by the person who ran with no legs, the runners who were blind and those that didn’t have any legs.  Their strength and tenacity reminded me that each of us have our own strength –  it is how we decide to use it that separates the heroes and the average person.

I screamed for 5 hours, cheering every Jennifer, Bob, Matt and Melissa.  There were the runners that smiled everytime they heard their name and you can tell it were these moments when they realized all their training was worth it.  Every charity runner made me so proud from the Dystonia runners, to Team Fox and all the other charity runners out there – your bibs helped spread awareness.  I am still giddy high five-ing all those runners, just like those random strangers have done for me in the past.  I realized in that moment that helping others, showing my love for complete strangers when they least expect it makes me feel special.

The energy of that race is infectious.  It truly is a NYC special, one that I may have to think about doing in 2015…2014 was a slow year with 2 surgeries but already thinking of throwing back on that Bib and continue to spread awareness for Dystonia.  Quite frankly, it isn’t the time that matters, it is the strength and the heart of the person to be courageous and make the disability be the wind at their back!


October 5, 2014

Surgery round 2

No it’s not from Dystonia, No it’s not related to the “thing” I have.  I just had shoulder reconstruction 2 weeks ago and it has been an interesting experience.  Everyone wants to think it has something to do with my Dystonia, I just had a progressed shoulder arthritis situation and had to get my shoulder reconstructed.  Physically, brain surgery was easier – 1 day recovery, this surgery is about 18 weeks going to PT 2x a week.  I woke up very sad because after 8 years of freedom, I am confined to an arm sling and told what I can’t do….I couldn’t shake the feeling I knew this feeling before and I remembered it reminded me when I was confined to my ankle brace and couldn’t walk.

This one is different though…I am not waiting for a miracle cure.  I am going to work hard to get this shoulder rehabbed, I am going to take care of it, I am going to not lift more than 5 lbs…I am following all directions from the doctor!  I am asking for help, I am sitting in handicapped seating and am finally okay with it.  I am disabled and it is no different than having black hair, it’s just me!

This isn’t permanent this is just from being way to active and probably trying to cram 20 years of trying to be physical into 8 years! So I definitely won’t be running any races for the rest of the year per dr.’s orders but I am sure there are going to be some in 2015!  My lesson here is that Dystonia has nothing to do with the rest of my body, areas will hurt and those need care too!

August 5, 2014

28 years later…

Tonight marks a significant night in my Dystonia journey.  I went to a dystonia support group, you heard it my secret is out!  Not that much to my surprise I teared up a little as I said my intro…My name is Carrie and I have had Dystonia for 28 years…that’s right 28 and not only that, 1 brain surgery, 4 battery changes, 1 wire replacement, 1 marathon and 5 half marathons later, I am here to share my story, to change those “I can’ts” to the I can!  So again to my surprise I had all these Dystonia patients come up to me and say you are amazing, your spirit is so infectious as you smile about this disease and I said I choose to use myself as a billboard of positivity and hope.  

So tonight was a reality check, when times get tough, I can go for a RUN, when times get real tough I can go for a LONG RUN!  I am one of the lucky ones as the surgeon at the forum said you are one of those star cases!  I am so thankful and grateful for everything I have and I am so glad I can use my words to create a powerful message.

ps #funfact – botox was created for Dystonia patients first, then they realized it can take away wrinkles!

July 13, 2014

“Nobody Stops, Everyone Finishes!!!!”

One of my instructors says this all the time in class and it always resonates with me, isn’t that what life is?  No matter what pace or no matter what time, you are your own worst enemy…I have been thinking about it a lot this weekend.  For so many years, I always said I can’t….I have Dystonia.  Nowadays, I have been saying yes a lot more than I ever have.  I am trying to not use my Dystonia as a crutch, sure it may slow me down, sure it may take me a little more time but there is no reason why I can’t try that crazy exercise on the bench..and what I am realizing with this new philosophy is that 9/10 times I can do it (albeit slower) but I CAN do it!

So I wish I had those four simple words in my ears and in my head before because there are days I want to stop, there are days when I want to give up and then I think about it, I can’t finish this race if I stop! I can rest but I will NOT stop.  When I think I can’t run one more step, I walk! If set a goal of five miles, five miles is five miles any way you take it!  So I have to encourage my Dystonia friends don’t give up on your hopes, your dreams, Dystonia is your super power, use it!  We all have our bad days trust me, sit with it, be kind to yourself but don’t give up.  

It’s super cheesy but on my run today I realized, 8 years ago all of this was never in my cards, running marathons, tough mudders, but I never gave up…and days when I am not so great in other areas of my life, I remind myself that I am a living miracle.  I have had 3 people last week tell me I inspire them, inspire them to be active, inspire them to be healthy.  To be an inspiration is an honor and one that I will always cherish.  Never in my dreams did I think I could take a twisted disease like Dystonia and make it become such an inspiration for so many.  And that my friends is why I run!  I am NOT stopping..


July 8, 2014

Miracles.  You can do anything for 30 seconds.  My New Family

I was watching a TV show today and a patient received DBS and I started crying.  There are many reasons why I started crying – seeing the halo, seeing the Medtronic stimulator, hearing the doctor adjust the stimulators.  It was chilling and it reminded me of why I should spend every single day smiling.   It’s been sometime since I blogged but as always life got in the way.  In the last two weeks however, I have learned 2 important lessons:

1.  You can do anything you put your mind to…



I climbed the Great Wall of China…little old Dystonic me….it was such a miraculous day of days. I can’t begin to tell you the amount of emotions I had inside in me when I climbed that wall.  It was 100 degrees and I hadn’t done anything athletic in 6 weeks post my surgery that could really have prepared me for this steep and hilly climb.  There was self doubt, there was trepidation and then I thought to myself what were the locals thinking as they built this wall?  I CAN do this..and I did…I was sore for days after but I believed I could and I did.  Carrie climbed the Great Wall – check off the bucket list yay!

2.  You can do anything for 30 seconds.


One of my very good friends just opened up a Barry’s Bootcamp in my neighborhood and according to US Weekly it is one of “The Hottest Fitness Trends”, so of course I had to try it!  I went to my first class several weeks ago and it all looked so scary to me treadmills, risers, weights and my first thought was “I try everything once and if it’s too much at least I tried”.  Well 3 weeks later, I am still at it…It is difficult and when one of the instructors say go at a speed of 9.0, a 6.0 is just fine for me…i feel stronger every day, there are days when I am frustrated with my legs and then I push through and I build muscle.  Barry’s has become my family, a place where the instructors remind me you can do anything for 30 seconds; don’t stop you have this…and I never do because seriously you can do anything for 30 seconds.

One of my other favorite sayings is you have to work hard to achieve results.  They are right nothing in life is ever easy.  Deciding on brain surgery wasn’t easy.  Going through the surgery was the easy part, putting in the work post recovery was the tough part.  Going through battery changes, those are emotionally tough but you know what after every surgery I get stronger, and a little smarter.  Thank you Adam, Tara, Shauna, Erica and Alvin for pushing me for those last 30 seconds and reminding me to believe in myself.

So, I am back slowly getting in shape.  Still celebrating my wins of DBS and still learning every day over and over how to live in a normal world when even though I may look “normal” I am not. I suffer from Dystonia.  So bootcamp has taught me a lesson, attack every problem with all your strength, push through, believe in yourself and if you fall get back up and know you are a little stronger!

May 24, 2014

To miracles!!!

3 miles!! so exciting and a breathtaking sunrise. I am truly grateful for the friends and family that have helped me through the ups and downs of Dystonia, sometimes people say with Dystonia you lead a twisted life.  I disagree. You just happen to live a life with more twists and turns, but when you are “winning” it makes that feeling even more special.  To more early morning runs, increased mileage and more finish lines in my future!Image

May 17th, 2014

It happened again…

Six weeks to the day, I had my first run 🙂  It was a short one, 1 mile but that first mile post surgery is always the best mile!  I had such an amazing run, the water, the bridge, it all felt so familiar, so exciting!  I am so happy to have been able to lace up and gotten to go for a short run.  I walked after my first mile because despite one body the left side is taking a little longer than my right side to recover.  But despite just being able to run a mile, I feel very lucky, very blessed!  I walked and in the past when that used to make me sad, but someone once told me despite walking or running, you still cover the same distance…so I walked with the biggest grin ever.  I am back, going to ramp back up slowly, but just so happy and lucky to be able to do one of the things I cherish the most in life.  I can’t wait to start running to spread the Dystonia cause but in the meantime I am virtually coaching the ones who volunteered to run NYC for Dystonia, which is so coaching!  

To lacing up again!

If anyone wants to run NYC please respond to this blog and I can put you in touch with the right people!

May 12, 2014

Life is on the mend…

I have started slowly getting back to being a little physical after 6 weeks of doing nothing and 4 weeks post surgery.  I am taking things slowly…I always am so worried about my DBS and Dystonia that I also forget I am human.  I have been having persistent pains in my shoulder and my class instructor made me go to the doctor last October and we tried everything and the pain kept on getting worse.  And as the ortho tried to diagnose the problem he suggested an MRI.  I politely refused, and he knew why, he saw this…


The same xray I was looking at…and I was like you understand that because of my neurostimulator, my lifeline, I don’t have the luxury to have MRIs..So I said to him I can barely move my arm after four weeks of not doing anything and I guess the pain is only getting worse, why would this happen….and his answer cracked me up yet moved me, he said – most athletic people get injured from time to time…me, athletic?  Was he speaking to me? I looked around and I was the only person there…I repeated, well what are my options and he said after 6 months of trying everything and without means to MRI I have to go into the shoulder…so there we have it…The human side of me also wears down, experiences injuries, I am still human!  So though this sucks and my goal of running soon will still be postponed after that surgery, I am happy to be reminded that I am still part human!  

May 6, 2014

Life is a series of conversations…

This weekend, I had the luck of not only planning my 10 year reunion from Stanford but also had the honor of chairing the reunion committee.  That was planned since last October.  April 11th was not.  Battery changes are never planned they just somehow sneak their way into life.  So as I was planning for my surgery on April 10th, I was also firing off emails to my committee and friends reminding them to sign up.  The reality was I wasn’t even sure if I was going to make it.  I called my old roommate and I told her my dilemma and she said – Carrie, reunion can’t happen without you, you are class of 2004.

So 3 weeks post surgery, I rested with one focus planning an amazing reunion and making it to reunion.  It was epic!  I am so happy and inspired by so many this weekend.  I had classmates from all over the world come up to me and say – I love your running journey, I love seeing you 10 years later with a second chance at life, I love seeing you take your miracle and spread your cause around the world…I can’t tell you how overwhelming the whole weekend was.  This is a class of very accomplished execs, VCs, business professionals and they voted me one of the most inspiring, me – dystonic carrie, batteries and all!  

When I set out on this journey, none of this was the plan.  I had deep brain stimulation.  I was given a second chance.  I took that second chance and literally ran miles and miles….I spread the word, I inspired many and I am not done yet.  I was so excited that I made it to reunion.  What many didn’t know was that on Friday and Saturday I was at about a pain level 7, but pain is temporary the memory of this weekend will be forever.  I am inspired all over again to spread the word, to inspire many to know to work within your limitations and believe in miracles. One of my classmates reminded me that 12 years ago, he said what is wrong with your leg? why do you walk like that?  Those memories are hidden and I remember my response in those days – I have a rare disease.  Fast forward 12 years later and my response to why do you have scars on your chest? Is a proud, chest lifted answer – I have Dystonia would, you like to hear more… The other lesson on this journey is patience.  I went from running 5 miles at the beginning of the year to barely being able to ride the bike for 20 minutes today.  But as always, I will build back my strength and continue to be patient for the next 3 weeks.  And despite being frustrated I am always reminded I will be back to running across finish lines in no time!

Class of 2004 thank you for all the conversations this weekend!  The timing was perfect!  I am inspired all over again!



April 22, 2014

On the mend…

So I am finally back to feeling myself these days!  DBS has a funny way of reminding you how precious life is!  This surgery was quite the one to go down in the books.  I had a battery replacement and a battery readjustment which means that I had surgery on both sides and I honestly forgot how hard it was to recover from a dual surgery.  The surgery was tough, puking from the minute we left the hospital and all night.  I had my favorite anesthesiologist Bob, but still ended up getting super sick!  But 11 days later I have to say I made it!  I feel so much better, so much stronger mentally. I am publicly stubborn and went to work yesterday all day, but I felt so mentally strong I was ready to go back.  I paid for it last night and scaled back a little today…but so happy that piece of my life is done.  I am crossing fingers I am surgery free for 2 years…Both batteries are strong!  And even though I am supremely antsy about not being able to work out I am touched by all the love and support I have had from so many friends through this crazy period.  I was embarrassed about asking people to open doors but I have gotten over that.  I need help PERIOD.  We all do at different times of our lives.  I am thankful for all the calls and flowers, I feel so loved.  I have no shame anymore calling myself a cyborg…I am excited to run a 10K with the man that has the most patience in the world and has been on this Dystonia journey with me for the last 9 years! Dr.T I can’t wait to cross that finish line with you!   I am excited to coach the Dystonia Marathon running team.  I am excited that some of my classmates from school are inspired by my strength!  And what excites me most from seeing the worst of a battery decline to a new battery is the smile on my face today!  The terminator is quickly on the mend!  Thanks again for all the love and support!