July 3, 2011

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…

June 13, 2011

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!

MAY 23, 2011

SHEER DETERMINATION VS. STUBBORN

I get these two concepts confused often 🙂  Sometimes I can’t separate the two. That’s why we have friends and family in our lives – to help us learn the difference, to help us see the way.  I am thankful for everyone that’s stuck by me when I thought I could run through foot pain or ignore warning signs.  I thank everyone in my life for supporting my endeavors and for teaching me the difference between determination and being stubborn.  Thank you!

MAY 16, 2011

Will.Determination.Love

I recently watched the movie “Love and Other Drugs”.  The title kept on coming up in random conversations, then I saw anne Hathaway in a picture with some people from the Bachmann Strauss Dystonia and Parkinson Foundation.  I decided I had to see the movie and it was amazing.  It was so raw, so well told.  There are a generation of us like Anne’s character that look “normal” yet are dealing daily with great days and not so great ones.  I was touched by the way she portrayed the tremors, ever so slightly.  I loved the Parkinson’s convention.  We find relief in knowing that there are others like us.  Others so strong, others that laugh everyday.  I think what is so special about people that live with a disease is that they  remember and embrace moments.  The one day the sun came out, the time your friends made you do the dougie, the friend that crossed the finish line with you, the friend that flew into town to celebrate a special day with you or simply a hug when you just needed it. Those days are cherished forever, those are the moments that take you through doctor’s visits or days when you are just having what I like to call a “bad” day!

Bad days aren’t limited to people with rare diseases.  I read an article in a magazine that said kara goucher (one of my race idols) was down for a year due to injury.  It happens to everyone.  This is my lesson for 2011.  Injuries happen. Life happens.  But like Kara, my spirit, will and determination are all still there.  I ran about 3 miles last Sunday and I have to say, the time off allowed me to enjoy the run, appreciate the sun, and how lucky I am….why do I run? I run because I have a gift and I am using that gift to inspire others to walk 10 steps, walk 1 mile or even run a 10k…..set your goal and enjoy the journey getting there!

May 8, 2011

Mothers. Patience

I would like to thank my mother for always encouraging me to be me.  We never talked about the Dystonia as a crutch but part of who I am – no different from having black hair or dark brown eyes.  Because of the way I was raised, I always lived the mantra – Dystonia doesn’t run me; I run the Dystonia.  It was just the way we lived in our house.  I would say mom – I want to go to bschool and she would say which one? Do you have the right grades?  GMAT score? At that point my dystonia was pretty bad, but who cared?

One of the most important lessons she did teach me was be patience in life.  She taught me other things too- how to love, how to share, how to be honest and patience.  She would always say and I still remember today –

Patience is a virtue; virtue is a grace and Grace is a little girl who doesn’t wash her face.

This has been one of the hardest virtues to practice daily.  Life is full of challenges and setbacks and how you attack those setbacks is often an indicator of the type of person you are.  Life unfolds.  Things happen. You live all your life with Dystonia and then 4 weeks later after DBS you start walking again.  I love the miracle of modern science.  And I love my mom more for letting me make the decision to have DBS and be right there in the waiting room at 5am after surgery to come see me despite visiting hours starting at 8am.  To all the moms reading this, love your children despite whatever challenges they have, be patient and proactive and let life unfold!

APRIL 30, 2011

117 days later.

I ran!!!!!  It was awesome…..1 Mile!  Best mile ever!  some would say Carrie, its just a mile…I would say it was an amazing MILE!  I am starting slowly so as not to injure myself again.  Big things on the horizon and I am still learning lessons at age 35 – listen to your body, sometimes a break is ok.  But I just wanted to tell everyone that Mile 1 was amazing!  Look out – more to come, run carrie run is on the mend back! I had a little time on the bench,  it happened for a reason…I took the time to get stronger, mentally and physically…Get ready team!  Big things to come!

April 27, 2011

Dystonia…What does it mean to me?

I spend so much of my time writing about running and be physically fit, that I don’t think  I have ever thought about what is Dystonia, other than the clinical definition that you can find on Wikipedia. Many don’t know that I suffer from a disease thankfully because of Medtronic and their amazing technology for the Dystonia.  But DBS is not a cure.  It is a temporary solution to a problem.  Dystonia means many things to me depending on the day, the weather, how I feel but I do know I think of my disease as a set of rolling hills.  I own the disease.  I refuse to let the disease define me.  There will be great days and there may be bad days…that’s life.  Dystonia has helped me become stronger and be a fighter….I sometimes think its the reason for my success.  The reason I work so hard.   So despite the bad days, I try and not feel bad but remember the bad days when I am on a 10 mile run and smile for 2 hours on that run.  The ground, the feeling of my feet on the ground, I love it all and I know the Dystonia makes those runs make me feel like the luckiest girl in the world.  Dystonia is not my crutch, Dystonia is my reason for enjoying life.

April 17, 2011

Rest. Finish Lines. Dreams

I am learning one of life’s important lessons – rest is important!   I am learning my lesson slowly by taking it easy – something that is not easy for me, but I am slowly and surely learning.  It is okay. I am going to be phenomenal in my October races!  I am not sure why I was rushing the healing process, but I learned from the mistake.  One day at a time.  One step at a time.  I visualize every night the finish line in my next race – CAN NOT WAIT…but in the meantime I am going to rest and get ready for that day.  Rest is a part of training too…I just don’t plan on resting for the next 365 days of the year!

April 12, 2011

Stubborn.  Changes.  Embarrassment

I am struggling to write this post only because it is hard sometimes to be honest with yourself and others.  This weekend was not great.  Quite frankly it was hard.  I smile all the time and make sure everyone is aware that life is great.  Big anniversary coming up…ignore the signs, it will go away that’s my philosophy.

Unfortunately life unfolds.  This weekend I had a shift with my DBS and Dystonia.  What happenned? Why? We may never know but I have to say this time I couldn’t ignore the tremors, the limp, all of it….there, shaky, me.

As I am writing this, I am embarrassed to admit I am human, to admit I had to have friends take care of me, to admit that sometimes I am stubborn and to admit I have dystonia.  I was so angry this weekend.  It wasn’t in outlook 🙂  My friends were amazing, they all pretended they didn’t see the symptoms.  Things are better now but I am still a little embarrassed.

This week’s blog was supposed to be about how my parents raised me to be a strong person…as my mom always said – I don’t know where you got the strength and courage to go to school in North Carolina, go to Wall Street and kick butt and go to Stanford … sometimes my strength is also my downfall…thinking i can will away a disease or beat it…I can’t will this one away but I should learn to work with my limitations.

This may be one of the hardest blogs I have written to admit I am human, to admit I can’t plan it all.  To admit I had to rely on others to take care of me.  Matt, Liz, Stan – you are all winning – the jokes, the conversations, pretending not to see me shaking and the support…thank you for making me feel “normal”.

April 4, 2011 – Happy 5 year!

I remember.  Thank you. I will never forget. 5 years young.

Five years ago today, I woke up and took my last shower for a while..brushed my hair for a really long time and put on my favorite pair of pink juicy couture sweats.  I never freaked out, I never cried…quite frankly, I was too tired to even think about it.  I have never been a morning person and just wanted to get to the hospital already.

I remember thinking to myself, this isn’t like Grey’s Anatomy.  I got wheeled up to the eighth floor and was parked in a nondescript hallway.  My mom and I said goodbye and the barber’s clippers came out.  The hair started to fall out.  I was bald.  My journey began.  My heart rate didn’t rise.  My anxiety didn’t rise.  I knew I was doing the right thing.  I remained calm.

I remember the doctor saying she is so calm, she needs no additional drugs just the Novacaine.

I remember the halo.  I remember the screws tightening in my head.

I remember that awful MRI.  I remember the last 10 minutes and turning red from an allergic reaction.  I remember freaking out, I remember Dr. Irene cracking jokes and calming me down.

I remember seeing my mom and Ilana, I remember seeing the looks in their eyes and I told them “relax, everything is going to be okay”.

I remember the drill.

I remember the noise.

I remember the smell when the drill was going through my skull.

I remember thinking this is weird, my brain has no pain.

I remember being funny and making jokes in the operating room.

I remember hearing the noise in my brain when the wires got dropped in.  I remember thinking when Dr. Alterman hit the “spot” – wow, my brain is having a party.

I remember when everyone in the Operating Room after five minutes of me not speaking, asking me, alarmingly, if I was okay and I remember saying, I have been speaking for 4 hours my jaw just hurts.

I remember when someone asked me if I wanted my lips swabbed with water and I responded that I would rather have a Grey Goose and club soda.

I remember when they turned me on and my right arm tremored, I freaked out and thought why did I just make things worse.  I remember Dr. Alterman saying it’s okay we are going to move the wire.

I remember feeling relief for 5 minutes when they turned me on again and thinking I did the right thing.

I remember them putting a little cap over the two holes in my head.  I remember Dr. Irene taking a pic and me smiling.

I remember the ICU.

I remember seeing my mom.

I remember seeing Gab, Liz, Jyoti, Ilana.

I remember waking up and seeing an angel – my friend Heather who somehow found out what hospital I was in since I told no one but my 4 best friends.

I remember having the worse headache I will ever have.

I remember crying all night for my mummy and the nurse sneaking her into the ICU at 6am.

I remember being in pain and thinking….

I will never forget….I remember everyday how lucky I am.  I remember with every step.

I want to thank every person who has ever supported me, family, friends old and new..Friends from all over the world.  Friends who celebrate April 4th, every year, because I will never forget.

To mom, dad and Suzie – thank you for always supporting me, no matter how crazy my ideas are.

To Dr. T, Joan, Dr. Alterman, Dr. Irene and all the other doctors who were there April 4, 2006 – Thank you!  I always told you I would wear the cutest pair of heels…

To my girls – Liz, Ilana, Gab, Jyoti – thank you!  You grew with me as the disease grew and even on April 3, 2006 refused to tell me that you saw a limp…you really are my foundation.  You all made me heal quickly through laughs, ben and jerry’s and macaroni and cheese!

Harsh, Lauren, Rigney – somehow you guys over the years have been a great source of support and comfort to me! Harsh – thank you for making runcarrierun.org become a source of inspiration for others!

GSB crew – you rock….spreadsheets and all!  And you finally found out, no I didn’t hurt my ankle, I have Dystonia.

To any person who has every raced with me – Heather, Liz, Carolyne, Jeff and everyone who has come out to watch – thank you!  I will forever cross any finish line as I have in the past to Journey’s – “don’t stop believing, because I never have!”

I want to the thank Heidi for going to pre-op with me round 2 when  I couldn’t even write my tremors were so bad…and being a patient friend and pretending that was  “normal”.

Today my Equinox crew supports me everyday as I train for my marathon – Jason, Coach, Drew, Julia, Dawn, Lois, Tonya, Julie, Allison, Jim, Jenn, and Kristen.  You all take care of me and always encourage me when I know you can see struggle on my face.  AJ and Mortie thank you for all your patience with me and to all the other trainers – thank you for helping me on the days when walking may be too much (even though you probably don’t know it)…thank you!  Drew, I especially thank you for teaching me that it is okay to have limitations and to work with what I have!

And to the Terminator, Bionic Oreo, Small Wonder, SiuBolt – I am proud of my wires, proud of my scars they are a part of me, they make me the person who I am.  9 years ago when I applied to Stanford and said I wanted to run a marathon…I celebrate that dream on this day. I remember that girl that could barely walk a block and will never forget her.   On April 4, 2006 a miracle happened and for that I celebrate!  (If you see me in tears today….those are tears of extreme joy!)