Saturday, December 4, 2010

Attack of the midgets!!

My little sisters birthday party is today. In the past, her party's have caused me to hide in closets, have to run around my neighbourhood chasing after kids wearing princess dresses, and generally, be terrified for my life.
Hey, YOU try jamming roughly 13 little kids in a smallish house and feeding them large amounts of sugar. You'd be terrified for your life too.
This year, we're going bowling.
Who thought that would be a good idea???? These kids with bowling balls?!?!?!
I'm dead.
This may be my last post ever.
Goodbye.

Thursday, November 25, 2010

Random Pain

Hello, random people who may or may not exist who read my blog-type-thing!
My foot hurts like someone took a hammer to it!
No, seriously. I can't walk on it, I can't move my toes, or my ankle, or touch it in anyway or it feels almost as bad as it did waking up from surgery, except instead of my entire foot (and the other one too), its like this line of incredible pain. Freaking fricking fnicking hell.
Oh, also, I recently made a round trip visiting all my doctors trying to get them to prescribe my pain killers, as I am in PAIN. This is basically how it went;
Me: Hey, Dr. Kahavavitch, I'm dying of pain. Can you prescribe me something that would help.
Dr. K: Uhhh, take a advil.
-Go to next doctor-
Me: Hey, Dr. Jellicoe, you messed up my feet and now I'm in MORE PAIN THAN BEFORE!! Want to give me something for that?
Dr (actually, I doubt that he's an actual doctor). J: Well, in 10% of patient that have this surgery, we see recurring, intense pain after they are all healed. We don't know why. I recommend you take advil.
-Storms off to next doctor, after hitting Jellicoe over the head with a tuna fish-
Me: Hey, Dr. Skulsky, you're a really nice doctor who is young and oddly attractive, I'm in pain. Pain killers?
Dr. S: Advil should fix that.
-hits myself with tuna fish, go's to my next doctor-
Me: Dr. McPherson, you're very old and I think you have Alzheimer's. Can you prescribe me pain killers?
Dr. McP: Uhhhh... who are you?
Me: I'm the person in pain.
Dr. McP: Oh! Advils good for that.
-facepalms, goes to the next doctor-
Me: Hi, Dr. Lindsay. Haven't seen you in a while.
Dr. Lindsay: Thats because I refereed you off to a bunch of specialty doctors.
Me: Who happen to me idiots. I'm in freaking pain! And they want me to take ADVIL!!!
Dr. Lindsay: Oh, dear. Well, I'll prescribe you some T3's.
Me: You are officially the only sane doctor in Winnipeg.

That may not be the actual script, but you get the gist of it is.
Anyways, so I got pain killers. Which are doing nothing for my dying foot, but for my other pain it really helps. Oh, and she refereed me to the pain clinic! I knew I liked that woman.

Saturday, November 13, 2010

Holy F***

My sister is hysterical. She was attacked with a machette, she was hit over the head. The police came to my house because they were in the area and when her and her friends saw her, they started running. The police almost arrested them, then realized they had been attacked. There were eight police officers in my house. I just sat beside my thirteen year old sister as she gave a statment to the police.
Holy effing hell. I'm shaking so much. Its three am so none of my well behaved friends are awake. So I'm posting this here. I think my sister is in shock.

Thursday, October 28, 2010

Broken laptops and Halloween

So, my laptop broke. That's why I haven't been on here forever.
I'm a writer (in the way that I write... I'm not published or anything), and not being able to have a way to write... I lost my mind. Seriously, I did. If my laptop had been at the fixing place one more day I would of ended up in the In Patient wing of the Phych Health wing instead of the Out Patient wing.
Oh yeah, my phychiatrist went on maternity leave, and for some reason she advised that I be given... two phych people in her absence.
I know. Who the hell has TWO separate phych people?
Uh... no offence if you do. I do too, after all.
ANYway.

Halloween is coming! Its truly my favorite holiday. What other day do you get to dress up like anything or anyone you want and go around demanding candy from your neighbours?
Over the past week, I've had a stomach flu so I was put in charge of all the Halloween stuff, eg. Costumes, cookies, decorating, and organizing a trick or treating group.
Yes, I'm a little old to be trick or treating, and I actually haven't gone for the past two years, but I was talking with an old friend who's nineteen, and she talked me into it.
So, Halloween night, me, my friends Sarah, Paige, and Gen, Gen's friend Alex, my little sister, and my little sisters friend Sidney (who is the coolest kid ever, honestly) will be running around dressed as assorted things (I'm the Mad Hatter, my sister is this goth ragdoll thing, and Gen's... a Superman pirate with ninja skills who glows in the dark. Yeah. The others wont tell me what they're being)
So, it should be fun. I wont be able to walk for days after, and I'm kinda relying on a mix of a sugar high and pain killers to get me through the night, but... still. It'll be fun.

Sunday, September 19, 2010

I'm not even sixteen yet.
I can't walk properly.
I can't stand without shifting my weight back and forth because my ankles are too weak.
I spend every second of my life in pain.
I have more doctors than friends.
I've been high; but not off any drugs that most people my age are using. No. I've been high off pain medication that I take because I'm in pain.
I'm afraid to even consider starting driving because my legs twitch violently, which could be a problem what with the using your feet for brakes and speed.
I can' wear skinny jean because they don't fit over my leg braces.
I'm too tired most days to do anything, so I never leave my house except for school, doctors, and grocerys.
The constant pain doesn't make me very nice. So kids at school don't exactly go out of their way to speak to me.
Besides, I don't even know how to talk to people.
I'm a teenager. But I'm not. My insides arre old. My skin is young.
And I need to get new shower curtains.

Thursday, September 16, 2010

So....

So... What to say? I sounded a bit crazy in that last post. Sorry. Nothing bad happened that directly effected me. I'm sure something bad happened somewhere.
I've been back at school for a week now, and can I say OW. So many stairs, so little time to climb them. I only have classes on the top floor and in the basement. And I can't walk down stairs properly because my ankles don't bend forward since the surgery.
But besides the stairs thing, and the pain thing, its been good. My sewing teacher is cool, and my English teacher actually spent an entire class having us see who could fold and throw a paper airplane the farthest. I got third place, best out of all the girls. Yes, I know. Pointless skill.
Oh, and I got a new therapist person. Actually, my old phychiatrist had a baby and went on mat. leave, and now I have a therapist and a phychiatrist. As far as I can tell, the therapist just calls in the other guy to write pharscriptions.
He's nice, the therapist. His name is Peter Mary. I meant to ask him if his middle name is Paul. I told my friend that and she didn't get it. Before her time, I guess. Before my time too, really, but I know a lot of stuff from before my time.
Anyways, we talked about elephants. And my religion, because he didn't know a lot about it and he wanted to understand. He also apologized in advance if he says something offending because he doesn't know or understand something about it. I told him I don't get bothered by people offending me, only when they offend people I care about. Then I threaten them or yell or actually hurt them.
I have anger issues.
I think its cause I was always so shy as a kid, and I just kinda stuffed everything down deeper and deeper and then in grade six I made friends with this girl and she just somehow made me stop stuffing and actually act on my anger, but I never learned how to properly express my anger so it comes out about the oddest things and in violent ways.
Like last week, I wouldn't make my sister pasta so she called me a b****. I started grabbing things and throwing them at her as hard as I could. ie a magnetic paper holder on the fridge, a binder, a cutting board, a butter knife, a shirt, a toothbrush...
I don't even know why. I don't even remember much. But I know I ended up in my room, a cut on my face and I had been writ ting on my bedroom wall, which isn't that weird because its kinda what I do, graffiti my wall. My mom says its okay because you can actually see the stud things through the wall it needs new paint s bad and I'm a good artist so it makes it look better. She said that not me. I'm not actually that good.
On my walls I have;
West wall- Boys are like slinkys, useless, but fun to watch fall down stairs. Every rose has thorns. To put it nicely, I hope you choke. My dads phone number from when he was in Texas. A list of my favorite books. When I got really mad at my step dad Iwrote on my wall in runes about why I was mad. a drawing of a rose. We're all ad here. The lyrics to Thinking of You by Katy Perry. A bunch of old stickers. A ceramic fairy I named Fred. A origami valentine the exchange student gave me for Valentines day after I have her a valentine written in Japanese.
South Wall- under my window: Do not close window if open. You cannot soar like an eagle on the wings of a wren. You are a china shop I am a bull, you are a good mean, I am full.
East wall- a giant angel... well, less of an angel, more of a girl with wings. Too much writing to put down.
North wall- that's my closet. I have some Latin on my doors, and the entire "Anyone lived ina pretty how town" by ee commings.
Okay. Oh, and a twilight poster with 3D glasses taped to Bella's face.
Okay, so, I'm going to sleep now. Night!

Wednesday, September 8, 2010

Bad Feeling

I have a really bad feeling. A really really bad feeling.
It could be because I'm going back to school this week or the next for the first time since my surgery.
It could be because well everyone else is trying to put my life back together, I feel like all they're doing to taping a broken skylight back together. Soon enough, its gonna rain and its going to break again, falling all over you.
It could be because my best friend's symptoms seem to be getting worse and worse every day, and all she can think about is that she needs to cancel her MRI because she's going to have to miss one Pre-Cal class for it.
It could be because my mom seems to be heading towards the nervous breakdown she nearly had last year.
It could be because I woke up this morning to my stepdad telling my sister, "How dare you threaten me with a knife!" I go to the kitchen to see my sister holding a butter knife with jam on it because she was making herself toast with jam when he came in to talk to her.
It could be because I'm in so much pain I can barely walk.

It could be any one of these reasons, but I still feel like something is going to happen. Its felt like the world has been holding its breath just waiting.
God, I sound insane I bet. But I swear, something is wrong.

Tuesday, August 31, 2010

Playing Suicide Hotline

Why do I spend my nights this way?
I just phoned a girl I've never met, never spoken to in my life, to convince her not to kill herself.
You're probably confused. Let me explain.
Okay. So, I'm more or less a shut in. I don't leave my house. Thinking right now, I haven't been outside in over a week. So I don't have many friends, but the few friends I have I don't know their friends.
My best friend I've ever had has a friend going through depression issues. Tonight, she was talking to her and she started telling my friend that she didn't see the point of life anymore.
Then she went offline and wouldn't answer texts.
My friend has medical issues triggered by stress. When she gets stressed, she can get pretty sick. So I offered to phone her friend.
My friend didn't have her number. So I went into my phone book and tracked it down using only her last name and street.
And then I called her, and stopped her from killing herself.
It was really weird. I was looking on all these suicide websites listing all the reasons they said on why you shouldn't kill yourself, then I'm like, eff this. So I just started talking to her.
And, not to sound too egotistical, I SAVED HER LIFE.
And then we hung up after I gave her my number and told her to call or text or message or add me anytime she wanted.
And then I went to my kitchen and made pizza in the middle of the night.
Then I came on here.
Also, is anyone still reading this? Because I don't think you are.
So I'm bragging about saving someones life to no one. Oh well.

Also, I'm aware that I could have simply delayed her suicide a day. But she refuses to go back to therapy, and its weird for her to talk to people when she has to see them later, so I'm hoping she'll actually use me as her suicide hotline.
Oh, she just added me on Facebook. That's good.

Sunday, August 29, 2010

Ouch.

Well... I'm back. And I can't walk.
See, I was right about the lots of standing thing at the wedding and reception and my shoes were terrible. Like my clothing that I wore all week, they looked nice, actually really nice, but were horrible to wear. But I wanted to look nice for my dads family.
See, my closet is full of graphic tee's, ripped jeans covered in pen, and I wear crocs most days. But my dad wanted me to look nice, so I went to Value Village with my friends and they picked out nice clothing for me. (I didn't want to spend a fortune getting new clothing that I'll only wear once).
Yeah. And then after I left Medicine Hat, me and my dad went to go stay with my Amma (grandmother) and mom and little sister, who were there visiting.
This was great fun for my dad, who is divorced from my mom, so he spend two days living with his ex-wife, and ex-mother-in-law.
We went to the Calgary Zoo one day, and the Tyrelle Museum the next.
OW.
So now I'm going to go find a heating pad to wrap around my legs, take a sleeping pill, and sleep.
ps. Me and my mom have been talking, and we think its best if I start taking actual pain medication. To anyone with CMT, is there anything that you would recommend? My mom thinks Tylenol 3's are our best bet, but when I had surgery I had to take three before anything happened. My doctor would give me morphine if I asked for it, literally, so don't worry if what you would suggest is a bit powerful. It did take them twice the amount of knock out gas to make me sleep in surgery.

Tuesday, August 17, 2010

Medicine Hat

So, I'm going to Medicine Hat. My cousin is getting married. I have to wear really painful shoes and I'm guessing I'll be standing up a lot, so I can't imagine I'll have much fun.

Meh. I just had to go chase away stoned and/or drunk teenagers from my front yard where they were screaming my sisters name at the top of their lungs. Did I mention its like 3am? Ya. I opened my front door and yelled that my sister wasn't home and to go the f*** away. I never swear except to my sisters friends, because otherwise they don't take me seriously.

Anyways. I'm going to Medicine Hat. It's going to suck, as far as I can tell. My dad has been telling stories about how sick I was and how much pain I was in and whatever, so everyone will be asking me how I am and stuff.
The thing is, I like telling people about when I was in the hospital. Its a good story.

I got to the hospital, and they took me to the OR, and they tried to put me to sleep. The doctors and nurses were trying to make me feel safe or whatever, and they were talking about how the gas mask smells like Canadian Tire, so I decided to tell them I got mt favorite pair of shoes there.
That made them think the drugs were working, I guess.
After a while, I was still awake. It took them forever to make me go under.
When I woke up, they hadn't given me any pain meds yet.
I woke up with three breaks in each foot. My tendons had been cut and moved.
It was unimaginable pain.
The nurse gave me eight shots of morphine before she finally called the doctor to ask him to give me a shot of ketemine.
That made me pass out.
I woke up not long after, and I was finally hooked up to an IV, and was getting Morphine and Ketemine and I was still in pain but it wasn't unbearable.
The ketemine made me hallucinate. For some reason I started seeing characters from the tv show Heroes in my hospital room.
I kept talking to them, with confused the actual people in the room.
And I kept lifting up my right arm and holding it in front of me.
I was like that for three days. I didn't eat or drink or move.
I finally woke up, and I realized I must have gone through withdrawal from caffeine, which I was happy about.
Then my mom passed me a coke, because she wanted me to drink something.
And she brought me pizza, and Asian food, and like a whole bunch of awesome takeout food that we never get.
And she choose then to get it, when I couldn't eat.
Sigh.

See? I enjoy telling that story. I like that story. Answering 'How are you? Are you feeling okay?'
Not so much.

Wednesday, August 4, 2010

Worse?

So, CMT is a genetic thing. You probably already know that. I got my CMT from my dad.
My dad has really bad CMT, like, he can't move his toes, his feet dont look like feet anymore, the only thing left on the bottom of his legs is skin and bone. The muscle is long gone. He cut off his thumb last summer and he hardly felt it because the nerve endings are dead.
He went to see my nerologist last week.
My nerologist says I have worse CMT than he does.
I was freaking out when my dad told my he said that, until I though, 'Oh, I'm 15, my dads 55, he must meen compared to age.' So I asked my dad if thats what he ment, and my dad said no.
I'm worse off than my dad.
I told my mom Dr. Skulsky (my nerologist) said that, and she just nodded and said she already knew that.
I seriously didn't know I was this bad.
I mean, I knew I was bad. I can barly walk like 50% of the time. I twist my ankles every day, sprain them twice a month. My hand tremors are like earthquakes. Somedays I'm in so much pain I just take sleeping pills and sleep through it.
But I thought, 'Look at my dad. I'm not as bad off as he is. So don't complain.'
But I am as bad off as he is.
This cant be good.

Wednesday, July 28, 2010

One Moment

If you could, is there a moment you would go back in your life and change? There probably is. Everyone has a moment when they wish they had done something different, said something different.
I know the exact moment I would go back to.
I would go and back and study my grade nine math test.
Yeah, I know. A math test in grade nine? Really? Not even an exam?
But you know what would have happened if I studied?
I would have been ready for my math test. So I wouldn't have been so distraced that morning that I didn't notice my cat. So I wouuldn't have tripped over him. So I wouldn't have sprained my ankle. So I wouldn't have missed school that day.
And then the next.
And then the next.
And the next.
And on and on it went, until one day I found myself unable to leave my basement, nevermind my house, hadn't seen anyone but my parents, sisters, and two of my friends in months.
Sudenly, it was June, and I hadn't been to school since that day I hurt my ankle in Febuary.
My life has been like that since then. A year and a half later.
A lot of the time I'm unable to leave my home because of my physical pain.
When the physical pain isn't too bad, my phycalogical pain stops me. Anxiety attacks and OCD and paranoia.
Last week I spent 27 hours awake without leaving my room and taped newpaper over my windows to block out the light and baracaded my door. I didn't come out until my mom called a friend of mine and she came over and stood under my window and talked me into coming out.
I'm worried. I don't know what my life is turning into. The group of people I went to school with for ten years are going into grade eleven, and I'm not done grade nine. And how am I supposed to go to school to finish it when I can't leave my house?

Bah. Whatever.

Monday, July 12, 2010

Walking... And I just noticed how many of my post titles start with 'walking'

Hey! Guess what?
I'm walking!
Yes, thats right. Walking. Without crutches, canes, or walkers. Today two of my friends came over and I walked my dog to the park with them. Its actually the feild and playground behind my elementary school, and its only a block away from my house, but still.
We sat on a bench and watched children play, and we remembered times from when we went there. A group of guys I went to school with were sitting behind the generator and when they saw us they came over and were amazed about my hair (it was to my hips for years, and for my surgery I cut it about an inch from my scalp), and wanted to know about my surgery. Which was weird, since I never really spoke to them all that much, but not weird since we were a really small school and we were all together for ten years, and I was always the quiet small girl that was constantly hurting myself and never had real good health, so for some reason everyone would freak out and protect me.
We were a weird group of kids.
I miss it.
Anyways, I'm walking again. Everyone is happy. Things are good. Well, better.
I shall leave it at that, because I had a good day and I'm not going to ruin it by thinking of bad things.
So.

Tuesday, July 6, 2010

Walking and Pools... and Brothers

So, I'm walking! With crutches, and every night my ankles are twice their normal size, but I'm still walking!
Its really weird. I feel really tall, because I haven't been above three feet for the past three months, and now I'm walking around at over five feet. Only three inches above five feet, but still.
My surgeon said water would help, so now I have a pool in my back yard. Above ground, and awesome. I am in love with it. I just hold on to one of those floating blue boards that you can glide on and walk around. The water goes to about half way up my stomach, so it holds me up enough that I can walk with just that.

So life is really good. Its summer, so my friend (really the only one I have left) isn't busy with school or anything, so I've seen her everyday for the past week. I'm walking again. My grandmother is in town. My annoying sister is in BC for a whole month, so none of her incredibly rude friends are hanging around my house eating our food and drinking my Coke. My littlest sister is being really happy and nice again, and her allergies are under control. My cat is back to normal.
And my long-lost brother has resurfaced.
Yes. My dad had a son when he was 18. He was put up for adoption. He just found my dad. So, you know, yay, I guess.
I hope.

Wednesday, June 30, 2010

Physiotherapy and Teenage parenthood

So, when my surgeon took off my casts for good, he told me that I wouldn't need physiotherapy, which struck me as sort of odd since I had forgotten how to walk and all.
My dad was also confused by this, so he went by the hospital and booked an appointment with the physiotherapists without asking me or my mom (my parents have been divorced since I was a baby. They are actually still really good friends, like they still talk and get along).
So now I have to go to physio.
I don't really want to. But whatever. I'll go.

In other news, a friend of mine's child was born one month ago today. Its pretty weird to think about that, since a year ago she was sitting behind me in grade nine art class.
Yes. She is 16. And has a child.
I don't know what I think about that. She's raising it alone, living with her dad.

It makes me feel less sorry for myself. I mean, a baby is more work than having CMT. Both are pretty perminate, though.

Sunday, June 27, 2010

Duct Tape Solves Everything

Ever heard the saying 'If duct tape can't fix it, your'e scwreded?'. I think I agree. Because my laptop broke, and I fixed it with duct tape. I mean, I now have duct tape wrapped around my laptop, but it works. So duct tape does fix everything.
Except the things that I really need fixed.
Like my feet, which can barely hold my weight, even though I only weigh like 95 pounds.
Like my balance, which currently doesn't exsist.
Like my sister, who is in serious shit.
Like my mom, who has two different types of arthritis.
Like my stepdad, who is in chronic pain and also on the waiting list for pharscription pain medication addiction treatment.
Like my dad, who more or less just quit the job he's had for over 10 years, and is pretty screwed since his truck is broken down in a different city and he's losing hundreds, thousands of dollars on it.
Like my cat, for god's sake, who disapeared for 24 hours and came back terrified and covered in brusies.
Like the fact that no one in my imediate family has a job, and my mom just ran out of unemployment insurance, and my stepdad just got kicked off Workers Comp (I seriously am not surprised people keep shooting them and blowing them up).

Add that all together, and I guess its not so shocking that I woke up today and didn't move for the entire day. I just lay there and considered going back to sleep, but never did.

And now I'm conserned about my freaking mental health.

Oh yeah, and my best friend has voices in her head telling her to do things.

Maybe I ought to buy some more duct tape?

Thursday, June 17, 2010

Shoes and Standing

I stood up. For half a second. Then I fell over. Now my feet hurt.
Yet another thing that's taking longer than the doctors said it would.
I have come to the decision my doctor is stupid. No offense to him.
But seriously. Half the things that come out of his mouth turn out to be wrong. Plus, now that I have my casts off and I'm looking at my feet, I think he moved the tendoin in the wrong one. Seriously.

On the upside, he was also wrong about my feet getting bigger after the surgery. Because I tried on an old pair of shoes, and my feet are still the same size, which, depending on the brand of shoes, is anywhere from size 3 to 5. I like having small feet.
Also, I don't need new shoes, which is nice. I could use more shoes (I have a pair of crocs, a pair of army boots, and a pair of flipflops), but I don't need them.
So thats good.

...I'm gonna try and stand up again.

Wednesday, June 9, 2010

Doctors and Depression

I went to my surgeon today, with no idea what he was going to do. People kept insisting that I must be getting my casts off now, since its been three months.
I doubted it. Everything about this damn thing has taken longer then the doctors told us.
It took me longer to be put to sleep for the surgery. It took me longer to be discharged from the hospital. It took me longer to kill off the infection I got. It took me longer to be able to get walking casts. It took me longer to actually use the walking casts. I figured it would be unlikly to be able to go home without any casts on.

But guess what! I was wrong. I no longer have any casts on. I don't have to go to my surgeon for months.
And now I'm depressed. Why? Why why why? Why does it make me depressed? I should be happy. Everyone else is happy. Or at least everyone is acting happy, and those that I texted used excamation points.
I'm hiding in my room now, because if I'm arounf people I'm expected to smile and be happy. And as good as I am at faking a smile, I can't right now.
I can't make myself put any weight on my feet. Not at this point. The doctor says I should be walking without crutches in two weeks at the most, but I doubt it. How can I walk if I can't put pressure on my feet?

Whatever. I'm just down today. It probably has nothing to do with my feet. More likly it has to do that my living room is full of things to put in silent auction prizes for a benefet for a old family friend about to die of brain/lung cancer. That and I only got three hours of sleep last night.
I'm going to go watch some of my Heroes on DVD. For some reason people running around trying to save the world (again and again... and again... and again) makes me feel better.

Thursday, June 3, 2010

Doctors

Doctors. I have too many of them for someone my age. And I think my poor health is catching. The only friend I really have had gone to the doctor twice in five years when I started- well, I was gonna say 'hanging out with her', but really, its more like talking to her (even tho we had gone to the same school for eight years. And it wasn't a big school). Now she go's and see's a doctor every month, it seems, and now her doctor has sent her to a neurologist, for reasons that are very scary to me. Mostly because my grandmother listed them when she was telling me the symptoms of a brain tumor (yes, that is the type of conversation I have with my grandmother, who, by the way, is probably a narrsisist. Or a sociopath. No joke).
Anyways, she's going to a Neuroligist, so I was telling her mine is great, and she asked me how many doctors I actuslly had. Hence, another list.
-Dr. Kahanivitch, the doctor I go to when I'm sick. He's actually a horrible doctor (he give's away patient information, phone's in pharscriptions for pain medician without seeing the patient, and stuff like that)
-Dr. Lindsay, the doctor I go to when I need refills on my medication (Gabapenton, Prozac [for my mild OCD], and sleeping pills which I don't know the name of)
-Dr. Phearson (or something like that), my Orthopedic person.
-Dr. Skulsky, my awesome neuroligist. I was his first patient, wwhich might freak some people out, but I like it.
-Dr... her name escapes me, but she's a genetisist.
-Dr. Jellicoe, the surgeon I might hurt if it turns out he made my feet different sizes.
-Dr. Sam, who is a phyciatrist. She's nice. I get to talk about whatever, which I used to do with my dad's exgirlfriend, but, you know, she's ex now. Mostly because she stopped taking her pills and lost her mind. I kinda hope she started taking them again, but whatever. I mostly use Dr. Sam to complain about my stepdad, who is a better person than a lot of parents out there, but a lot worse also.

Anyways. I think I'm suffering from Grey's Anatomy withdrawl. My dad brought me the fourth season on DVD, and I watched it in two days, then went back and watched the first three seasons again. Now I'm done that. So I'm using my doctors instead. Ahhh.
Also, anyone see the Grey's season finaly? I was talking to a friend on MSN the entire time, and making her laugh at how much I was freaking out. She doesn't watch Grey's.

I have to go... sleep, maybe. Or make some eggs. One or the other.
Bye bye.

Thursday, May 27, 2010

Sore Feet and Nothing Else

My feet hurt. A lot. I ran out of my pain pills long ago, so I asked some of my parents friends for a few of theirs. That's the up side of being surrounded by chronic pain people, I guess. But I ran out of those too.
I hate pain pills. They make me dizzy and lightheaded, and, I suspect, high. But I hate pain worse.
Now I'm out, I walked about forty feet yesterday, and all I have is Advil. Well, I actually just took the last one, so now I'm officially out.
Stupid doctors not giving me the proper amount. Stupid me for not rationing the ones I had properly. Stupid... people. Well I'm calling people stupid, I might as well say how stupid the people at NBC are for cancelling Heroes.
I'm going to go check and see if I have any sleeping pills left. I might take those and just sleep until the pain isn't so bad.

Tuesday, May 18, 2010

Fixed laptops and Neurologist visits

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...

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.

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.)

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.

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.

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.

Sunday, February 21, 2010

Coke at 1:38am

I know. Caffeine at night, not good unless you need to stay up. And I don't want to stay up.
Sleep is great. I love it. No pain when I'm sleeping. Well, sometimes my dreams end up with me stubbing my toe or something, but its not real pain. Not as bad.
Lately, though, sleep seems like a pointless use of time. at least during the night. Is that weird? Yes. it is. But I'm half sleeping all day, but as soon as the sun goes down, I can't make my eyes stay closed.
So I take my laptop downstairs, pop open a coke, switch the TV to something decent (late late show with Craig Ferguson is always a good choice, and then Will and Grace, then an episode of NCIS, then House, then Much Music video flow.), and write.
I quite like writing. I think I like it because it changes things. I stop being myself, and I become whoever I'm writing about, and that's just... a great feeling. Sometimes I don't even feel the pain, and it seems like my hands stop shaking, even though I know that's impossible. The nerves in my hands are messed from the CMT (charcot marie tooth) and they shake, or tremor.
But i think the weakness in my arms has gotten worse. I had a doctors appointment for my pre opp check up last week, and my main doctor, Dr.Lindsay, was testing the strength in my arms and hands, the look on her face...
Look, I'm not good at reading faces. It got me in trouble a lot as a kid, because I couldn't tell when someone was getting annoyed, or mad, or hurt by what I was saying or doing, so I would keep doing what I was doing till they yelled at me or started crying... but I can tell a little bit now, mostly from actually memorizing faces, and Dr.Lindsay's face was mixed between shock and concern... I think.
Well, add that in with the fact that I wasn't strong enough to keep her from bending my arm.
But anyway. A friend of mine came over today, and its getting really depressing to see her. For the past few times she's came over, she just acts so... different. I became friends with her because she reminded me so much of myself.
But I've changed so much since then. I became friends with her in the middle of grade 7, and now we're halfway through grade 10. Back in grade 7, I was younger. Okay, obviously, but I was younger in not only age, but in spirit.
Since then, I feel like I've aged so much. I like lists, so heres one about all the things that have added to my aging spirit;
-Basically being told that I have a uncuravle, untreatable disease that will get worse and worse and will hurt more and more until I die.
-My mom going back to work, leaving me to look after the house, even though I have a stay at home stepdad. He's majour injured, so he can't, like go to work or do anything around the house. Ya, he hurt his back. Yup. A hurt back. My mom has rhumatoid arthritis and fibromialga, and she worked full time, but he has a hurt back!! Sorry. I'm a bit bitter.
-I had soem problems with anxiety and depression. I spent the last half of grade nine not leaving the house.
-The woman my dad was dating stopped taking her medication for her mental illness, and she lost her mind, and left my dad, and took him to court for the house, then again for the van, then again for freaking spousal support, when they weren't married. I really liked her, i thought of her as my stepmom. I got pretty damn close to caring about her, and for me, thats a big thing. And then she just leaves and makes my dad move out of our house, and now I can't ever see him because he has to stay with a friend that I'm not really all that fond of (meaning when I'm in the same room as him, i get twitchy and nervous, like I do with all people I don't know that well.) and he lost a lot of money.
-My aunt died. She had a bit of a drinking problem, like a lot of people in my family, but she was about to go into rehab. Then one day, she went to go phone my mom to talk to her, and she had a heartattck two feet away from the phone. By the time anyone found her, she had gone intto a coma from hitting her head when she fell. They tryed really hard to save her, but her brain swelled so much she couldn't breath on her own. She was on life support for three days, then she was taken off. She lasted a day off it, then passed. To tell the truth, it was harder to watch my mom go through that then for me to actually go through it. My mom is really the one I care about most in the world. Shes not like other peoples moms, with rules and stuff. And she loved Leanna (the one who died) a lot. It was really hard for her. I don't understand the death thing, but more on that latter.

And my friend has gone through... well, she got a boyfriend, but she got annoyed with him and dumped him. Yup. Must of been tough.
but whenever I hang out with any of my friends, i end up feeling like I'm babysitting. Sigh. Well, I've been typing this for an hour, so I'm gonna post it. If anyone actually reads this ever, sorry for the rant.
24 days until surgery.

Hi

Hey, so this is my first post on this blog. I’m just gonna tell a little about myself and what I’ll be writing about here.
First off, my name is Freya. I am 15 years old and I was recently diagnosed with Charcot Marie Tooth disease, which is the most common genetically passed nerve disorder, but there is no cure or treatment. And it sucks quite a lot. My surgery is coming up, on March 18, 2010. Thats about as much as I can think of right now.