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Shakey but that’s okay…

So it’s back to the reality of Dystonia, the what if days…I have to say the last couple of weeks have been rough…the tall tales have started which I haven’t used in a long time…when my speech is slurred, I just tell people I am really tired…when I am sitting on my hands or fidgeting I say I have had too much coffee and when I go to the gym I get sad, actually very sad but I am trying to keep my head up and a smile on my face as I know best.  I am stubborn I will acknowledge that, I will run these last two marathons in oct and nov and will truly retire..i have to cross two wishes off my list the Nike Women’s half and running a half over the GG bridge…stupid, I know but I want these dreams to come true.  

I received one of the nicest comments from my last blog and felt the need to write to tell all my fellow dystonia friends, live your life fearlessly but do it cautiously.  I may walk/run these last two marathons which wasn’t the goal, but a finish is a finish so i’ll take that!  Please don’t push your body to prove points, I have started to call my Dystonia my superpowers, my license to live fearlessly.

and on days like today when my fingers have their own super powers I thank apple for autocorrect! 🙂

Celebration time…

This week marks 6months since I had my surgery, since they found my open circuit…the one that caused me so much pain and anguish in my physical chest and in my heart.  Yet, that battery just symbolizes one more change in life and as we all know one thing that is constant in life is change.  I am extremely lucky and fortunate that I believed in myself and that my doctor also believed in my intuition.  Life is full of ups and downs, but often we forget the downs, please learn from them.  Dystonia will always present challenges in my life, however it will never break my spirit.  

Call me crazy, many do…but 6 months post surgery ran several 10Ks and one half marathon and training for two more in the very close future…My spirit my be bent at some times, but it will never be broken.  I love my scars, I adore my little limp on off days and I am very blessed and lucky that I have such supporting friends and family…

In 6 months, I went from cane and wheelchair to being able to be sporty again…and I just want to take this week to remember how lucky I am for great doctors, good friends and an amazing family!  My friend Karen ran a marathon in my honor last November and this past weekend, someone who I have never seen in 20 years secured a marathon medal for me and my sister…so to Karen and all the others out there…I love you all for going out and pushing your own limits to raise awareness of this disease!

The joys of dystonia and the challenges of Dystonia…

Last Friday July 5th, a miracle happened, one that I have been dreaming of my entire life..

I ran the fastest 6 miler, I have ever run in my entire life…by myself more importantly.  I felt strong, I have been working really hard for this day and dreaming about it the day I emerged from brain surgery.  I was running as fast as an able bodied person, and so proud of myself.  I was smiling all weekend and thankful all weekend..

Then Sunday evening happened…one of those events that just are never planned when living with a disease…An tremor episode happened…and while I started shaking I started hearing the lyrics from Daniel Powter’s song – Bad Day, especially this part of the song ..

Sometimes the system goes on the blink
And the whole thing turns out wrong
You might not make it back and you know
That you could be well oh that strong
And I’m not wrong

Cause you had a bad day
You’re taking one down
You sing a sad song just to turn it around
You say you don’t know

And those tremor episodes start a bad day, a day you know will pass, but the emotional path to getting over the bad day is a long one…one of being scared, feeling like you are the only person on the planet, and then in a moment of clarity you remember you have friends…friends that can help you breathe through the moments, friends that can bring you lunch because you are too exhausted from all the brain activity and medicine to go to work….Then what I like to call the Siu-Pity party starts (but I try not to keep the party to only one day) – the why me? why now? what happened I was such a bad ass 3 days ago…and then the anger and then finally the acceptance…the acceptance that it was just a bad day, the acceptance that I have Dystonia, the acceptance I could have more bad days and the realization I don’t always have to go through it alone…

So I share my story because for all that follow this blog, I am real too…I have bad days, I have great days…and the bad days are always a gentle nudge to slow down a little and realize I am differently abled…But the disease as always won’t rule me but will have to be my physical compass – to remind myself that I still work out more, run more than most able bodied people I know and I shouldn’t stop because I had a bad day…plus the Siu Pity party is kind of boring and who wants to go to a boring party?

So for all of you that I ask if I have bad days, I do I just acknowledge them, allow my body to rest for 2 days and get back to my training, because as we all know its not about pace, it is about lacing up, going out and finishing and celebrating the medal with friends – now that’s a party 🙂

Hello there! I am back.  I needed a month off of my blog to reset my mind, body and soul.  I had to take stock after that last race and be at peace that everyone has a bad day and that was my last race – a bay day.  In the month, I have made sure my knees are fine and that my toe pain was taken care of.  I needed to take care of my body, but I also needed to realize that I needed to believe in me.  

Last night, I was looking at my facebook profile pictures and realized in 7 years I went from bald to a full head of long hair….then it struck me, my legs are really only 7 years old and I am learning how to be a better runner everyday.  I have had so many setbacks and I always get it up stronger and better…So when I learned I got into the Nike Half Marathon, I decided to train properly and take the learnings from my last race and be better.   Failures happen for a reason, they are meant to help us learn to be better; to be stronger…So here I begin training for my race on October 20th, I am going to lace up and go for a long run and be proud of all that I have accomplished over the 7 years – running 7 miles without stopping, taking a 1 minute off my time and most importantly enjoy every minute of it!

I had a bad day…

I debated this blog for the last 30 hours because yesterday wasn’t pretty.  Quite frankly it was kinda of horrible (in my mind)…From mile 1, the race was a hard one, I was really low energy and just didn’t have it in me….By 0.5 mile my toe which usually starts hurting around mile 6 kicked in with massive pain.  By mile 4, I thought I was done…so then the water works started.  I just was ready to walk off the course and be over with the whole thing.  I turned to Heather crying and said, I trained so hard for this, worked so hard for this and I am done, I give up.  She then turned to me and said…we are going to get this done, no matter what…I won’t let you give up…you look low energy have a gu….I have to say what I heard was ” you aren’t a quitter, you never have been, why are you starting now?” and so the journey began, at mile 4 I had no other choice but to run 9.1 miles in excruciating pain with a runny nose…between heather and my mom and sister texting, thank god….letting me know how much they loved me and believed in me, I know I couldn’t let all my supporters down.   So net, net I raised $1700…and that’s all that matters.  And you know what when most of the people I know were still sleeping, I ran 13.1 miles…  So I had a bad day, I have about 2 other halfs I have signed up for this year so if not yesterday maybe one later this year…let’s get this toe fixed and we’ll be good to go…and just so you know I got back on the horse today and took a spinning class…my pity party is over, on to the next one!

Wish me luck…I am flat in bed congested as can be and all over feeling a little crappy but resting for my first half of the year tomorrow! Super excited to run with my friend heather! Strategy depending on congestion to start slow and build up and go at last 4 miles! Fingers crossed I feel better tomorrow! Run – Carrie – run!

Lessons learned…

I am always getting the feedback your posts are so happy, you defy Dystonia, DBS has been your miracle…well as much as I am a robot, I have many emotions and fearful episodes of doubt too…

On my recent trip to Belize my best friend and I decide it would be a great idea to go visit some ruins and go cave swimming.  Ruins were slightly disappointing and we were ready to move on to the cave swimming.  In our typical travel fashion, we just book and don’t really ask questions…which always ends up with one of us asking the other what did we get ourselves into?

We were off to cave swimming, unbeknownst to us this would include walking a short trail for about 10 minutes and then somewhat of an arduous hike to get to the cave…there was a slight climb involved using roots as leverage and then several rocky passes where we just walked in our socks for fear of slipping.   When we got to the first rocky piece, I felt the anxiety set in, the doubts, the “carrie  just stop here let her go and stay back”…I ignored that first thought, then the root climb came up shortly thereafter and I felt the tears come in my eyes….”I can’t do this”…then I tried and made it…then the third obstacle came and I just blurted out “Times, like this I miss him”.  I recently just lost my third hand, my helping hand, the person that would always hike with me and help me, without me even saying I need help, he would just know…and as I blurted that out, I felt the tears set in and I quickly wiped them away no one wants a Debbie Downer on a tropical vacation. 

It was right after that comment, we saw the opening to the cave, the one we would have to climb several more rocks to get to and I was tired.  Rafael our tour guide was quite the humorous one letting us know the vampire bats were coming to get us.  Needless to say the hike was worth it, swimming in a bat cave miles and miles under a mountain may be one of the coolest things ever…but I have to be honest part of the cave floating was laughing and part was constant fear.  Fear of how am I going to get back to the tour bus?  My legs were extremely tired and I just knew I couldn’t do this on my own.  I had no choice but to say to the tour guide – I have to ask for your hand, I have a disease and the down part of a hike is the hardest, will you help me? (what was my alternative, living with the bats?)  So we took our time down and he gave me his hand every step of the way.  The irony though, was I did slip at then end on a flat slippery piece the one time I said I could do it…tricky, tired legs!

After a drink that night, my friend said to my – I was so surprised at your strength and how you were going after it, why the self doubt?  I knew you had it and I was looking out for you.  Don’t you see we all look out for you? And to be honest, I hadn’t looked at it that way…I looked at it that I have to rely on the help of strangers now or modify some of my habits.  My Dystonia became very real on this trip.  I am stronger physically and mentally learning how to ask for help is getting a little easier as time goes on.  I am glad I pushed through, I am glad I asked for help, seeing my best friend squeal about vampire bats while cave swimming was priceless.

As I embark on my first half marathon of the year in a couple of days, I sadly sprained my ankle yesterday while getting off a boat, I thought I could do it and didn’t take the offered hand…lesson learned, take the hand silly!  So I am aggressively icing and taking lots of ibuprofen hoping to heal by Sunday… I may not make the best time but I am hoping to get it done.  Please cheer for me on Sunday as I run the San Diego Rock n Roll marathon!  And as always please, please donate…without my DBS, cave swimming would only have been a fantasy! 

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