Train has left the station…
Bags are packed, the same outfit I have worn to every surgery is ready and I am calm. This surgery has felt a little different for me since I have had to see a deterioration in myself – a decline physically and mentally which produced an emotional result 😦
Everyone has been asking how are you feeling and I have to be honest – scared, nervous, frustrated. Looking forward to eating ice cream sandwiches, which I never eat except for surgery. Looking forward to cheating on my diet 🙂 Not really looking forward to my 6th surgery in 8 years. I thought I had signed up for a brain surgery and then a battery change every 4-5 years. So we should theoretically be on the 3rd not the 6th. I am learning though, life happens. I can’t control why my past batteries have malfunctioned, I can’t control how fast this battery is declining. But what I can control is my attitude towards tomorrow and the recovery. So here goes to a quick and easy battery replacement, to being recharged and renewed and to being positive and brave during the whole process! Running, pushups and burpees – see you in 6 weeks! It could be a while before you see me back on here, so wish my luck and thanks to all my readers for being on this journey with me!
Happy 8th Bday!
8 years ago today, my life changed. I felt like I was given life. I never looked back. I am still a baby by society standards…I have experienced wins and losses and still learning my way around able bodied life! I rarely look back, I never regret. I question sometimes when I feel the way I feel today. I question sometimes why the battery has to die when it does. But all in all, I take the little bad with the overwhelming good. I have ran races, easy ones, tough ones, I have skied, snowboarded, paddleboarded, snorkeled. I have lived a full athletic normal life. I have hiked, I have travelled, I have lived and won’t stop living. I will continue to seek out adventure albeit safe ones and I will continue to take the good with the bad.
Over the last week 2 people sent me the video and I laughed and I cried when I watched it. I am always amazed when women like myself accept what they have been given and work within those challenges. Her line that spoke to me was so amazing – being disabled is part of being the biggest minority population out there….so I am learning every day to be okay with saying I am disabled even though you can’t see it and I am learning everyday to appreciate the good with the bad. But I have a gift and like Maysoon, I want to use this gift to inspire others to not give up.
So on this 8th birthday I have decided that I want to start dedicating more and more of my life about talking about living with Dystonia, living with a disability. This is nothing to be ashamed about but instead is just a part of who I am, no different from having black eyes. Fast forward a week from today and I will be entering the hospital getting ready for my new recharged battery and life, and I have never been so excited to have surgery!
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!
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!
The countdown begins for so many things….My 8 year anniversary is right around the corner…and so is my battery change. I have been trying to remain calm about the battery change, because my body doesn’t feel right, though the memory of these symptoms are slightly in my head. I have given up running due to many falls in the last week. I am wearing my glasses all the time now. I am in bed early because my energy level is just low. My battery is dying and I have accepted it.
I started the surgery pile – the pink velour track suit that I have worn for the last 8 years was the first thing in the pile 🙂 And as I started thinking about what else I needed, I started thinking about my life in general with Dystonia. Dystonia has made me appreciate life, though I get frustrated sometimes, I am still looking forward to everyday. Dystonia, has made me inspire disable and able bodied people to run, to get more physical. No matter what the pace, you got out there and laced up! Dystonia has taught me how to deal with setbacks, that racing scheduled I had planned for the next 2 months, scratch that, I’ll be recovering! But all of you that read this blog has made me a better person. Dystonia has given us a special community to be a part of…Dystonia makes that finish line even sweeter. DBS has been a miracle that occurred in my life time, that has allowed me to walk, to run, to dance, to hike and though I take that for granted when I get sidelined like I am now I get very thankful for the miracle of DBS. DBS has allowed me to not feel my disease progress, as I feel now. DBS has helped my spread the word of Dystonia. DBS is a part of me. So as much as I feel like a cyborg this morning I have to be thankful and will always be thankful.
For everyone that reads this blog, I am like you as well. I love the good and will make it through the not so good. When I am tired now, I sleep. I am taking care of myself for the next several weeks prior to surgery – no need to prove that I am a hero, when I know that I already am!
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.
Listening to your body. Knowing yourself.
There are many times, that you know even before the doctor says what the outcome is going to be. Let’s be real, I am truly a robot. I have wiring, I have batteries, I need adjustments. Lately, I have been running slower, being hyper emotional and really exhausted signs I have known before, signs I have ignored before. This morning I went into the doctor telling him this battery is dying. I know it…and as much as I have said this before, I truly believed it…The minute the process to check was done, i knew the answer, I saw the body language, i was right. Not only is it dying but its crashing fast. So I started to cry, not because I am having surgery, but because I am ready to not be hyper emotional, ready to run, again, ready to be me. So I share the story, because I want everyone that reads this blog to listen to your body, know the signs. I may not have had a surgery scheduled in my calendar this morning, but i do now! I am looking forward to a recharged, rejuvenated Carrie! As always, I know I will get through this with flying colors and cant wait for a 3.0 upgrade! Despite having to be sidelined for 6 weeks, I am excited to feel better and be better.
It takes a village…
It is a week before my next check up and these appointments are always a reminder that I am part science experiment. In a week, I will know if I need a battery change which as much as I don’t like surgery I will be relieved to have a newer, upgraded device. This battery is 4+ years old, and it has seen a lot:
1. tough mudder
2. a marathon
3. a tri
4. 3 half marathons
5. Many life changes
It’s been through a lot and as with most hardware devices, it would be a refresher to get a new battery. It will be great to be able to check my voltage on my own and not constantly worry if I need a battery change. I am constantly reminded that I am going to need help to recover and post recovery and it will take a village but my village is amazing.
I was reminded to blog today because I ran into an old friend and she said, you know you are so amazing and so accomplished I am always in awe of your tenacity and every thing you have overcome. Those words could not have come at a better time, so as I start thinking positively of my appointment next week, so we will know in a week if this battery needs to be changed and if it does so be it!
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!
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!