2010

I’m sore. I’m wondering if I’ll ever feel like a human being again. And then I do some physio and I feel better, but I don’t do it everyday because it’s too much of a hassle. Much more of a hassle as having your body yell at you for letting it get stiffened up? It feels so good afterwards, why don’t I do this all the time?

I am uncomfortable. I’m not happy with the way things are going and if I have learned one thing it is that when I’m not happy with how I am, I have to change the way I act. I could take much better care of myself and I don’t because sometimes I don’t care. Sometimes I’m just tired. Sometimes I’m just lazy. Then I look at my body and I want to die because I’ve ruined it. I have to take getting my body back much more seriously, because I can’t do what people traditionally do to lose weight. No weight training, no endurance training, just diet and some biking.

Will it be worth all this effort? I have no fucking idea. I don’t know, but right now I’m thinking that it’s the process that means more than the actual outcome.

I’m having a lot of vestibular ataxia lately and being nauseous all the time from the resulting vertigo is getting a little old. I do hope the physiotherapist can put something together for me that will help me treat this and make it go away.

This is how insidious MS is. It creeps into your life just one crappy, rather small symptom at a time. Numb fingers, tingly toes, tripping over lines of latitude, bumping into the corners of desks or catching door jams in the shoulder; one of these things would be insignificant and easily ignored. all of them are annoying and constant reminders that I’m not right and I never will be. Even as I type this, my right thumb is losing feeling off and on. My left toes are tingling like little shocks you get from licking a 9 volt battery are rushing through the bottom of my feet. My wrists will hurt at some point today. They hurt with short, sharp pains off and on for most of the day, most days of the week.

It feels like the year doesn't start until tomorrow. I'm cautiously optimistic about 2010 but that's mostly the anti-depressants talking. I have reset a 101/1001 list for January 1, 2010 to September 28, 2012. I'm not sharing the list publicly because much of the list is highly personal or horribly tedious. But less than 3 days in I've kept up with what I wanted to do. I've even completed one thing.

I quit smoking because Joe thought I couldn't do it. My single resolution for 2010 is this.

I will not be in the same place I am now on December 31, 2010.

"You must do the thing you think you cannot do." --- Eleanor Roosevelt

Listography 12B - List Your New Year's Resolutions

(There isn't an actual list in the book called this. I made it up given the time of year.)

This list is a work in progress. I will come back as I see fit.

92% of resolutions fail because they're just an outcome that fails to account for the process of getting to the outcome. This might be useful information for those people trying to build a list of resolutions.

In the Year of Our Lady Two Thousand and Ten, I hereby resolve to:

1. Bring sexy back.
2. Get some (literal not metaphorical) balls and put them to proper use.
3. Join the cocktail class.
4. Engage in some hockey related rioting.
5. Just Dance.
6. Take this job and shove it.
7. Ladies Night, oh what a night. (Erin, Donna, I'm looking at you. You too Adrienne.)
8.

Listography 12 - List your Favourite Toys when you were a Child

It's that time of year, The Day That Shall Not Be Named, so this seems like a pretty good list to do. I don't remember a lot about my past, for reasons that I really, really don't want to get into other than to say, "No, my parents didn't abuse me." Moving right along...

I remember having a teddy bear that I wore out. It only had one eye, it might have started out pink, but it was sort of a weird fleshtone in the parts that weren't just the sheer fabric that held the plush. It had a huge head and not much of a body.

I don't have any idea what happened to it or even when it went away.

I loved playing Barbies with Natalie when I was a kid. She had the Barbie Chalet and I had the Camper Van.

The last Xmas I believed in Santa Claus was the one when I got my Cabbage Patch Kid "preemie" named Juliette Clarette.

My sister Julie got a CPK before that Christmas and her's was named Julia Clara. My other sister got hers at the same time I did, and it was a boy preemie named Alon Gunther.

Why do I remember this shit when I can't even remember what I had for breakfast?

My favourite "toy" after that was MTV on the satellite dish. 1984 was the year, and Michael Jackson, Madonna and Duran Duran were my heroes until I saw the Eurythmics. To this day I have wanted to be able to rawk an Annie Lennox hair cut, but my hair is too stupid to not just stand straight up on end.

-----

In other news, there is pretty much no household chore that a couple of Cosmopolitans can't make better.

You won't get any seasonal well wishes from me. I'm not a Christian and I'm not interested. I'll be sending greetings, salutations and even gifts in the new year.

Listography 11 - List the Countries You've Visited

1. The United States of America

THE END

Yeah, not well traveled OR well read.

Since that list is lamer than the restaurants list I've decided to make up a new list.

Listography 11B - List Some the Things that Your Dream Job Will Entail

1. Work attire can be pajamas or Chanel suits or ball gowns. Tiara optional.

2. Will require lavishly catered dinners and cocktail parties.

3. Will allow me not to have to worry where the rent is coming from.

4. Will allow me to still do it even if I get sick again.

5. Will have a car and driver.

6. Will allow me to judge people without fear of recrimination.

7. Will allow me travel.

8. Will allow me to do good things for women the world over.

9. Will somehow allow me to combine misanthropy and organization.

10. Will allow me to have an entourage that I can order bowls of only green M&Ms for.

11. Will have new agencies calling me up for an opinion on the topic of the day. Regularly.

12. Will allow me at some point to tell Rex Murphy and Andrew Coyne to get stuffed.

I reserve the right to add or amend this list at any time, without notice.

I Less Than 3 my Neurologist

So, we're at the annual follow up/seeing how the mito worked phase of our relationship. We both agree that I am doing and have done remarkably well. Here's all the news that's fit to print:

1. I still have some residual optic nerve damage (but nothing to worry about because my vision is 20/20) and weakness, uncoordination and spasticity on my left side (but again nothing really to worry about because my gait is generally good and I haven't needed a cane in quite some time).

2. I am being sent to the treatment patient's group on January 15 to learn how to manage the use of needles/auto-injector because on February 1, 2010 I go on Copaxone.

3. This is, of course, if we don't decide to do another round of mitoxantrone (Novantrone) around that time because...

4. There's either a oddly shaped blood vessel where my spinal cord meets my brain stem, an old lesion that didn't show up very well on my non-tracer material MRI last year that is now showing up on my tracer material MRI now, or it's a brand new lesion.

If it is a brand new lesion I'm getting one more mitoxantrone treatment. My MRI is being sent back for "reinterpretation" given my neurologist's concerns. I won't find out about that until the new year.

Even if we decide to do one more treatment, my doctor is getting all my Pharmacare stuff set up for February so I can start then. If it's delayed another 3 months, we won't have to do the paperwork then I can just start.

5. I my disease burden has decreased minorly, and my MS doesn't really appear as individual lesions, though I counted 5 very distinct spots as we viewed it together.

So that's the long and short of it. I'm doing as well as really can be expected for someone with relapsing-remitting MS with residual deficits as a result of a profound relapse almost a year ago.

Not looking forward to needles, but if it keeps me from a relapse for even a day longer than I would've had without it, I'm okay with that. With help from Pharmacare, it shouldn't be too much of a financial burden either.

Also,

a day or two ago I posted this story, about the University of British Columbia (UBC) putting together a proposal to study CCSVI at the clinic where I am a patient. I asked my neurologist about it and she was interested, but cautious.

She was pleased to hear that I don't think that this is *THE ANSWER* but perhaps *an answer* and that I was still confused by what CCSVI doesn't explain. She did write in my file that I was interested in being a participant in any study that does happen - but she did caution me on a couple of things.

a) This proposed study has no funding, no protocol and no ethical review yet. It's going to be be March before they even know how many people they are going to let in, let alone the scope of the study.

b) A vascular surgeon at UBC who has done angioplasty on veins, but not the inner jugular or azygos (chest) veins, thinks that the possibility of stroke or stroke leading to death with the "Liberation Procedure" could be as high as 1 in 100. Angioplasty on other less dangerously located veins have a stroke/death odds of about 1 in 1000 to 5000.

Sobering odds, really.

So that is the State of Lori's Brain n' such for the fiscal year ending December 31, 2010. Profits and output have improved 100000000000000000000000000000000 times from this time last year.