Monday, August 24, 2009

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.

Saturday, August 22, 2009

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.

Thursday, August 20, 2009


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. 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.

Tuesday, August 18, 2009

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.

Thursday, August 13, 2009


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.

Monday, August 10, 2009


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.

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

Saturday, August 8, 2009


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.

Friday, August 7, 2009


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.

Tuesday, August 4, 2009


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.)

Monday, August 3, 2009


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.