March 30, 2014

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!


May 15, 2013

In today’s boot camp class I had problems balancing…granted I am getting stronger but still felt like a weeble wobble who kept on leaning over…and my first thought was – do these people realize that i am handicapped and that’s why I can’t balance? should I wear a sign? and as my mind started to go there…a guy next to me lost his balance and I smiled…able bodied people lose their balance too..I sometimes hold myself to such a high standard due to my handicap, my disability which is hidden because I am a DBS Medtronic success but still neurologically dystonic..So many layers..but I just realized today I am just me – I weeble and I wobble but I never (cross fingers) ever fall.  So I decided in class today to embrace my miracle (x2) to remind myself 6 months ago I was on a cane and to laugh at myself when I fall, because at the end of the day – I workout 6x a week, people call me an athlete and just do the best I can because you know what I get out there every day and kick ass!  So as everyone was leaving class today, a couple of people came up to me and said I am sure you are doing Bay to Breakers, right? and I said yup, I am!  So weebles do wobble, but they can be sporty too 🙂

April 4, 2013

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…

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!

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.

MARCH 16, 2011

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….

September 21, 2010

I rarely say that I am that person that just walks home smiling but today was that day! I am so lucky to be healthy and have the opportunity and the determination to put my mind to enter this tough mudder event.  I am so excited to see my training at Equinox pay off.   As I approach my fifth year anniversary of my DBS in six months I am truly thankful for the miracles of science, Medtronic and my amazing doctors – Dr. Tagliati and Dr. Alterman.  And I am truly, truly thankful for Carolyne and Liz for believing in me and being amazing friends!  Lastly, today while doing those final 20 pushups, I realized I was my own greatest enemy and that I could complete those last 20 — 100 pushups done and done!  (well maybe 95)!