Tag Archives: Dystonia

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!

March 22, 2014

photo (15)Heroes…

Happy Bday to my wonderful sister, who has like me a rare genetic disease, though younger she has accepted our friend so much more than me.  So to the bravest girl in the world, Happy Bday!

Date for my surgery has been set and although I am relieved the next 20 days are going to be tough.  I am going to have to brush off the cane, I am going to have to retire the running shoes and I am going to be sleeping alot more.  I am relieved to know that all of this will be fixed very soon but it doesn’t make the interim any easier.  Walking is becoming more tedious, it makes me scared being reminded of a life I used to have.  It haunts me in my dreams that the next battery won’t work…but I do see the finish line, and I have to admit this feels like the last 2 miles of a marathon when I want to give up and I know I just have to put one foot in front of the other.  I have been on this journey for almost 8 years and even though I have been through many highs and lows, I have to say I would do it again in a heartbeat.  So I am not giving up, I may be a little twisted more than before but with the miracles of science I should be back to normal soon.

Thanks to my little sister for inspiring me to have the DBS surgery and being my constant advocate on days when I can’t, I love you more than you will ever know.

February 9, 2014

Conquering Fears. Believing in MYSELF…asking for help

This weekend I took a ski class with the Disability school in Tahoe and have to say I was SCARED, Nervous and of course started having major self doubt.  I want to SKI, I am dying to learn – so there is only one way to do that, take classes, fall and get up again.  I had heard about the disability ski school during a job interview years ago when this man was telling me about his wife who has Parkinson’s and loves to ski.  He recommended this school because they are trained on the mechanics of the body – how to take your imperfections and work within those limitations.  

So of course, I choose the worse weekend in years to learn.  I said to myself, I don’t care if I am the only one out there I have to start today.  And I did!!!  I had the best instructor, so kind, so patient even though he was so soaked and I kept on telling him one more run!  Every time I kept on thinking this is hard, he would say  – I am so proud of you, look you are skiing!  He was also smart enough to teach me without the poles, allowing me to understand the mechanics of my own body – how to work within my limitations.  So I made a promise to myself, this is THE YEAR!  Thanks Geoff – my most kind and amazing ski instructor who has promised me within 5 days he can get me up the slopes.  So to 2014…slopes watch out, because I am going to learn to conquer you Dystonia and all!! More to follow, I’ll be a skier by May 2014!

February 2, 2014

One woman that did!

Today I participated in Cycle for Survival and due to low participation on my team I ended up cycling for 2 hours.  For those 2 hours I smiled in Jen’s memory, cycled harder and was grateful to be inspired by one woman that wanted to raise a cure for cancer.  She hasn’t stopped dancing in all of our souls and her legacy carries on annually at Equinox clubs worldwide.  By hour 2, I started thinking was this something I can do, could I Carrie Siu Butt take a disease and try to make it become more prominent, raise more awareness?  I think about this all the time, has Dystonia been my calling to help others? to inspire others?  A friend of mine told her daughter about me and she said see – Carrie is a miracle.  I am!  I have been through many life changes but the one thing that is constant is that Dystonia has been with me for 27 years of my life.  As I embark to celebrate my 8th year of DBS this year, I am thinking how to use my good fortune to spread the word – still through running, but is there more I can do? Write a book? Speak at engagements? I need to educate the future generations who may get this gene, that it is not a life sentence, it is not the end of who you are…but the beginning of a different journey…a special one…we are all special in our own way inside and out.  

To Jen, wherever you may be – I danced for you and with you today!  This world misses you but we are so happy to have you in our hearts at least once a year if not daily!

January 29, 2014

Guilt, Forgiveness, DBS

After spending a very long day in LA today, I got to the airport and had to wait for about 5 minutes for a female assist.  As the minutes went by, the more frustrated and cranky I got,  Then when she came over she asked “Do you know the procedure?” to which I begrudgingly answered it’s been eight years, yes I know the procedure.  And because I was already annoyed, I looked up to seeing three TSA agents staring as I got my pat down which made me really angry.  I started to get really pissed and then started to feel terrible guilt.  Why am I getting angry at a situation when the device which has given me life is causing the situation?  

Then I realized I was being stupid, I was being ungrateful for the luck I had to have had such a miraculous outcome…I should be proud of my 8 years of pat downs….it has been the gift for helping me run for those that can’t, it has been the gift that has taken me paddleboarding, snowboarding, skiing, snorkeling; it has given me the greatest gift to live life fearlessly.  So as I forgive myself for being mad at having to get a pat down, I am proud that I have not taken my second life for granted, that I try new things but most importantly that I raise awareness for those of us that can’t run or walk!  Dystonia has been my life lesson and in a moment like today I realized it has been my greatest gift as well!


January 8, 2014

Back to Basics – Recognizing my limitations

This weekend I was planning on running a 15K, below the 10mile threshold that my body can take…but after thinking long and hard about this, I still am not sure I can run or should be running more than 5-6 miles.  I am still recovering from the last 2 at the end of the year and a little off with balance.  So 2014, is the year of acceptance and gratitude.  So I am thankful I am healthy, can run and still pretty athletic..but accepting that a 15K may not be the right thing to do just after 8 weeks of almost running a marathon.

So for all my Dystonia readers, this isn’t about giving up.  This is about listening and honoring your body!  Be kind to yourself as I will be to myself in 2014.

December 27, 2013

Final Blog…wow, what a year!

I am not sure this blog will do 2013 justice but here goes!  My year was full of twists, turns and unexpected surprises and learnings. From January 1st this year, I felt the year was an upward battle with no end in sight.  I started the year of with news which was so unexpected that I didn’t know what the year was to bring….two weeks later, I found out the most precious thing to me my DBS was fooling me for months…I found out I had an open circuit and that I also had to replace the battery. I still remember that day vividly opening my eyes and seeing light, after feeling so lost and dark for so long.  So Lesson #1listen and follow what your body is telling you, sometimes you just have to be your own advocate.  I am so happy I kept on fighting for myself and believing in myself, especially when other doctors told me nothing was wrong with me.

My dystonia has been something that I have always described as “the disease”.  Lesson #2Acceptance.  For the first time in my life I realized dystonia is just who I am, no different than having wrinkles or black hair.  It’s just me.  Part of Carrie.  I have finally come to accept my Dystonia and truly want to change the face of this disease.  As I reflect, I have used Dystonia as a crutch that I may have abused once or twice…but the reality is life gives us hills to climb dystonia or not…so this year I climbed and climbed and finally hit summit and learned how much I accept and love the person that is me.  So I have decided to keep on raising awareness and being very vocal about my Dystonia for the foreseeable future.

Three half marathons, 5 months.  Lesson #3 – Taking care of myself.  I have learned that running marathons or races don’t prove that I am a bad ass, I AM A BAD ASS.  I don’t need to push my dystonia or my DBS to feel like I have to prove anything.  For a while, I felt lost without an identity without being able to say I am training.  So now I have shifted to saying I am a runner and you know what – I am!  The after effects of running long distances are too much and I am happy those days are done….I am excited that I retired on top.

Final, but most important – Lesson #4 – Gratitude.  I had no idea the outpouring of love my friends would have for me this year.  My family has been truly supportive and my friends nothing short of amazing.  I am always shocked at the amount of money I have raised for research to fund a cure.  My friends have been abundant with their wallets to support me in a cure for this disease.  I also realized I want to thank each and every set of eyeballs that read this blog.  Through this blog alone, I feel I educate more and more people globally about Dystonia.  So thank you for reading and sticking with me!

And as for 2013, thank you for the lessons and the learnings as hard and painful they may have been.  I am excited for the future and 2014.  These 4 lessons will be constantly with me and I am ready for a new year!  

See you in 2014!