MS can suck my ass.

I'm really trying to think less violently. The past five days make that difficult.

***

Dateline: Friday, July 4 8:30AM

Wake up with massive amounts of shooting nerve pain in my right foot and in my right cheek.

Soldier on.

Do some work. View a little social media. Try to make some plans for the next week.

***

Dateline: Friday, July 4 2:30PM

Shooting pains are now in my calf, thigh, and right bicep. Every movement causes more. 

Tell spousal unit that I might be having an MS attack. The weather is fair, clear, and not hot or humid, so I freak. It's super painful. We have some lunch and head for the ER.

***

Dateline: Friday, July 4 9:00PM

Released from ER with a referral to a local neurologist, some drugs that are reportedly good for nerve pain, and a recommendation to lay off refined sugar and processed flour products because they both are bad on the nerves.

Find out from pharmacist that the drug is also a anti-psychotic mood stabilizer and anti-seizure medication. Have mild mental freak out.

Get home, eat fruit, take medicine, pass out within 30 minutes.

***

Dateline: Saturday, July 5 10:30 AM

Wake up after 11 hours sleep. Pain is still in my face and foot, but it's gone in my leg and arm. Notice that the drug bottle says to take twice a day. At 11AM I take the second dose.

Dateline: Saturday, July 5 12:05 PM

Pass out with laptop still on my lap.

***

Dateline: Saturday, July 5 7:30 PM

Wake up, have dinner. Do some work. Have a shower. At 10:30 PM take third dose of medicine, because it says twice a day.

***

Dateline: Sunday, July 6 10:30 AM

Wake up. Eat food. Try to do some work. Fail.

Lay down for nap at noon.

***

Dateline: Sunday, July 6 4:00 PM

Wake up from nap. Spousal unit asks if I have taken any medication that day. Respond in the negative. Fall asleep playing Pocket Mine on my phone.

***

Dateline: Tuesday, July 8 10:00 AM

Wake up to a pain-free body. Think that it is Monday. Text a colleague that I won't be into my public office that day when I find out its Tuesday. Spend day trying to stay awake and remember what happened yesterday. Go to bed at midnight.

***

Dateline: Wednesday, July 9 6:37 PM

Write a blog post about how fucked up my past few days have been and try not to rage against the bullshit that is the treatment of nerve pain.

***

I believe that my experience was caused by a combination of not having refined sugar (and the associated regular intervals of caffeine) and taking that drug. If this is the best they've got for nerve pain, then I'm going to have to reconsider living.

Today was better. No pain, just a little bit of fatigue, but I also had 2 cups of coffee with organic cane sugar in it, so I think that was the difference maker.

Goals for tomorrow:

1. To get dressed.
2. To leave house.
3. To work on the backlog of stuff I didn't get done on Saturday through Tuesday.

***

MS can suck my ass.

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.

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 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.

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.

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.

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.

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!

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. :\

Not Magical

12-12-12 is the fourth anniversary of the worst day of my life.

***

She gets mad and she starts to cry

She takes a swing. Man, she can't hit

She don't mean no harm

She just don't know

What else to do about it

***

So here's the breakdown on my breakdown.

I've been basically unemployed since April 1, with about 10 weeks of temp employment over three months - July, August and September. I guess a little of October too. I've had just two face-to-face interviews in that time, and I've come in second both times.

I have limited weeks remaining on my Employment Insurance claim; we're running out of income. I found out today that it's a little bit longer than we thought, but I have more weeks paid out than I have weeks left in my claim at this point.

I'm not allowed to share publicly what Joe's situation is, but suffice it to say that he's not a slacker or kicking back, relaxing. We're in full scale panic at this point.

In looking at our options we are facing some really critical decisions in the next two weeks to two months.
Some of the options are, but not limited to:

1. Selling everything we can, throwing out what we can't, packing up whatever we can carry or afford to ship to my parents house, give notice on our apartment and leave for anywhere east of here that we can find jobs.
2. Another choice after giving notice is to split up and try to find jobs in two different places and whomever is successful first decides where we land.
3. Waiting it out to find a job and if my EI claim ends, Joe quits school and we go on welfare until one or both of us can find a job.
4. Joe would have to put off a whole bunch of educational goals for at least another 16 months if that is the case.
5. He's pissed that we even have to consider that, for a whole bunch of reasons not unrelated to industry ageism.

So, I've barely stopped crying. This still isn't as bad as being told I have MS, but it's pretty damn close.

***

I have been relapse free since my initial attack in December 2008. I have 98% of the faculties I had in 2007.

I have not used a cane since September 2011.

I have not needed to use my shower seat since 2010.

I have not slept for more than 10 hours in a row since 2009.

I have not had double vision since January 2009.

MS so far has not killed me, but it has not made me stronger.

***

I will be so happy when this year is over. Or this decade. Or this century.
I'm so fucking fed up with the realities of being me, I just want to quit.

Project launched

If you're my Facebook friend you know that I showed my new project to the world today.

Nothing really happened after that. I got some good SEO advice. I got some Facebook likes. I've starting writing more stuff.

***

Trevin is still the most overrated on The Voice.

I still LOVE Melanie.

I still think Nicholas should win.

***

I think I've been typing for too long and too many days in a row. I barely have any feeling in my hands. I had to get Joe to take the lid off my new container of yoghurt because I couldn't grip it.

MS is an inconvenience in my life, but often it's the inconveniences that make me feel as helpless as a toddler.

Things are coming together

Website is coming together. About a day and a half until it launches.

Still no job. Second interview coming up on the in a week or so.

My muscles aren't working tonight because it is so damn hot in here I have the window open and I'm wearing shorts.

We've never turned the heat on in this apartment since we moved in two years ago. There are heated spots on the walls and floors. We're apparently directly above the hot water tank and most of the pipes to the other two floors flow through our interior walls. As a result, we don't have to turn on the heat and have like $20 a month electricity bills. Add to the natural heat from the apartment we also had the oven on to make dinner and I had a shower as hot as I can physically stand it. I am sweltering.

My English skills start failing when I get hot. My physical coordination starts to fail. Hopefully things start to cool off in here so I can get some more work done.

I'm wonky and tired. I'm not sure if this post is in English. I think I'm done here.

Music to my Ears

So, I'm having this symptom with my hearing. If something is too loud my ears start popping like I've just descended 20,000 feet. I will also get a shooting pain if a sound is too high; like cymbals, babies crying or laughing, and whistles.

I think I have to get this checked out, because it's been going on for a couple of months.

As a result I've been avoiding music. Since like August.

I don't like Mumford and Sons, or that guy who sings "Home", so I don't feel like I've missed any music of significance.

If I am wrong, please let me know.

***

Purple was 1-1 today. Teams I hate were 1-1 today.

I miss hockey. So very much. Too bad the NHL does NOT GIVE A SHIT ABOUT ITS FANS.

Junior hockey, the 1978 Stanley Cup final and the 2002 Men's Olympic Ice Hockey gold medal game are just not cutting it.

I need me some Max Pacioretty, PK Subban and Carey Price. So. Very. Much.

***

I'm hungry, I have no hockey, Aaron Rodgers is losing, there's nothing good on television, and I'm tired of working on website stuff.

I should get someone to solve the hungry problem.

Forward Ho!

So a friend of mine stayed up until 5 AM yesterday morning to build me a website.

I KNOW, right? That's just crazy of her. It's so close to perfect right now I can nearly taste it.

I'm absolutely humbled by her efforts. I'm going to have to do something awesome for her.

I'm writing a manifesto. It is hard on my brain.

I have to schedule some time this week to get Joe to photograph all the completed x-stitch projects I've done this month.

I do not have enough energy to finish everything on my list this week, but with the help of a lot of tea and OTC caffeine pills I should come close to clearing the list. This is the part of MS that drives me crazy; trying to medicate myself through my day so I can have something close to a normal life.

***

Movember cannot be over soon enough. Creepy 70s-porn-star looking weirdos are creepy.

And Aaron Rodgers... that's just a bad look for him.

No good NFL football until 5PM so I'm going to get shit done while watching murder on TV. (Watching "murder" is Joe's term for the true crime programming I like to watch).

***

MOAR TEA! MOAR PILLS!

Because they care?

The MS Society of Canada’s mission is to ‘be a leader in finding a cure for MS and enabling those affected by MS to enhance their quality of life.’

We want to hear from you! This fall, the MS Society of Canada is launching The Listening to People affected by MS initiative. The nation-wide survey will be available on November 22, 2012.

More information on the MSSC's patient survey can be found here.

What is the Listening to People affected by MS initiative?

This initiative is a multi-pronged evaluation which has the single purpose of hearing from Canadians affected by MS about their quality of life priorities, needs, and barriers so that the MS Society of Canada can better inform decisions that relate to our programs, services and advocacy.

I'm interested in taking part in this if only to point out that more work and advocacy needs to be done around employment and NOT HAVING HEALTHCARE TEAM MEMBERS DISCOURAGE WELL PEOPLE FROM WORKING.

(I'm screaming on the inside.)

This survey is only open to Canadians, but when I answer it I will note the questions and post them up here for my US, UK and Australian readers (I have Google Analytics) to consider, or answer in the comments, or answer and send to your local MS agency.

I suspect that nothing will change if what we collectively end up wanting is too expensive, but hey... if you don't ask you'll never receive.

***

Am I the only one who wants to head out to Great Canadian Superstore to see if they can land a box of those President's Choice Cheesecake Lollipops *right now*?

DAMN YOU GALEN WESTON!!!! DAMN YOU TO HELL!!!!!!!!!!!!

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.

Hurry Up!

So, my Thursday coffee and conversation might turn into something. It might turn into something that fits ideally into The New Plan. It probably even fits the longer term plan.

I cannot be too confident. I do not want to be disappointed. I do not want to be hopeful.

Joe got excellent news today and so now he's even more on board with The New Plan.

Now if only the NHL lockout would be over or one of these lottery tickets pays out tonight or tomorrow night, this weekend would be the most awesome ever.

***

My NFL habit starts the weekend at 0-1. Purple lost last night to fucking Tampa. TAMPA!

***

I know exactly what to do. I just need to do it. Please let next Wednesday come quickly. That's when I find out what the outcome is of the coffee and conversation. Which hopefully will take the sting out of the unpleasantness of my two MS-related trips to hospital clinics on Monday and Wednesday morning.

***

MS has given me a body that often acts like that of 60+ woman... which I guess isn't all that surprising given that MS has given me premature ovarian failure, muscle weakness and stiff joints. I found out what it's like to have an aging body 30 years ahead of schedule.

yay...

***

I just want the days to pass. I need to get things moving forward. I am impatient when I can't act.

This might be the most harmful thing to me.