Monday, April 15, 2013

Bloom Where Ever You Are Planted

Where do I start? 

I started this blog last year for a couple different reasons. I was mad that Dystonia was not listed as one of the MANY neurological movement disorders being taught in my biological psychology class. I had a guy compare my life, my problems, my Dystonia to the pile of papers on his desk that he just didn't want to deal with. And mostly I was sick of pretending that I am a normal girl, I live a normal 20-something life, and that I was just like everybody else. 
That couldn't be further from the truth though, and I think the greatest disservice anyone can do to themselves is pretend to be something they're not and be ashamed of something they have no control over. It was my "coming out" of the Dystonia closet.
A couple years ago I discovered something called Advocacy Day in Washington, D.C. It is the Dystonia communities' chance to talk to legislature and try to raise awareness and funding on the Federal and State level.
Kind of a big deal.
I didn't know where this blog would take me when I first started. I would have been happy if I reached just one person. As usual though, God has opened doors for me that I didn't even know I wanted open. I received an email from my mom in March, the subject line containing a very simple "DO IT DO IT DO IT!" She was urging me to apply for the Douglas Kramer Young Advocacy Award, which would allow me to attend Advocacy Day in D.C. 
I filled the application out which contained a series of questions; How does Dystonia affect my life, What I have done to continue advocacy, What is my experience with Dystonia, etc. I wrote from the heart and pressed send, not thinking I would actually get picked.
Surprise! God had other plans for me, clearly. I still can't believe it and this is beyond my wildest dreams; a chance to not only advocate but meet people who are fighting the same fight as I am. Such an opportunity! 
I've been going over in my head what I might say. Which has brought me back to what I fear most about my disorder.

This is what I know for sure, these are facts that have been given to me.
Fact: There is no cure for Dystonia.
Fact: It is progressive. Eventually, I will be immune to the Botox treatment I receive.
Fact: Deep Brain Stimulation would be the next step.
Fact: DBS is not a cure.
Fact: In order to get pregnant and carry a child, I have to stop ALL forms of treatment and will be limited to taking only Tylenol. 
Fact: Without treatment, my head contorts (painfully) to the left and I have tremors, leaving me in excruciating, terrifying pain.
Fact: I have talked to mothers who have Dystonia and carried a child and they all warn me it is NOT an easy thing to do.
Fact: My future is uncertain.
Fact: I'm scared.

I just want to have a chance at HOPE for a cure. I have faith in God and that has carried me this far, and will continue to carry me. I just want hope that I will have a better future than the factual one laid out for me. I want to represent the young friends I have made who are also suffering with Dystonia. I don't understand what the older Dystonia community goes through, but I know what it is like to be in your prime and have Dystonia; it wears you down, makes you feel SO much older than you actually are. I am representing these young friends and I hope I do it well. 

It started with this blog.
I started connecting with other Dystonia sufferers.
I reached out to the Dystonia Medical Research Foundation.
I got to write an article for the Dystonia Dialogue.
I applied for the Douglas Kramer Young Advocacy Award and got it.
I'm going to D.C. to lay my heart out on the table.
This is my dream.
I am blessed.
It started with a blog.

Don't give up. 
Sometimes the small decisions lead to bigger things.
God is funny that way, isn't he? 

As always, if anyone suffering needs a friend, or if a young Dystonia sufferer wants me to bring something up for Advocacy Day, I am here. I'm not going anywhere. I'm not giving up. You shouldn't either.

There are moments that mark your life,
moments when you realize nothing will ever be the same,
and time is divided into two parts:
before this and after this. 

Monday, February 11, 2013

The Great Unknown

Another annoying period of writer's block. My emotions and my body have been all over the place lately. I went in for Botox on December 20th and in an attempt to avoid as much head weakness as possible, she did not do injections in the back of my neck. She also said that if I was not doing better the next time I came in she would have to increase the amount the Botox she is using. My translation:
I'm getting worse.
My anxiety has been off the charts for these past few months. Especially with my wedding and future plans coming together so quickly, the reality of my situation has been hitting pretty hard. 
Can I have babies? Where will we live? Will I ever find a high-paying job or will we have to struggle?

My mind keeps going back to what my biopsych professor said last year. We were learning about movement disorders (Dystonia was not one of them, which is actually what inspired this blog.) This professor was not aware that I suffer from a movement disorder, had he known I doubt he would have said what he said one day in class. As we are learning about these disorders, some of which were very similar in symptoms to Dystonia, he made the comment that if he suffered from a movement disorder, the last thing he would be doing with his life would be wasting it inside of a classroom. 

I work 5 days a week and I do pretty well physically; working in a spa has its advantages. I am only taking one class this semester and it is already almost unbearable for me to sit there for 3 hours once a week. I don't know what is going on with my body. It feels like all the tension builds from my lower back up and explodes into my head. The pressure is UNBELIEVABLE. I am so uncomfortable I can't even focus on what I'm supposed to be learning. Not only that, but I am SURE this makes my Dystonia worse. 
So what the hell am I doing?

It's so frustrating for me because I was always the girl in my family that exceeded in school. Dystonia changed all of that and I feel like all the potential I was gifted with has been robbed from me. I don't want to disappoint my family or feel bad about myself or feel like I'm giving up. But realistically, struggling and suffering my way through Lord knows how many more years of school and then not be able to do anything with that degree IS a waste of time.

I guess I'm just feeling a bit lost. I don't know what God wants me to do next. School is just not in my heart. It's not something I would have chosen to give up but if my body is telling me it's making things worse, I can't ignore that. 

What now? I do not know. I know what I have, I know what I am blessed with, I'm just scared at this point. I don't want to get worse. I have to wait until March to find out what my Nuero says. If anyone has any advice or input, I'm all years.

Oh, and Chelsi Christmas, God has created a wonderful human being in you, I love you for always being a text away from an encouraging word and a reminder that God has not forgotten me. You are pretty rad and I love you!

Until I get out of this funk, all I can do is wait for God and whatever He has planned for my life, no matter what that looks like.