Saturday, June 30, 2012

Food for Thought

I am highly skeptical of people who claim they have "cured" their MS by changing their diet, because if it were just about food, that would be the prescription, everyone would do it and we'd all be fine. I suspect that a vocal minority will now fill my inbox with comments about how Big Pharma, price gouging neurologists and the Illuminati are conspiring to keep us all sick.

But all this reminds me of is how I hate food. Or rather... I hate dealing with food. I hate cooking, I hate shopping for it, I hate any kind of preparation and I resent the time I have to spend thinking about what I am going to eat. I even hate the time spent between noticing I am starving and dizzy but I know it's going to take the guy over on Main Street another 20 minutes to get my pad thai over to my house.

Even right now, my stomach is churning with hunger. Yet I think I will just write this post then go to bed because it's much easier to do that then to get up, go to the kitchen and deal with the idea of having to eat. If there were a daily pill that I could take to keep the stomach ache and headaches away I would do that.

My "mental block" about food drives my husband nuts. He says that if I really don't care about food I should just eat whatever he makes and not turn my nose up at it... but it isn't that simple. It's not like I can't taste food and don't know what I like to taste and what I don't. What it is like - if given the choice between food or expending energy to get food I probably won't bother and go to bed instead. I like when food gets delivered to my house, hot and ready to eat. I don't like it that I don't have a budget that allows me to make that happen on a daily basis.

I think about before I met my husband and before I got sick at times like these. I lived on tea, toast, breakfast cereal, 2% milk-double shot lattes and tuna-salmon combos from my local sushi joint, vodka-tonics and cigarettes. I would buy two orders of sushi, eat one after work and save the other for lunch the next day. I would heat the miso up and drink it before bed. Unless someone else cooked or made other dinner plans, this is what I would have 4 or 5 days a week.

I was also walking about 2 kms a day from the train to my office and back and spending most weekends running around the city or climbing the hills and walking the dells of Bowen Island in ridiculous shoes and boots. I probably wasn't the strongest person, but I looked great, my hair was shiny and my skin was fantastic. It wasn't until I quit smoking and tried to eat a more varied diet that I got sick and was forced to stop walking.

Ironic, huh?

Thursday, June 28, 2012

For the first and probably last time...

US Supreme Court Chief Justice John Roberts has issued an opinion that is positive and life enhancing.

In case you've been under a rock today, the Supreme Court Lets Health Law Largely Stand.

I hear you say "But Lady, you're Canadian! Why the hell do you care?"

The answer is very, very simple, but multi-part.

1. I believe that health care is a basic human right and the state should provide it as an investment in the infrastructure of the nation; the same as they invest in roads, sewers, public education and the military. A healthy populace makes for a strong and healthy workforce and a robust economy.

2. I have friends who have health insurance or are not in fear of losing the health insurance they already have because of the provisions in the ACA that have already come into effect.

3. Because the biggest potential obstacle, besides the Department of Homeland Security, keeping my husband and I from making plans for the future in the US was the availability of affordable healthcare for someone with a chronic, incurable illness (if I could have qualified for insurance in the first place).  We can now feel free to make more concrete plans for a few years down the road, and that brings me peace of mind.

So it's not universal single payer, but it is something closer than what was available a couple of years ago. The ACA should be fully implemented by the time we are looking to move and not having the question of healthcare affordability hanging over our future choices makes the plan all the more feasible.

So thanks SCOTUS. This Canadienne owes you one.

Image from

Tuesday, June 26, 2012

"Letters make words, and sentences make paragraphs"

I surround myself at all time with something to write on. I have note pads and notebooks and pens and pencils all around. I spend some time once a month making sure that every pen I have works and every pencil is sharp.

I suppose this is just hope that eventually the Muses will show up and say “Write this down, it’s brilliant!”.

But that day hasn’t happened. The story, whatever that story is, hasn’t come out of my brain or my fingers or where ever in hell stories are kept before they are put on the page. I find not writing exhausting, but I find what I have written exhausting when I read it later. Sometimes I am just so embarrassed by what is there on the page.

Today I scratched some words out in a notebook I keep in my bedside table. I doubt they will ever see the light of day. They might, but it isn’t likely. Even these words began with a thought that just popped into my head and as soon as the first three sentences were down I just started making shit up. It’s only the first three sentences that meant anything to me, the rest of this is just making shit up to fill in the space so I feel like I wrote more than three sentences today.

I need to write everyday, or I think I should write everyday, but I really can't find the reason to get up in the morning. I can't always show up to eat food every day, even when I am physically starving. I can't always show up to get dressed every day. If I have a reason to leave the house, I can totally get it together. But if I don't I don't show up for anything... not even the blank page.

Wellness check

Insomnia. Unemployment. 75% vegetarian diet. Insignificant birthday in a couple of weeks.

Bought two hats that are necessary for my enjoyment and/or survival of the summer months.

Happy Pride Week, Toronto!

Not dead.

Check ya laterz.

Saturday, June 23, 2012

I don't fucking know.

I have been having a difficult time stringing words together into cohesive sentences this week, and I know exactly why.

I have been moving very little and sitting or laying down a lot.

This is why unemployment is a killer to me; with no reason to get up in the morning... I don`t get up. I mean, I wake up between 8 and 9 every morning, but I don`t get up until I either have to pee, the low-caffeine headache starts or I`m so starving I will collapse.

For the past couple of day I have been making a concerted effort to move, with or on purpose, for at least 15 minutes a day. As a result, I've been able to get some things done today. Like get a start on my backload of laundry that piled up just because I didn't want to do it last weekend. I didn't want to do it last weekend because that would have meant getting out of bed and putting socks on. And last weekend, sockless was just the way things rolled around here.

I applied for a job this week and they called me to ask a couple of questions that seemed completely unrelated to the position at hand; i.e. where I saw myself in five years - but the job is only for a 6 month maternity leave. They said that if I am going to move on they'd contact me on Monday or Tuesday of next week. Not holding my breath.

I've been trying to figure out what kind of classes I could take that would improve my job prospects in a year or less and then maybe work part-time and get some kind of training, but I haven't figured that out. I wish I had a clue what I wanted to be when I grow up, but no one wants to pay me to be interested in what I am interested in in any kind of meaningful way.

I guess I am just going to have to wait until Joe turns me into The Real Housewife of, well, wherever we end up settling. I will be The Real Housewife of My House.

Friday, June 15, 2012

Why I am Still Alive

In exactly four weeks I will turn 38. I will have officially lived 20 years longer than I had planned on. It will also mark the 8th anniversary of the day I decided I wanted to live.

“That’s a little over-the-top, hey, Drama Queen.” I know that’s what you’re thinking. Hell, it’s what I am thinking. I detest Past-Me and the person I used to be.

I know what stopped me from killing myself in the summer of 1992. I decided to live for someone else who really needed me to take care of myself. I didn’t do that well, but I really tried. I tried harder at that than almost anything I had ever tried at up to that point. We got through it. I made good choices then, and I have absolutely no regrets. But I didn’t really land on my feet. I made some awful choices after that.

I followed that up with more terrible choices, the worst kind of choices and finally started to move forward with merely bad choices. My choices got less bad over time, until the week before my 30th birthday. I had received some rather devastating news with regard to my health, I was unemployed, I was off-again with the guy I had been on-again with for the better part of a year, I was living with my ex-boyfriend who was trying to get me to snap out of it and being super unhelpful about it, and I had never, ever, felt more alone in my adult life.
I started planning. I started trying to figure out a way to die that would inconvenience the least amount of people. I started writing wills. I started listening to Portishead, Tori Amos and Sarah McLachlan (The Triumvirate of the Suicidal Female).

A friend I used to have on the internet sent me a birthday package which included
I'm the One That I Want
. Margaret Cho spoke to me... DIRECTLY TO ME... when she said:

I am not gonna die because I failed as someone else. I am gonna succeed as myself. And I'm gonna stay here and rock the mike until the next Korean-American, fag hag, shit starter, girl comic, trash talker comes up and takes my place!

I was in tears. I sobbed and sobbed and sobbed my heart out there in my roommate’s bed, because the only TV in the house was in his room. I did not stop crying for 20 or 30 minutes.

I am not gonna die because I failed as someone else.

The very next morning, on my 30th birthday, two people I knew only from the internet and had never met in person conspired to have me woken up by the floral arrangement delivery man. A bouquet of 4 amazing star-gazer lilies and other flowers arrived at my door. I cried some more.

That is the moment I decided that
shit just HAD to change. I got a sucky job that I turned into a slightly better one by October of that year. I dated some. I went back on-again with the guy I had been off-again with and we did that off and on thing for a few more months, until I finally decided I just didn’t want to do that anymore. I was finally making good choices.

A twenty-year-old choice and Margaret Cho are the reasons why I am alive today, for better or worse. I’ll admit that there are times, especially when I think about how MS has changed my life and how it is probably going to steal everything I love about my life in the not-so-distant future that I regret making that decision. The two people I love the most wouldn’t even know me if I had and there wouldn’t be a whole lot of people in the world who would miss me at all.

But I’m here and, though I make better choices these days, I am still trying to figure out what the point of it all is. I don’t have a career. I have a boring life with a man I adore. I’m 25 lbs overweight but I have good skin and pretty good hair. I listen to electronic music and do cross stitch. I write words sometimes. I erase or fail to save most of them. I have MS. It has stolen many of the things I used to love.

I’m almost never happy. But I am hopeful that someday I will succeed as myself.


So Kimli posted this today. I laughed.

So I immediately thought of these lines from Margaret Cho:

"Because there is no such thing as a straight man with visible abdominal muscles. You have to SUCK COCK to get that kind of muscle definition.
It doesn't work for women.
You know I tried, okay?"

Then that reminded me of when Margaret Cho saved my life. So I started putting that in a post but it was a little heavier than I wanted to post today. I wrote something incredibly safe.

Then I remembered she said this:

Silence equals nonexistence. If I don't give too much information, if I don't go there, it's like I was never there in the first place.

So I wrote as much as I could so it wouldn't embarrass anyone else. I got angry about having to edit myself because of the world today and being unemployed and made some sort of "Why I oughta..." statement. And then I watched the A&F video again and laughed.

Now if I could only remember what I was doing before the visible abs happened.

Saturday, June 9, 2012

Not So Liberating

This study was also conducted by someone who really wanted it to work, 
Dr. William Pryse-Phillips, a professor emeritus of neurology at Newfoundland’s Memorial University.
Patients who underwent the so-called liberation treatment for multiple sclerosis experienced no measurable benefit from the procedure, a study commissioned by the government of Newfoundland and Labrador found.
They couldn't find one person who benefited from "Liberation" one year after the procedure out of 30 participants. Not even in the self-reports of the patients themselves. That hardly appears to be a procedure that every person with MS should be undergoing at the provinces' expense.

And the outcome of this study, as limited as it is, leaves me wondering if there isn't a placebo effect - especially when the self-report benefits seem to tail off 3 months after the procedure - and why the people who didn't have a recurrence of clots or blockages did just as well as those who did. Like the doctor asks at the end of the article

"...under Zamboni’s theory, those who experienced the closures should have had poorer results than those who didn’t."
The more investigation that is done on this procedure the more I am convinced that MS will not be cured by a single drug, procedure or therapy. It's just too complex, it's origins so vague, that it's not going to be a magic silver bullet that solves the riddle.

My money is still on stem cells. I'm hoping that one day I can just trade in my whole immune system for a new one, and then use gene therapy to get rid of the damage.

Thursday, June 7, 2012

The MS Monologues

This is a new group on Facebook.

With your time and interest we can turn it into the MS Dialogues.

Colleen started this group because Colleen is awesome. She's one of the first people who said "Yeah, me too." when it came to what I was saying about my diagnosis in public.

The person that says that is worth keeping around.

So if you have MS, or love someone who does, drop in and post a thought or two.

Don't be a dick though.

Monday, June 4, 2012

And then there's this...

"Black bear attacks man in Whistler hot tub"

Canadian bears have gone completely rogue.

Everything in the woods wants to kill you and/or eat you.

Reference this story the next time you wonder if I would like to go camping with you.

This is why I don't leave the city unless out of absolute necessity and why I have no plans to survive the first wave of any impending apocalypse. OUTSIDE IS DANGEROUS!

Sunday, June 3, 2012

Just World?

Insult to injury? I mean, you think that you can OD on drugs in your car in peace and NOT have your corpse dragged off into the woods to be snacked on and then saved for later.

Though I am sure that there are many who think that the bear was too good for the likes of him.

I hope Stephen Colbert is more fearful of Canadian bears. Our bears are extra bad-ass.