Hello, Blog World. Long time, no write. Well. a lot has happened since my last post. Probably one of the biggest would be that I successfully finished my first semester of college. To say that I am relieved would be an understatement. I love heading into a second semester. This will be an opportunity to grow from the mistakes of the past. I may not have done as well as I might have liked to this semester, but I know what I need to do next time. Learning is part of the process, right?
You might also be interested that I got Botox injections this month. Your mind just went to cosmetics, didn't it? No. I did not get work done on my face. I had injections in both my arm and my leg. That would be a total of 4 shots. It's quite different from the Botox that you envision. Most of the time, you see an almost nonexistent thin needle being injected in the face. However, for this procedure, I had to lay down on the table, which later, I found was probably best, because if I had been sitting up, I probably would have fallen over or backwards. They numbed my arm and leg, but also, before hand, asked if I wanted any painkillers. I, having never had this procedure before, was unsure whether I did or not. So I asked. "Do I want painkillers?" The young nurse, trying to be honest, yet not alarming paused. She looked at the other nurse, who seemed older and much more experienced, waiting for an answer. The experienced nurse almost immediately replied, "Yeah. She's gonna want some." So I said, okay and they gave me some. After numbing my left side, we waited for the doctor, who finally came in and explained a little bit. It would take a while for the botox to take effect and then it would take a couple of weeks for it to take full effect. Then we started. They used the biggest needle I have ever seen, and slowly injected the drug into my muscles. They also used an electroshock machine to help it "wake up" the paralyzed muscles. The initial pain of the needle was pretty painful, but the shocks just amplified the pain. It took about half an hour and then I was able to leave, sore and exhausted, but optimistic for the results.
It's been 3 weeks since the procedure, and it's been working extremely well! My hand, which I haven't been able to open for 10 years, now opens with ease. And, my foot, which always used to turn out and under (tripping me on many occasions) has been corrected. I would say the only downsides would be that my hand is somewhat weak, so I can't grasp things and also can't carry things with that hand. I also still have no control over my left ankle, which is a little tough to get around for walking. However, having no pain, hardly any twitching and an open hand makes it an even trade. I'm so looking forward to seeing how much more it will help with the proceeding rounds of Botox. My next round should be in March. I'll be sure to update how it effects me even more.
As for now, this is where I leave you.
Ever yours, Dystoniac
Monday, December 26, 2011
Sunday, September 11, 2011
We Will Always Remember...Mostly
It's September 11th, 2011, exactly 10 years from the fateful day when our country was changed forever. Everyone has something to say about it, updating statuses, blogs, etc. "We will always remember", "I remember I was..." fill in the blanks. So where was I when the news erupted with video of the horror, replaying over and over again, reporting on the chaos ensuing around the nation? The truth is, I don't actually know. I know I had just woken up and came downstairs as my mother was watching the footage over and over again. I know that the story was all anyone talked about for months, and even years after. I know that I was diagnosed exactly 3 months later (December 11). But othere than that, there's nothing. I can't remember anything from before about 12 years old. It's times like these when it's extremely hard because everyone else has some kind of connection to that day, to their past in general. And all I have is bits and pieces, like a skipping CD. All I really have is the present and the future. Of course there are some things more recent than that that I would like to forget, but there's so much that I wish I knew. I wish I could remember my 7th birthday, my 8th birthday, even my 9th birthday. I wish I knew how it felt when I came home from New York after my surgery. I wish that when people who used to know me asked if I remembered them, I didn't have to give a blank stare because there is no recollection whatsoever. It feels sometimes like I have no past. Where did I come from? Where did I start?
What does that leave me with? A whole lot of memories to be made. In 10 years, someone will ask me, where were you on the 10th anniversary of 9/11? And I'll say, I went to church and I stayed at home for the rest of the day. I watched the awful footage for the first time. They didn't realize when they asked what a loaded question it was. In 10 years, I'll have a family of my own, children (probably many) who most likely won't even know of what happened except for what they read in history books. 29. That's my goal.
It makes the future quite exciting. It's my story that I'm writing, but the first couple chapters were ripped out. And the rest is all mine for the taking, the planning, the starting, the experiencing. You've never thought of it that way, have you? No, of course not. Your CD starts at the first song. :)
What does that leave me with? A whole lot of memories to be made. In 10 years, someone will ask me, where were you on the 10th anniversary of 9/11? And I'll say, I went to church and I stayed at home for the rest of the day. I watched the awful footage for the first time. They didn't realize when they asked what a loaded question it was. In 10 years, I'll have a family of my own, children (probably many) who most likely won't even know of what happened except for what they read in history books. 29. That's my goal.
It makes the future quite exciting. It's my story that I'm writing, but the first couple chapters were ripped out. And the rest is all mine for the taking, the planning, the starting, the experiencing. You've never thought of it that way, have you? No, of course not. Your CD starts at the first song. :)
Sunday, August 14, 2011
Eyes Wide Open...
Hey. It's me. I was just taking a little trip down memory lane, listening to Gungor, while trying to suppress whatever twitching I can. I decided to read my old messages on facebook. These are incredibly old messages, dating all the way back to the summer before 9th grade. It's amazing how different I was. I found one that referred to my last grounding I ever had. I can't believe the way my mind worked, so eager for acceptance that I was ready to follow the wrong people down a dark road. I was so incredibly dizzied by myself and my own ego to the point that I was unaware of what was up and down. It's odd to think that I approved of myself. Even that the people around me approved of me. I've been viewing my 9th grade year as one of the best for so long, yet hidden in these messages were what was really going on behind the scenes.
I couldn't believe how whiny and self-pitying I was. Where I am now, looking back, I wish I could have embraced that time. Shortly after that my muscles started worsening and now I wish I could have clapped more, or anything, just to use what I had, but then lost. But, then, hind sight is 20/20. It's so easy to see what the right decision is after the mistake is. Now, all I pray is that I don't make some of those same mistakes again, and spare myself from certain mistakes that I will look at in 4 years, asking myself why. Fortunately, throughout that period of mistakes came one of the best thing that I've ever chosen. I started going to my new church almost 3 years ago. I was a sophomore, and while I was actually forced to leave the church I had known for about 7 years, I soon after learned it was so much better for me. And, while I hate the way it happened, I'm so glad to be where I am. Thank You, God for showing me the life that You wanted for me!
I couldn't believe how whiny and self-pitying I was. Where I am now, looking back, I wish I could have embraced that time. Shortly after that my muscles started worsening and now I wish I could have clapped more, or anything, just to use what I had, but then lost. But, then, hind sight is 20/20. It's so easy to see what the right decision is after the mistake is. Now, all I pray is that I don't make some of those same mistakes again, and spare myself from certain mistakes that I will look at in 4 years, asking myself why. Fortunately, throughout that period of mistakes came one of the best thing that I've ever chosen. I started going to my new church almost 3 years ago. I was a sophomore, and while I was actually forced to leave the church I had known for about 7 years, I soon after learned it was so much better for me. And, while I hate the way it happened, I'm so glad to be where I am. Thank You, God for showing me the life that You wanted for me!
Monday, August 8, 2011
My Game of LIfe
Updates! I went to school today for a meeting. And, by school, I mean college. We haven't started yet and won't for another two weeks (and, trust me, I will update you whenever that ship comes along). But, today, I went in for a meeting with the accommodations office. This is mostly because of physical limitations which could cause some pretty interesting situations. Also because of my ever present memory loss. The crazy thing about my memory is that I just found out recently that I have memory loss. I can't believe that for the last, oh, 9 years I've been going around unaware that I couldn't remember things and that was an issue. The thing is, I knew I couldn't remember anything from before the tumor, but I always thought it was normal; that everyone couldn't remember their childhood. Probably mostly because anytime I would mention not remembering, someone would pull the whole "I can't remember what I had for lunch yesterday" routine and it would make complete sense.
Anyway, college. It's amazing. I remember just waiting and hoping for the day that I would be able to go to college, to do what I wanted to do, and be out of a regular school building all day. Now it's here and I still feel slightly unprepared. Don't we always on that first day of school?
One teacher I had about 4 years ago was so nervous for her first day of school the year after I had been in her class. It was a crazy thought, because I had never really considered teachers to be the type to be afraid of students. But the fear was justified. Young high schoolers can be insane. I know because I was insane with them. I loved that year. It seemed like nothing ever really went wrong. Well, not really, anyway. There were the times that I didn't break at debate tournaments, or the time I almost got stepped on when I was sleeping on the floor in the cafeteria of Lees Summit West High School. It's really the only place to sleep at debate tournaments, and when you get home at midnight and have to be at your high school at 6 in order to debate at 8, you sleep whenever you can.
The point is, whenever that teacher was able to grab onto some sort of familiarity (namely me), it was priceless. Because that's what we crave. Like children, we all long for consistency, a familiar way of life. We know the rules of the game, we know how to "get out of jail free" and we try our hardest to pass go and collect $200. But then, after round 1, the game changes. We have to figure everything out again only to move a couple spaces at a time. Inching slowly, we can establish our surroundings; what's going to happen, what needs to happen, and most of all, how we react to day to day life. Believe it or not, round 2 tends to be what trips me up. The transition may be a little rocky at first, but I know from experience that if you keep rolling the dice, at some point you can get to pass go. Your reward is for your perserverance. It's for every goal that you set out to achieve, and when you achieve it, the sweet taste of victory is so gratifying, much like that $200 from round 1.
So, here I go into an unknown territory with every intention of skipping past the mouse traps, skipped turns and the stalking chutes. And, frankly, the chance of achieving what I set out to do is all the adrenaline I need. So, 2 spaces forward and...
BINGO!!
Anyway, college. It's amazing. I remember just waiting and hoping for the day that I would be able to go to college, to do what I wanted to do, and be out of a regular school building all day. Now it's here and I still feel slightly unprepared. Don't we always on that first day of school?
One teacher I had about 4 years ago was so nervous for her first day of school the year after I had been in her class. It was a crazy thought, because I had never really considered teachers to be the type to be afraid of students. But the fear was justified. Young high schoolers can be insane. I know because I was insane with them. I loved that year. It seemed like nothing ever really went wrong. Well, not really, anyway. There were the times that I didn't break at debate tournaments, or the time I almost got stepped on when I was sleeping on the floor in the cafeteria of Lees Summit West High School. It's really the only place to sleep at debate tournaments, and when you get home at midnight and have to be at your high school at 6 in order to debate at 8, you sleep whenever you can.
The point is, whenever that teacher was able to grab onto some sort of familiarity (namely me), it was priceless. Because that's what we crave. Like children, we all long for consistency, a familiar way of life. We know the rules of the game, we know how to "get out of jail free" and we try our hardest to pass go and collect $200. But then, after round 1, the game changes. We have to figure everything out again only to move a couple spaces at a time. Inching slowly, we can establish our surroundings; what's going to happen, what needs to happen, and most of all, how we react to day to day life. Believe it or not, round 2 tends to be what trips me up. The transition may be a little rocky at first, but I know from experience that if you keep rolling the dice, at some point you can get to pass go. Your reward is for your perserverance. It's for every goal that you set out to achieve, and when you achieve it, the sweet taste of victory is so gratifying, much like that $200 from round 1.
So, here I go into an unknown territory with every intention of skipping past the mouse traps, skipped turns and the stalking chutes. And, frankly, the chance of achieving what I set out to do is all the adrenaline I need. So, 2 spaces forward and...
BINGO!!
Sunday, August 7, 2011
Move is More Profound
So, for those who are reading this (which I'm sure counts all the way up to 1) this is my first time blogging. My first question? What to write? Many people use these blogs to write their life story, or use it as a public diary. Perhaps shout personal opinions, gripe about the economy, or maybe just whatever comes into their head. Now to find where I fit in. Of course, it's been learned from life experience that I, on a regular basis, do not fit in. So, we'll see where I'm lead.
Square 1: My life started when I was twelve. I know many of you (or you one faithful reader) just cocked your head in a very confused fashion and are probably wondering if I've forgotten to take medicine that I don't actually take. But this is true. Because I can't remember anything before that. I have severe memory loss from a brain tumor from my childhood. Yes, I could tell you dates and facts about my life, but I don't remember being there or living there. Most of what I know is just what I've been told.
Square 2: Believe it or not, that's not the only part of my story
I have a muscle disorder called dystonia (hence the title). It's a disorder that effects the muscles making them continually contract or seize up. Fortunately I only have this on my left side. But I still have one of the most severe cases. It's much like Parkinson's and MS. And with cases such as mine, it gets worse over time. Even as I type these words, I'm fighting off ticks and twitching in my left side. Why am I telling you all of this? Because it's part of who I am. It's hard to understand me without knowing about this. This is where it starts, Diaries of a Hidden Dystoniac. Hidden by choice, dystoniac by circumstance. This is where I write about my life, my disorder, my treatments, and something more... my grace.
For by grace you have been saved, through faith, and that not of yourselves; it is the gift of God, not of works, lest anyone should boast. ~Ephesians 2:8-9
It is by grace I have been saved and made a child of God and it is by grace that my life was saved from death. So it is grace that has given me the ability to post this blog. It is grace that allows me to impact others and speak directly to you.
Square 1: My life started when I was twelve. I know many of you (or you one faithful reader) just cocked your head in a very confused fashion and are probably wondering if I've forgotten to take medicine that I don't actually take. But this is true. Because I can't remember anything before that. I have severe memory loss from a brain tumor from my childhood. Yes, I could tell you dates and facts about my life, but I don't remember being there or living there. Most of what I know is just what I've been told.
Square 2: Believe it or not, that's not the only part of my story
I have a muscle disorder called dystonia (hence the title). It's a disorder that effects the muscles making them continually contract or seize up. Fortunately I only have this on my left side. But I still have one of the most severe cases. It's much like Parkinson's and MS. And with cases such as mine, it gets worse over time. Even as I type these words, I'm fighting off ticks and twitching in my left side. Why am I telling you all of this? Because it's part of who I am. It's hard to understand me without knowing about this. This is where it starts, Diaries of a Hidden Dystoniac. Hidden by choice, dystoniac by circumstance. This is where I write about my life, my disorder, my treatments, and something more... my grace.
For by grace you have been saved, through faith, and that not of yourselves; it is the gift of God, not of works, lest anyone should boast. ~Ephesians 2:8-9
It is by grace I have been saved and made a child of God and it is by grace that my life was saved from death. So it is grace that has given me the ability to post this blog. It is grace that allows me to impact others and speak directly to you.
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