DBS

Life is on the mend…

I have started slowly getting back to being a little physical after 6 weeks of doing nothing and 4 weeks post surgery.  I am taking things slowly…I always am so worried about my DBS and Dystonia that I also forget I am human.  I have been having persistent pains in my shoulder and my class instructor made me go to the doctor last October and we tried everything and the pain kept on getting worse.  And as the ortho tried to diagnose the problem he suggested an MRI.  I politely refused, and he knew why, he saw this…

The same xray I was looking at…and I was like you understand that because of my neurostimulator, my lifeline, I don’t have the luxury to have MRIs..So I said to him I can barely move my arm after four weeks of not doing anything and I guess the pain is only getting worse, why would this happen….and his answer cracked me up yet moved me, he said – most athletic people get injured from time to time…me, athletic?  Was he speaking to me? I looked around and I was the only person there…I repeated, well what are my options and he said after 6 months of trying everything and without means to MRI I have to go into the shoulder…so there we have it…The human side of me also wears down, experiences injuries, I am still human!  So though this sucks and my goal of running soon will still be postponed after that surgery, I am happy to be reminded that I am still part human!  

Life is a series of conversations…

This weekend, I had the luck of not only planning my 10 year reunion from Stanford but also had the honor of chairing the reunion committee.  That was planned since last October.  April 11th was not.  Battery changes are never planned they just somehow sneak their way into life.  So as I was planning for my surgery on April 10th, I was also firing off emails to my committee and friends reminding them to sign up.  The reality was I wasn’t even sure if I was going to make it.  I called my old roommate and I told her my dilemma and she said – Carrie, reunion can’t happen without you, you are class of 2004.

So 3 weeks post surgery, I rested with one focus planning an amazing reunion and making it to reunion.  It was epic!  I am so happy and inspired by so many this weekend.  I had classmates from all over the world come up to me and say – I love your running journey, I love seeing you 10 years later with a second chance at life, I love seeing you take your miracle and spread your cause around the world…I can’t tell you how overwhelming the whole weekend was.  This is a class of very accomplished execs, VCs, business professionals and they voted me one of the most inspiring, me – dystonic carrie, batteries and all!  

When I set out on this journey, none of this was the plan.  I had deep brain stimulation.  I was given a second chance.  I took that second chance and literally ran miles and miles….I spread the word, I inspired many and I am not done yet.  I was so excited that I made it to reunion.  What many didn’t know was that on Friday and Saturday I was at about a pain level 7, but pain is temporary the memory of this weekend will be forever.  I am inspired all over again to spread the word, to inspire many to know to work within your limitations and believe in miracles. One of my classmates reminded me that 12 years ago, he said what is wrong with your leg? why do you walk like that?  Those memories are hidden and I remember my response in those days – I have a rare disease.  Fast forward 12 years later and my response to why do you have scars on your chest? Is a proud, chest lifted answer – I have Dystonia would, you like to hear more… The other lesson on this journey is patience.  I went from running 5 miles at the beginning of the year to barely being able to ride the bike for 20 minutes today.  But as always, I will build back my strength and continue to be patient for the next 3 weeks.  And despite being frustrated I am always reminded I will be back to running across finish lines in no time!

Class of 2004 thank you for all the conversations this weekend!  The timing was perfect!  I am inspired all over again!

Days are now in single digits!

I have always used this blog as a forum to help others to inspire others, to see a woman’s journey with a rare condition through my eyes.  I am not sure I have ever felt the way I have been feeling these days..going through a battery completion.  I no longer drive – my eyes are too weak, my hands are too shakey – I want to be careful to myself and others.  I am tired by 3pm.  I can no longer form a sentence by 4.  I have thoughts in my head but making them out of my mouth is too much effort and sounds garbled.  Work gets harder and harder every day which for me someone who has prided herself as a career woman has made me frustrated and sad.  I don’t have energy to work out…my life has truly changed in the last several weeks and will continue to do so for the next week and half.

I always hear, Carrie you are on of the strongest people I know.  It is a statement that bothers me.  Dystonia has been my super power, the power to keep on moving, the power to keep on striving for better.  Dystonia has given me strength.

This morning when I woke up with minor tremors and an obligatory feeling that I may be getting sick (happens every time before surgery), I can see the end…I can see the light of the OR and for the first time I have to say this is not a marathon it is definitely a sprint.  April 11th can’t come soon enough…My OR time has already been changed and I know I’ll be hungry and thirsty that later it gets pushed back but you know what, I don’t really care, I just want to get back to a place where I have energy to speak, to drive and to be physical.  So I share my story to let all of you know listen to your body and always be your own advocate in this healthcare world we live in.

I am thankful to the many heartfelt words I have heard from friends in the last several days and weeks!  I am truly lucky to be surrounded my all of this love!

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!

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 #1 – listen 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 #2 – Acceptance.  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!