medtronic

And the countdown begins…

So tomorrow begins my 6th surgery journey since I decided to embark on this journey 8 years ago.  Pre Op makes the surgery start becoming very real, it’s no longer a hypothetical but a realization that the train has left the station.

On April 4th, 2006, I had two holes drilled in my head not knowing what the outcome would be.  And here we are 8 years later, so many miles logged, so many races ran, so many people inspired and yet I am somewhat scared for the next 11 days…I have eleven more days of being super careful, 11 more days of being a little shakey, 11 more days until I get “recharged”.  DBS has changed my life, given my life, however when the batteries start dying, it is not fun at all.  People ask my what does it feel like?  I am highly emotional (and not in a good way), my body gets confused not knowing from one moment to the next what’s going to happen.  I start to have bad dreams….like the surgery won’t work and I just got lucky for the last 8 years.  My mind starts racing in a thousand directions and I have to stop and breathe, realize that not only am I getting a new battery but I am also getting an upgrade.  I am going from the original iPhone to an iPhone5S!  But let’s be real, surgery is surgery.  It is not fun.  All those plans I made for the next 6 weeks – gone, cancelled.  Dystonia and batteries failing don’t happen on a schedule it happens when it happens.  And I am realizing this is what Dystonia has taught me – appreciate the good and don’t dwell on the bad.  It always gets better, I just need to be patient.  

I always remember this week, 8 years ago, waking up every morning and wondering am I making the right decision, what if things didn’t work out and then remembering I would not be any worse off…So as ironic as it is that 8 years later I am planning yet another surgery which may be frustrating and hard to go through, I have to remember that DBS, Medtronic and friends and family have helped me get through 5 surgeries and I will get through this one as well.  So to the start of the less than 2 week countdown…here we go!

Happy Anniversary, Happy Birthday

7 years ago…

I look forward to this day more than any other day of the year.  This is the day where I cherish my heart, my courage, my tenacity and my strength.  This is the day when I feel nothing can hurt me, nothing can break me down…this is the day 7 years ago I had 2 holes drilled in my head and still laughed, still made jokes and treated April 4, 2006 as though it was my last.

I’ll be honest, I remember going into that surgery thinking, how will I look in a wheelchair…this surgery won’t work, how will it? No one can tell me why it does…but I may as well have fun with it that day.  I woke up, I smiled, I saw 7 inches of hair fall to the ground, smelled the bone of my skull being torn apart with a drill, but I saw relief…relief knowing that I had done all I could do and DBS was my last shot…It will like being in OT with 3 seconds left and I had to make the 3 pointer….would I?  Who knows but take the shot!!!!

In the past, I usually thank everyone who helped me through the bad days, through the snow storms, through the denial of the disease but today I want to celebrate me.  I want to acknowledge it takes strength to make a decision like mine.  This anniversary may mean more to me because of the last several years….7 years and 5 surgeries later…I have had many highs and many lows.  Dystonia and DBS have played their hide and seek games with me…3 battery replacements and one wire replacement have been completely heartbreaking but have also made me stronger and ready for the next setback.  This last fall, when I had to be turned off may have been the worse but here I am….7 years later, 1 marathon, 2 half marathons and countless 10Ks later, mud races, TRX classes, hikes — I feel like I am the luckiest girl in the world!

It has taken me seven years for when people say you inspire me to reply with a simple thank you.  

It has taken me 7 years to refer to myself as an athlete.

It has taken me 7 years to learn a day off is not a sign of weakness.  

It has taken me 7 years to learn not everyone is made to run a marathon.

It has taken me 7 years to realize being last still means, I laced up and ran the race.

It has taken me 7 years when in a workout class to say I have to modify, I have Dystonia.

It has taken me 7 years to realize its okay to ask for help, it means I am strong.

It has taken me 7 years to ask for a hand on a hike and not be embarrassed.

It has taken me 7 years to realize I am beautiful inside and out what people see..not the  monster Dystonia, I think they see.

It has taken me 7 years to touch my scars every morning and appreciate the miracle they have brought to me…

It has taken my 7 years to not stop believing…I haven’t stop thinking I can’t inspire friends and strangers to run for the Dystonia cause.

It will take me 7 more to continue the fight and I will not stop spreading the word to help find a cure…

Please do your part and donate to my next half marathon to help find a cure for Dystonia…

http://dystonia.donorshops.com/product/grapehalfmarathon/runcarrierun.php

and 7 years later I still cry at this screen when I write this anniversary blog, because there is nothing about April 4, 2006 I will ever, ever forget.

Happy Birthday to me!

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