Author: Carrie Siubutt

Life is a marathon…

There are times when I realize that my Dystonia is my sign to calm down, to take challenges as they come and to let life be.  I always remember Dr.T has always said please don’t stress out, when you stress it puts too much stress on your system and takes everything a moment to recalibrate.  Sometimes I forget I am a robot, sometimes I let life get in the way without trusting.  Trusting that everything will be okay. I am a product of trust.  It took many years to convince myself to have DBS.  I was afraid.  I was afraid of being in a wheelchair, I was afraid of being paralyzed.  It took almost 2 years to take the leap.  To realize that my alternative was going to be living in a wheelchair anyway.  The 2 years of torment, fighting having a surgery that was life changing could be my biggest regret or my biggest gift.  DBS has changed my life everyday, DBS has given me the gift to run, to raise awareness and the reason to challenge myself to new heights daily.  If you are reading this today, go for a run, go for a long walk, don’t talk your life for granted,  Enjoy each moment!

Don’t stop believin’…

There are days when I just am not sure I can run that last mile or just want to hop in a cab and give up…and then there are moments when I realize I should never stop believing…believing that I can run or even believing that I can and did run a marathon.  There are times when people remind me how amazing it is I ran a marathon.  The beauty about that statement is that no one ever says you ran a marathon in 7 hours, right?  I sometimes remember how sad I was that I didn’t get it done in 6 hours and then I remember but I finished and that’s all that matters.  A little 11 year old who woke up one morning with an introverted foot, ran a marathon…me a 36 year old woman with Dystonia.

I forget sometimes that just the act of running is more than 90% of my able-bodied friends aspire to do, I realize that I am a stronger person for just getting out there and running a 14 minute mile.  So no matter what you can do, a mile, 3 miles, be proud you tried, be proud you laced up and just remember that you run the disease, it doesn’t run you!

To October 9, 2011….

Run carrie run…

I am back…I am running for all of those that “can” but because they have severe forms of Dystonia they physically can’t.  I am running for all of those that smile in spite of their disease, I am running for all the kids who have inspired me to be selfless.

I am not running for the medals or the pictures.  I am finally accepting that I too have dystonia.  I am running at a 14 minute pace and proud…because what I remember nowadays is that DBS is a gift, a gift I shouldn’t abuse, but a gift that I can do good with.  So please train with me, please send me good running vibes, please tell your kids about this stranger who is like them and running for them.  I am running because I am lucky and I am spreading that luck to everyone.  So if you ever see me running slow and steady feel free to high five me 🙂

If you can spare $10 to help find a cure, please donate below!

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

I love my blog, I love my Dystonia, I love my DBS, I love me.

I just want to send some eternal love to all the followers of this blog, my friends, my family and to everyone that just needs a warm and fuzzy blog.  I love my ability to walk, I love my ability to run, and I love smiling doing it all at a 15 minute pace.  I love that I have this chance everyday again.  And I love my Dystonia.  I love what Dystonia has taught me.  My relationship with Dystonia is like any other relationship, we break up, we get angry, I forgive, and then when I am better I learn to appreciate why I love the disease.  The disease was a gift to me.  A gift to remind me everyday how lucky I am to be a DBS success and have a passion to test my boundaries with a ski class, a strenuous hike or just a walk with a friend.  So today, I profess my love for all of what Dystonia has taught me and how it made me the beautiful, strong woman I am today!

A living miracle…

I may be in my late thirties, pretty close to almost touching 40 but I still believe in miracles.  I still believe that no matter what the odds are, if you believe dreams can come true.  

After almost 3 months of limping and fumbling with a cane, I was able to go for a 6 mile walk and a 6 mile hike this weekend!  Today, I even went to the gym and rode the bike for 30 minutes.  The last 72 hours have truly been miraculous.  When my circuits were malfunctioning, I thought for a flash second what if I can never walk properly again or what if I can’t ride again…but today those what if’s are I can.  I can go for a hike, I can go for a ride, I can do whatever I put my mind to.  I am extremely lucky DBS has given me a shot at life again and what I cherish now, more than anything in the world, is that my feet can touch the ground again!

So I believe in miracles and I will never take my being physical for granted again!

Canes, Planes and Automobiles.

I am so thankful, so grateful, so happy.  I haven’t felt happiness in quite sometime.  DBS the friend you love, the friend you adore when everything goes according to plan but can also be the friend that fools you, the friend that you thought you could count on to get you places and doesn’t, the friend that lets you down and hurts you.

DBS.  Dystonia.  So many lessons learned, so many things this disease has taught me, some good and some bad.  For the last 6 months, I haven’t been myself, I have been super sad, highly volatile, and quite frankly hurtful to the ones I love the most.  I didn’t understand why this was happening and my neuro said, its okay women your age suffer from depression and yet I knew that wasn’t right, but she was the expert.

Then my battery started heating up in my chest…

Then my walking started to fail…

Then came the cane…and I felt my world that I knew for the last 7 years slowly start crumbling…

But then I went to see one of my old docs and he said lets rewire you…and we did…

on January 18, 2013…I got my life back, I got my smile back, I felt the darkness go away and my can do attitude came back…I remember opening my eyes and the Medtronic rep saying “Carrie, we found an open circuit”.  I just started to cry, when he asked “why, the tears”?  I knew those were tears of relief. tears of happiness, tears knowing that I finally was seeing the light and happiness again, comfort in knowing I was right.

7 days later post rewiring and battery change, I am happy to say I walked 2 miles and smiled.  I will never take a step for granted ever again, I will never assume this miracle I have will always be here.  This was reminder to enjoy life, to walk every step and smile every day.

10 days later, I put on my favorite heeled boots I first bought 7 years ago when I realized I could wear heels again and smiled.  I sent a letter to the person I hurt the most and knew I was forgiven because he saw someone he once knew return when I opened my eyes after surgery.

10 days later, I am relieved to know me again and be in love with myself, my dystonia and my wires again.  But what I am most thankful for, is my family and my friends that have constantly supported me on this journey.  My love to all of you!  Oh and “candy cane” – you taught me many lessons, but for now its back in the closet for you, I hope that I don’t see you for a really, really long time.

Here we go again….

One of my best friends said to me yesterday, hope is not a strategy and that somehow resonated with me.  For over the last 4 months, that was my strategy.  I would hope the pain in my chest would go away, I would hope me not being sad would go away, I would hope one of these doctors would listen to me and not try to prescribe me medicine.  Well it’s the strategy I pursued for months.  It’s the strategy that I kept a secret.   Hope was my strategy.

All year since the marathon, I wasn’t feeling myself. I know everyone said you know the risks….I did, but I ran the biggest race of my life anyway.  And now hope as a strategy is no longer valid.  My left side again is malfunctioning, or some would say short circuiting.  That means two things, – constant pain and sometimes erratic emotions.  For those of you who have ever had those symptoms please go see a doc.  Finally after months and months of no one really putting the effort to diagnose the solution,  my favorite doctor did! I have to say the hard part of Dystonia is the misunderstanding of the disease, it’s part physical and it’s part mental.  That’s the hardest part of the disease – the explanation.

The end of this physical pain is in sight…I will be having surgery on Friday to remove the malfunctioning battery and also get rewired to ensure that these issues don’t happen again.  I am very nervous about the rewiring but I know it will all be better once I am fully recovered.  This hasn’t been an easy journey…turning myself off, using a cane, calling the airport and asking for a wheelchair, quite frankly my ego is bruised…but I know I will be stronger.  I learned so many lessons this time around.  I learned that skiing lessons and buying a bike in my very near future; I learned never put off tomorrow what I can do today.  I can’t wait to be back up again.  I can’t wait to have new batteries and wires, and most of all I can’t wait for what the future holds.

New Year, New Battery….

Sometimes life throws you curve balls and it is how you handle these random events that remind you how far you have become.  I have been turned on for the last 7 years and I have forgotten.  I forgot what Dystonia is.  I forgot how Dystonia makes me feel.  I forgot and took it all for granted.

I have been having trouble with my batteries recently and have been going through physical pain.  In order to mitigate the pain, I turned off the batteries.  As humbling as the process has been and as bruised as my ego is, I am reminded each step at a time how lucky I am.  I am thankful for doctors, researchers and Medtronic for having found the miracle of DBS.    Personally, I have found a reason to smile, to remember to live today because you don’t know what comes tomorrow and also live each day to the fullest.  I have been shocked that 14 months ago I ran a marathon and sitting here on January 1, I am just looking forward to running 2 miles again.  Many lessons have been learned – my Chicago marathon was my first and my last.  My body is precious and I can’t stress it out too much to try to prove that I can overcome the disease.

Each step I can take is a reason to smile.  So my new years resolution is to appreciate every run, every walk, every activity I can partake in and in the process appreciate all of it!  And as always thankful for all the love and support in my life.

Thanks. 

Sometimes we only say thanks during the holidays, but as we approach the eve of Thanksgiving, I just wanted to remind myself and everyone for what we are all thankful for.  I am thankful for my boyfriend Matt who held my hand at the doctor last week, when I felt a shock from my batteries like I never felt before.  I am thankful for my family and friends who support me still and strong as ever since the day I became the Terminator/Vicki the Robot.  I am thankful for that all family and friends who are able to celebrate Thanksgiving post Sandy.  I am thankful for my friend Karen who is running a marathon on my behalf this weekend.  I am thankful my battery stopped shocking me.  I am thankful for everything that life has offered me.  I am thankful for everything Dystonia has taught me – to appreciate life each day as it comes.

Big Thanks!

Thanks, Gratitude, Kindness from others.

Today, my post may be brief, but I just want to recognize how Dystonia somehow also has a neat side, it has a side that most never see from the outside, it has love.  I just want to publicly thank an elementary school friend of mine who I haven’t seen in over 20 years.  She decided from my Chicago marathon that SHE was going to run a marathon for Dystonia – run for Suzie, run for myself and run for all of those that can’t.  Karen, I want to publicly thank you from the bottom of my heart for training, running and wearing the Dystonia shirt proud next weekend!  Big hugs, Big Thanks and I am so proud of you.  You inspire me to keep my cause going even though I may never physically run a marathon again, but next weekend my spirit is so excited to run with you!  Lots of love!  26.2 miles love every minute of it!