Thursday, April 9, 2009

"You could plan a pretty picnic, but you can't predict the weather."

Mackin' the Mito - Cytotoxicity Round Three!

Headache, tachycardia,(my new word of the DAY!) depression, left leg drop, anxiety... blah, blah, blah.

It would've been nice to know, oh, two months ago that my inflammatory response was so difficult to control that it will take me at best six months just to recover from that, let alone start seeing any real improvement toward my pre-symptom life.

Really, that could've been mentioned at ANY point before or after 3 February, Dr. R or J, RN. Jumpin' Jeebus on a pogo stick, that would've been AWESOME.

(There needs to be a "winky face" for *eyeroll*)

Plan of attack:

See family doctor before cardiologist.

See social worker before seeing the psychiatrist.

See cardiologist/Get MUGA scan (it's a MOVIE of your HEART pumpin' using OLD SKULE technology. It's very cool. I think I should own an MPEG of it. And a scrollable CD ROM of my last two MRIs. But I digress...)

See psychiatrist before seeing Dr. R to get some symptom relief.

See Dr. R for follow up on cardiology, chemo and symptom management.

If all this checks out I'm back for Round Four! in early July. I hope that I can do it in either two weeks before my birthday, or wait until after my birthday.

I'm averaging a level and a half each day in Mafia Wars and I'm up to level 53 with 116 mafia family members.

I need to surround myself in funny and hide from the world for a couple of days.

Kevin Smith or Seth Rogen? Both?

The steroids that I get with the chemo drugs are kicking my ass again, so I think I'll be going to bed *before* Jon Stewart tonight. I'll watch him online tomorrow. I'll try to send Joe down to the vid store to get me some luscious-comedic-man-with-tenuous-ties-to-Vancouver-made movies.

Things are not going the way I was hoping they would go. Things are things that I need to take a couple days hiding out from.

The title of this post is from the song "Ms. Jackson" by Outkast. (I prefer BOB, but this line was fitting.) I've been listening to Johnny Cash remixes and covers for days. If you've got any on mp3, gimme a shout out.

I'll close with this song that's NOT by Johnny Cash, but seems to fit with what he used to sing about and what I'm going through.

When there's nowhere else to run
Is there room for one more son?
One more son...
If you can hold on
If you can hold on,
hold on.

I wanna stand up, I wanna let it go
You know, you know - no, you don't, you don't.


I wanna shine on in the hearts of men
I want a meaning from the back of my broken hand.

Another head aches, another heart breaks
I am so much older than I can take.
And my affection, well it comes and goes
I need direction to perfection, no no no no.

Help me out
Yeah, you know you gotta help me out.
Yeah, oh don't you put me on the blackburner
You know you gotta help me out, yeah.


And when there's nowhere else to run
Is there room for one more son?

These changes ain't changing me
The cold-hearted boy I used to be.


Yeah, you know you gotta help me out
Yeah, oh don't you put me on the blackburner
You know you gotta help me out, yeah
You're gonna bring yourself down
Yeah, you're gonna bring yourself down
Yeah, you're gonna bring yourself down

I got soul, but I'm not a soldier. I got soul, but I'm not a soldier.
I got soul, but I'm not a soldier. I got soul, but I'm not a soldier.

I got soul, but I'm not a soldier. I got soul, but I'm not a soldier.
I got soul, but I'm not a soldier. I got soul, but I'm not a soldier.
I got soul, but I'm not a soldier. I got soul, but I'm not a soldier.

Yeah, you know you gotta help me out
Yeah, oh don't you put me on the blackburner
You know you gotta help me out, yeah.
You're gonna bring yourself down, yeah.
You're gonna bring yourself down
Yeah, oh don't you put me on the blackburner
Yeah, you're gonna bring yourself down
Yeah, you're gonna bring yourself down

Over and out, last call for sin
While everyone's lost, the battle is won
With all these things that I've done.

All these things that I've done.

If you can hold on,
If you can hold on...


All These Things That I've Done - The Killers from the album "Hot Fuss"

Tuesday, April 7, 2009

Quality Control


So, the sun is out. I went outside. I deposited a cheque for $111.58 in the bank. I mailed my taxes.

My random playlist has played Straight Outta Compton, Swagger Like Us, Quality Control, and Paper Planes right in a row. I'm playing Mafia Wars.

"All I wanna do is (BANG BANG BANG BANG) and (KA-CHING) and take your money."

Today is Joe's last day of school for this semester. Happy one year of completed classes, Joey.

Sunday, April 5, 2009

How soon is now?

I imagine doing all sorts of destructive behaviour these days. Every time Joe comes in from outside after smoking I feel envious that I am "not allowed" to smoke. I haven't smoked in over 18 months and I think about it more and more every day.

There's nothing that I would like more than to spend the rest of my life drinking, smoking and enjoying prescription medications. I believe the term is "Comfortably Numb".

Sadly, I don't have the budget for such an endeavour. Mayhaps I should start buying lottery tickets just to fund it?

Three words:

Re-prioritize
Redefine
Adapt

On one hand, I'm told that I need to do these things so I can be "happy".
On the other hand, I'm told that I have to go slowly, patiently and scale back my expectations or I'll never be "happy". Live in the now, she says.

NOW SUCKS. I don't want to live in this Now. I want to live in someone else's Now. I've been trying to live in some other Now for my entire fucking life, and now I'm told that I absolutely have no other fucking choice but to live in this one?

I give up. I can't live like this and I can't live the way that I want to. I will call the authorities that need calling tomorrow morning. I'll try to fake some sort of hope to save those around me from any sort of discomfort. Today is the last day I talk about anything negative in public.

Only sunshine, lollipops and rainbows for this woman... or she'll say nothing at all.

Saturday, April 4, 2009

The Future

Lisa put forward these four questions a blog post ago and I'll answer them now:

What elements made up your life before diagnosis?

Most of what made up my life before my diagnosis was doing the prep work for having a completely different life in 5 or 6 years. Going to work everyday, keeping on top of bills and money, getting Joe through school so he could get a good job that allowed me to go and get the education I've always wanted. I had friends that I could do stuff with when I could afford to do stuff. I was a part of the political party system. I worked for the candidate until I got too sick. I am on the local riding association executive. I obsessively watched and read everything I could about politics. I obsessively read and watched everything I could about fashion, but not trends. Much of my life was about what I could do with myself, for myself, by myself. I didn't have many friends who were interested in doing what I liked doing, and that included my husband. For an extrovert, I seem to have surrounded myself with introverts. My life was not as I wanted it to be, but I had the skills, knowledge and know-how to get there with time and support. With MS, I've got the time and the support, but the skills and know-how are gone.

What have you done as a livelihood?

For the past 9 years I have been in events/fundraising or an executive/personal assistant for the most part... with an 18 month sojourn into the legal field. It's a busy life with little emotional or monetary payoff, but it's what I know how to do.

Are you unable to do the same thing for a living at this very moment?

No. The key to being able to work in jobs like this is that you are capable of showing up everyday, with all your physical and mental capabilities, looking good and fresh and bright eyed, and being able to work anything from 8 hours to 12 hours without hesitation. That's not an everyday thing, but it happens more than you'd think. I still know how to do the job, I'm just not able to commit to a job like that because of the unknown future MS has given me.

And what had you pictured as your future?

I wanted a fabulous life all about me. When Joe and I decided to get married, it became all about us, and thus less personally fabulous because Joe doesn't like or enjoy many of the things I find fabulous. Since I have no real talents or interests, being fabulous is something that I've aspired to since the first time the "girls" dressed me up in their drag costumes and I passed as a boy in a dress at a gay bar. MS has stolen that from me, too.

MS has taught me that I am a really awful human being, and I'm not sure that I am at all interested in changing that. I'm extremely self-centered and selfish. I hate most people. I cannot tolerate people who are gullible, unquestioning or simple and people with no sense of irony or intellectual curiosity. I know that I am smarter than most people and really try to keep myself away from people who can't keep up or can't think abstractly. I hate children and old people I am not related to.

My social worker is sending me to the MS clinic psychiatrist, and I know that if I tell him the truth I'll be on anti-psychotics by the end of the session. She seems to think that I need to find "my soul" and re-prioritize my life.

I know where my soul is. It's in England. I sold my soul to Noel Taylor back in the summer of 2003 because I wasn't using it and I'm not sure that he's interested in giving it back. I don't believe in the soul. I don't believe that there's any part of me that's eternal, nor do I want there to be.

I have no priorities beyond making myself comfortable. In 80 or 90 years everyone who's ever known me will be dead so what I do now matters not, since I'm not curing polio or inventing the internet. I believe that the point of life is just pain management. You just work hard enough to make life as easy to deal with as possible. With MS my ability to manage my own pain is regularly defeated by my lack of money, stamina and cognitive abilities.

I'm not interested in embracing my life if there's no chance it won't end up fabulously. I have no talents and no interests beyond fulfilling my own need for comfort. Joe and I tried to talk about this last night and what it came down to was that he doesn't like me as a person very much and we're less compatible than he thought we were in the beginning. I am not interested in people and I'm less interesting than I think I am.

I'm supposed to find meaning from all this? I am supposed to find my "authentic self" or some such in all of this? I'm quite obviously failing as a human being and being physically disabled just compounds my worthlessness.

I've known for a long time that I'm just not a nice person. I guess I've just got what I deserve.

Wednesday, April 1, 2009

Music: Response

You love this town 
Even if that doesn't ring true 
You've been all over 
And it's been all over you 


I am not generally a fan of U2's later work, but Beautiful Day just bounces with hopefulness. This particular verse also reflects my feelings about Vancouver.

I will not pretend
I will not put on a smile
I will not say I'm all right for you
When all I wanted was to be good
To do everything in truth
To do everything in truth


I am more familiar with Rufus' work, but this verse from Martha Wainwright's Bloody Mother Fucking Asshole kicked me in the gut. This song is three chords and the truth.

You are the dancing queen, young and sweet, only seventeen
Dancing queen, feel the beat from the tambourine
You can dance, you can jive, having the time of your life
See that girl, watch that scene, digging the dancing queen


Disco is just happy, joyful and makes me want to dance. ABBA are the Royal Court of Disco, and Dancing Queen is their anthem.

If you're not dancing, then you're dead.

Just how much fun are Marilyn Manson tunes, really? If I were a club goer, I'd do the jitterbug to this tune. But I'm not and I can't so I'll just use this a walking tune. Fun! Doll-Dagga-Buzz-Buzz-Ziggity-Zag!

And we'll all float on alright
Already we'll all float on alright.
Don't worry even if things end up a bit to heavy
We'll all float on alright


Life has shit happen, but it'll all work out. This is something I'm really impatient about and this helps me remember that. Thanks, Modest Mouse!

I've had enough of hiding underneath my covers
I'm done with all that poop that brings me down


I've taken to singing this song *Really LOUD* whilst Joe is at school. I'd never heard of Cloud Cult before this project but I'm really glad I have heard of them now. I will laugh through hurricanes and fire, and I will link to a youTube video of the song live at some club so you can get on board with the Cloud Cult. It takes a minute of instrumental-ing to get going. And yes they do use the word *poop*.

I've been spending way too long checking my tongue in the mirror
And bending over backwards just to try to see it clearer
But my breath fogged up the glass
And so I drew a new face and laughed


This is a happy little song. I also like Jason Mraz's use of hats as an affectation. So this song gets a thumbs up. It would get two, but he mentions ear nibbling in the song and I think that's gross.

Hey, I wanna drive the Zamboni
Hey, I wanna drive the Zamboni


I love corny hockey songs; they're a secret vice of mine. Since no one knows about my love of this particular genre, I'm shocked that I know anyone else who does.

Being like you are
Well this is something else, who would comprehend?
But some that do, lay claim
Divine purpose blesses them
That's not what I believe, and it doesn't matter anyway


This song reminds me that I can't let this disease change me, swallow me up whole and become the thing that defines the way I interact with the world. It's a pretty, pretty song that empowers me to keep moving. Illusion by VNV Nation regularly makes me tear up, so no listening to it on public transit.

Feelin pretty good and that's the truth
It's neither drink nor drug induced
No I'm just doin alright

And it's a great day to be alive
I know the sun's still shinin when I close my eyes
There's some hard times in the neigborhood
But why can't every day be just this good?


I generally have a *hate-hate* relationship with country music, but this song came from an old friend of my sister's. She listened to this song a lot while her husband was deployed in Afghanistan, and if it got her through that, then I can sing along to it (again, while Joe's not home) and get something out of that good vibe. That's kind of the point of this exercise; to get a lesson in inspiration, and where it comes from, from my friends.

The next song is an instrumental, so I've got no lyrical content.

Linus and Lucy is a happy, happy song that makes me want to dance like the kids in the Peanuts which is where I'm convinced I would've got some of my best dancefloor moves.

Your hand won't write, not tonight,
But your mind may wander.
Into those deep lagoons that you know.


Sarah Harmer's Lodestar reminds me of summer nights spent near places like Chemong Lake, the Madawaska River, Centennial Lake, Little Lake and the Otonabee River. I've never lived far from a body of water, and I think it's because of these places. I can live with or without the mountains, but I think it's about time to go beach glass hunting again.

I will not fail nor falter, I shall succeed
My perception is altered, I do believe
Faith is so strong now nothing shall bar my way
Firm conviction is no fiction
This is my day


YAY! This one is on the walking list. It makes me want to march. It makes me want to move, move, move any mountain. Of laundry. Or mountains that were previously molehills.

Can't you see, life's easy
If you consider things
From another point of view


This is a groovy wee tune that I sing as well. This song immediately popped into mind as my mental health professional and I were talking about expectations and the future. It's a toe tapper, and has a great beat for walking to as well.

Where's your head at?
Where's your head at?
Where's your head at?
Change my pitch up, smack my bitch up.
Where's your head at? Where's your head at?
Change my pitch up, smack my bitch up.
Where's your head at? Where's your head at?


Ima HUGE fan of mashups. I can't even begin to explain how much joy I have personally enjoyed this song. I haven't heard Where's Your Head At? since 2002 or 2003, and Smack My Bitch Up is a club staple of the late 1990s. This song gets me moving, and when you move as little and as awkwardly as I do, any little bit helps.

Les sanglots longs
des violons
de l’automne
blessent mon coeur .
D’une langueur monotone
tout suffocant
et blême. Quand
sonne l’heure
je me souviens
des jours anciens et je pleure.


The best I could do with translation was by using my Grades 1 through 10 French education, knowledge of Quebec licence plate slogans, and freetranslation.com. This is the best I could come up with.

"The long cries (or sobs, not sure) of the violins of the fall injure my heart
A monotonous languor all suffocating and pale
When the hour rings I remember old days and I cry."

The song sounds a bit happier than it is, but being reminded that I could still probably learn French is a good one. And I love trumpet. Totally dig trumpet. It's way less "honky" than sax.

Tonight I'll dream while in my bed
when silly thoughts go through my head
about the bugs and alphabet
When I wake tomorrow I'll bet
that you and I will walk together again
I can tell that we are going to be friends.
Yes I can tell that we are gonna be friends.


This is song is so innocent and sweet. That's all.

One, two, three, four, five, six, nine, or ten
Money can't buy you back the love that you had then
One, two, three, four, five, six, nine, or ten
Money can't buy you back the love that you had then


This is a happy song about a depressing situation. It reminds that there's nothing I can do to change the past, things are going to change no matter what, and in the end all you can do is put on a purple sequined jumpsuit, dance and take a bow.

I'd just like to thank the friends who helped with this. It taught me a lot about the people I know. I'm not particularly close to the vast majority of people who responded, I had a couple of people punk out on me and were kind of mean about it, and it taught me to find find inspiration in the works of others.

My social worker is sending me to the MS clinic psychiatrist to figure out sleep, depression, and getting a referral to a therapist who can deal with me. It's funny that cognitive behavioural therapists in this town don't deal with people with chronic illnesses. That's too bad because CBT is the only type of therapy I have any sort of confidence in. I'm not sure that therapy can help this time, but I am willing to investigate the possibility.

I've almost completed my Level 1 - Enforcer level in Mafia Wars. YAY.

And we'll all float on alright...