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.

Listography 10 - List your Favourite Restaurants

I'm not really what you would call a "foodie". By this I mean I prefer to eat food cooked by someone else but I never really get attached to a restaurant. I am more attached to a style of cuisine. Every single time I find an establishment that I love more than anything, the food begins to SUCK or something bad happens.

That happened with my favourite Italian place on Queen St.
That happened with Sala Thai on Burrard.
That happened with Red Fort on Queensway.
That happened with Sushi King on the Drive.
That happened with Subeez over by the library.
Kishu Island Sushi burned to the ground a month or so ago.

So I am not going to curse any of the places I currently love by making it known that I love them.

To be honest though, I'm just as happy to grab a burger at Wendy's or heat some rice stuff up in the microwave. I tend to look at food as fuel and a headache preventative rather than something to be fussed about. If I am hungry and it takes more than 30 seconds thought and 5 to 10 minutes to prepare and get to eating, I'm just as likely not to eat at all.

Of course, I make the exception for purveyors of food that deliver to my house. I'll wait 30 to 45 minutes for that.

I hope the next list is more interesting for all of us.

MS-iversary

My life completely changed one year ago today.

I knew I was sick, and was fairly certain it was MS, but I wanted it to be something "fixable" - something that I could get medication or surgery for and it would be gone. I wanted that more than anything even though I knew deep down that it wasn't fixable. I wouldn't even speak the words or share what I suspected because I wanted it to be something fixable.

If it weren't for Joe, Mum, Dad, Joe's parents and Nicole I would not have made it through my diagnosis, sickness and recovery. My friends have been extremely loving and patient this year and I cannot believe how a misanthrope like me has ended up with such amazing people in her life.

I am a lot better today, probably even better than I was 18 months ago. I get dizzy pretty easy, I lose my balance for no apparent reason, I get weird stabby/shooting pain in my shoulders and biceps, and my hips/upper thighs are bruised from running into the corners of furniture and fixtures, but that's pretty much it.

No fatigue.
No heat sensitivity.
No nerve fatigue on short walks, or when I stand for a long time. I can even get through a medium length walk without foot drop.

This year has been hell on wheels, but thanks to mitoxantrone, yoga and physiotherapy techniques, Wellbutrin and opting more often for healthy food options, I'm feeling pretty good.

This might just be the anti-depressants talking, but I'm feeling pretty positive about 2010.

Thursday is my 1 year check up/follow up after mitoxantrone treatment #5, so we'll see if my brains are still there, we'll see if my body is actually moving as well as I think it is and we'll talk about Copaxone or whatever until they find a cure.

A cure is my only hope, because I know with certainty that this "pretty good" isn't going to last. I don't know how long I've got before it all goes to shit, but that is the truth. It *is* going to go all to shit. That's MS. That's what makes me crazy.

Donate now to the MS Society of Canada

Donate now to the National MS Society

Donate now to the MS Society



End MS

Questions

I posted this terrific post by Wheelchair Kamikaze regarding CCSVI to a couple of Facebook groups. This post is thorough and thoughtful and explains better than I could why I am cautiously optimistic about CCSVI and the "Liberation procedure" but not completely sold.

I was then attacked via Facebook messages by people who were completely happy to drink the Zamboni Flavor Aid and were *ANGRY* at me for not being as thrilled and ecstatic about the *cure* as they were.

Oh "ye of little faith"! I, like a lot of us with M.S., am very excited about this treatment if only for the spotlight that this discovery casts on this disease! Don't dash our hopes with your negativity!

That's the only one I didn't delete. The other ones were just fucking rude, like I was purposely trying to piss all over their day by pointing out the obvious unknowns about CCSVI!

I was told that I must be so incredibly disabled that I've just lost all hope and now I can't stand to see other people happy.

I was told that I just needed to get on the MS Recovery Diet and I'll never have an attack again.

I was told to "Think Positively", "Accept Jesus into (my) heart!" and "Count my Blessings! (I'm) not Dying!"

(All Y'all KNOW how much I love being "Brightsided". Fucking gives me the warm fuzzies ALL OVER.)

To recap, all I did was share a well thought out and researched post about CCSVI and then people felt it necessary to send me messages trying to make me feel bad for not believing what they believe.

WHY do people do that?

I disagree with a LOT of what people post to the internet (I have a Twitter account for crying out loud.) but I don't find it necessary to privately message them to tell them that they are wrong for what they think or believe about their own medical condition, even if they are wrong and I know that they will suffer for it. ;)

It's not like I'm some Glen Beck fan spouting crazy in public.




PS.

I'll be back tomorrow, it's a big day.

Listography 9 - List the People You Love the Most

(Other than the first three the remainder of the list is random as long as its understood that I love Lady Gaga MORE than Simon, Finn and Virgil. Possibly combined.)

1. Joe Kidwell
2. My mum.
3. My grandma.
4. Erin
5. Drew
6. Joe's mum.
7. Lady Gaga
8. Simon
9. Smart people.
10. Mrs. Gillespie (though I'm pretty sure she's dead. What the hell, I'll add dead people to this list.)
11. Finn
12. Whomever created the Colagallo. (It's a cocktail that includes tequila AND Coca-Cola!)
13. Louise Arbour
14. Coco Chanel (see? More dead people!)
15. Virgil
16. Cathy Hickson (also dead, but most of you don't know her)
17. Sherry Trafford? Meuris?
18. Christian Louboutin
19. Oscar
20. Ben
21. Donna

"If you say you're not a feminist, you're almost denying your own existence...

...To be a feminist is to be alive."

- Margaret Cho

It was almost 20 years ago *exactly* that I had my first feminist awakening, though I wouldn't have called it that at the the time. I was 15 and passionate about very little but partying, carrying on and trying to be accepted by my peer group. I had had my introduction to the greater human rights community about a year earlier, but it was all a little bit "big" for me to get my head around . The problems of the women of the world certainly would never come to affect me and my life in small town Ontario.

I'm not sure if it was the next day or the day after that that I saw the newspapers and saw the "honour roll" of young women's faces, with their names and ages listed below, but the events at École Polytechnique on December 6, 1989 changed my life forever even though I was miles and miles from the blood and fear. What was becoming clear to me was the fact that there were men in this world who hated me.

They hated me, not because I had done anything to harm them, but because I was a female who had the crazy idea that women were equal to, but different from, men. I was young teenager moving far too quickly to adulthood, but I understood at that moment, on that day...

by looking at the faces, the names and the ages on the front page of the newspaper...

that my life as a woman in Canada would never be the same.

I was 15 years old and I was taught the lessons...

- that there were men in my own country who would like to kill me for going to school.

- that there were men in my own country who were threatened by my mere existence on this planet.

- that there were men in my own country who saw me only as a house cleaning, 5'6" blow job & baby birthing machine, there to pander to the whim of any man who would graciously have me.

That's a big moment. That's the kind of moment that inspires fear and loathing, but also a little bit of hope.

By the time I was 25 I had fully embraced the feminist descriptor for myself, but it probably took me another 5 or 10 to fully accept the responsibility that goes with that.

I'm not a "Feminism 101" type, but I do subscribe to the radical notion that women are human and equal and have the right and ability to make their own choices... even if those choices aren't what I would agree with. Autonomy and choice. That's what feminism is to me.

When I think Geneviève, Hélène, Nathalie, Barbara, Anne-Marie, Maud , Maryse, Maryse, Anne-Marie, Sonia, Michèle, Annie, Annie and Barbara, I'm sorry that it had to come to this. I think of them often, not just on this anniversary, but when I think about the responsibility I have for my own life.

It was in their lives ending that I started my own and I feel as though I am standing on the shoulders of giants. I will never forget sitting down at my parents' kitchen table with the front page of the newspaper looking at those faces, names and ages.

I will never forget.

Listography 8 - List Things Most People Probably Don't Know About You

1. My bladder is one-third larger than it should be.
2. I only watch The Grinch Who Stole Christmas up to the point where the Grinch steals Christmas and then I change the channel.
3. My favourite holiday is my birthday, but I tell everyone its Thanksgiving.
4. Pepsi is NEVER a substitute for Coca-Cola.
5. My heroes are Louise Arbour, Margaret Cho and Joe Kidwell.
6. I know the lyrics to every Def Leppard song from the Pyromania and Hysteria albums.
7. I don't like plain chocolate, even really expensive plain chocolate. I need to have nuts, caramel or nougat in it for me to eat chocolate.
8. I've never had cornbread. I had never had biscuits and gravy until I was 33.
9. I am pro-gun control mostly because people like me should never be allowed to own guns.
10. I cry every day, but I never do it in front of anyone.
11. I realized that I felt bad about not having a relationship with either of my sisters because it makes my mum feel bad, but I would LOVE to have a greater relationship with my brother.

Listography 7 - List the strangest places you've had sex

Uh, mum?

Hi.

I'm not going to do this list. For your safety and mine.

Not that I am a member of the mile high club or anything, it's just that you might read this and that would be gross.

Quick update:

1. I am working 40 hours a week for an over 80 year old accountant. Yeah, it's as fun as it sounds.

2. Fatigue and heat sensitivity are still largely at bay.

3. I know what I have to do but I really lack the discipline and/or interest to do it.

4. Football day has inspired me to dance to ABBA, Lady Gaga, Diana Ross and Madonna. I also got the much needed manicure and pedicure out of the way.

5. I've figured out that wine isn't really for me, so I'm going to become a connoisseur of cocktails.

6. I've decided that whatever it is I end up doing with my life, it should come with a large gay following.

7. I cut my left index finger in a tragic bagel incident a few days ago and man is it gross. I just changed the dressing today and realized I probably should have went for a stitch or some glue. Meh.

8. I don't think there is a number 8. I can't think of anything else.

9. Any questions?

Listography 6 - List your biggest fears

I briefly considered numbering these, but rejected the idea. I know I have fears, I am unsure that I want to know how many.

I will go blind again.
I will lose the ability to walk.
I will lose my mind.
I will amount to nothing.
I will hate every job I have for the rest of my working life.
My working life won't be as long as it could've been.
I will always be fat.
I will never walk in heels again.
Some how, some way, my love of cosmetics is the reason why I got MS.
Getting blown up by a bomb.
Freezing to death.
Living past age 90.
I have ruined Joe's life.
Ugly shoes will be all I can safely wear.
Conservative Christians of the Batshit Crazy variety.
I'll never figure out how to translate misanthropy and organization into a money making venture.
Stephen Harper and his Conservatives with a majority government.
NASCAR
Wal Mart
I will be arrested and charged with a crime I did not commit.

CCSVI and MS

I'm afraid that a whole lot of people are going to be disappointed. There is absolutely no evidence, even Dr. Zamboni's research, that this procedure works for everyone.

Dr. Zamboni says that it works for people who's narrowing of the veins doesn't come back but what wasn't on the show was that 80% of the people who have had this surgery in California have the narrowing come back. Their symptoms may be less severe, but they're not "cured".

There's also a side effect of neck and shoulder problems for some people that should also be investigated before we start handing out this surgery for everyone and their brother with MS.

There's also no evidence that the procedure does anything to help with damage to the brain or undoing scar tissue. This answer also doesn't solve the mystery of MS's geographic and gender biases, the genetic factors, the connection to Guillain–Barré or Epstein-Barr, or even gluten, egg or dairy allergies or sensitivities. This very simple answer doesn't even begin to unravel the web of possibilities with MS.

Please, for the love of Pete, don't pin your hopes on this being "THE ANSWER". It is probably more like "one of a few answers".

End MS

CTV News program W5 investigates intriguing new theory about MS

For now, MS Societies in Canada and the U.S. have reacted cautiously to the research,, saying there is "insufficient evidence to suggest this phenomenon is the cause of MS" and discouraging patients from getting tested or seeking treatment.

But the researchers testing Zamboni's theory believe they're on to something that could change the future for MS patients around the world.

The report will be up on the CTV - W5 website after the show airs Saturday, November 21, 2009.

Listography 5 - List your past jobs

At some point in your working life you just have to admit to yourself that your personality is not well suited to certain forms of human interaction and then try desperately to earn a living that doesn't make you want to kill yourself.

I have yet to find that way. So here is my list of crazy bosses jobs I have had since moving to BC.

1. Actually, my first boss was pretty cool. HER boss was a little nuts. But it was retail sales in the mall closest to the richest people. Meeting sales quotas was easy. Then the boss sued the parent company, the parent company shut the store down, and we were all out of jobs. I was two weeks short of qualifying for any kind of severance.

2. Receptionist for a biotech firm. My boss was anal retentive to the point where a fax sent to order lunch had to be typed and approved by her. Because hand written could send the wrong message. I quit after three months to take...

3. Secretary to a union. This job started out great. The hours were good, the pay was good, the benefits excellent. Then the boss started getting angry at me for things that had happened 6 months earlier that I we had already resolved. The final straw - I caught him doing something illegal in the lunch room the day before I told his wife he was in Edmonton when he had told her he was at his place in the US. I thought he was having an affair. I ended up getting very sick with an intestinal parasite and instead of returning to work 6 weeks later I was laid off.

Odd twist to this little story. The guy is now doing time. Not an affair after all.

4. I did some temping at UBC and various and sundry mining companies sitting in front of phones that didn't ring.

5. Legal services. My boss had unrealistic expectations of how thorough my training was by a woman who hated me literally on sight. My department went bye-bye a year and a bit later, and I got my next job while I was still getting severance from this one.

6. CARTOONS. Actually, no one involved in this workplace was crazy. I so wish this had been more of a job. Getting to help with the creation of a Saturday morning cartoon and the related merchandising was very cool. Too bad that what there was to do wasn't enough to justify a full time job. Fun workplace though. Three month contract ended up turning into nothing.

7. NFP business association. I thought that the board was cool, but it turns out they're screwing me over for a reference because I got sick with MS 6 months into my employment there. My boss and I didn't really get along, and apparently the boss wins over the hired help in those circles.

8. Pirate chasing! A great opportunity to find out if I had the energy and stamina to take on the working world again, and I can and I am back out in that world. Donna and crew are a bit geekier than I'm used to, but a righteous bunch of people who seemed happy with my work. Sad that there's no way to sign on as a full time employee, because I would do it in a second.

9. Assistant to an accountant. - Dial-up internet, foot powered dictaphone transcription, technology explanations that go no where and being treated like I'm a fucking tool because the 8 year old software busted today, the company no longer supports that version, and doesn't offer support advice for any product in that line before 2004. When I tell the accountant who's the admin on that program, she takes all the information I gathered, talks to me like I'm lying, calls the company tech support again and gets told the *exact* *same* *thing* and then continues to tell me how to file, how to make labels, and how to make coffee like I'm new.

Here I am again with a job I hate because its the only opportunity that's presented itself. I got the head up on a federal government temp job, which I have just spent a half hour making my resume boring enough to show that I meet the Merit Criteria.

Hopefully my Employment Equity (EE) status pushes me over the top.

Not that working for The Man seems like fulfillment of a lifelong dream, but at least I'll be adequately compensated for my time. Because, when its all said and done, a little financial security can go a long way at allowing me to keep my wits about me.

Reviewing this list is really depressing. Eight jobs in just over 6 years, though I'm not sure if 3 of them count. (Retail, biotech and cartoons) So 5 jobs in 6 years. That's depressing. It really drives home how stupid my life is.

I'm going to eat one of my 77 pieces of Halloween candy.

Stuck

For about 10 years now I've been stuck on a treadmill life.

As I was making my way on public transit today I realized how many times I've been *here*. Not on the 99B, though I've been on it a lot, but here in this same situation.

I'm stuck in a job that I hate for not enough money because I don't have the credentials to do something more interesting.

(notice I said credentials, not skills)

This is what a 155 IQ and problems with authority will get you, folks.

Perhaps there's a living to be made as a cautionary tale?

I continue to work my ass off for this man. I will continue looking for a better job.
I am working full time to no ill effect manly because I can now and there's no guarantee how long I will be able to do this. So I will do everything to my fullest ability today because I know that the MS monster lurks in the shadows and will eventually take everything from me.

Really, if the world ends in 2012, I'm totally okay with that.

Listography 4 - List your favourite films

This list is by no means exhaustive, and other than the first one, are listed in no particular order. The list is mostly the films I will watch again and again.

1. Casablanca - Hands down my favourite movie. I have watched in dozens of times and will drop anything I am doing to watch it if I come across it on TV. I aspire to write such a timeless screenplay, knowing full well I never will. Romance, international conflict, unrequited love, smoking, espionage, bizarre love triangle, snarky best friends, drinking and Nazis = perfect.

(here's where it gets random... just as they pop into my head.)

Superbad - I laughed until I cried and fell in love with Seth Rogan in the meantime.

Chasing Amy - Because I've been my own version of Alyssa. Because I've chased an Amy. I've been the chased Amy.

Bitch, what you don't know about me I can just about squeeze in the Grand fucking Canyon.

Sick: The Life & Death of Bob Flanagan, Supermasochist - I saw this movie a while after one of my life's closest friends died of Cystic Fibrosis. Bob Flanagan was the oldest living survivor of CF when he died at the age of 44. He and his friends and family believed that it was his daily beatings from his dominatrix wife that kept him alive as long as he was. He also does something very *graphic* with a hammer, nail and pressure treated lumber. (shudder) Long story long, the last little bit of the film shows his death in fairly disturbing terms.

I hadn't been there for my friend as she was dying, but I felt like watching that film somehow closed that book for me, and I could stop feeling guilty about not being there when she died. I remember walking the couple of blocks from the theatre to the car with my date in absolute silence because anything I had to say about the film wouldn't say enough.

Being John Malkovich Because John Malkovich is creepy and being him would be terrifying.

Bill and Ted's Excellent Adventure - Teenage escapist fare. Strange things are afoot at the Circle K.

Michael Clayton - because I do love me some good legal drama.

Reservoir Dogs - a film about a jewelery store robbery that never takes place in a jewelery store is a brilliant piece of film making.

I'm the One That I Want - Margaret Cho saved my life two days before my 30th birthday with this quote.

I’m not going to die because I failed as someone else. I’m going to succeed as myself.

It's getting close to shut down time here, so I think I'm going to end it with an explanation free list

Baise Moi
Brave Little Toaster
Hotel Rwanda
Bad Lieutenant
Sin City
Breakfast at Tiffany's
American History X
The Godfather II
The Shawshank Redemption
Todo sobre mi madre (All About my Mother)
Roman Holiday
William Shakespear's Romeo and Juliet
Taxi Driver
Double Indemnity
Priscilla, Queen of the Desert
One Flew Over the Cuckoo's Nest
The Usual Suspects
Happy Gillmore
Lock, Stock and Two Smokin Barrels
Gran Torino
Fubar
The Sweet Hereafter
Dazed and Confused
The Sixth Sense
Paris is Burning
To Kill a Mockingbird
Monty Python and the Holy Grail
Seven
The Sound of Music
12 Angry Men
Silence of the Lambs
Ferris Bueller's Day Off
LA Confidential
The Jungle Book

In honour of the 114,433 Canadians who have died in service of our nation

They shall grow not old, as we that are left grow old;

Age shall not weary them, nor the years condemn.

At the going down of the sun and in the morning.

We will remember them.

And furthermore,

I didn't get the job because I physically couldn't walk to her office and wouldn't have been able to get there if there was anything like snow at all.

Joe is going to quit school after this semester because even if I get a job he can't rely on me to stay employed. After we get caught up he'll figure out how to go back part time.

I have failed. Everything I promised Joe when he moved here is now lost. If it wasn't just another fucking expense I would kill myself. I'm pretty much useless now if I can't even pull my own weight around here.

My dad is right. I totally deserve this because this is the life that I chose and I failed to plan for all possible outcomes.

I feel like I've been repeatedly punched in the face. I can't stop crying. I feel like I'm standing on the edge of losing absolutely everything.

Kill me now.

I have just been rejected by the Province of BC for disability benefits because Joe is a full-time student. The requirement is that we have to apply for regular welfare benefits as a family and then see if I can get the disability supplement on top of that. Between the two of us we would be allowed to make $500 a month. I can feel free to re-apply when he quits school to look for gainful employment.

The application for Canada Pension Plan disability benefits will take 3 to 6 months and I will probably have to appeal that, making it a year or more before I either get a cheque or am told I don't qualify. (I've been told that people with MS not in wheelchairs are rejected close to 75% of the time, and only win appeals in 30% of those cases.)

MS has destroyed my life, and now it's quickly destroying Joe's. If I don't find a job very, very quickly, everything we have will be gone- our apartment, our electricity, phones and internet. I have 8 days to come up with a plan before everything starts to be taken away from us.

Joe doesn't deserve this. He deserves a good wife who can fulfill the promises she made him when he moved to this godforsaken country.

I need a job. That's the only option at this point.

A Note to You:

H1N1 - If you know me and are thinking about coming to visit when you don't feel well, please refrain. I have been immuno-suppressed for the past week and only now is my immune system on the rebound. Due to this I can't receive my vaccine for another week to 10 days and I can't receive a seasonal flu shot until mid-December. I also don't shake hands any more, and limit my physical contact with people who have daily contact with children or at-risk communities. I'm not trying to be rude, I'm just trying to prevent getting sick.

Thanks.

Listography 3 - List places you have lived.

1. Peterborough, ON. I was born at Peterborough Civic Hospital (now Peterborough Regional Health Centre) I lived there for most of the time between 1974 and 1992 and then off and on for periods of three years to 8 months from 1993 through 2000. Most of my memories from this time in my life are unpleasant, either because someone was treating me badly or I was treating them badly.

2. Oshawa, ON. From 2000 to 2001 then to Whitby, ON until 2002. From 1998 through this time I would also stay for prolonged periods with friends in the village in Toronto. It was during this period that I came to embrace my inner fabulous and seize the powers of my Urban Diva-ness. Sadly, those powers were nothing against the Kryptonite that was...

3. Trent Hills, ON 2002 to 2003. The place made me damn near suicidal, and I was happy at that point in my life. Everything that was at least 90 mins away.

4. Belleville, ON Three months in 2003, between the end of my relationship that had me living in Trent Hills and my move to...

5. North Vancouver, BC I lived there for 6 months.

6. Vancouver, BC I moved back in with the man I lived with in Trent Hills only this time in the People's Republic of East Van. We were not romantically involved, but we didn't break up because we couldn't live together, we broke up because we were both headed in different directions.

Oddly, that direction was west to Vancouver, in the same apartment.

*shrug*

In September, 2005 I moved three doors down from that place in advance of Joe moving to Canada and us getting married.

I love our converted storefront. Small enough that the rent isn't outrageous. Large enough that we can both get our own space. It's cool. Ground floor, no stairs so even when my MS is bad I can still get from my living room to my bedroom with little trouble.

Thankfully, this list wasn't a list of addresses where I had lived. The internet might run out of space.

Listography 2 -List your closest friends

(I stopped having "best friends" when I was 20. So this is a list of the people that I enjoy spending time with for various and sundry reasons.)

1. Joe - he's my husband, the only person in my life I see daily, and I think he's hot.

2. Simon - he's my upstairs neighbour, the only person in my life I see 3 or 4 times a week, and I used to be his live in girlfriend. I've learned to edit what I say to him much more than I did when we were together, and he's not attractive to me anymore since he grew the beard back.

3. Donna - she's my boss lady, and I find her funny, engaging and I agree with her more often than I don't. She's also got a killer smile.

4. Erin - she's my friend because she is funny and I disagree with her more often than I do. She's also a good sport when my husband man-handles her. (That's his way of showing affection. He only man-handles the ones he loves.)

5. Jeanine - she's the best person to watch hockey with and I don't do it nearly enough.

6. Sam - he's the sweetest fellow I know, a wonderful influence on Joe and I don't get to spend nearly enough time with him. If he convinces John Waters to adopt him, I hope he'll find a way for me to become his sister.

7. Sarah - she's my peer support volunteer from the MS Society of Canada - BC and Yukon Territory. She's really good at reminding me that I have limits but not limitations, though sometimes I think she isn't comfortable with how able I am and she is not.

8. The Fox - a new friend via the internet, it is really interesting and comforting to find that there are other people in the world who understand the basics of where you've been and where you want to go.

Like the late 70s, early 80s sitcom

Eight is Enough

Hey...

Happiest of Happy Birthdays, B.

ANNOUNCEMENT.

1. I have given up eating Skittles (or microwave popcorn) and Coke for dinner. I still eat mostly snack foods, but those foods tend to be fruit plates and selections from the olive bar.

2. While "athletic" will never be a word used to describe me in this life of mine, I ran today. I never was a sprinter or anything, but what I did was as close to those institutionalized torture sessions they used to make me do in grade 8 as it has ever been. I made the bus too. (Which other than an ice cream truck is the only vehicle I've ever found it necessary to chase.)

Anniversaries & Listography

I quit smoking two years ago today. It is (unfortunately?) how I remember my friend Erin's birthday. Happy Birthday Erin, Happy Smokefree Days to me.

A while ago I got a book called "Listography" from Chapters or some such thing. Turns out the author of the book also runs a website called listography.com which is kind of neat. I bought it because I thought it would be blogger fodder but ignored it... for more than a year.

Now I've decided that every 5 days or so I will do a list from "Listography: Your Life in Lists". This is today's list.

List the Pets You've had & Their Names

1. Puff - german shepherd/husky cross who died when I was around 5, I think. I've been told that I was with her when she was hit by a car, but all I remember is a strange lady taking me to the Gunter's house and asking them if they knew who I was and where I lived. I was more than a block from my house and the only possible way I could've got there was to run through the woods and down the hill through someone else's back yard on to Water St.

2. Wendel - a goldfish named after the star of all the sports pages during a time that I flirted with being a Leafs fan (like my dad would've let *that* happen). Wendel met a tragic end when the neighbour we had entrusted to watch all three of our goldfish (Julie & Tracey each had their own) when we were on vacation left them in a sunny window on a sunny day and made goldfish soup. (I forgave you a long time ago Mrs. Ralph)

3. Sadie - border collie/something-or-other cross that was our early Christmas present in 1986 (man, if I got that year wrong, mum's going to have words with me) She was a good dog, who loved mum and dad totally differently, could hog a bed like you wouldn't believe and loved to play "goalie". She would lay in front of the fridge, we would sit at the opposite end of the kitchen and we would roll pieces of kibble at her and she would "stop" them by eating them... except when she missed. I wonder how many peices of abandoned kibble were found when mum & dad replaced their fridge a while ago. It still breaks my heart to think of the last time I saw her.

4. Bast - completely grey with yellow eyes short-haired domestic who lived with me on McDonnell street. When my crazy live-in brought a dog home, she chewed her way through a screen that night, and was never seen or heard from again.

5. Casper - actually Simon's border collie/something-or-other cross with blue eyes that was part mine when I lived with Simon. He was a great dog. Did weird, flaked out things, was overly devoted to Simon but was just so happy to be anywhere, except when Simon was being boring. Which was a lot of the time. He died in May 2008. It still breaks my heart to think of the last time I saw him too.

6. Lemony - completely grey with yellow eyes whose ears had fallen off because of frostbite short-haired domestic who lived with me in Belleville. When I decided that I was going to move to Vancouver, my roommate said she couldn't come to her house, so Finn made arrangements to have her stay with friends of his until I got "settled". When I finally got settled the people with the cat had moved and I wasn't speaking to Finn. When I finally figured out who had the cat it was more than a year later and she was really, really happy ruling the roost over three other cats and having the run of a very, very cat friendly home (it had a kitty hamster trail and I just can't compete with that). I miss her and look for her doppelganger at least weekly. Well, except her doppelganger has ears. I hope she's okay.

It appears that I am bad luck to dogs and fish, and cats would rather live than anyone but me.

Weird.

Fear and my Soapbox

MS scares the shit out of me every single day. As I type this the last two toes of my right foot are moving in spasm and the big toe feels as though a very low electrical charge is flowing through it. It's taking every bit of my rational mind not to panic and just start crying because the treatments haven't worked and this is just a sign that things are getting worse. Again.

I'm working my ass off trying to get my life and my body back and it just feels like nothing is working. I still get foot drop when I walk too far and "too far" is highly subjective from day to day. Sometimes it's an hour, sometimes it's to the end of the block and back. Most of the time it's 30 or 40 minutes, but that's not consistent.

What drives me nuts the most is that I never know how much I can commit to on any given day. Some days I have way more hours in the day than I have stuff to do and some days making one plan is more than I can handle. I just don't know how I'm ever going to be able to get right with my life and my future if I can't fix this. It feels like this is killing my will to live one little tiny disappointment at a time. How am I going to live like this, given all the things that I have committed to? The following might explain where I am going with this.

After watching snippets of President Obama's speech to the Human Rights Campaign this morning I realized how fortunate I am, again, that I live in Canada and that Joe made the choice to move here rather than me moving to the US.

I am in a heterosexual union with a partner who immigrated from the US after I sponsored him to come here. I have MS (duh) that was diagnosed after that marriage and sponsorship happened and lost my job because of it. My spouse is a full-time student at one of the best comprehensive universities in the country while I look for work.

If we were a same sex couple, I still could've sponsored him for immigration. He still would have been covered under my extended health care coverage offered by my employer. He still could've had me covered under the plan he now has from the university. He still would've had the right to make medical decisions for me, help manage my care, and have the right to get updates and notification about my situation if I were hospitalized. It would just happen. There would be no debate. He is my spouse, and it doesn't matter what our biology is.

My entire adult (post my 18th birthday) life I have had the following:

1. Unfettered access to a publicly funded health care system.
2. Unfettered access to no cost birth control, reproductive health advice and care and abortion if necessary.
3. Access to unemployment benefits and sick leave.
4. The right to have any relationship recognized by the state as valid with all the same the rights of a common-law relationship, which have the same legal rights as marriage. Since just before my 29th birthday the right to marry that person without it being separate but equal in both provinces I have lived. Since just before my 31st birthday that right was granted nation-wide.
5. The right to serve in the nation's military, regardless of sexual orientation or gender identity. And as such, if I can pass the same training as everyone else I could be combat infantry, even though I have ovaries.

(Side note: There have same sex marriages in both the Canadian Forces and the Royal Canadian Mounted Police force. In 2008, CF members marched in the Pride parades in Toronto and Vancouver, and in 2009 the Pride parades in Toronto, Vancouver & Montreal. Pride festivals are now a part of the Forces annual recruitment efforts.)

6. As Canadian citizen, the right to vote in every election, regardless of previous criminal history and, in the case of long term incarceration since 2002, to vote from inside prison.
7. Lived in a country that does not have state-sponsored murder.

I have said before that Joe and I would be bankrupt if I had got sick in the US. I have said before that to consider gay marriages an aberration against nature is to consider my heterosexual marriage one too because we aren't having children "naturally" either and our vows were purposely not religious. I have said before that anyone who wants to sign up to defend my nation's sovereignty should be allowed to do that. I have said before that if you stop treating people like animals they will stand up like men and women. I have said before that equalizing access to opportunity will do more to further women's equality than all the quotas in the world.

I suspect sometimes that my life is easier than the lives of many of the women I know in the US. I suspect that, even though I live in a country with limited access to firearms and has hate speech/crime laws that are enforced, I have more personal freedom than many of the people I know in the US. As Joe gets closer to graduation, the lingering question of where we will live in the next phase of our lives hangs over my head like cloud of uncomfortable uncertainty. I am not sure that I am okay with the idea of moving to a nation where the very laws of the nation clash so completely with every notion of civil liberty that I have known my entire life.

How can I even expect that that government would let me in, given my long-term chronic illness and unknown prognosis?

How can I expect Joe to give up his dreams or possibilities because of my unwillingness to pay taxes into a system I disagree with at best or their denial of me because of my broken body at worst?

I don't want to use MS as an excuse for not doing something, but I do it all the time. I've given up on the idea of going to school because the province has gutted the financial supports for students with disabilities, I'm not sure I could keep up academically with my intermittent ability to walk, the potential for crushing fatigue and the fact that most disability support programs aren't designed to deal with someone who's well one hour/day/week/month and then unable to function the next hour/day/week/month.

I know I told Joe from day one that I wouldn't live in the US under any circumstances, but I softened on that because in marriages you make compromises. I'm not sure that I can compromise on this, and I'm not sure the US government will let me anyway.

After typing all this I realize that I am probably worrying about nothing. Joe and I aren't going anywhere for the time being. I haven't got a job yet, so I don't know what kind of options I'm going to have personally. Everything is just up in the air, and until I have a better idea of what kind of future I am going to have in this body, things are just too unsettled for plans.

Next mitoxantrone (Novantrone) treatment is this coming Thursday. MRI is Nov. 23. Neuro follow up is December 17. Will I know better where I stand at that point? I don't know. I'm not sure that there's anything that she can say or do that is going to make me feel better about my future or the choices I will have to make, given that MS is going to affect every decision.

MSucks.

(Unrelated PS: I prefer Starbucks' new VIA Ready Brew instant coffee to their regular stuff. It's not the best coffee I've ever had, but in a pinch for either coffee or time, I'd take this stuff over their store beans or brew any day.)

Anniversaries

(a photo of us during our fifth date, I think)

Almost five years ago I made the acquaintance of a man online. It seemed like a fairly harmless flirtation.



About month later Joe had flown from half way across the continent and kissed me in my kitchen in front of my fridge. I was smitten.

Six weeks after that, he met me at the arrivals area at the Humphrey Terminal of the Minneapolis-St. Paul International Airport. It was March. I knew that if I was leaving British Columbia in March to visit a man in Minnesota he must have been special indeed.

Two days before I left the Twin Cities he said to me, "So I guess we're going to have to get married, right?" If we were going to be able to live in the same place with each other, yeah, that was the only way.

In late May I flew to Cincinnati, Ohio for me to meet his family and we drove to points across Eastern Ontario to introduce him to my family. He had a lot going on for him that summer. Quitting his job, moving to Ohio, donating his mom a kidney, moving to Canada and getting married. All that went down for him between July 7 and October 8. He totally kept it together.

We were married at moonrise on the BC Ferry Queen of Capilano during its 17 minute sail from Horseshoe Bay to Bowen Island. The bride and the groom wore black and red. We stopped for a drink, got back on the next ferry, and headed to North Van for a night of oversized tiki drinks at Raglan's. It was low key, perfect and cost less than $500.

Around our first anniversary I was pretty convinced that if we weren't married and/or were both from the country we lived in we wouldn't be together anymore.

Around our second anniversary I think we both had learned a lot and were starting to consider the long term benefits of pairbonding.

Around our third anniversary I was so tired and so weak, I don't remember if there was any sort of celebration at all. We had a small thanksgiving with Simon and Ben, our best men, and called it a night.

Yesterday when I woke up he had been awake for a while. While I was pulling on some clothes to guard against the morning chills, he came into our room, put his arms around me, kissed me and wished me a happy anniversary. He didn't let go for quite a while. I told him I love him, and he said it back. And then we carried on with our plans for the day.

If there's one thing that this fourth year of marriage has taught me its that the world and its problems are easier to deal with in pairs. I also keep thinking about the two things my grandmother told me about marriage.

1) Remember that all the things he does today that annoy me will be the things that I will miss when he is dead.

2) Character is more important than personality.

Joe is a man of good character. Our relationship is very different than the one we had in those heady days of trying to deal with a cross-border, long-distance relationship as we prepped a wedding and the paperwork for his move to Canada.

We've become boring. We have different priorities; because we're older, because we've both put on a little weight, because I'm sicker, because he's a student, because I'm unemployed. It's his good character that has allowed him to roll with these changes and not act like he's been short changed. If he feels that way, I can't tell from the way he treats me and he's never said so.

I can say, without hesitation, that I love him differently than when we married, but definitely more. I have been (I am so not comfortable with this word) blessed by this man. Not that I think some super-natural force put us together, but because our accidental meeting on forum board in the middle of the internet has brought gifts and good fortune to my life. Things I would not have found with anyone else, I know for certain.

"Do you want me to tell you something really subversive? Love is everything it's cracked up to be. That's why people are so cynical about it... It really is worth fighting for, being brave for, risking everything for. And the trouble is, if you don't risk anything, you risk even more."

Erica Jong - How To Save Your Own Life

If you're reading this Joe, know that you are "the mutha fuckin' love of my LIFE". No question, no doubt. Lets hope that next year is better than the last.

Maybe if I can post by email...

I will update this thing more often.

I wonder what the Vegas odds are on that?

Simply...

No great thing is created suddenly.

—Epictetus (A.D.200)

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.

GO HABS GO!

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.

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.

Differences

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.

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.

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.

http://bit.ly/X4eFq

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.

The Mind Boggles

Next weekend (Labour Day) is the 3 Day Novel Contest. I won't be entering this year because I won't have the money to enter until a week after the contest is over. That sucks.

I had my second appointment with my employment counsellor. Apparently I only get 45 mins with her, and I spent 35 of those minutes just trying to explain MS to her.

I ended up sending her this pdf. MS in the Workplace - a publication of the MS Society of Canada. Maybe that will free up some time during our next meeting.

I'm being sent for a "group assessment" next Monday. I have no idea.

I spent almost ALL of yesterday watching people dance on television. That was cool.

Four people have asked me "What is important to you?" in the past week.

I don't have a good answer.

The Personal is Political

I've tried really hard to just talk about me in this blog. MS has fundamentally changed every idea or dream I've ever had for myself, and I wanted to keep this blog about that. It seems that the time has arrived where my personal struggle with MS and what that means to my future has transected the political.

I am quite cognizant that the United States of America is probably the most sovereign nation on the planet and they (in the broadest sense of that word) really, really don't care what people from other countries think about them or their life, liberty and the way they pursue happiness.

That's what makes this post so hard to type. The love of my fucking LIFE is a born, raised and militarily-served American citizen. He also lives in Canada, and has for almost exactly 4 years. Together we've been watching/reading everything going on in the US as it is filtered through the Canadian media, as well as how it is filtered through CNN, MSNBC, The Daily Show and The Colbert Report. I think it is driving us both nuts.

(Fox News Network is available in Canada by subscription only on digital cable. My access to what is going on on that network is limited by what gets posted to youtube and any commentary offered up by the aforementioned media sources)

I've read that there is some concern that advertisers pulling their ads from television "news" shows under threat of boycott gives those corporations control over the news content. I'm not sure that's exactly what's going on. Sure, there is the immediacy of a boycott, but I also have to think that those companies don't want to be seen as being on the wrong side of the issues brought up by the likes of Glenn Beck. I remember seeing a PBS documentary about the history of the Coca-Cola company. In their quest for worldwide market domination, they didn't want to be seen as "Georgia hicks" and were among the first companies in that state to hire black sales people. When Martin Luther King Jr. was assassinated they knew the world would be watching, and provided much of the transportation needs of the King family during their period of public mourning. I'll bet that few people in the US or around the world know that MLK once called for a boycott of Coke. I think this speaks to the power of being on the right side history.

I've been reading that people like Rush Limbaugh, Glenn Beck, Sean Hannity, and even Governor Rick Perry (R-TX) are openly comparing a mixed race man to Adolf Hitler (the mind boggles, Rush), who's a racist who doesn't hate white people (for realz, Glenn?), who then spend hours of a national broadcast outright lying, misrepresenting and purposely misquoting anyone who disagrees with them, (but that's okay when you're on FNN, right Sean?) or suggesting that states who disagree with the current administration could secede the union if it was in their best interests (don't mess with Texas, right Governor?). Gun nuts have been encouraged to bring side arms and assault weapons to public meetings, including those held by the president. Dissent is manufactured by health insurance and petroleum companies and anyone with a tin foil hat is encouraged to "put the fear of god" into their elected officials. This includes death threats and veiled threats of other personal harm, if need be.

All the while I'm watching this, I can't help but reminded of this:

In the ongoing International Criminal Tribunal for Rwanda, the individuals behind Kangura (Kangura was a Kinyarwanda- and French-language magazine) have been accused of producing leaflets in 1992 picturing a machete and asking “What shall we do to complete the social revolution of 1959?” - a reference to the Hutu revolt that overthrew the Tutsi monarchy and the subsequent politically orchestrated communal violence that resulted in thousands of mostly Tutsi casualties and forced roughly 300,000 Tutsis to flee to neighboring Burundi and Uganda. Kangura also published the infamous "10 Hutu Commandments," which called upon Hutus to massacre Tutsis, and more generally communicated the message that the RPF (Rwandan Patriotic Front) had a devious grand strategy (one feature article was titled "Tutsi colonization plan").

"There was an FM radio on every roadblock, there were thousands of roadblocks in Rwanda," a police investigator said. He told the court that in prison interviews "many people told us they had killed because the radio had told them to kill."

At the same time the "Birthers" are using "Kenyan" as code for "nigger". Jon Voight is wondering aloud if the president is purposely trying to start a civil war as if wanting to take the country in a new, fairer, more just direction is tantamount to treason or some race-based conspiracy to get back at "the man".

Then I hear that "holy men" can inform their flock that "The same God who instituted the death penalty for murderers is the same God who instituted the death penalty for rapists and for homosexuals - sodomites, queers!" and "God... commanded it and said they should be taken out and killed." And these people can do that because of the 1st Amendment to the constitution of the United States of America. If one of this man's "followers" kills someone, I hope that he is prosecuted for murder the same way Charles Manson was. In my opinion they are both men who are a danger to society.

The world is watching, America. I know that a lot of people don't know or don't care, but they are watching. And if the country explodes in violence or even additional, needless crazy-making behaviour, the rest of the world is going to throw their hands up and just write America off as a place where the lunatics have taken over the asylum.

Why does this matter to me? As I said, I'm married to an American citizen who would like to again live in the country of his birth, and so far he says he's committed to having me, his Canadian wife, live with him.

But as the days pass and I watch all this seething resentment, racism, classism and white privilege run amok, I'm skeptical that I would like living there. See, on the surface, I'm exactly the kind of immigrant almost all Americans could live with. I'm white, of European ancestry and a born English speaker without a "hoity-toity" accent. But I'm also far more liberal than just about any American I have met (my husband included), I'm a pro-choice, sex-positive, anti-death penalty, childfree feminist, a homophile and an atheist with a disability who believes that government is what we call it when we decide to do something together for the greater good.

Not very American, huh?

What gets me right in the throat, every single time, is when I see footage on youtube of the people who attend these town halls is that they seem to think that they're advertising to all of America how great it is to be American and what is great about America.

In truth they're just showing the world the worst and most ugly side of what used to be an amazing nation of innovators, social progressives and statesmen. I used to think that President George W. Bush was an aberration in American politics, but it seems that at this time and place President Barack H. Obama is. Right now, what is right about America is seriously being eroded, undermined and beaten to a pulp by what is wrong with America.

If I do move to the US with my husband, I want it to be with hope and positivity, not with me kicking and screaming and then just doing it because I can't afford the divorce. When I was a kid, the US of A was a magical place. I'd like to feel that sense of wonder and excitement again. I know that in the grand scheme of things the complaints of one little Canadian "don't amount to a hill of beans in this world" but I felt compelled to say something. I also don't imagine that I have access to an audience that will care two minutes after reading this.

I'm saying this because I love my husband because of who he is and because of the kind of person where he was raised made him. He loves his country and wants to live there again and I want to want to live there as much as he does. I now realize that this whole post could've been summed up in one single sentence.

Get your shit together, America.

*shrug*

It pains me to no end to know that *I* know more about the contents of the healthcare reform bill before the US congress than many Americans who oppose what they think is in them. I'm Canadian, it shouldn't be so. No matter what side of the debate you are on, please find out what is really in these bills. It is important. This is a piece of public infrastructure that the US is 50 years behind the rest of the industrialized world in building so you *need* to know, as a citizen or resident, what it is you are for or against. http://www.factcheck.org/ breaks a lot of the myths and overstatements coming from both sides of the debate.

I did all my physio stuff today. I did 20 mins on the bike, and man, does my ass hurt. Adam has my eternal love for bringing me a real cycling seat, but my ass is just not in shape for biking. I don't think I've been on a bicycle since grade 10 (maybe?) until I got the stationary bike. It has been suggested that I get some bike shorts, but really, I don't think that I am that into stationary biking to commit to Spandex.

I am doing. Not what I sometimes think I should be doing. Maybe not what other people think I should be doing. I am doing. Most days I don't want to. Most days I probably don't even have to, but I do.

Mostly I'm pissed that no Canadian carrier picked up Project Runway now that it moved to Lifetime in the US.

Not a whole lot to say.

I'm kind of lost these days. As I try to reclaim my life things are not soul-crushingly bad, but just a steady stream of inconvenient and disappointing news, day after day, week after week, month after month.

I'm just really tired being disappointed. I look at the job ads and find that I am over qualified or not qualified to do much of anything in this day and age. I've passed all the physical and mental abilities tests and don't qualify for disability benefits.

Most importantly, if I can't do what I did before, what can I do? I have not a single entrepreneurial bone in my body. I am not creative or talented enough to figure out how to support myself doing something I already know how to do. (Mostly because I'm not much good at anything that someone would pay me to do.)

Today, like many days before now, I think I'm just going to go back to bed. I've done all I can for today as disappointing as that is.

Thoughts.

I need a job so incredibly bad I can taste it. I need to *do* something other than ride my stationary bike, cross-stitch, writing and playing Mafia Wars. Even FarmTown has lost its charms.

It rained today. It rained an unholy downpour that beat against the roof so loudly I couldn't hear the TV. It was beautiful straight rain that quickly over flowed the eavestroughs and reminded me of another time and place.

I am thinking about putting the parental control on CNN so neither Joe or I can lose our minds over the health care debate in the US. Attention Americans: demonize "Canadian-style" or the NHS all you want. Congress isn't offering you either kind.

Shelley's project is done in principle, but not completed enough to send. Sammy's is close to completion. I am totally stumped about what to do for Jen.

I am just finishing my second month of Wellbutrin. I have not killed myself. Success. (?)

My mom had my sister send a wedding photo of my great grandparents. My great-grandpa was quite a handsome man. My great-grandma looks sweet and happy to be with him and I think I got her nose. This continues the trend of family members that I don't look like but have features in common with.

I've been sitting here for a while wondering what else there is to say, and I really don't know. I'm still unhappy. I still get frustrated when my body doesn't work correctly. I'm tired of people trying to tell me how I should feel. I'm tired of insomnia. I'm tired of the unexpected and the randomness that goes with MS. I'm really tired of having to remember everyday that this is an illness that I'm not going to recover from. There's no treatment for this. There's really no stopping it.

I only cry a couple of times a week now, which I suppose is progress. But every time I realize that there's something wrong with me it's like a kick in the face.

Things

I had a complete mental/memory meltdown today and couldn't remember where I put anything, what clothes I was wearing the last time I had what I was looking for, or which I had done first - go to Pride or to the physiotherapist. I also found 6 lip sticks/glosses/colours while I was having my meltdown.

I used to be able to recite every phone number and postal code I've ever had, and I can't do that anymore. I think my IQ has fallen 20 points just by getting MS.

My symptoms are mostly random in nature and don't last long. The knuckle of my right thumb randomly goes numb throughout the day. This is an improvement (?) because it used be the whole thumb. I lose my balance for no reason. My legs are stiff and awkward in the morning or long periods of sitting.

In approximately 12 hours Joe will be sitting down to do his last exam of this semester. At 4 PM I get my husband back for 24 to 48 hours before he sits down and starts making music for the whole break.

I have been given a mission while Joe's at his exam tomorrow. I am to fetch him some vodka and juice and have a drink ready for him when he gets home. This semester, while not as bad as the semester of biology, has been particularly rough. We have learned that Joe is not naturally a mathematician.

Doing my at home exercises prescribed to me by the physiotherapist have not changed anything yet, but they certainly haven't made anything worse. So I keep going, but I have to change that bike seat. I know that I could cycle longer if my bum wasn't hurting so much.

Donna's present is almost done, as is Shelley's and Sammy's. Donna's requires more time, Shelley & Sammy's requires a trip to the suburbs to get to a stupid craft store. I swear big box stores and their required large footprints are the bane of my existence. Though, it does make my non-Wal-mart streak of almost 4 years much easier to maintain. (Joe and I have had portraits taken there, but it turns out they aren't Wal-mart owned, just rent space. I haven't purchased a thing at Wal-mart since I watched WAL-MART: The High Cost of Low Price. That's coming up on four years this September.

But I digress.

I need Indian food and for Jason to let me bother him a couple of times this week. I promise I won't "poke him with sticks" kind of bother.

My life feels like an endless Tuesday, except the TV programs change.

The insomnia is back. The lack of appetite is back. I don't know what to do about either of those things other than to take drugs to make it go away.

I gotta go to bed to at least fake something close to sleep.

PS.
I think I need a rhinestone encrusted cover for my BlackBerry. Badly.

Defined.

Gratitude is defined as the state of gratefulness; thankful, appreciation

Fortunate is defined as bringing something good and unforeseen; auspicious, having unexpected good fortune, lucky.

I will never be grateful for having any part of MS, not even the part that shows me I'm not as bad off as someone else with the same disease.

I, however, feel extremely fortunate that I don't have the worst of what this disease can throw at a person.

Gratitude is for the works and acts of people, fortunate is for those things no one, including me, have any control over.

If you have a problem with that, that's your problem to deal with.

If I ask for advice on a particular subject I'll take what I get, but don't you ever tell me how I should feel about something just because you think I should be looking at the world a different way. I really don't care what you think of my life. I'm just here telling it as it is, not as you think it should be.

Also, jesusfreaks who keep sending me blog replies telling me to pray and give my life over to your personal lord and saviour: I will keep deleting your replies unread.

Atheist is not a joke and it's not meant as a personal challenge to your conversion skills. As I said right up there, I'm telling it as it is, not as you think it should be. Kindly, go sell your crazy somewhere else. We're all full up here.

I had something totally different I wanted to talk about, but the replies to my last post (of which only one was suitable for publishing) just made me so angry at humans (again) that I just had to say something (again) about the arrogant nature of humanity. We all think that our particular world view is best for everyone. Though, I'm pretty sure that I don't want to live in a world full of people who think like me. Maybe just 20%, so the species will be propagated, and someone else can do the science and math things required.

Gratitude

I am grateful for my kick-ass husband who has tolerated more bullshit than any husband in the world should have to tolerate over the past 9 months. I am grateful that he's stuck by me, been my cheer leader, loved me when I couldn't see or stay awake, and been he's nutjob self whenever he could.

I am grateful for my mum and dad, my sisters Julie and Tracey and my brother Steve who have accepted me and my illness with a grace and tolerance I didn't think I would get from them. I am grateful that no matter what has happened in the past, they're willing to rally around me.

I am grateful for my in-laws who have offered so much support to their son and offered me good will and patience, and never have made Joe question his decision to marry me and move to Canada. Their love for their son has made them the man that he is, and that's to my benefit.

I am grateful for my friends who have shown up for me in a thousand little ways, with phone calls, emails, songs, visits, wine, and hope. They've put up with my freakouts, craziness and general negativity with a tolerance I'm not sure I could muster for another human being. I am humbled by their love too.

Notice that my gratitude is for real people, doing real things, for real people. Ponder that for a moment before I begin to make things crystal fucking clear.

I am NOT going to be "grateful" that I don't have incredibly bad symptoms of a disease. I am not going to be "grateful" that I don't have the worst form of this disease.

I am not going to be grateful, because it's not like I chose what kind of disease I was going to have, or that my disease woke up one morning and said, "Yanno, I think I'm going to go easy on her for a while."

I reserve gratitude for people and things who do something amazing to help me, and I am grateful when I can do something good for someone else.

I am not going to be grateful that something bad isn't happening to me, because "It could be worse" is the biggest fucking insult to my intelligence I can't even explain how angry it makes me.

There, that feels better.

Went to the physiotherapist today. Got some great exercises to do. All I need to do now is get some balls so I can do them.

(snicker all you want)

I need a tennis ball, a ball larger than that, and another ball no larger than a volleyball to do this exercise to improve my coordination when walking. It's really simple but more difficult than you think.

I have my work cut out for me.

Weird.

The weather is finally back to normal. 24C, cloudy with sunny periods. Perfection. *This* is why I moved here. Temperate at all times. Except that it's not temperate at all times like it was when I first moved here. The past three winters have been hell on wheels and this past month has been absolutely terrible. My love for Vancouver has been waning for a while, but it's definitely over now.

Now that I have MS I am realizing that the things that Vancouver thinks are great are really, really ability focused. Climbing things. Cycling places. Camping. Beach bumming. Ski bumming. All things that get you away from the city.

When I moved here I thought I was moving to Canada's third largest city and it would be Toronto or Montreal to scale. It's not. I find that disappointing. Every time I thought about what I would like to be doing on those sweltering nights I was reminded that Vancouver doesn't do those things.

There is no pedestrian culture in this city. No late night bookstores and record stores, big patios to meet people at, walking down the block listening to the music that comes from the live music venues, or stores that host djs in their front windows while you browse or dance on the sidewalks. Street closures to watch films projected on the side of a building. Restaurants with not shitty rock bands or slick djs with an average drink price of $3. People don't throw house/balcony parties on a rotating schedule here. At least, none of the people I know do.

I moved around a lot in my 20s and living in the GTA made having a life really, really easy. Trains at all hours. Bars that catered to actual grown ups and people actually acted like grownups. People who would talk to strangers. Strangers that would talk to people.

In almost 6 years in Vancouver I have as many local friends as I made in my first 6 weeks in Toronto. Most of them I didn't really make until I had been here around 3 years. It took me 3 years to get into a job that was worth doing.

I moved to the city to *live* in the city. I know now that Vancouver is a city that's uncomfortable with being a city & doing the things that make city life worth doing. I really don't feel like I belong here, especially now.

I guess I'm just not a west coast person. Joe's tried twice to live West Coast Styles and does not like it either.

I've made the mistake of following Torontoist and Washingtonian on twitter and getting absolutely *green* with envy over what goes on every night, let alone every weekend. I miss being around people who don't like to get dirty and prefer concrete and glass towers to mountains. I miss being in a place that knows how to deal with snow and thunderstorms.

I miss being an Urban Diva. Here in Vancouver that makes you a vapid West Van trophy wife with a phony french manicure, Shake n'Bake tan, and brassy foil highlights, driving a Range Rover in 4WD whilst talking on a mobile complaining that Aritzia was out of size zeros. That's not what being an urban woman is, but it's the Vancouver stereotype of one.

The weather brought me here and it's the weather that is going to chase me away. Joe's got 18 months or so to graduation so we're probably out of here shortly after that. Some days that can't come soon enough. Others I can't imagine leaving. But most of the time, I'd rather be back east. I think I belong there.

(PS. this is not to sit in judgment of the people of Vancouver/British Columbia. It is simply to state what I want in a city experience and how Vancouver's not about that at all.)

"Socialism"

Tara over at Living Day-to-day with Multiple Sclerosis responded to a comment I made about her weekly polls being very American-centric. She had no idea that other countries did things that differently.

Lisa Emrich of Brass & Ivory asked if I would put more information about the costs of having MS where I am. Let me see if I can break it down.

All basic, emergency and chronic care is paid for or heavily subsidized by the provincial government through the tax base and transfer payments from the federal government. What do I mean by basic, emergency and chronic care? If it is deemed medically necessary by the physician you are seeing in that doctor's office, walk-in clinic, urgent care facility or emergency room, the province pays. No doctor will give you a procedure that isn't covered so there are no "claims" to be denied.

Health Insurance BC is the "government bureaucrat overseeing my health care". They administer the two programs that take care of my health, the Medical Services Plan (MSP) and PharmaCare, including Fair PharmaCare. I have never had to speak to a person that works there in the 5+ years I've lived here.

In BC most people pay a premium based on family size and income as of your last income tax filing. The monthly rates are:

$54 for one person
$96 for a family of two
$108 for a family of three or more

However there is Premium Assistance available. If you lose your job/have a big change in circumstances you can submit an application to have your income reconsidered.

There are also ongoing subsidies for people with low incomes.

The current adjusted net income thresholds are:

$20,000 - 100 percent subsidy
$22,000 - 80 percent subsidy
$24,000 - 60 percent subsidy
$26,000 - 40 percent subsidy
$28,000 - 20 percent subsidy

Every resident of the province gets a BC Care Card. One only need to present this at a health care facility to receive treatment. If you are in an emergency situation they don't worry about it until your next of kin is contacted. If you are from a Canadian province (other than Quebec) there is a level of reciprocity for provincial plans. You will be asked to confirm/change your address and contact information that scans from the card. You will then be asked what's wrong with you. In the case of a primary care physician you won't even have to do that, as the receptionist will often remember you if you attend the office more than twice a year and you will just be checked off in the appointment book and you wait for your room to open up.

The costs of drugs are not covered but the BC PharmaCare Program has 7 plans that will cover drugs for the majority of residents.

Fair PharmaCare
Permanent Residents of Licensed Residential Care Facilities (Plan B)
Recipients of B.C. Income Assistance (Plan C)
Cystic Fibrosis (Plan D)
Children in the At Home Program (Plan F)
No-Charge Psychiatric Medication Plan (Plan G)
BC Palliative Care Benefits Program
B.C. Centre for Excellence in HIV/AIDS

Most employers with 25+ employees will offer a benefit package administered by a private health insurance company. That includes prescription drug coverage (usually 80-90% of the cost), vision (usually an annual eye exam and $250-$500 every 2 years for frames and lenses) and dental (coverage caps of $2000-$5000 per year depending on the procedures). If you have Fair PharmaCare, that private coverage will apply to the portion you are out of pocket. There is an annual deductible based on income and a MAXIMUM amount that you will pay in a year before the province covers the expenses 100%. Here's a neat calculator to figure out what you would theoretically pay

The CARB drugs used the treatment of MS are covered 70% by the province under the "Special Circumstances" program for people who need drugs for conditions outside the mainstream illnesses. This coverage is requested by your neurologist treating you for MS and must be renewed every 12 months with a 3 month grace period. The coverage will start usually in 24-48 hours after the request is phoned in by the doctor.

The doctor doesn't have to call in for permission. In the case of the drug plans, the doctor is calling in to notify, not ask. We don't fill out claim forms. All billing is done by the doctor you've seen. The only interest a doctor/hospital/whatever has in your pre-existing conditions is from a medical perspective, not to deny you care.

You can see any doctor licensed to practice medicine in the province that will agree to make an appointment with you. You can go to any walk-in, urgent care and hospital ER in the province. You will not have a co-pay. There are no forms to fill out except at walk-in clinics where you'll be asked to fill out a name, address, and health complaint form, listing drug allergies, what drugs you are on now, and any conditions you have on it.

You can self-refer to specialists, but you'll be put on the "Not a priority" list and offered an appointment 6 months to a year from now. If you go to your doctor or local clinic and get a referral you will get in to them much faster as the referral will include triage information. If a doctor thinks you are in severe distress they will send you immediately to a hospital. You will see whatever specialist you need to see within hours, not days.

This is the long overview. If you have any specific questions about how it works, my comments link is open.