I Didn't Tell Her To Go Fuck Herself

... but I totally wanted to.

Today I was at the hospital getting some tests done to see if we're doing the right thing when it comes to treating some unpleasant symptoms that won't go away.

I went into the cafeteria and came face to face with one of the health care "professionals" from the MS Clinic. She asked me how I was doing and asked if I was still working.

I told her my employment history in two sentences including details that I had been laid off and was trying to find new employment and she looked me straight in the eye and said,

"Why didn't you just go on disability when you lost your job."

I am sure I mentally killed her with the daggers in my eyes. It took all the power I could muster not to hiss at her when I replied,

"Because I'm not disabled."

And then she got that patronizing look of amused pity and said,

"Oh...you think you can still work.

Good For You, Dear."

And she smiled the patronizing smirk of someone who thinks they know better and patted me on the arm in the "There, There." fashion.

I said, "It was nice to see you."

I turned on my heel and abandoned the idea of picking up a snack before my appointment.


I run into this A LOT, especially around people connected with the MS Clinic and the MS Society and I get it from MS patients who's disease has progressed further than mine. Fortunately I don't get it from my neurologist and family doctor. There's this thing, almost like a need for people with this disease or in this work to lower my expectations for my own life... as if I really need help with that.

Even though it took every fibre of my being not to say it...

I didn't tell them to go fuck themselves.

I don't wanna brag...

but I scored 100% on this quiz.

"You answered 10 out of 10 questions correctly, better than 99.6% of Americans."

Take the short, 10-question quiz to test your knowledge of the law, and then find out how you compare to the rest of the country, as represented by the findings of the Kaiser Family Foundation's monthly Health Tracking Poll.

And when you are done, pass the quiz along to another person who thinks they know it all about "Obamacare".

(And marvel at the fact that a Canadian knows more about US health care legislation than 99.6% of the people who took the Kaiser Family Foundation's monthly Health Tracking Poll.)

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 DemocraticUnderground.com

Maybe you'll start feeling better if you stop reading WebMD

Yesterday was follow up visit with my neurologist. I have been attending her office every 6 months for the past year and a half. Yesterday was a big step in our relationship.

I have been given the all clear to now only see her every year, unless I relapse. This is so exciting.

My only real symptoms are numb fingers and numb toes and bi-lateral spasticity of my lower limbs. This is pretty awesome. Now that I'm not working she is concerned that I am not getting enough exercise and wants me to walk, at minimum, 1 km per day, to find some instruction in yoga and pilates, and to consider weight/strength training for my upper body and core.

Also, we have agreed that I will have an MRI in March or April of next year to see what is going on as she is supporting my decision to go off Copaxone.

I'm not going off Copaxone because it was horrible. I am going off of it because it is a constant mental reminder that I am sick when I don't feel sick. I'm also tired of being bruised and sore in inconvenient places. Mostly, I'm just really sick of being sick.

So, we've agreed that a one year break from Copaxone is fine. If there is no change in my lesion load next year, then we'll talk about Copaxone or see if Gilenya is covered by the provincial drug plan or see what else is on the market. If there is a change, then getting back on a drug is really my only course. I have had no change in my MRI since diagnosis, so anything that happens after now will most definitely be because I went off the drugs.

So, in the grand scheme of all things MS, with 1 being "meh" and 10 being "someone kill me and put me out of my misery", I'm a 1. Maybe even a 0.5.

I am extremely fortunate that my version of MS is turning out to be more of an annoyance than a life destroying disease. I have done nothing to deserve this, unless you count listening to the best advise the doctors had for me and doing what was suggested by them as "doing something". I don't know how long this will last, and by this time next year we will find out of my decisions worked out.

TMI?

I found out today that in 4 weeks my family doctor is going on maternity leave until July of next year.

I also found out that my lady parts are pink and healthy looking, so the day was 1 for 2.

I bought a new raincoat. I like it a good deal.

I am FINALLY getting a haircut, after going far, far, FAR too long without one because we were broke. The appointment availability came up so suddenly that I am now at a loss as to what to do with this mess of hair once I get there tomorrow at 6 pm.

I really feel like I'm getting bigger chunks of my old life back. I'm coming up on my second MS-versary in December. I spent the first year just mentally *dealing* (and not very well) with the idea that I now have a chronic, progressive and incurable illness. The past 10 months or so have been steady, upward progress and I now feel like some of that progress is starting to reap benefits.

NOW I have to get back into my swing of things. The weight is coming off because I'm watching what I eat and exercising in some way each and every day. I'm trying to get out more. In November I want to have a cocktail party housewarming. I have some vacation time and so I'd like to take a couple of days off to write over an extra-long weekend.

For the first time in forever I feel like I am moving forward. I've given up on certain dreams only to come up with new ones. I have an idea for a plan, but since it relies on me having actual talent, the US government and me staying healthy for quite a few more years... I will probably have to rewrite it or scrap it entirely.

Now to get this move over.

Avoidance

I am so disorganized these days and it makes me wonder if I am losing my mind. I haven't felt like torturing myself with further documentation that my life is incredibly uninteresting.

My life isn't incredibly complicated these days so it doesn't negatively impact my life in the form of missed deadlines or dropped balls. I think most of the time it is a reflection of how little I care about a lot of things.

I have strep throat. That sucks. 6.75 more days of penicillin and I should be right as rain. The clinic doctor I saw today sprayed my throat with some numbing stuff, wrote me a prescription and told me to gargle with salt water and drink lots of honey and lemon.

I will do that shortly.

I have to go to my MLA's office to complain about BC Pharmacare. This is the best thing about single payer health insurance; when something goes wrong it is someone who relies on the favour of the public to keep her/his job who has to try and rectify the situation.

The last time I had an issue with BC Med her constituency assistant got on the horn and had Joe an insurance card in 48 hours. Lets hope that Stewart or Joe (my MLA's assistants) can get some answers as to why BC Pharmacare thinks I live in Chiliwack.

I have never been to Chiliwack in my life, let alone lived on Garden Dr.


Also, the MS Walk in Vancouver is on April 25. That leaves me a little more than a week and a half to try to raise $75 more dollars so I can get the tote bag from one of the event sponsors.

Pledge me today if you can!

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.

"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.

Stuff and things.

Thanks to Cake Wrecks for the photo.


So, I got my new neurologist today, and it's a woman! And she is fun and a recent graduate and is supervised by this other woman who wears 3" stilettos and has a blonde Bettie Page haircut. I have the two most fabulous women in the neurology dept as my doctors! YAY!

Funny thing happened as my previous doctor was leaving the country...

I'm trying to get into this employment resource agency for people with disabilities and it requires a basic assessment of my condition and approval to work. Yesterday, in the hour before he finished at the MS Clinic he filled out my forms and had them faxed.

The agency called me to tell me that my doctor hadn't approved my return to work. This surprised me because he wrote a letter to EI saying that I was ready for regular benefits about two months ago.

She then informed me that I've had MS for 6 years, I am anorexic, on anti-psychotics, have no mobility issues, but I can't read, write or talk properly.

This is all very much news to me. I think he may have got me mixed up with another patient. So as a result I got to meet my new doctor at the clinic today. We filled out the forms properly and I had the office staff at the clinic re-fax it.

I'm still weirded out by his confusion in my paperwork, but I guess that it doesn't matter now. He's gone back to Germany, and I have a bright, shiny new neurologist!

This means that I'll have a reason to leave the house soon. Working with a job developer and employment counsellor will be good.

I changed up my Wellbutrin dose to both pills at 9 AM and I'm sleeping better. No more than 6 hours at a time, but that's definitely better than the 3 or 4 I was getting before.

Additionally, I've been following the craptastic Republican stupidity about how the US Congress' health care reform bills are "Canadian-style" health care.

IT is NOT even close. In fact, it is the kind of care that Canadians have been fighting against for about 10 15 years. Two-tier is a bad idea, but I guess in the case of Americans beggars can't be choosers, right?

The Canadian system isn't perfect, but I've never waited for anything I've ever needed. The system is run on triage and the sickest get service first. I have MS and I've had an MRI bumped because someone with a brain tumor or something needed it more than I did. I'm cool with that, because I know that person was sicker than me and didn't purchase his/her way to the front of the line. I got in a few days later.

If I had to pay for every health service I've received in the past 10 months I would be declaring bankruptcy. I had no "employer" insurance with my last job. I have had 3 MRIs, 2 MUGA scans, an EKG, an EEG, seen 5 specialists, had 4 rounds of a chemotherapy drug, three bags of steroids and have used the services of the relapse nurse, social worker and physiotherapist at the clinic as well as two visits to my family doctor to get some of the side effects dealt with. I either wouldn't have got these tests/treatments/supports or I'd be in debt up to my ancestors ears as an uninsured person in the US. If I had even the most basic of coverage in the US, I'd be swamped with bills.

I lost my job and the ability to work because of MS. I'd be destitute if we were in the US, and every DAY I am grateful that Joe moved here instead of me moving there.

Single payer insurance is the way to go, but I doubt that the culture of the US will allow them to get there. The system is too race and class based for white suburban people to allow poor people get the same care they do. The place is so Calvinist it makes my head spin.

I am sure there's more, but this is long and offensive enough.