Wrong person

There's a comment in my previous post from some for-profit, US Healthcare bullshit, asking if I would post a short video of hope, encouragement and inspiration for those just diagnosed with MS.

I'm the WRONG person for that.

You see, I know that that the "power of positive" thinking is bullshit.

It's not going to help me get better. It's not going to make my symptoms go away. It's not going to give me back functioning ovaries, or put my hair and nails back to healthy.

I can't think my way to not having MS.

What I can do is share my experience:

In a nutshell, if you liked your life before MS, you're going to hate it now.

If you hated your life before MS, you're going to go through bouts of suicidal depression and a level of self-loathing that will make you wish you were dead.

Any plans you had that go beyond maybe a year from now: accept that they're just plans, and probably not the likely outcome.

No one has a cure for MS. From the best research available, most people with RRMS are not completely disabled after 10 years who:

do not smoke.
get regular exercise.
eat a diet of small amounts of protein and large amounts of plants.

Which is kind of funny, because that's what they tell people who DON'T have MS to do to stay healthy.

MS broke me at a time where I was just getting my shit together. I will never be able to make up for what MS cost me.

I don't have anything to offer a newly-diagnosed person. My MS isn't your MS, and if forced to choose between the MS I got and the MS you got, I'll stick with what I have. It's not a gift, it's not full of great lessons, and it did not happen for a reason.

I will concede one thing about the "power of positive thinking".

It makes my family and friends happier to be around me when I pretend I have it.

Where have I been?

So, for the longest time I didn't want to write about anything at all.

I'm not exactly what you would call "in love with life" these days.

Finances continue to be a struggle.

Car ownership continues to vex me.

The heating situation in our apartment makes me want to stab someone.

Seriously, when it's 30 below out there, it does not need to be 40 degrees in here.*

Also, when it's hovering around zero outside, it needs to be warmer than 10 inside.*

Joe's schooling continues to be a challenge. Nothing is working out as previously planned, so now it looks like he's going part-time until Spring of 2016. Which means he's gotta find a job. Find a job with a poli-sci degree in a town where the official unemployment rate is stuck at 9.5%

I'm not sure I'm cut out for self-employment, but hopefully my two new clients work out better than my three old ones.

I'm biting my nails again for the first time in 10 years. Right now I'm just glad that I haven't started smoking again.

Things are different here.

I miss living in a city.

A lot.

There's so very little from my old life that crosses into my new one.

I did the work. There's practically nothing.

I suppose that I would hate it here less if I could get away from it more often but between the location restrictions from the funding program I'm in for my business and the lack of money we're still going through, I can't really go anywhere.

***

My MS remains a pain in my ass.

I started working out with some regularity in late October of last year. The goal is to get physically stronger and improve my balance.

I don't know if it's working.

I learned that I can't do a 45 minute work out at the gym and then come home and do three loads of laundry up and down 3 flights of stairs and have enough energy to do much of anything after 4 PM.

***

I learned that cheap Indian food and a shot of Canadian Club not long before bed causes me to have dreams where I hit people I haven't seen or heard from in over a year in the arm and yell at them to stop haunting my dreams.

Yeah.

I know.

*All temps Celsius 

Long time ago

in a land, far, far away; my last and only hope to stay in Vancouver was dashed.

A year ago I got the call that I would not get the job I'd been hoping for. They decided to go with the person they thought they would get along with better.

Yeah, I know. I think about that sentence at least once a day.

I regret not staying in Vancouver less and less. When I realize how little money we actually make, we'd have been homeless by now had we stayed.

***

This weather though.
Fuck this winter.

***

I spend a great deal of my time pretending to be someone I am not.

It's difficult.

Still, I haven't had a progression in my MS symptoms since I originally got sick in December 2008.

It just the same shit, every day, all day.

I'm trying my hand at self-employment.

I really hate it.

I really hate the people you have to deal with in order to both eat AND pay the bills. I hate the person I have to become in order to be perceived as competent and capable.

I'm depressed, but not as bad as I have been before.

I hate it here.

I need to start dating an extrovert with money, because I'm bored to fucking tears around here.

I Disabled My Highly Personal Facebook Profile

My "professional" profile is still up, and it's so boring that I am not interested in being on it. So, the bathroom is now super clean.

I disabled my personal profile for a few reasons:

1. The US Government shutdown. Not my country, yet I was fighting really hard to not get sucked into the negativity and refuting misinformation. Also finding out that my friends are friends of/related to hateful sociopaths who would rather die or go bankrupt than buy health insurance "from the government" was really upsetting. I can't just ignore that shit if I see it. So it was time to "shut the whole thing down".
2. Clicky games. Jumpin' Jeebus on a pogo stick, the clicky games. And I don't even "farm" (anymore).
3. I'm trying to make some personal changes in my life that go with the professional changes I will be making next week. I have to learn to be more mindful of the way the people in my life use social media, and I have to learn to temper my speech by discerning whether or not what I am about to say will be important or useful to anyone else but me.
4. Perspective. I just need to get some.Or something. I don't know. Shutting down my personal Facebook just seemed like a good idea at the time that I had it.

So I'm hanging out on Twitter a bit more ( @LKid ) especially now that hockey season has started.

If you know my legal name, you can find my boring, professional profile on Facebook.

***

Yesterday I saw this posted:

http://www.atlasofms.org/

I realized that it had been days, but not quite a week, since I was reminded that I have MS.

I've just really gotten use to having no feeling in my fingers and toes, and that thing with my voice has stopped. I even remember telling the nurse at the urgent care last week when I went to have my sinuses checked out that I had MS, and not feeling sad, or panicked, or much of anything about it.

It was like I told them that I have hazel eyes or my favourite colour is red. It is now just one of those things about me.

Weird, huh?

I got this thing...

I don't normally ask Doctor Internet about symptoms, ESPECIALLY MS symptoms, but this has got me kind of weirded out, so I thought I would see if any of my other MSers had anything like this.

If I talk for more than about 10 minutes, just like back and forth in a normal conversation, I start straining for volume and pitch. I actually have to work to form words, and keep my voice audible. Talking becomes *exhausting* and full of effort.

Now, if you know me... talking is kind of my thing. I can talk forever. I used to never shut up.

This turn of events is kind of a big deal. It's been going on for a month or so.

Part of me wonders if it's just lack of use. I don't work very much, I don't have any friends locally, I "talk" to pretty much everyone in my life by typing to them. This also includes Joe, because he's not home a lot and when he is he's like linear algebra and C programming 24/7.

I don't really talk anymore, or at least not even half as much as I used to, and my body just isn't used to it when it happens.

The other part of me wonders if this is a new MS symptom and I'm going to be unable to walk or see or stay awake in a few weeks.

Because that's always a possibility.

***

Apparently, I'm not going to get any Adderall until I am sleeping more than 12 hours at a time.

So there goes my plans for that legal addiction.

***

I have the teensiest amount of hope that I will have a steady liveable income by the beginning of next month. But it won't be at my current job, and I'm okay with that.

Clearing my Cookies

So, 2 weeks to 10 days ago I saw a sidebar ad for

UM! Brands

I am always looking for cute and useful organizing tools, so I gave them a click.

Turns out, there's absolutely nothing that I want there.

SINCE that afternoon, every time I've gone to a website, I've seen an ad for UM! Brands.

Most recently at the bottom of this page:

Seriouslyforreal.com - This Guy’s Instagram Is Just Him Photoshopped Next To Celebrities

And on ANY website that has videos as GoogleAds. And most with sidebar advertising.

It's fucking creepy. I'm being stalked by a piece of plastic that lets you stick your iPhone to the wall.

***

And then the sky opened up. 6:11 PM EDT, the rain just fell out of the sky like it couldn't get out of the sky fast enough.

It's now a gentle warm summer rain at 6:19 PM EDT.

Sometimes I wonder if I didn't move a rainforest, rather than the other way around.

Windsor is under a Level 1 Heat Advisory today and tomorrow because the Humidex is expected to feel like 40 DEGREES CELSIUS for TWO STRAIGHT DAYS.

(US Translation: 104 DEGREES FAHRENHEIT for TWO STRAIGHT DAYS)

Fuck this shit. FUCK IT RIGHT IN THE EAR

***

Oddly enough, the heat and humidity hasn't been bothering my MS symptoms too much. I've got some cognitive crap going on, and some fine motor/hand-eye coordination issues that are more like an exaggeration of symptoms I already have.

My hands are numb all the time unless I am in the deep freeze I call work. Joe can't get the bedroom cold enough with our window unit to get rid of the numbness.

***

Re:Yesterday

I had three people who don't know each other bring up Kickstarter as a funding option.

Maybe I'll give that another thought.

***

I've cleared my cache and cookies because I don't want nanosuction to be influencing my internet surfing experience.

***

I just checked the post I referenced. UM! is GONE! YAY!

Humidex

It is 10:00 PM. It *feels* like 35C. That's 95F. It's fucking terrible.

It's been like this for two days.

I am living in my bedroom with the window unit air conditioner, except when I want to use the internet. That can only be done from the living room, because that's where the wi-fi signal works. Internet is intensely complicated here... so long story short; we only have internet in the living room.

My vision is out of whack, I'm constantly dizzy, and I'm ANGRY ALL OF THE TIME.

Joe's cooking dinner (yes, at 10 PM.) and once I eat I'm going to take the coldest shower I can stand, put on a tshirt, and lay in bed until I fall asleep.

It's cool enough in there that I will know I can sleep.

I hate this. I hate this weather with the white hot intensity of one thousand suns.

I can't function. I can only leave the house if I am going somewhere that is climate controlled. I alternate in 20 minute spells of being in the bedroom and then trying to do something in the rest of the apartment, or being online, for 20 minutes.

It's not working well, because I can rarely do 20 minutes in the heat.

It is at times like these that I question our decision to move. This weather is TERRIBLE for people with heat sensitivity.

What's worse, my cooling devices don't really work in humidity.

I had a long, detailed rant about how much I hate everything, but I've had to stop and start this so many times that I have forgotten what it is. Suffice it to say that I am really unhappy about a lot of things, and this bullshit weather is only amplifying my distaste for life.

***

I have now eaten. I'm getting in the shower. Fuck this day. Fuck this weather.

The Big Reveal - One Year MS Clinic follow-up

1. My brain is still there.
2. MRI comparison between September 2010 and April 2013 is stable; no new lesions visible, brain mass remains unchanged.
3. Improvement noted in gross motor skills on my left side, though some deficits continue with my small motor skills on the left side.
4. No change in left side weakness.
5. No change in spasticity in my legs.
6. Improvement noted in nerve sensitivity in my hands and feet.

My neuro gave me a list of six (6) recommendations for my next year with MS.

These suggestions are based on the known best practices for people with MS and based on the findings presented last weekend at a conference of MS research academics. I think you will be surprised by some of them.

1. A multi-vitamin daily.
2. RDI levels of Omega-3 (animal based, not veggie derived) daily.
3. 1000 IU of vitamin D daily.
4. Mediterranean diet at least 5 days a week, 50 weeks of the year.
5. AT LEAST (bold AND underlined) 15 minutes of exercise - cardio activity - every day.
6. Get back on Copaxone until I can afford Tecfidera.

EDIT, 1:57 PM: I missed this part of my notes... My neuro did some balance testing and recommended I get a bike. A REAL BIKE, with just two wheels.

Thus ended The 2013 State of The Brain Address, with a hug and best wishes.

Of the few things I will miss about British Columbia, my neurologist is one of them. She's been amazing and awesome and I am so fortunate to have been a patient of hers. She will be taking some new patients at the MS Clinic. If you want to change, or you're looking for a new MS specialist neurologist in Vancouver, BC, I could totally hook you up).

So, it's nice to know that my disease seems to having taken another year off. It's been four years since I was diagnosed, so we'll see what happens in this next year.

Um, whut?

Annette Funicello died today.

"Her family told Extra that Funicello passed away from complications of her illness, and they were by her side when she was taken off life support. Funicello had been in an MS coma for years."

What in the flying fucking fuck is an "MS coma"?

I've had MS for almost five years, I HAVE NEVER, EVER, EVAH, heard that this was a thing.

How is this a thing?

Why did no one tell me it is a thing?

***

***

My temp job gets easier but vastly more irritating as of tomorrow.

***

Barring something unforeseen happening, two weeks from right now I will be sleeping in a hotel in the Greater Missoula, Montana Area on the way to Ontario.

I have never wanted anything so badly in my entire life.

BRAINZ! An Update

I had my 6th or 7th MRI since November 2008 today.

No contrast makes me happy. I don't like nursing an IV hole for three days.

My neurologist will give me The State of the Brain Address, as she does every year, on April 18.

My hope is she does not insist on referring me to the closest MS clinic to where I am moving. London, ON is two hours from where I'll be living and is NOT convenient. I would like a local neuro, and I'll get a referral to a clinic when we move closer to one.

***

One year ago I was flying to Chicago. I listened to Katy Perry all fucking day to celebrate.

***

I hope that dinner and some caffeine cures this tired I have. I have an art show to go to in a couple of hours.

Boredom causes fatigue

Brain numbing boredom had me just about falling asleep in my chair at work this afternoon.

I realized I forgot to have a caffeinated beverage at lunch, so that's why I didn't make it I think. If I miss that, the fatigue chases me from 2 PM to 5 PM.

If you have fatigue, specifically MS fatigue or other fatigue, what do you do to make it through the day?

I haven't found a whole lot of insight into this because most of the people I've found online who blog about MS or share information about having MS don't hold down a 9 to 5 at somebody's office.

Again, I'm reminded of why I kept this blog going... there aren't a lot of people out in the blogosphere who bring home the bacon.

Mmmm, bacon.

Do you know any MS bloggers who have jobs outside of their homes? If you do, post their url in the comments.

I want to know them.

This Is The Voice

This woman tried out for The Voice, a country singer from Nashville, TN, who claimed to have MS.

I HATE PEOPLE WITH MS WHO CAN WEAR HIGH HEELS!

There, I said it.

I find people with MS who wear heels to be smug show-offs.

It's all like "Heeeey, lookit meee! I'm awesomely walking around in my high heeeeeels all awesomer than yoooooo."

I.
Miss.
Lovely.
Shoes.
So.
Much.

MS fucking sucks.

Saying what I need to say.

Basically, here's where I'm at these days:

1. I have MS, and that fact colours every thought, decision, choice, and option I have in my life.
2. I am feminist. Full stop, without apology, and with as little explanation as possible.
3. I am an organized administrator; which is the least respected, appreciated, and rewarded of all the skilled labour sectors to be in.

Because I have MS, I have limits on what I am physically and mentally able to do. I have figured out work-arounds for almost all of the life situations I find myself in, and 99% of the time I am able to fully function in an abled world. The prospect of almost certain permanent, life altering disability hangs over my head like the blade of guillotine ready to end my life as I know it. I have to be real about my future and, barring some kind of medical breakthrough in the next 10 years, I will almost certainly be unable to work, support myself, or be a contributing partner in my marriage. In ten or 15 years I will be a burden to society, yet I will likely live another 35 or 40 years.

Because I'm feminist, this bothers the fuck out of me. I distinguish between my marriage and my relationship with my husband. I entered into my relationship as an equal partner who loved (and loves) him incredibly. I don't think MS has changed that emotional and loving connection all that much. However, I entered into my marriage as an equal in a legal partnership to allow the two of us to do greater things by sharing resources and expertise. Having MS means that I am pouring all of my current resources and expertise into educating and training for my husband, because he's going to have to make the big bucks over the long term. I am never going to be in the position to make my own life, set my own terms, realize financial independence, or get the degree that will allow me to be taken seriously professionally.

Because I am a career administrator, I have gone 48 weeks unable to find a somewhat secure, non-exploitive, respectful, and progressive employer where my skills are needed and appreciated. Women, especially white women, who get into "clerical" work are expected to use that role as a springboard to something else, and be the doting and professional mother of two children while they're springing. I should have a degree in *something* and do admin for a (almost always) white, straight, cis-male, CEO while I work on an MBA that will allow me to access the halls of corporate power.

That's what a woman in my position as a white, cis-gendered, middle-class born, het-married, woman should be doing. To not want that is to somehow sell-out my gender. To not exercise my privilege is a waste of good estrogen, apparently. Yet, I have no designs on capitalist, corporatist power.

I just want to help people do their best work. That's all I have ever wanted to do for a living.
I work in administration because I am good at it and I think I offer good value to my employer, but women like me are the most expendable in the capitalist world. We're the first ones to go during economic downturns, we're the last people to be hired back when things start looking up, and we're expected to take less and less money with each successive round of lay-offs and rehires.

As an example, my first admin job in the early 90s paid $8 per hour. Today, 20 years later, I can find jobs doing exactly what I did in my entry level position that pay $11 per hour. That's $3 an hour in 20 years. I made $1.65 an hour more than minimum wage back then. That job now pays just $0.75 over minimum wage. If I want to make something close to a living, middle class wage in administration, I need to get a degree, and an MBA, and spearhead some sort of "corporate mission" that will add zeroes to the bottom-line and exploit a desperate workforce. I don't have the time, ability, money, ambition, or interest in doing that.

So, as a person with MS, who wants to be an equal partner, and has job skills and experience that are now subject to the law of diminishing returns, I really don't see what the point of my life is any more. I wish I could change the world, but I don't know how. I don't know how the world would take me seriously, given I have no credibility as a scholar, researcher, business person, or educated activist. Forgive me if I am not out there trying to save the world from sexist, racist, homophobic, fat-shaming, transphobic, ableist, slut-shaming, victim-blaming, theist, capitalist, fascist agendas. It's really hard to take to the streets when you're trying to figure out where the rent is coming from this month, or where food is going to come from if you make the rent, or making a choice between bus fare to a job interview or bus fare to the doctor because you can't afford to do both this week.

Forgive me when I say that I just can't keep up. I want to, but I don't know how.

Hope

So they re-myelinated the brain of a shiverer mouse (original abstract here) and I cried.

I believe that stem cells are "the thing" that will cure and then "fix" MS. Ideally, I'd like someone to figure out how to "reboot" my immune system and fix all the neurological damage this disease has done, and what this study above does is give me home that at least *part* of that dream is possible.

I've never let myself believe that MS will be cured in my lifetime, but if this science is actually a working model, MS might be fixed by the time I'm in my 50s. If I can keep from progressing now, that would give me 30-40 years of life worth living.

Until now, I've never let myself have that hope. I cried because it now seems possible.

Stem cells are where it's at. Mark my words.

Today

I have spent the bulk of this afternoon crying.

I have tried everything I can to find a way out of this crazy bad situation, and I'm losing my mind.

It's starting to give me vertigo, leg weakness, and sore shoulders. I need to get out of this house, but you can only walk around the block so many times before you feel like you are wasting your time and your life and you just want to start screaming in public.

***

I'm tired of crying. I'm tired of wasted effort. I'm tired of wasting away in this apartment. I'm tired.

***

I think I'm done here for today. I've done everything I can today, I'm still sure it's not enough, but I am done.

Tired

I have no reason to leave the house.

I have started to force myself to walk around the block once a day.

Someone give me a reason to leave the house.

Avoidance

I've been avoiding this blank text box for over a week.

Do you ever feel you just want to forget you've got MS, and for periods of time your body and mind don't act up, and with this cooperation allows you a short spell where you can live in that fantasy world?

I just had one of those, so I didn't want to look at my MS related blog.

The illusion of health started to fade yesterday afternoon, and by this afternoon I was mindful of the "residual deficits" MS left me with.

That sucks.

***

Quick update:

Still no job.
Still no prospects.
No work from my new endeavour.
Plans still on hold.
Losing hope, but it's not gone yet.

A Major Breakthrough

Yesterday it was chilly in my apartment when I woke up. I cajoled my husband into coming back to bed to warm me up, but he found it boring, so he added my TV-watching-blanket to the top of me bed and left. Within minutes I was sound asleep. I slept for an additional four hours.

***

Shortly before I was diagnosed, having a shower would leave me unable to walk, exhausted, and with short-term memory problems.

Since mitoxantrone, I can have a shower without these symptoms, but I still shower before bed just in case it makes me tired or my legs decide to short out. But I thought I was over the worst of the heat sensitivity.

***

I cracked a window last night and took the extra blanket off the bed. I woke up around the time I thought I would. Getting warm puts me to sleep. 

Too hot makes me cranky and I can't walk right.

Too cold makes me cranky.

Warm and cozy makes me sleep. Makes me sleep for hours.

My optimum operating temperature is 18 to 22C  (64-72F)

Though I can stay awake at less than 18, so it's a good thing I live in Canada.

***

So the key to my waking up at a decent hour is to have barely seasonally appropriate bedding and wear summer pjs all year round.

This is a major breakthrough!

91 instead of 89

Betty White is going to turn 91 next week.

My grandmothers never made it to that age, and neither were close to Betty's level of vigour and health for years before they died.

Every time I watch Betty White I get sad a little because I want MY 91 to look like Betty's 91, not the 89 years both my grandmothers made it to.

I have MS. The likelihood that my 91 is going to look like Betty's is... probably overly optimistic.

But I think that I can do something that can make it not like my grandmothers'.

Given the recent medical history in my family, I could stand on a nuclear reactor core and not get cancer. However, if I eat nothing but meat and potatoes or sit down for too long I will have severe dementia for the last three years of my life before having a stroke or brain bleed.

Cardiovascular disease will kill me. It will kill me like it killed every. single. one. of my grandparents.

I want to be Betty, not my grandmothers.

So what do I do about that?

I guess I could start by not fuelling my waking hours with caffeine and sugar, and go back to eating real food of carbohydrates and proteins. 

***

I'm the kind of person who eats half a pint of Ben and Jerry's or microwaves a bag of popcorn for supper because it's easier than thinking about cooking. I am not a big fan of food and generally only eat until my stomach stops growling. This often leads to a growling stomach a short time later. I have to be in the mood, as well as hungry, to eat. I don't like to eat for no reason.

***

I could also stop being the kind of person that thinks half a pint of Ben & Jerry's or a bag of microwave popcorn is dinner.

***

I could also become the kind of person who gets dressed every day. Or the kind of person who gets dressed every day and leaves the house.

***

HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA!

Finally, a post about MS

Here is the nationwide survey for people with MS, their family and caregivers.

***

Four years since my diagnosis and I haven't really gotten worse. Since I stopped walking with a cane almost a year and a half ago I have had no improvement, but I haven't gotten worse. I guess I need to be grateful for small mercies.

***

I have a lifetime diagnosis of multiple sclerosis, but I do not qualify for the Disability Tax Credit (DTC). That's fine. I'm not disabled. The Canadian government offers people with disabilities the opportunity to save money for future infirmity tax-free with a Registered Disability Savings Plan (RDSP) but you can't get an RDSP unless you qualify for the DTC.

This is the single biggest tax issue I have with the Canada Revenue Agency. They don't allow people with diagnoses with probable catastrophic diseases save money without penalty for the day when they can't earn their own money.

That's the thing with MS. Today I'm able to be a taxpaying, contributing member of society and tomorrow I could be disabled for life. And because that disability isn't "intrusive" enough, I'm not a disabled person. I'm a person with a disability.

How awesome is that. :\