Dystonia – Page 4 – Run Carrie Run!

October 3, 2013

Posted on October 3, 2013 by Carrie Siubutt

Why I run…

Today’s blog was going to be the big splash – exactly 1 month from today I will be retiring, blah, blah, blah..but instead things have happened in the last 24 hours that have changed the theme of this piece tonight. Life has a way of throwing you curve balls and seeing how you react…the funny part though is that in today’s world those twists and turns get delivered in a text message. So instead of letting everyone know that I can conquer the DBS world, run for all of those that can’t, I just want to let everyone know Dystonia is a test of one’s strength everyday. It throws you curve balls in physical twists and turns, in ways that you just can’t anticipate. I have struggled with this disease all my life and someone recently pointed out to me that I refer to myself and the disease, not just “carrie” and that struck me. Dystonia is me, part of me, nothing different than having blue eyes or brown hair. So I no longer refer to the disease I just talk about myself now (albeit 7 days)! And after my last half, I’ll be running my 10K in Napa and 10K in Marin for me, to be healthy to be sporty and to have fun – not for THE disease not to prove that I am stronger than The disease, but because I can and they are fun!

I wanted to share a comment, I received tonight the comment couldn’t have been more timely, tears of joy and happiness streamed down my face all at the same time but wanted to share. I am sharing because there are so many ways I can spread the word about Dystonia and my sister does it in her own special way as well! So to the sisters that sometime believe that hope is a strategy for a cure to Dystonia! Scottie, thank you, your timing was impeccable!

Hi Carrie. It’s so nice reading your story and that you have run so much to spread awareness for such a horrible disease. I too have had DBS for my dystonia. And that little sister of your’s, well let’s just say I know a little about her. She has been my person pushing me to fight and tell the drs when something isn’t right. Suzie is such an awesome person and I know firsthand how proud you make her when you run. I always had a vision that when I got out of my wheelchair, that I would do what I always thought I hated and that’s run!!! I found out you were doing this run in SF because I was searching for a run myself because I have found the joy in running. Maybe it was being in a wheelchair. Maybe it’s because I felt I took it for granted that at one point I could get up and run “if I wanted to”. (And that was rare). But I do know what inspires me now…..YOU!!! You see I don’t worry about if this joy will last. I’m here, like you, standing as one of the fortunate ones that have been given this second chance at doing something positive for others. I had this goal in mind that I would run to spread awareness as long as I could and well, you beat me to that. I now see myself as the one who will carry on in your place, spreading the same awareness and hopefully do what you have been able to do, change lives. So good luck in retirement and enjoy your down time with Suzie. Relax and let others continue what you have started. You are a HERO to many of us!!!

September 30, 2013

Posted on September 29, 2013 by Carrie Siubutt

Here we go two half marathons in the next 5 weeks…

Actually 3, since next Sunday will be a twelve miler….I am ready for the celebration of ending my running half marathons, but I am never going to stop running…I already signed up for the North Face Endurance 10K…an amazing way to make a 10K challenging and fun…On to the new thing already…small 6 mile trail runs, shorter distances yet still challenging!

I am excited to run my next 12 miles next week. I haven’t felt stronger and more confident…life is funny…a year ago, I could barely run 4miles because my battery was mildly starting to bother me and as I train for the same run I tried to do last year, this year is different. I remember how devastated I was so many things were falling apart at the same time and here we are a year later and slowly things are getting better, stronger…sometimes you have to remember what challenges you go through so you learn how to fight for what you really want…I am so happy I fought for myself to be heard by a doctor, any doctor and am so happy that DR. T listened…a year ago I remember thinking, what if…and I here we are almost 3 half marathons completed in one year….but what makes me happiest about this retirement is finally having my sister come see me run. See her big sister cross the finish line and every time I think about it I start to tear up. So many may not understand why I cry at every finish line though I have crossed many up to this day.. but to run the SF half and retire in my home city with friends and my sister is a gift no amount of money could buy…

Please don’t forget to donate!

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

September 5, 2013

Posted on September 5, 2013 by Carrie Siubutt

My retirement, it isn’t often that I reflect about my Dystonia but tonight is one of those rare nights. I have had many business people in the last several days come up to me and say I am honored to work with someone like you, I understand why you work so hard, I understand why you are such a good friend…none of these sentences made sense to me why my blog help them understand me until I started thinking about it. I run for those that can’t…simply said, my body, my Dystonia has transformed my physical self and instead been a vehicle to raise awareness for those that will never be as lucky as me. In this whole journey of almost 8 years, I never thought twice about running for the little 12 year old that wakes up and realizes they are in a “twisted” life and that I am wearing my body out to raise awareness for them. It never once crossed my mind, for a while I thought it was for my own ego but I realized it was never about the medals. It was always about trying to give my own little 12 year old body a voice, a voice to be heard that Dystonia never slowed me down. It was always about my inspiring my sister to walk a mile, which she did…it was always about using the good fortune I was given to spread the word that you can still be beautiful and amazing despite having a rare disease. So as much as I am “retiring” I will never stop running for the disease, it just may be in different ways. Helping little kids be inspired is my dream, living a selfless life to inspire others is my dream…I once thought it was running a marathon, but that was a metaphor for my life’s goal with Dystonia…my goal is to show every person with Dystonia or any other disease…that a disease is not a life sentence of gloom, it is a lesson, an opportunity to use these “superpowers” to make a difference in other people’s lives. So as much I am training for my last 2 long races, this isn’t the end of runcarrierun, it is simply a change of pace, a change of race, I will never stop being an advocate for a looking for a cure to this disease. And for everyone that says the are inspired by me, I am inspired by everyone that reads this blog, that tries a race because of me and most importantly inspired in everyone that believes in me!

August 21, 2013

Posted on August 21, 2013 by Carrie Siubutt

…and the training begins! I am so happy that the doc was able to identify my issues and finally hope to see some relief! I am excited to start running again! I am excited to be running my first SF half marathon in a little over 8 weeks! I am so happy to be thankful for the little things. Life is like a marathon, there are bumps, hills, ups and downs, times when I want to give up and don’t. I have reminded myself so many times not to give up, to keep on believing in myself to get to the finish line. So it begins…2 half marathons in SF and I can’t wait to run in one of the most beautiful cities I have ever lived in! So San Fran watch out, I am back, lacing up this weekend and starting to train!

For those of you looking for an entry into the NYC marathon, please comment on my blog. We have some entries for the DMRF and would love some more runners to take part!

July 29, 2013

Posted on July 29, 2013 by Carrie Siubutt

Living life with a disability, “taking care of myself”, retirement

Life is always interesting, life with a disability is sometimes just a party! You never know when you are going to get your next surprise….I have been training so hard for my next half marathons – gaining speed, losing weight, feeling great…but my Dystonia gave me a surprise…I saw the signs, but as always I ignored them…I thought I must just be tired..take a day off…then the signs couldn’t be ignored and I realized all this training and running may be too much for my body. That I would only run 5 more half marathons, and then I am done, I will retire…

Then I had an epiphany this weekend, who am I kidding…I will be retiring this year. This was a painful decision for me and I am not even a professional athlete. I have always wanted to do the Nike womans half and the SF half over the bridge and then that’s it…I am done! Tears are streaming down my face as I write this…but I can’t keep on putting my family, friends and work through these cycles of not feeling well. I’ll cap my races at 10Ks and be happy with just being fit and healthy.

I have ran more halfs than most of my friends and I should be proud of that. I remember when I set out on this journey I said to Dr.T if this surgery works I would be so happy running a 10K…so here I am at the circle of life…started with a 10K worked my way to half and even a full marathon, completed the tough mudder and got the most respect reward, so I have had an awesome almost 8 years of training for various half marathons and other races but 2013 is my time to call it quits. November 3rd will be my last, I will be crying for so many reasons when I cross that finish line, but I know this is the right thing to do.

I am finally understanding what taking care of myself means – being proud of my accomplishments and celebrating small wins! I can’t wait to cheer others on who decide to run for the DMRF in my name or for others…I can’t wait to get back to running 10Ks…and even though I am nearing the end, I can truly say I had an awesome time inspiring others, training with the ones I love and having the ability to say i have ran a marathon…

For my readers, please follow the rest of my journey for my last 2 half marathons here and this isn’t the end, there will be other adventures ahead..I just have to listen to my body now and take care of myself!

xoxo…

Run Carrie Run!

May 20, 2013

Posted on May 20, 2013 by Carrie Siubutt

Bay to Breakers – check

First mistake – taking it seriously 🙂 Next year it will be fun with a funny costume:)

So this was my third race in less than 4 weeks and I have to say my body is giving me a signal to take it easy…My foot slightly still hurts and sadly I couldn’t get an appointment to have it checked out before my half marathon…but there I said it, I am running a half marathon 🙂 Couldn’t be more excited, more elated…The last race I ran with the word marathon in it was the Chicago Marathon 2011. A year later, I remember I had signed up for a half marathon and not only could barely run but was terribly, terribly sick…I knew around that time last fall something was wrong and I didn’t know what…but from that period I learned to never give up..follow your heart, follow your instinct.

So mornings of races I am terribly, terribly quiet and this was raised to my attention yesterday morning. I am terribly quiet for several reasons, I can never articulate what’s going on in my mind but here goes:

1. I am so grateful I can run again

2. I remember on December 30, 2012 when I could barely make it across a las vegas casino without falling over myself

3. I am crying inside, because I feel so lucky that I have a chance at a second life of being an athlete.

So where as before it was telling myself it will be okay if I come in last, now it is all about me being somber and quiet that I have seen my handicap come and go in less than 6 months and can barely believe it. I have a sort of routine that I do nowadays, I watch the video that I posted on Jan 1st and play that video in my head before my race, to remember how bad it was and how great it can be. So runners, don’t take my silence as one of being grumpy, but simply one of expressing extreme gratitude to myself that I kept on fighting and standing back up when times were tough.

Slightly sad I have to take a little break these last two weeks, but will try to cross train to keep my strength and save it all for my race….

It’s not too late to donate and help others get a second chance at living!

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

May 15, 2013

Posted on May 15, 2013May 15, 2013 by Carrie Siubutt

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 24, 2013

Posted on April 24, 2013 by Carrie Siubutt

The little engine that decided she could…

Sometimes I often think about why I run…am I running away from something or am I running towards something unknown. This last weekend I felt like I couldn’t run my first 10K of the year, felt like I just didn’t have it in me…but I also knew that friends were excited for me to run that friends believed in me and I should believe in myself.

So I laced up and started a slow run, at my normal 13:45 pace, nothing too exciting but it was just the speed I was used to…then I hit the GG bridge and my pace got better and my stride was strong…I kept on hearing voices in my head saying “Carrie, don’t be a quitter”,” you have this”..how many times have I heard that…but last Sunday I decided I did “have it”. So I decided at mile 4, why not go for it?My legs were stronger, the weather was perfection and I have the gas in the engine, I should just go for it…well I did…and my average pace was 12:14…so I learned to believe those annoying voices in my head, I will start believing in myself some more and will enjoy everyone run of the season! At class tonight my bootcamp coach decide to tell everyone about my story and instead of being embarrassed about my slow time, I decided to smile, say thank you and remember that I have the courage to lace up and run races. So while most abled bodied people are waking up most Sundays, I already banged out 7/8 slow miles 🙂

April 4, 2013

Posted on April 3, 2013 by Carrie Siubutt

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!

March 25, 2013

Posted on March 25, 2013 by Carrie Siubutt

Candy Cane…

Today I was in the process of a move and in the last group of items there she was, in all her glistening and glory – my cane. My first instinct was to throw it in the garbage, then I got angry and then I started to have hand tremors remembering all what that cane had meant to ME. Then I began taking deep breaths and realized that the cane means relief to others – mobility, a sense of normalcy. So why was something that was meant to help me become a source of anger for me? I realized that was because I am still dealing with what it means to have Dystonia…it means that my mobility relies on wires and batteries, that I am going to have occasional hand tremors and most of all, I really can’t run if DBS didn’t exist. So I realized after 5 minutes that Candy Cane was my friend, not my enemy. Candy helped me walk the streets of Manhattan when my own legs couldn’t and she helped me stand tall on the days I couldn’t. So Candy made the move, she is a reminder to me of what can be and how nice it is to have a friend to lean on :).