November 11, 2012

Posted on by Carrie Siubutt

Help. Need.  Appreciating every day to its fullest.

Sometimes in life, you need to look at yourself in the mirror and accept what you can and can’t change.  When living with dystonia, there is the unknown fact that you live everyday to the fullest.  The day you can walk or run, is a day that is truly a miracle.  A friend of mine once told me, when you blog it all seems so happy, so rose colored; please let everyone know of the lows, the bad days.

So here goes.  Sometimes you have bad days, sometimes you have to ask for help and sometimes you don’t know how to.  But “normal” people think its so easy just say “hey, I need a helping hand”.  What most “normals” don’t realize is that help means: OMG is it getting worse, OMG am I just having a bad day, OMG please let it be okay.  Dystonia is never really defined in a medical journal in how it unfolds when you are 15, 20, 25, 37.  What Dystonia has taught me: is to find a reason to smile, is to find a reason to appreciate every step I take and to realize life is too short to get caught up in the minutia of the BS but to remember what is important – a smile, a touch, a jump, a random act of kindness.  What DBS has taught me is the experience of loving, loving myself, loving others and learning how to trust.  What DBS gave me is a miracle to aspire to be inspirational.  DBS is a gift to me and even if I am having issues with the DBS what I have learned is that miracles happen and I am truly grateful of being a living miracle.  I am truly grateful of my family, my friends and the people that remind me everyday that I can walk.  

Be thankful for everyday, thank the ones that love you the most everyday and cherish every step you can take.

 

 

August 7, 2012

Posted on by Carrie Siubutt

Image

 

I am back.  I think.  Goals, Finish Lines, Training. Last week on vacation as I was running around the deck of a cruise ship (12 times); I felt like I was missing something in my life.  And then it dawned on me.  I miss racing.  I miss training.  I miss validating to myself that I am strong.  That I can still cross finishing lines.  Piece of me has been missing and on lap 8 it occurred to me I need to race again.  I have been in and out of doctor’s appointments the last several weeks thinking my battery was dying, thinking my dystonia is getting worse instead of thinking I have a race coming up…I NEED TO BE STRONG!  Everyone thinks I do these races to prove to everyone I can do it, but the reality is these races aret to prove to myself that I can do it.  I will never run a 9 minute mile and I will never be able to run a race at my boyfriend’s pace but I am proud that I CAN lace up and run with him.  Every time my feet hit the ground I remember that I am thankful for the chance that I can do it.  So last week I decided I will do a half marathon this year, I will stop my pity party and I will still keep on fighting the Dystonia and remind myself every day how lucky I am!

April 12, 2011

Posted on by Carrie Siubutt

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!

Posted on by Carrie Siubutt

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!)

 

MARCH 22, 2011

Posted on by Carrie Siubutt

Sisters, Dystonia, Love, Adoration, Learning to Accept

Today is my sister’s birthday.  As I chronicle and remember 5 years ago when I made the decision to have brain surgery, Suzie was a major factor.  We were the closest of the sisters…then Dystonia came in and attacked my body and then 3 years later literally destroyed my sister’s essence of who she was.  I tell my mom all the time you couldn’t have two more different children…I failed ballet class, Suzie held the fastest mile at age 10…Dystonia barely affected my laziness; Dystonia destroyed my sister’s hope of running a marathon.  Dystonia barely attacked my body; Dystonia ravaged Suzie’s.

Fast forward and Suzie opted for DBS 8 years ago..at that point still unclear how crazy the surgery was or the risks…it was a last resort for my little suz; she needed some form of relief..botox, medicines, none of them worked and more and more her life was one of a wheelchair…she opted to go for it and take the risk, why not?  She was already living a life in a wheelchair, could it get any worse.  She paved the way for many others…she became a walking billboard for why everyone should do DBS..she changes her battery every year, she has had at least 3-5 brain surgeries but would tell you DBS saved her life….

Here we are 8 years later, she just changed her battery last week and is celebrating her birthday….I asked her last week to nominate for the Medtronic Global Heroes program and this was her reason why I should be a Global Hero…To Suzie, you are my hero and a hero to many others, I love you!

“Carrie has always been someone that I looked up to not just because she is my big sister, but for her courage and strength in facing adversity and putting a positive spin on life. I watched Carrie show symptoms of dystonia and wonder why this was happening to her. Never did I think that 3 years later I would follow in her footsteps.

I underwent DBS before she did because my symptoms were a lot worse than hers. After 3 years of trying to convince her that deep brain stimulation would change her life, she finally took that leap of faith with the support of her doctors, friends, and family. Within months of getting “turned on” she had set a goal that she wanted to run a marathon as she had always dreamed of doing, but never thought it would happen. Her first half-marathon she ran for herself and her second half-marathon she ran for me. That was her version of a full marathon for 2009.

Carrie has inspired me to train to run/walk in my first 5k in December 2011. She has inspired and touched many around the world. She is not only my hero, but a hero to many that she has never seen or met. Her blog has shown many that Dystonia doesn’t define a person, but it makes you the person that you are and strive to be. She has also shown that you can do anything you put your mind and heart to.”

MARCH 16, 2011

Posted on by Carrie Siubutt

Research.  Donations.  Medtronic. 5 years old

I have to write this post today because I had a little surprise.  Medtronic featured me as one of their “victory” stories.  I am so honored and pleased.  I never receive emails as such and to be considered a victory is quite a little honor for me.  I have come such a long way.  When I 11 years old and the doctor told me we don’t know what you have…and then looked at my parents and said maybe it is in her head, I thought I would never have the opportunities I do today.  I had the resolve to keep my head down and just succeed at something – school.  I learned how to build a wall around my heart – don’t get your feelings hurt be people looking or staring  I always told myself.  You are smart prove it in school, college, get into Stanford and then kick butt in your career; who cares what they think…they are not as smart as me….

Fast forward 25 years later, 25, and the situation has changed.  I have Dystonia.  I had Deep Brain Stimulation – DBS.  I had my batteries changed once and I know I have many more to come. Without people that have donated money along the way, doctors who have dedicated their lives to movement disorder research and foundations that work effortlessly to help find cures, my world would be so different today.  Researchers that sit in labs all day working on different permeations to help find cures and alleviate symptoms until that cure is found, thank you.  Medtronic – Thank you.

I am learning how to tear those walls down in my heart.  No one is staring anymore because of a limp.  And to those lucky patients, hang in there.  I know the feeling.  After 5 years of this transition, everyday is still new to me.  I still get incredibly frustrated in the gym when  I can’t touch my toes and still fall because I have awful balance.  Or emotionally still can’t see the person that everyone else does because I forget what it is like to not be stared at on the street.  Acknowledge the bad days, grieve them and then look in the mirror, look at your scars, remind yourself you are a survivor, smile and always remember tomorrow is a new day!

Here is the link on the Medtronic website….

http://www.medtronicdbs.com/dystonia/patients/gallery/carrie/index.htm

February 28, 2011

Posted on by Carrie Siubutt

new month.  regroup. less stubborn. friends

This broken foot has been harder than I thought it would be.  It is healing and I need to stop being stubborn.  I swam this weekend, I rode, all at an easy pace yet enough to sweat.  I started to tear up on my ride that I wont get 26.2 this year, then I remembered October 9th…the woman from behind that reminded me that I am bigger than this hill.

Life is a series of rolling hills – there are amazing moments and there are moments when you have to pick yourself and rebuild.  I am on a climb right now.  I just need to remember to rebuild myself stronger.

Just recently I was telling a friend, I am planning to run a marathon later this year.  His response was Carrie – remember what happened last time you pushed yourself…That one statement was quite profound – because in my head i heard myself say yup I broke my foot and pushed my body too hard and ended up with minor tremors.  So the motivation I spent all weekend thinking about was why?  Is it because I was trapped in a body for 30 years? is it because i have something to prove? is it because I just want to run for all those that can’t?  Is it because 5 years ago today I decided to have brain surgery?  I don’t really know, what I do know is that I need to do 26.2 miles, not for a time but to remember how lucky I am to be able to afford the opportunity to run.

I know everyone asks these questions because they care.  The ones closest to me have seen my through my tremors, helped me fill out paperwork when I can’t even hold a pen…and these questions are because they don’t want me to damage myself…I get it.  On the eve of turning 5 this year, I am learning to listen to my friends and my body, DBS isn’t magic and the disease can still be deteriorating.  I have stop fighting to prove to people I can run…I have dystonia, I decided 5 years ago to have brain surgery and my life has changed ever since..

 

February 9, 2011

Posted on by Carrie Siubutt

When I first started doing races, I didn’t understand why people did them. I thought it was boring. But give it a try. If you’re new to the sport, or maybe even an infrequent runner, try it. Once you do it and finish a race, there’s such a feeling of self-accomplishment—that’s really been one thing I’ve taken away from doing running events. Because it’s just you, and you have just yourself to credit for doing what you did. It’s always a great feeling afterward, because you know you did it all yourself.

Mike Bettes, Meteorologist, The Weather Channel

I saw this quote the other day and it resonated with me…The last week has been an emotional roller coaster as some of my closest friends are concerned about me running 26.2 miles..The marathon is more than just my own ego or me wanting to prove to everyone that I can do it.  I understand the risks that come with training.  But I made a promise to myself this is not about time or proving anything.  This is about me finishing 26.2 miles and completing a dream for me and the 300,000 people affected with Dystonia.  Dystonia is not a reason to not work out or not try to achieve goals, it is just the way you go about defining and setting those goals.

The Doctor’s today did a segment about dystonia and dbs…I warn you the video is not for the faint of heart…but it is a great resource for those that would like to learn more about Deep Brain Stimulation.  As Alex says in the segment it is not a cure, but it is a way for people who suffer from Dystonia get a reprieve to allow them to function as best as possible in society!

http://www.thedoctorstv.com/videolib/init/3562

I hope that I can use my running and my passion for life to help raise awareness for this disease and help raise money to fund continuing research and to help find a way to cure Dystonia!

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 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!!