I'm Here If You Need Me...

Im being admitted to the hospital for 5 days…. Weee….. :(

Don’t get me wrong, i LOVE piano…
I meant taking it at school as a class was a bad idea. the teacher spends most of his time trying to get me to play correctly. In fact today we were learning “kumbayah” and he spent thirty minutes just counting until i could play it right. Or, right-er. My hands are far too delayed. I’m counting in my head but my fingers just… they shake and then i skip keys, random double strike, and sudden stops. Just complete stops. In my head i’m telling them to play and they just sit there. Shaking. And sweating. I have to put my arms down and rest for a second so i can make them go again. I think next semester, if i’m up to it, i’ll look into classes at Family Music center to see if i can find a teacher that is willing to work with someone who has a “disability.”

My teacher knows i have MG, and i think that’s why he spends so much time away from the other students to try and work with me, but i can tell he’s frustrated, especially when i’m playing and i just freeze. It’s the weirdest thing… i wish i could explain it better… Today he pointed to a base cleft note and asked me what notes they were. One was an E, the other a G. It took me 10 minutes to answer. I felt like i was stuck in my head. I KNEW the answer. I made freaking flash cards to learn the notes, but i couldn’t figure out how to work my body. I was stuck in limbo. I could see just fine, but nothing was happening. My eyes were moving around, my hands were shaking, and my brain just didn’t know what the hell “talking” was supposed to mean.

I feel bad that i take other students away from help with the teacher. He was bombarded with questions after class today that normally would have been covered if i wasn’t such a burden. I have to play everything about 70% slower than most people, or my fingers get funky. He sits there and counts for me in a slow manner and goes, “1….and….2….and….3….and….4….” and i still can’t get it. I forget that i have 2 hands, or they are both somehow on different tempos… i  The weird thing is… i KNOW when i’m going to hit the wrong key as soon as it starts to happen. I KNOW that my brain said “C” and then i gasp or make some sort of noise, as my finger plays a “G.” I hope IVIG can help with that…they still haven’t called, btw. I wonder if something is up with my health insurance…

I will add to this list as more books come to my attention :P

• Mocking Jay (Hunger games book 3)
• The Help
• The Lost Hero (Heroes of Olympus: Book 1)
• Red Pyramid (Kane Chronicles: Book 1)
• Witches and Wizards (Book 1)
• Grimms Fairytales
• Cinder
• City of Bones
• Clockwork Angel
• Glass
• Room
• Wicked (Life and times of the wicked witch of the west Book: 1)
• Alice in wonderland’s Through the looking glass
• Cosmopolitan Issues (Monthly e-delivered to my nook)

(I’m already halfway through 3 of these books…. lol)
I’d say i’ve got a good list ready. I’ve got 4 months of no lifting/bending/or doing anything uber extraneous. Okay technically i can lift after 8 weeks or so, but it’s summer break… what else am i going to do?

Trust me, i know this movie by heart. 
But i don’t want to do that right now lol. I need to summarize the movie first… and i gotta figure out what details i’m going to take out first…. *sigh*

Futurama is on. 

Didn’t sleep much at all last night. I kept having weird dreams. Between dreaming of surgery and some weird hangman inspired game…. yeah i dunno. Last time i have chef boyardee before bed…

I can’t remember what the hangman word was. I know it started with a ‘C’ but nothing beyond that. It was the same word each time. As soon as i “won” or “lost” the word would come up and then i was awake. I’d get up, pee, go drink some water, fall asleep again, get up, pee, drink water. Never ending cycle. Finally by 5 a.m. i was fed up and just sat in my mom’s room while she got ready for work. She seemed pretty happy with me not going to school today. She was laughing and making jokes, we ate breakfast together, she got my meds, patted my head… dunno. I think she’s more comfortable having me at home then out and about since i’m not all that controlled at the moment… who knows. 

Fell asleep around 9:30, woke up at 10. Watched “Special Agent Oso” and “Mickey mouse clubhouse” until i got tired of getting up to pee all the time. So i went downstairs and ate some foods. Nom’s. Now. I feel like writing….

I was talking to a friend about surgery. Mostly joking. He was telling me that he was going to buy me the bestest spongebob doll he could find and everytime i was scared in the hospital, i needed to give it a hug. (He’s called beefybob now :P). Then after dinner, while walking up the stairs to my room, i got the strongest urge to cry. I walked to the bathroom, closed the door, and proceeded to break down.

I have never felt so scared in my life. I think maybe the idea of the surgery finally hit me. That it’s such a big procedure, that it’s scary. Terrifying.

I know my family and friends will be there. My mom is staying there over night and i googled the hospital and they make exceptions for those that want to visit in the later hours. I wont be alone, i know that. I’m afraid of all the memories of my dad in the hospital, afraid of things i don’t understand…. ugh.

I’ve done my fair share of reading on thymectomies. From the catheter to the chest tubes to intubation to the surgery itself, i’ve read it all and i’m comfortable with the info. (basic analysis; i’ll most likely have an epidural since myasthenia gravis patients dont respond well to morphine; so i probably wont feel a damn thing lol). But im scared. beyond scared. still. which i know is normal, but at least im not crying anymore. >.<

Ugh. crying was a bad idea. I feel so weak now. I feel like writing a poem i just… don’t have the words yet. The emotion is there, but i cant think of a single line. Ah well. I think it’s best if i shut up and try to relax.

really dont want to go to piano tomorrow. I haven’t practiced… pretty much at all… i mean were not doing anything new in class since our mid-term is the 7th. He gave us an “attendance” quiz peice, but he said if we wanted to focus more on the songs due for the mid-term that’s fine too. I do want to go because i need to figure out where my hands need to START for the Hanon exercise. The book says to start 1 octave lower than written in the book, but i don’t really know… where that is…. lol i googled, but i really can’t figure anything out. Everything else is pretty straight forward. 

Anyone want to go for me? :P

*Friend from UNLV that’s in a Fraternity*

(summary of status/event posting)
“Hey guys, i’m raising money for hearing loss and life threatening illnesses with my fraternity! Did community service today, went to church, and now i’m collecting money! I feel good :)”
38 Likes.

Really?

I post up the information for the MG walk and i got 1 like. From my best friend. Who was already doing the walk with me before i posted it.  My mom has sent it to all of her friends, i’ve sent it to all of my friends, and tumblr and though i’m very excited that we’ve raised $75, i’m a bit disgruntled that a damn fraternity boy can get more “awareness” than i can. Comments are coming in the boat loads saying, “your such a good person!” and yadda yadda yadda.
Now i know, he’s doing good and raising money and what not but seriously…. even if i put up a stand at UNLV, created an event on facebook, and walked around with a banner on my shirt, i still wouldnt raise much. Hmph. 

Cocky?

to tattoo yourself… on yourself? 

Right?

Okay, so i have this friend thats in a band. One of their album covers is of them in like Rag doll form. (Kinda like the Korn album…. ) 

He has now mentioned that he wants to tatoo his rag doll onto his arm….

He wants to tattoo himself…

on himself…

…….

You all see what’s wrong with this… right?

****** RELIGIOUS RANT HERE! JUST SAYING…****

A rather large post is taking up spot on my facebook. It’s a picture of Obama and his reasoning as to why he wont pass a law to ban abortion. He says he can’t simply pass a law based on his own religious beliefs, because there are those who have no religious beliefs that he needs to consider. (Good president here.) 

For some reason this has about a million major christian (and their all christian, i’m sure of it. All their comments start with, “I’m a christian…) people commenting and this one sparked my rage a bit more than the others i read.

“I am not the one who decided that homosexuality and abortion was wong, God was. Therefore, I am not the judge of what is right and wrong. As a Christian, I feel that it is my calling to preach against these things.”

Dear lordy. You can’t be serious. These are the people i wan to bash upside the head with a spiked cross. Being a Christian, or a Catholic, or Muslim, or any other faith DOES NOT give you the right to judge other beings for their way of life. Why would someone want an abortion? Drug addicted? Rape? Financial ability? Age? There’s plenty of rational reasons for it. I couldn’t do it, but i think that’s just a maternal thing. I’m pro choice. And how in the world did homosexuality end up in the same conversation as abortion? 

What happened to “an eye for an eye?” 

Here we go, this is what i’ll do.

For every uber religious person i see bashing gays or abortion or any other thing that is none of their damn business, i’ll pull a sign out of my ass that says being overly religious is a sin. Jesus died so we could live our lives they way it was meant to be. Not to sit in a church all damn day and praise “halleluja” to “osana in the highest.” (yes, that is an actual church song… trust me…)

It’s absolutely fine to be religious. Even super awesomely over religious. But do it in private, in your own place. Your faith is between you and your higher being. Not you, your higher being, and every damn person on this planet. BTW: My “Jesus” is named “The Great Jeebus.” I just call him “Jeebus.” He calls me “short bus.” That is my religion. God and Jesus should be your friend, your last resort “dear god i’m dying!” speech, not your entire life. Don’t treat him like he’s your boyfriend and your incredibly clingy and stubborn. If it were that way, he’d be down here on a solid gold chair ruling the world, and he would have fought to live, God knows he was powerful enough to do it. (*ba dum tss* haha geddit? :P). I’ll say it one last time.

He died, so we can live. Please stop living for him. Thanks.

I stare in the mirror.
This figure before me.
I trace down it’s chest,
Soft and smooth,
Free of atrocity.

The image shifts.
A dark red line bubbles to the surface,
Distorting,
Cracking,
The tissue in its way.

Already in pain,
A deafening snap sounds.
It’s chest distorts and heaves,
Splitting apart before
Slamming back together.

My hand touches the mirror,
Watching the shape in front of me
Contort and shriek.
Heart races;
Tears fall.

Blood flows,
Pulling the skin and bone
Into an incohesive design.
Skin puffs up; a scab begins
To hold the skin together.

The image melts,
Leaving a ragged pink line in its spot
Before it fades away.
Soft and smooth again, but different now.
78 Days to go. 

It went splendidly. :) I’ll delete my old post and put up the revised edition of my poem. I’m only making minor changes, turns out everyone really liked the poem i wrote. The only issues was an argument about semi-colons in response to poetry, and whether or not i should introduce medical jargon into my poem. I was even told that i had the “favorite” poem of the workshop :D So, as you can imagine, i’m incredibly happy! They all even said it seemed like it would make a good “book” type deal with the countdown. I didn’t tell them i was even considering that, so i’m a happy camper.

MG so far is okay. The prednisone makes me feel a little… jittery? I feel like im supposed to be shakey if i feel this way, but i have no shakes or tremors or anything. I dunno. They went away after a while and now i’m feeling a headache come on and i’m a bit bloated from the nachos my brother and i devoured. But other than that i’m fine. Getting a wee bit sleepy. I like my morning pill, though. Kept me awake all day. Not like “energy drink” awake, but i wasn’t yawning every 20 seconds. So that’s a plus :) Still not sure if im going to start taking the anti-depressants. I can see why the doctor prescribed them. A lot of high dose meds come with a case of the antsy in your pantsy feeling. But i dunno if i want to do it yet. I dont feel all that antsy. But that medicine has some really scary effects. Like if i get on it and then i want to get off, i have to go through a whole withdrawal program. spooky. I’ll hold off for now. We’ll see later on how i deal with it.

And the finished my homework for tomorrow before 12. :) But now that i’ve given my dogs a bath… oof. Damn MG. 

I’ll be going on a regime of medications now. A high dose of prednisone, a pill to help me sleep, a pill to help me wake up, and pill to keep my stress level low so i don’t get any extra complications before surgery. AND once a month i have to go in for IVIG treatments. (IV replacement of my anti-bodies)

Few.

I’m tired just thinking about it. But i did my fair share of research and have boughten my local Smith’s entire stock of “Ice punch” gatorade. It’s the clear one :) So now, once i get a date for the IVIG, i’ve got extra “sugar” and “hydration.” I’m already a big water drinker, so i just needed to stock up on the sugary part. 

Anyhow. Spongebob is on.

Relaxation time :)

Then do another one about recovery. 

A twofer! lol 

Just a thought….