Well, just got my laptop back today. My little sister was using it and dropped it, which ripped out the charge cord so violently it broke it. But, all fixed now.
I went to go see my neurologist yesterday. He was talking to me about drug trials to slow the progression of CMT.
The first one is mega dose of vitamin C. 2000 grams a day, I think, but you can do more, since vitamin C is water soluable. The second is Coenzyme Q10, and the third is actually just a much more concentrated version of it.
So I think I'll be trying the Vitamin C one because I already have some in my house and I don't want to go find the others.
Also, did you know that rats can have CMT? Poor rats...
Tuesday, May 18, 2010
Friday, April 30, 2010
Walking is Strangly Awesome
I walked today! Five feet. Then I decided it was far enough and stopped, only to tip over backwards. Oh well. I spent the rest of the day sitting in the exact same spot feeling my feet swell well being surronded by small hyperactive people with long bat-shaped balloons. Two of whom are hemopeliacs, and one that I'm not sure is human. So, you know, lots of fun. Then the adults gave them chocolate cake, which did NOT help the hyperactivness. It was my sisters birthday today, hence the cake.
Wednesday, April 28, 2010
Walking Casts and Sadistic Nurses
Well, I finally got my walking casts for my two broken feet! A few days under six weeks of not being able to walk, and now I have the go ahead from my very nice British doctor that I dislike very much for recommending the damn surgery in the first place.
However, have you ever not done something for six weeks? When you are finally allowed to do it, it seems like you cant really. And being told constantly for six weeks not to, for any reason, well, that's makes it harder.
So I've been trying to get myself to stand up, which I still cant do completely. I can kinda partly stand up, holding onto the arm rests on my wheelchair and pushing myself up. I can stay that way for maybe ten seconds before I give up and fall back down.
Here's the thing; I have CMT, and part of it is that I cant build muscle in my legs, and maybe my arms? I'm not sure about the arms, but the point is, I don't know how much muscle I lost in my legs. If I lost too much, that could be a big part of why I cant stand up. But, I'm more of a glass-half-empty person.
Well, I'll keep trying. But I am never ever ever having surgery for any non-life-threatening reason ever. EVER.
As for the getting my feet into walking casts, that made my Most Painful Things list, which is something like;
1. Waking up from surgery when they hadn't given me any pain killers yet.
2. Getting my feet into the walking casts.
3. Getting hit by a bike.
4. Breaking my toe.
5. Being stung by a wasp. (I had been stung by tons before, but this one hurt like hell)
Yeah. I like lists.. Looking at this list I find it odd that the fractured rib didn't make the top 5. But those hurt more.
I have to go help my mom blow up balloons for my sisters birthday tomorrow.
However, have you ever not done something for six weeks? When you are finally allowed to do it, it seems like you cant really. And being told constantly for six weeks not to, for any reason, well, that's makes it harder.
So I've been trying to get myself to stand up, which I still cant do completely. I can kinda partly stand up, holding onto the arm rests on my wheelchair and pushing myself up. I can stay that way for maybe ten seconds before I give up and fall back down.
Here's the thing; I have CMT, and part of it is that I cant build muscle in my legs, and maybe my arms? I'm not sure about the arms, but the point is, I don't know how much muscle I lost in my legs. If I lost too much, that could be a big part of why I cant stand up. But, I'm more of a glass-half-empty person.
Well, I'll keep trying. But I am never ever ever having surgery for any non-life-threatening reason ever. EVER.
As for the getting my feet into walking casts, that made my Most Painful Things list, which is something like;
1. Waking up from surgery when they hadn't given me any pain killers yet.
2. Getting my feet into the walking casts.
3. Getting hit by a bike.
4. Breaking my toe.
5. Being stung by a wasp. (I had been stung by tons before, but this one hurt like hell)
Yeah. I like lists.. Looking at this list I find it odd that the fractured rib didn't make the top 5. But those hurt more.
I have to go help my mom blow up balloons for my sisters birthday tomorrow.
Tuesday, April 20, 2010
Westboro Baptist Church
Westboro Baptist Church makes me want the world to reconsider freedom of speech.
Which is majour, since I reallt value it. But, I'm stuch at home with two broken feet, so i have some time to read up on these sorts of things.
And if anyone has seen or read anything of there's, you'll see what I'm talking about. They go around preching intolerance, literally. They actually say, dont tolerate any of these things.
They once protested a hardwear store because they sold a product made in Swedden, a vacuum I think, and they dont like Sweden because there is a gay person that the Swedish havn't lynched.
That is when you know not to drink any cool-aid they give you.
But anyways, I went to my doctor today, to get my feet checked oout, get my casts changed.
When they took off the casts, peices of my scabed skin came off with it. It was ctually kinda funny. I was just watching that, and the doctor just looked at me, I guess waiting for me to feel the pain or freak out about how gross it was, but I simply looked at it, and said "Okay, a chunk of brownish red skin just got pulled out of my foot. That is so very very gross." and then I took out my camera and took a picture.
But, as usual, I am writting this late at night, and I'm tired. So, since I didn't sleep at all last night because I was busy writting, and sleep, I'm told, is very important, and I have no more episodes of Greys Anatomy to watch, I'm going to sleep.
So, Goodnight, or as my mother says and I say a lot, Laila Tov. (Thats hebrew, I think, for goodnight. My mom liveed in Isriel for a while.)
Which is majour, since I reallt value it. But, I'm stuch at home with two broken feet, so i have some time to read up on these sorts of things.
And if anyone has seen or read anything of there's, you'll see what I'm talking about. They go around preching intolerance, literally. They actually say, dont tolerate any of these things.
They once protested a hardwear store because they sold a product made in Swedden, a vacuum I think, and they dont like Sweden because there is a gay person that the Swedish havn't lynched.
That is when you know not to drink any cool-aid they give you.
But anyways, I went to my doctor today, to get my feet checked oout, get my casts changed.
When they took off the casts, peices of my scabed skin came off with it. It was ctually kinda funny. I was just watching that, and the doctor just looked at me, I guess waiting for me to feel the pain or freak out about how gross it was, but I simply looked at it, and said "Okay, a chunk of brownish red skin just got pulled out of my foot. That is so very very gross." and then I took out my camera and took a picture.
But, as usual, I am writting this late at night, and I'm tired. So, since I didn't sleep at all last night because I was busy writting, and sleep, I'm told, is very important, and I have no more episodes of Greys Anatomy to watch, I'm going to sleep.
So, Goodnight, or as my mother says and I say a lot, Laila Tov. (Thats hebrew, I think, for goodnight. My mom liveed in Isriel for a while.)
Con artist uncles and sleepless nights
Well, its 4:30am, I have to be at the hospital to see my surgeon at 9:45am, but I’m not tired. So instead I’m writing this, which I don’t think anyone is reading. Oh well. I write for myself, as cheesy as that sounds. Like a band saying they don’t care if they don’t make it, although some bands really don’t care.
But most bands that say that are lying, which is okay. I’m not religious, and I don’t believe in a giant man in the sky who will punish you for lying, because that would not explain how so many cons never get caught or even pursued. And if you think that isn’t true, I know of one.
In case, if anyone is actually reading this, you didn`t read the title of this post, that con would be my uncle. He is incapable of not making people trust him, so they give him money. Then he takes it and they realize that he really is a con, and they stop liking him, and they join my mothers side.
His own sister. Years ago, he lived in the house her and my step dad used to live in, but once they moved because it wasn`t big enough for me and my little sister and them, they rented it out to him. Well, his friend fell asleep with a lit cigarette, and burned the damn thing down. And he took money from us. Lets just say my mom is not fond of him.
I don't know why this came up. I`m just not sleeping, actually waiting for five because at five I can watch another episode of the third season of Gray`s Anatomy.
What a stupid show. Actually, you know what, I simply saw its stupid because I feel stupid admitting to people that I watch something like that. Something normalish for me to watch. But, its not stupid. It is awesome.
I have a doctors appointment tomorrow. At 9:45am. Ì will most likely be very tired, and that might help, because at the appointment they will take off the casts I have on both feet, will wash and clean the cuts they made on my feet in surgery, and check and the pieces of metal sticking out of my feet. It will hurt. And being very very tired may help that. I will also take my iPod.
I know it will hurt, not just because I always expect worst case scenario, which I do, but because they insist on doing this EVERY WEEK. Ugh. I hate using caps lock but I don't know any other way to express raising my voice. But I`m not yelling, simply raising my voice.
But anyway, I am tired. But I`m not going to sleep, so not goodnight, to the posably nonexsistant people.
But most bands that say that are lying, which is okay. I’m not religious, and I don’t believe in a giant man in the sky who will punish you for lying, because that would not explain how so many cons never get caught or even pursued. And if you think that isn’t true, I know of one.
In case, if anyone is actually reading this, you didn`t read the title of this post, that con would be my uncle. He is incapable of not making people trust him, so they give him money. Then he takes it and they realize that he really is a con, and they stop liking him, and they join my mothers side.
His own sister. Years ago, he lived in the house her and my step dad used to live in, but once they moved because it wasn`t big enough for me and my little sister and them, they rented it out to him. Well, his friend fell asleep with a lit cigarette, and burned the damn thing down. And he took money from us. Lets just say my mom is not fond of him.
I don't know why this came up. I`m just not sleeping, actually waiting for five because at five I can watch another episode of the third season of Gray`s Anatomy.
What a stupid show. Actually, you know what, I simply saw its stupid because I feel stupid admitting to people that I watch something like that. Something normalish for me to watch. But, its not stupid. It is awesome.
I have a doctors appointment tomorrow. At 9:45am. Ì will most likely be very tired, and that might help, because at the appointment they will take off the casts I have on both feet, will wash and clean the cuts they made on my feet in surgery, and check and the pieces of metal sticking out of my feet. It will hurt. And being very very tired may help that. I will also take my iPod.
I know it will hurt, not just because I always expect worst case scenario, which I do, but because they insist on doing this EVERY WEEK. Ugh. I hate using caps lock but I don't know any other way to express raising my voice. But I`m not yelling, simply raising my voice.
But anyway, I am tired. But I`m not going to sleep, so not goodnight, to the posably nonexsistant people.
Sunday, March 7, 2010
Alice in Wonderland
Went to go see the new Alice in Wonderland movie today. I love the Alice in Wonderland stories. The best adaption I've ever seen is the Alice syfy mini series.
Its awesome. But anyway, I went to the movie with my friend Sarah's dad and brother. And her, of course.
Her family is rich. I mean, seriously loaded. I don't see the money that much because I mostly see them at my cabin, which is on an island that has no electricity or all that many people, so there's not really a lot of stuff to spend money on. But today I tried to pay for my ticket, but her dad wouldn't take it. Then he bought me popcorn and a drink. Awesome. If you know any non-stuck up rich people, become friends with them. Just saying.
But I'm tired. Gonna go sleep.
Its awesome. But anyway, I went to the movie with my friend Sarah's dad and brother. And her, of course.
Her family is rich. I mean, seriously loaded. I don't see the money that much because I mostly see them at my cabin, which is on an island that has no electricity or all that many people, so there's not really a lot of stuff to spend money on. But today I tried to pay for my ticket, but her dad wouldn't take it. Then he bought me popcorn and a drink. Awesome. If you know any non-stuck up rich people, become friends with them. Just saying.
But I'm tired. Gonna go sleep.
Saturday, March 6, 2010
Freaking out a bit.
Okay, so my surgery is in, like, eleven days, and I'm freaking out a tiny bit. I'm lloking at my feet, and as much as I hate them, I'm thinking, this surgery is going to put me through all this pain and inconvinence and weeks of not walking, to do what? Make my feet look more normal?
The only reason I'm doing this stupid thing is because my mom wanted me to, so I thought, why not?
Well, why not. I can think of a few reasons why not. Well, for one, I'll have two broken feet for 6-8 weeks. Not my idea of fun.
I'll also be giving up one of the freakiest things about me, my deformed feet.
Its weird, yes, I know. But I'm a teenager who prides myself on being different.
But, I'm kinda looking around and just going, how the hell will I be able to get around in a wheelchair in thiss house? Its very messy.
Oh well. Geuss I'll have to figure that out.
The only reason I'm doing this stupid thing is because my mom wanted me to, so I thought, why not?
Well, why not. I can think of a few reasons why not. Well, for one, I'll have two broken feet for 6-8 weeks. Not my idea of fun.
I'll also be giving up one of the freakiest things about me, my deformed feet.
Its weird, yes, I know. But I'm a teenager who prides myself on being different.
But, I'm kinda looking around and just going, how the hell will I be able to get around in a wheelchair in thiss house? Its very messy.
Oh well. Geuss I'll have to figure that out.
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