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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 16, 2014

How fast a year goes…

So a year ago, I was gearing up for a new surgery.  I remember the week prior, just thinking to myself, accept what the universe has given you.  But you know something is wrong, trust your gut, trust your intuition, you know when they go inside of you they will find out what’s wrong.  You are technically a robot, not until the dis-assemble you, will you know what’s wrong.  The night before at dinner, I was all smiles and calm as can be, especially with my mac and cheese and my “Carrie 2.0”.  Even my-ex said you are super calm, and it was because I knew deep down I was right, I wasn’t depressed, I knew my robotics were off…I knew I was at the end of a six month ordeal!

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I remember waking up and seeing such light and love in the world.  I felt like a different person, I somehow remember my gut thinking I feel a draft on top of my head, but I couldn’t really care because even if I was bald again, it was okay…I felt different, something was different…then the Medtronic rep came in and said we found an open circuit and there were tears, many tears, for all of those that thought I was being dramatic, I was so happy I listened to myself.  Here is my fancy haircut!

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So here we are one year later, 3 half marathons later and an awesome head of hair again!  I can’t believe how lucky I am again.  And really am thankful for everyone who supported me during that recovery time!  Without friends and family I truly know I can beat this disease again and again and again!  So thanks again from one of my favorite places in the world!

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January 12, 2014

Accepting the inevitable…

I know when my body is giving me signs and I know my battery is failing.  I woke up this morning and simply went to grab a shirt from my closet and fell, completely getting more scrapes and bruises then usual; I started to cry not out of pain but out of the sheer frustration that despite me knowing that the battery is going, I have to wait until the number registers for me to be approved for surgery.  So I was crying because how many times do I have to fall again?  Will it be as simple as it was this time just a few scrapes? What if next time I hit my head or worse? But this is the world we live in…One where decisions are made by numbers not reality.

I wanted to share this article, that I came across yesterday – It was so well written and anyone that knows me knows that I try to make living with a disability as positive as possible.  So falling this morning and being a little scared wasn’t how I wanted to begin my day but I am reminded that I am still going to go workout and go on about my day, it was just a reminder to take things a little slower today.

http://www.huffingtonpost.com/tiffiny-carlson/lessonspeople-with-disabilities-_b_4577337.html?ncid=edlinkusaolp00000003

10 Things The World Can Learn From People With Disabilities

Posted: 01/10/2014 3:39 pm

No matter the type of person, there are lessons to be learned from them. People with disabilities are especially influential, as our hardships in life aren’t easily forgotten. We go through every day with determination and strength, which many people are bowled over by, with many secretly wondering if they could do the same thing.

People with a disabilities learn so much throughout their lives; life lessons that able-bodied people rarely get to experience.

Having a disability is definitely difficult, but it’s also one of the richest classrooms a human can experience, too. While these learning experiences are more profound experienced directly, there are some special tokens of wisdom we can pass along.

1) True happiness is really possible in a “broken” body.

Most say they would rather die than live with a disability, which makes me laugh. That’s because most able-bodied people can’t imagine being happy if their body was ever permanently broken. But the truth is that the human brain is very adept at transitioning into someone with a disability, if you let it, that is.

I thought I would never be happy again. But a few years after becoming paralyzed, I was happy. I found happiness through simply being alive, and through family and friends. I still wish I could walk again, but true happiness resides in me.

2) Patience can get you through almost anything.

You’re told as a little kid how important patience is and as an adult you come to see how true this really is. But when you have a disability, the patience required is at a whole new level. Very often we have to wait longer for all types of things and over time we become masters at honing in on it. Patience has even helped me emotionally get over my physical inabilities in certain occasions.

3) Accidents can and will happen.

When you hear about people becoming disabled through an accident, you always think it could never happen to you, and you almost look at it like a TV show or movie — something that could never be your reality. But the cold-hard truth is that accidents that cause disabilities happen every day, and they could likely happen to you or someone you know. The realness of this possibility is tangible in all lives, but when you have a disability you’re just a bit more aware of it.

4) Disability can happen to anyone.

Maybe no congenital disabilities run your family, but say your first baby had cerebral palsy. It’s shocking suddenly finding yourself in the camp of either being disabled or the family member of one. The wisdom here is to never forget we are all imperfect physical beings, and to never think you’re exempt. We will all die one day and we’re all human.

5) Don’t sweat the little things.

Since having a disability can be rather stressful — broken wheelchairs, health insurance cuts, caregivers suddenly quitting — we learn early on to not let our stress levels get too high. If we did, none of us would make it past 40. We are confronted with crazy things all the time, so we learn to prioritize what is really worth freaking out over. That is why so many of us seem so zen-like. The movie is sold out? The restaurant has a two-hour wait? No biggie. It could always be worse.

6) Being different is an opportunity.

Most people don’t like being different or standing out. You have the outgoing Venice Beach type people of the world, but generally most people don’t want to be noticed. However, it’s not as bad as you’d think. In fact, when you live the life as someone who’s different, you learn right away it has its cool moments. You get to meet amazing people and get in on special opportunities. When you’re vanilla, no one notices.

7) Fitting in is overrated.

When you have a disability, you pretty much have a free-for-all card to be exactly who you want to be since fitting in with the “in” crowd is impossible anyways and embracing this can be one of the most freeing feelings ever. You don’t need to fit in to feel good about yourself or to think you “belong.” You belong to yourself, we know this. And that feeling is amazing.

8) You can’t judge a person by their looks.

You hear it all the time, don’t judge a book by its cover. From Stephen Hawking, a man in a wheelchair who can’t speak and is one of the smartest people in the world to Francesco Clark, a quadriplegic and CEO of a huge beauty product company, don’t ever think a disability is equitable to someone who is not impressive or successful. You never know what someone with a disability is capable of.

9) Life is short. Embrace everything.

Having a disability can also, unfortunately, have an impact on your lifespan. For many of us, living to 95 isn’t probably going to happen, which is why most people with disabilities have figured out the secret to life — enjoy each day as if it were our last. We all try to do this in our own way, but many of us fail. People with disabilities however, have gotten it down to an art form, from enjoying the sun rays to a warm cup of coffee, we know how hard life can be so we know how to embrace the good things when they present themselves.

10) Weakness isn’t always a negative

Just like the notion “it takes a village,” being weak or disabled isn’t necessarily a negative thing. When living with a disability, you learn to be OK with receiving help, and over time, many of us realize that we all need help in our own way, even athletes and the President of United States. It’s unavoidable and part of the human experience.

There’s no getting around it, having a disability is certainly a difficult ticket in life, but the life lessons to be had without question make it a near VIP experience. And hey, the free parking is a nice perk, too.

 

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!

 

December 19, 2013

Dystonia…

Do you all know that dystonia is the 3rd largest movement disorder disease in the US? 1st is Parkinson’s, then essential tremor and the Dystonia.  I often wonder why is Dystonia so uncommon and someone once said because no one famous has ever come out and said I have Dystonia.  It is frustrating because it is more common than we know.  Today when I went to the pharmacy and asked the pharmacist if she can tell me which cold medicine won’t interfere with my Dystonia, she said What’s Dystonia? It can be frustrating sometimes…but I have taken the approach don’t get frustrated, get to educating.  I no longer hide behind the Dystonia, I am working to be that famous person to be the face of Dystonia.  To get out there and talk about it and then I remembered this video..

I was so vocal and so open and honest about it.  I am excited of thinking about the many things I can do to spread the word next year… take snowboarding classes, complete a tri, be fit, be healthy and enjoy being active!  I can’t be nothing short of excited to show the world what this terminator can do….and as I reflect I get excited about the next chapter in my life, to write the new chapter of sporty activities in my life!

So despite always shedding a tear of joy when I see this commercial, it takes a village…and between my spirit and seeing media ads such as these I am optimistic the world will learn more and more about Dystonia!

http://www.youtube.com/watch?v=UE2ACtif5GU

December 12, 2013

Mumbles from Happy Feet here she comes…

So I now have had 3 more instances of people asking me if I am slurring or they aren’t understanding me…the hardest is when they are work calls…But the reality is I know one of my batteries is slowly dying its just a waiting game until the machine goes to the magical number so the insurance will pay for the surgery.  So unlike the Carrie of the past that ignores the signs, this time I am being different.  I meditate every morning so on those work calls when someone says you are slurring I don’t understand you, I take a breath in for 2 seconds and breathe out for 2 seconds and try and repeat myself slowly instead of get frustrated.  I bought a “hurricane” a steadier cane, this one has lights too :).  I just want to be ready so when I really get weebly wobbly I have a third leg and again not get frustrated.  Lastly, I got a handicapped parking pass just for when my gait really starts to fall rapidly I am not frustrated that I can’t find parking or have to walk too far.  So this time versus so many others, I am taking it slowly, resting, and not pushing myself.  It is a waiting game, it is inevitable.  But this time I am prepared.  I was a little sad tonight about the speech being such an issue for the last couple of days then I remembered I have to be thankful for the gift I am so lucky to have – the gift of being able to be active.  I am still a miracle, but like everything that is battery operated batteries have to be changed!  So I am going to be as calm and patient as I can be and I have to say I am proud that for the first time I accepted and am prepared!

December 10, 2013

“I am bigger than that hill, think about your life everyday” – random stranger on the hill of Tough Mudder, 2010

This quote came in to my head this morning as I went to the doctor for an issue.  In the first five minutes of the appointment, she said you are slurring, have you been drinking, are you drunk?  This was at 10am mind you….I looked at her with blank eyes and then responded I have a rare disease called Dystonia which can cause that sometimes would you like to know about the disease?

We live in a world that people assume…I am sitting here hurt and angry.  But before this emotion passed, I want everyone to take the time and reflect and how we treat others who are different from us and the assumptions we sometimes make.  So I’ll recover, I’ll be okay this was just another hill in my Dystonia journey.

I just want to share with all of you, I too have my trials with this disease….running or working out doesn’t mean I don’t have different types of setbacks because you can’t see them from my gait.  But as Kelly Clarkson said, what doesn’t kill you makes you stronger!  So to my strength!

December 4, 2013

To my sister…

Yet another battery change, yet another surgery!  You have taught me more than I ever knew and the older I get the more I learn how brave and strong you are.  You trusted the DBS before they even knew how DBS could affect Dystonia patients.  Many of us thank you for taking that step and the jump and paving the way for us.  You taught me how to accept.  You taught me how to embrace.  I may not say it enough but thank you!  Many of us thank you, I always get excited when people write in to the blog and say your sister is amazing…so on behalf of all of us- thank you!! you truly are an inspiration and a risk taker!  Good luck tomorrow and we all know you are going to kick butt!  I love you so much, thank you for being my constant inspiration!

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November 30, 2013

Reflections

I had a way longer drive than I expected in the car today and my mind started to wander and finally it came back to here…my blog…I was thinking what lessons did I learn this month?  As most people know I always like to reflect about lessons learned and many come to mind but first and foremost – I am amazing.  I am awesome.  That simple.  I learned that lesson a little bit of the hard way but I get it now….

So November has been interesting I felt like I went from hero to zero..I started out the first weekend with a bang running my last and final half marathon and killing it in 2 hours and 40 min and all the while I was running and enjoying every minute I kept on thinking please don’t let what I think is going to happen next happen….by 1pm, I felt that tremor in my right pinky and by 10pm that night full on tremor and completely twisted…And from that day on it kept on getting worse my worse nightmare…Slurring, eye issues and then finally the cane..but after a doctor’s visit I can say I am back to 90%…I am okay with that…I still wake up in the morning with tremors and try to shake them off as much as possible and still have a slight issue with the left but if 90% better is all I get then I am going to be grateful for that.

What did I learn?  If I can digress for a second…I am not a fan when people say “Dystonia sucks” ; it actually makes me sad.  I think of my dystonia as a gift and a little curse every now and then.  I have been able to take a disease which I got at an early age and with the miracle of science been given the gift of running.  I have so enjoyed running for those that can’t…or at least that was the point of this journey.  Little did I realize I would inspire those that can…I have friends from near and far that have said thank you for inspiring me to run my first 5K and someone even ran their first marathon after I ran Chicago.   So Dystonia, has been my gift that I give endlessly and around this world to try something whether disabled or abled…

The curse has been that I have tempted the DBS science once too many times, marathons, tough mudders…but I have learned all too well now that I am human too and that sometimes your disease can beat out the science…so why tempt fate?  Even this morning I was happy with my little run albeit a little slow and a little limpy on the left side but I didn’t give up…I set a 3 mile goal and I made it…Secret – I was so scared, it was my first run since the half marathon and I didn’t know if my legs were going to be able to do it…So I too suffer ups and downs, but it doesn’t “suck”…it’s part of my life’s journey.

I often forget how far I have come and the night before my doctor’s appointment on the plane ride down; I watched this video to remind myself that DBS has been more than just a success it was nothing short of a miracle.  I remember tears streaming down my face thinking did I screw it up? Did I push the stimulators too far…and luckily I know now I still have another chance.  So what did I learn?  I learned that I am amazing, that I took a frown and turned it upside down…Don’t give me wrong, I did throw myself a little siu pity party for a little, but I am realizing now that this is me – Carrie – I have black hair, a great sense of humor and Dystonia…wait you haven’t heard of that? how long do you have 🙂

And to my little sister who teaches me more and more about Dystonia everyday; good luck on Thursday and I know your battery change is going to go well!