Tuesday, September 29, 2009

Today I saw:

1. Mahmoud Ahmadinejad wearing a Grinch parody t-shirt that said "The Pimp who Sold Bitches". (I don't think he's very devout when he's in Canada.)

2. A homeless woman/girl who stopped an entire crowd of strangers to shriek "YOU RUINED MY LIFE" at them and then screamed.

3. An episode of Lie To Me.

I did 1/3 of a Jillian Michaels workout. I did an hour of physiotherapy as well.

I carried 10lbs of free weights in a backpack from Robson & Denman in the West End to Commercial & E. 18th in East Van without stopping.

I jogged to catch two buses and to make it through an intersection before the light went red.

I have a bet with Jason King that I will lose enough weight to get into my favourite pants a) before he does or b) by Valentine's Day.

I have new alphabets for PCStitch, projects on the go and projects on the to-do list probably until the end of the year. Maybe. I wish I could stitch more often.

Tomorrow is more of the same. Not much changes around here.

Sixteen days until I have my next mitoxantrone treatment and UBC Hospital called today to tell me my next MRI appointment. If there's positive change from last year (my diagnostic image) then I don't have to have anymore mito! YAY for no more smurf juice. Given that I am head and shoulders better than I was a year ago, with only some minor deficits remaining, I am thinking that I won't need any more.

Only two more days until hockey.


Saturday, September 26, 2009

I don't know.

Each day for the past few days I have logged into Blogger, clicked "New Post" and stared at this empty text box.

I don't know what to say. I just stare and stare at this off-white box of possibilities and have no idea what to fill it with that isn't rage, anger and frustration.

Don't get me wrong, things are way better than they were, but they aren't good. They aren't good by any stretch of my imagination. As I've said before, they weren't great before I got sick, and now they are worse because every problem I had before I got sick a year ago was just put on hold for a year. Now I'm sitting here with all those problems amplified by a year of neglect and more, newer, unchangeable problems.

I've been working a few hours a week chasing down possible pirates for Donna. That's pretty okay. I went to a job fair and instead of being laughed out of the room, I got a "Let me get back to you next week". That's pretty okay too. I'm doing 15 to 20 mins a day on my stationary bike most days a week. (At least 4, sometimes 7) Again, that's pretty okay, but completely against everything I would've done before I got sick. Ditto yoga and other stretching as well.

But it is working. I have been out doing stuff outside for days and I have used my cane once in the past 13 days. That's awesomesauce, but only because it's better than the alternative, and I'd rather not have the alternative.

What I really want is a reason to get up in the morning and 99% of the time I am not that reason. "Just because" will never be a motivation to do anything but shop for shoes and makeup.

(Side note: Made my first pilgrimage to the new Sephora Vancouver and have learned two things: 1. I can't go anywhere near the place until I get a job. 2. When I can afford to go there, I cannot go without adult supervision.)

I'm stitching almost daily now. I'm writing daily. I recently discovered ToastedCheese.com and have fallen in love with their monthly calendar of writing prompts and on Sunday I will attempt very first Sunday Brunch prompted writing exercises. Last Sunday's were:
1. Use the following words: touch, bullet, newer, himself, bright (10 min)
2. Write about something you can do with a ball. (10 min.)
3. Write about pockets (or Pocky). (10 min.)
I look forward to trying this week's. I think it will be a challenge.

I have been trying to balance my desire to turn inward and isolate because I'm such a fucking freak, and getting outside of my house and myself because if I neglect myself my disability will get worse.

But I have to admit that one of my biggest obstacles to posting this is that I am boring. I am really, really boring. I declined to join foursquare.com because I don't go anywhere, do anything, or have any money to enjoy the finest restaurants and entertainment this city has to offer. I know that I am boring because I am always bored. I hate being boring. Being boring used to be a fate worse than death.

(Though, that probably explains my previous life's questionable taste in men.)

I write because I am bored, and I've been hesitant to share my boredom with my little corner of the world. It's taken me an hour to write this and I already regret it.

Monday, September 21, 2009

My problem

"You viciously oppose free will. You avidly tell people what they should think."
- Anonymous response to my online survey

If opposing free will is calling members of my family out for sending racist "jokes" and for being angry when someone says it shouldn't matter, then call me vicious.

How I even know these people, let alone come from the same gene pool, is a constant source of bewilderment for me.

It is true that you don't get to pick your family, but I have never been more grateful that I live 3000K away from these people than I am right now. They were so loving and concerned when I was sick, but now... now I'm just too bloody opinionated. Now I'm just a high and mighty bitch who has no place telling other people that what they think is wrong.

So, the only two people in my immediate family who are still speaking to me are my parents and maybe my brother. (we don't talk. not because we hate each other, but because we don't talk on the phone) How long that lasts after this message gets out is questionable. My sisters think that it is more important to defend stupidity than to accept that they were and are wrong.

I can't believe we grew up in the same home. I am crying because I had no idea that my family was capable of such hate. I am sick to my stomach.

I thought there was a chance that my sisters and I could be friends now that we are adults, but I was wrong. It shouldn't be surprising, but it still hurts. I am sure that the two of them can come up with enough problems with my past that will justify this in their minds.

I'm done.

Thursday, September 10, 2009


I have spasticity in my left calf that sometimes throws off the proper movement of my knee.

I was searching around online for ideas on how to mitigate this MS symptom. I was struck by this cultural difference.

When I took this to my neurologist I was prescribed a trip to the physiotherapist and was suggested a consult with a yoga instructor. I went to the physiotherapist and was given 8 simple exercises to complete on my own with a follow-up appointment in November.

Every American and Brit I encountered online were prescribed a medication. From the sounds of it, quite a costly one for the Americans with some pretty inconvenient side effects.

Does anyone else find this strange? At first I thought it was a symptom of the profit motive in US health care, but when I found the Brits were getting the drugs just as often, I started to think that maybe its a regional thing. Maybe British Columbians are just less lazy? BC is a very activity focused place, Vancouver even more so. I wonder what the treatment of MS is like in Ontario, because that's the next likely place I'm going to live in Canada. Do the clinics there have all the stuff I have access to in Vancouver?

Just wondering.

Friday, September 4, 2009

Oh blah.

Everyone I know with MS who works are either self-employed or have the same jobs they did when they got diagnosed.

Has anyone reading this looked for a job post-diagnosis? How do you do it? What do you look for in a job description and an employer?

I've really settled in to a pattern with my symptoms, but some days I need help, some days I need to spend the day in my pjs, and some days I'm really clumsy. I don't know how reliable I am. I don't know how long this relationship I have with my symptoms is going to last, and I don't think I will need accommodation often, but when I do, I really do.

I have NO idea what kind of work I am even capable of doing, because I've never done this before.

I need a job before I go batshit nuts. I can't live broke like this anymore either. It's just kicking me in the face every day.

I met with the job counsellor again today where we went through my job preparedness and readiness. I passed that test too. Passed it to the point that they aren't sure that they can help me.

I just have this sneaking suspicion that in this job climate, when given the choice between me and someone with no problems, they'll pick no problems over me, or if they're interested in diversifying their workplace they will pick someone who is more obviously and/or consistently disabled.

This sucks & I suck.

Speaking of sucking:

8 of my friends think I'm pretty awesome, and 1 thinks I'm an asshole. I consider that a sign that I've chosen good friends.

If you haven't shared your opinion, go ahead and try it now.

I am most popularly known as courageous, enthusiastic, realistic & self-directed. 3 to 1 my friends think I'm sane. That makes me wonder if any of my friends have met me.

I DO need more and shinier tiaras.

Tuesday, September 1, 2009

All Quiet on the Western Front

I have been uninspired and closed off from the world for days and days. Yesterday marked the first time I had left the house in the better part of a week. I find the real world difficult to deal with.

The insomnia and anxiety are getting the best of me. I don't have much else to say or give to anyone or anything because of that.

My friend Margaret put together a survey and sent it out to her friends. I copied her.


I'm a big fan of empirical data.

Tomorrow I go to my family doctor for my 9 month delayed poke and prod. Thursday I go back to the employment resource centre to find out what being in the 99th percentile of spatial reasoning gets me.