December 12, 2013

Mumbles from Happy Feet here she comes…

So I now have had 3 more instances of people asking me if I am slurring or they aren’t understanding me…the hardest is when they are work calls…But the reality is I know one of my batteries is slowly dying its just a waiting game until the machine goes to the magical number so the insurance will pay for the surgery.  So unlike the Carrie of the past that ignores the signs, this time I am being different.  I meditate every morning so on those work calls when someone says you are slurring I don’t understand you, I take a breath in for 2 seconds and breathe out for 2 seconds and try and repeat myself slowly instead of get frustrated.  I bought a “hurricane” a steadier cane, this one has lights too :).  I just want to be ready so when I really get weebly wobbly I have a third leg and again not get frustrated.  Lastly, I got a handicapped parking pass just for when my gait really starts to fall rapidly I am not frustrated that I can’t find parking or have to walk too far.  So this time versus so many others, I am taking it slowly, resting, and not pushing myself.  It is a waiting game, it is inevitable.  But this time I am prepared.  I was a little sad tonight about the speech being such an issue for the last couple of days then I remembered I have to be thankful for the gift I am so lucky to have – the gift of being able to be active.  I am still a miracle, but like everything that is battery operated batteries have to be changed!  So I am going to be as calm and patient as I can be and I have to say I am proud that for the first time I accepted and am prepared!

December 4, 2013

To my sister…

Yet another battery change, yet another surgery!  You have taught me more than I ever knew and the older I get the more I learn how brave and strong you are.  You trusted the DBS before they even knew how DBS could affect Dystonia patients.  Many of us thank you for taking that step and the jump and paving the way for us.  You taught me how to accept.  You taught me how to embrace.  I may not say it enough but thank you!  Many of us thank you, I always get excited when people write in to the blog and say your sister is amazing…so on behalf of all of us- thank you!! you truly are an inspiration and a risk taker!  Good luck tomorrow and we all know you are going to kick butt!  I love you so much, thank you for being my constant inspiration!



November 30, 2013


I had a way longer drive than I expected in the car today and my mind started to wander and finally it came back to here…my blog…I was thinking what lessons did I learn this month?  As most people know I always like to reflect about lessons learned and many come to mind but first and foremost – I am amazing.  I am awesome.  That simple.  I learned that lesson a little bit of the hard way but I get it now….

So November has been interesting I felt like I went from hero to zero..I started out the first weekend with a bang running my last and final half marathon and killing it in 2 hours and 40 min and all the while I was running and enjoying every minute I kept on thinking please don’t let what I think is going to happen next happen….by 1pm, I felt that tremor in my right pinky and by 10pm that night full on tremor and completely twisted…And from that day on it kept on getting worse my worse nightmare…Slurring, eye issues and then finally the cane..but after a doctor’s visit I can say I am back to 90%…I am okay with that…I still wake up in the morning with tremors and try to shake them off as much as possible and still have a slight issue with the left but if 90% better is all I get then I am going to be grateful for that.

What did I learn?  If I can digress for a second…I am not a fan when people say “Dystonia sucks” ; it actually makes me sad.  I think of my dystonia as a gift and a little curse every now and then.  I have been able to take a disease which I got at an early age and with the miracle of science been given the gift of running.  I have so enjoyed running for those that can’t…or at least that was the point of this journey.  Little did I realize I would inspire those that can…I have friends from near and far that have said thank you for inspiring me to run my first 5K and someone even ran their first marathon after I ran Chicago.   So Dystonia, has been my gift that I give endlessly and around this world to try something whether disabled or abled…

The curse has been that I have tempted the DBS science once too many times, marathons, tough mudders…but I have learned all too well now that I am human too and that sometimes your disease can beat out the science…so why tempt fate?  Even this morning I was happy with my little run albeit a little slow and a little limpy on the left side but I didn’t give up…I set a 3 mile goal and I made it…Secret – I was so scared, it was my first run since the half marathon and I didn’t know if my legs were going to be able to do it…So I too suffer ups and downs, but it doesn’t “suck”…it’s part of my life’s journey.

I often forget how far I have come and the night before my doctor’s appointment on the plane ride down; I watched this video to remind myself that DBS has been more than just a success it was nothing short of a miracle.  I remember tears streaming down my face thinking did I screw it up? Did I push the stimulators too far…and luckily I know now I still have another chance.  So what did I learn?  I learned that I am amazing, that I took a frown and turned it upside down…Don’t give me wrong, I did throw myself a little siu pity party for a little, but I am realizing now that this is me – Carrie – I have black hair, a great sense of humor and Dystonia…wait you haven’t heard of that? how long do you have 🙂

And to my little sister who teaches me more and more about Dystonia everyday; good luck on Thursday and I know your battery change is going to go well!

November 22, 2013

Believing in miracles, having faith it will all work out…

So I am back up and walking again 🙂  As someone once said it’s going to be okay and it is. After some adjustments, I am somewhat back to normal but as I recall these adjustments take a while!  I am just happy that I am able to walk again, I am happy that I was able to go to the gym with my dad and walk with him on the treadmill.  

I am most happiest that Yoga, Pilates, short runs and Bootcamp are my new best friends.  Someone said to me you know you are going to get the itch again to run long distances and I can truly say I learned so much from this experience.  I learned 2 half marathons in 2 weeks is much for anybody able bodied or not.   What it took me almost 8 years to remember is that I truly have a gift so why I am abusing it?  My DBS is my super power to inspire others, so why would I give that away?

I will still keep on blogging because despite my blog being called “Run Carrie Run”; I will still be running short distances but most of all I learned that people read my blog to be inspired, to not give up, to keep on trying and to know that living with Dystonia is not a death sentence…and quite honestly there are days when I want to give up ….and then I read my blog and remind myself how far I have come and how much left I have to go…So as my new saying goes life is not a sprint it’s a 10K and I am truly, truly lucky that things are slowly getting better and hoping to be 100% soon!  And I will still call myself a runner, just a retired one! 

Thank you everyone for helping me through the last several days!

November 13, 2013

Weebles Wobble but they never fall…


So for the past week and a half, I have definitely been a weeble…but I haven’t fallen nor has my spirit been broken.  I have been practicing what I preach to every one of you…Define your path, define your destiny.  I have had to use a cane the last two days, that’s okay.  I wear my cane with the biggest smile I can, I look everyone in the eye and give them the “I know I am awesome” look.  

I have continued to go to the gym.  Albeit not the intensity of a Shaun T class, but still strength training and pilates classes.  If I can’t do something, it’s okay…this is temporary.  If I am tired, I rest.  I am human.  I have accomplished so much in these almost 8 years, that even when I think about it I get goose bumps.  I have learned all the pressure I put on myself to run quicker, push harder, was all a bunch of BS in the end…When most of the people that have two good feet slept in, I used my bionics to spread the awareness of a disease that is so close to my heart!  I never took my good fortune for granted!

So with this setback as opposed to others, I am smiling, taking my own advice I write to all my readers and keeping a positive spirit and weeble wobbling one foot at a time…

I read this quote the other day and I smiled knowing that I am in the 0.5% that not only attempted a marathon but finished it too in a proud 7 hours…so thanks Mary for your quote!

Mary Wittenberg, president of NYRR, was quoted saying: “A marathoner is a marathoner regardless of time. Virtually everyone who tries the marathon has put in training over months, and it is that exercise and that commitment, physical and mental, that gives meaning to the medal, not just the day’s effort, be it fast or slow. It’s all in conquering the challenge.”

So to life’s daily challenges, bring it, my spirit isn’t quite broken yet and quite frankly I have been using myself and Candy Cane to spread and educate people about Dystonia daily just in a different way these days…So please ask questions, please feel free to email me…and if by chance I happen to fall please stop and help me up!  Because I have a underlying suspicion that Weeble Wobbles do fall sometimes 🙂


November 10, 2013

Winning! Setbacks! Limitations

So this weekend I declared Snow Weekend in Palo Alto…a weekend on the couch watching movies.  The irony is it mentally hurts me more to sit on the couch than it does to run and physically do damage to my body.  Those two half marathons wrecked my body, I can admit that today sitting from my couch.  But from of all this I learned, I am have limitations, honor them don’t fight them.  For two weeks, I felt like a hero. Like I took Dystonia head on and showed it who was winner…But then last week when my body realized it was all over and my body could be my body again Dystonia took over and showed me who was going to take control of last week.  So things are a little shakey, a little unbalanced, I even broke out the cane yesterday (for if anyone that knows me is a hard thing to do).  But I am optimistic this too will pass and I am confident this could happen again but not under my stupidity.  I am smarter now, I recognize my limitations and acknowledge the setbacks.  

Just like with the marathon, a friend asked would you do this again.  And I have to say yes.  I raised thousands of dollars to build awareness, I made myself happy, I made others really proud,  

So I am still working on what my next chapter of my blog will be because I have gotten several emails to not stop.  That my blog helps us others work harder, be better, so I had never thought growing up with Dystonia those words have been used to describe me, but here we are so many years later and that’s how I am being described – an inspiration.  I am humbled by everyone that has said that to me,…and despite my retirement of half marathons, I am sure I can be inspirational in different ways once this terminator gets her tuneup in a week! 

It doesn’t get old looking at this smile…or remembering to take my shoes off because i was in so much pain, but for everyone that I have ever met with Dystonia, you helped put this smile on my face!


November 1, 2013….

48 hours left..

The Finish line really is a finish line this time around!  I have been somewhat melancholy today and reflecting about myself through this blog…I read about many ups and downs and as I start writing about the end.  I have to say I am truly proud of myself..

I was given a miracle and I used that to raise awareness.  I would estimate in the course of my running I have raised over $10,000 with the help of many many friends and generous donors.  I have inspired…I never knew I had that skill..I have inspired handicapped kids, DBS successors and just plain old normal people!  I inspire people when they want to give up at mile 3 that they can do 2 more miles, I inspired a friend that never wanted to do a marathon just qualify for the Boston Marathon and finally, I have inspired myself.  I have seen myself never give up when most people would, I have seen myself say I can never run 7 miles without stopping, and now can run that effortlessly.  

As in life though, all good things come to an end…and I am struggling how to end this journey…how to manage my body in the next 48 hours to calm down, relax and enjoy the end…My nerves and ending something I love is not a good thing for my body…so I am going to try and relax tomorrow…remember the journey and try and know this is all for the best…No need to gamble with the miracle I have been given…until tomorrow whenI write my post for my LAST HALF MARATHON….

October 31, 2013

Endings…Breaking Up…End of an Era

Barely touching my “eighth birthday” I have decided to stop running half marathons…and I have to tell you all, I feel so mixed about the decision.  Yes, I may have a little tremor but that’ll go away, it always does or will it?? …At the request of my friend I started reading my blog from the beginning.  When I started this little blog, I never ever thought it would last this long, be read so much or touched so many lives.  However, as I read it last night several themes emerged – how much I enjoy working for the medal and how many days after I inevitably blog about the little tremors.  Yet, I always forget about the bad days right after and then I sign up for the next race.

So I’ll be honest this decision sucks.  I am grumpy.  I cried at the gym today knowing this will be my last half marathon.  I feel like I am breaking up with myself.  I feel like I always define piece of myself by training and running these half marathons. When I was once told I don’t take care of myself, I never understood what that meant – I mean I get haircuts, I hide my greys, I work out; what do you mean I don’t take care of myself?  I finally understood earlier this year and then again last night and even today as I gear up to race again…half marathons exhaust me…I was literally falling asleep at 6:30pm tonight…My body is tired…it takes everything out of me to do them…it takes weeks to recover….I am guaranteed a huge adjustment in two weeks…So I get it now – taking care of myself means acknowledging the Dystonia and remembering that the DBS is a gift… A gift I need to take care of…

So am I smiling today? NO

…Am I sad, YES!  

But I know that this is the right thing to do….it’s just hard seeing the end so so close…and even though it doesn’t mean I will stop running, piece of me is going away…I will never say I am training for another half marathon again….I will run 10Ks (no one trains for a 10K :))…I’ll start riding my bike, swim, maybe take skiing lessons next winter or start paddleboarding…who knows what’s next?  But I do know the end is in about 72 hours away and for me endings are hard..really really hard…So I promised myself on Sunday I won’t cry but I will smile celebrating the end of an amazing race – 1 marathon, 1 tough mudder, 5 half marathons and many many 10Ks…I have done what many take for granted…done what many able bodied people don’t even attempt to do…and I have to say I have been very very lucky to have done so much…So tomorrow, I promise to turn my frown upside down!


October 30, 2013

Thats what friends are for…

The people that always had faith in me…always knew I wouldn’t finish last!  Many thanks to the people who helped me in every race.  They all knew when I was in pain when I questioned my own strength and always looked at me and said, you are going to finish this, some a lot more nicer than others 🙂  …  and always wiped a tear off my face when I crossed that finish line…Every finish line reminds me back to the day on April 6th, 2006 when I saw my hair slowly drop to the floor and just kept on telling myself someday you will cross a finish line…So most times when I cry at that line it’s tears of joy not pain….tears that remind me I made one of the best decisions, tears that remind me how lucky I am, tears that remind me how strong I was when I was having two holes drilled in my head that I somehow knew the best was yet to come…

My retirement would not happen without a running career… and there are many people who have helped me get where I am today…

Heather, I always call you my angel.  I told no one where I was having surgery and somehow you showed up at Mt. Sinai right when I got out of surgery.  You took me for my very first walk around Central Park and you ran my very first 10K with me!  But it  But it didn’t stop there…You ran the Chicago half with me, the San Diego half and my very first Tri.  I really have to say…you like punishment!  All kidding aside, thank you!  You have inspired me every step of the way and your words of encouragement truly get me across the line all the time!


Liz, thank you for all of our runs on the WestSide Highway and then my first Half Marathon in Nashville…Then in between Tough Mudder and some how you decided you would do the Chicago Marathon with me, despite having issues with your foot.  But you are such a loyal friend you weren’t going to miss out!  You were there for me that morning and you said to me,  you are going to finish this I know it…I did and I thank you, for those words stuck with me all along the way!


Carolyne– You are definitely one to have in any race…You don’t let me give up, you do the opposite you yell at me like you are my drill captain…and I wish I could take you seriously but I know it’s all in love!  But the highlight of running with you was on New Year’s Eve when I was pretty sure I broke my foot at Mile 2, you decided to sing Runaway by Kanye – Accapella!  No one can sing and run like you!



Jeff – Thanks for the most amazing gift ever!  The Siu Bolts!  Those shoes will forever live in my heart!


Jyoti– Thank you for running the midnight run with Coach and I!  You left the baby at home and it was so fun to have my oldest and dearest friend run with me!  You cracked me up all the way when Carolyne had to take a break when she stopped singing and you took up the entertainment!  So happy to have had you run with me!


Matt- Thank you for being patient with me!  You helped me realize that I can RUN without walking.  You made me realize it wasn’t the Dystonia why I couldn’t run 2 miles without stopping, it was just my laziness!  Thank you for also teaching me that I will NEVER coming last, so stop saying it!


There are countless people I can thank…but these people endured my crazy attitude and helped me along the way to the finish line!

Thanks to all of you for my pre-race morning grumpiness, my fights, my rants that I am going to finish last and looking at me at mile 3 and saying – look at you, you got this!  None of you ever mentioned Dystonia on these long runs, instead you all said Terminator, Vicki, Siu Butt – you are an athlete!  So yes, I have this, I have had more than I ever dream of, but we are only as good as those that support us….So thank all of you for being on such an epic journey one which was never one in my mind, one that I never even dreamed could happen.  I hope you enjoyed the ride on the magic carpet as much as I did…because miracles do happen!

October 29, 2013

Countdown continues..Thank you to a special guy in my life!

Today’s blog is dedicated to someone who always has been able to make me smile even at the saddest moments…Dr.T has been a believer in me and has always been supporting me in my choices.  He tried for years to get me to pursue DBS and I refused..Dr.T gave tried to give me medicine and I said with an attitude, “absolutely not, I have a Stanford MBA and will not fall asleep in meetings” and he smiled.  Dr. T never stopped believing in me and the day I walked into his office and can I do brain surgery in two weeks, again he smiled.  Dr. T has always let me come to my own conclusions, never questioned me when I said to him I just don’t feel right…he always responded then something must be wrong.  Dr. T has been so amazing on this journey with me, I owe you so much…there is not enough money in the world to repay you! Dr.T we will run a race together even if it’s just a 10K.  Dr. T thank you so much for believing in me and helping me always get to the right decisions…and always fitting me in, because I like to remind you that I really never want to see you 🙂

I also want to thank every doctor or nurse who have helped me along the way…thanks to Joan, Dr. Malhado Chang, Dr. Alterman, Tyler, my Chicago team, Irene and Bob two of the world’s best anesthesiologists…and everyone along the way. There is not one nurse I can’t thank for taking care of me in post op…There is not one person that doesn’t laugh at my jokes as they wheel me off and there is never anyone when I hop on operating table that gets upset when I ask to go to the bathroom (happens every time) just as I am about to go to sleep.  I know this journey will continue with on going battery changes and potentially broken wires…so I owe everyone that touches me on those surgical days a big thanks!  you always make my day…And those who know me too well.,.surgery days are when I am my calmest…when I know I have to surrender to the people that know best!  This picture and this smile sums it up best…Thank you to all the medical staff that show me love and attention on days when I am most scared!  This run would never happen without each and everyone of you!