Wednesday, December 29, 2010

Auld Lang Syne

I like New Years. For one minute the future days are laid out before me like a field of untouched, virginal white snow...

then somebody’s dog takes a shit on it, an inebriated reveler barfs on it and some drunk girl throws herself to the ground, crying over some undeserving boy...

...*THAT* minute is perfectly hopeful; absolutely percolating with possibility.

I used to have the following resolutions every single year:

1. Drink a case of bourbon a month.
2. Smoke 3 packs a day.
3. Gain 30 lbs.
4. Develop a heroin habit
5. Default on my Visa payments.

I certainly failed by noon January 1. I would be content in knowing it was a better thing NOT to have gone through with what I had resolved to do and I would just carry on my merry way through the following year.

I have never really had a goal. With no real talents on which to build a life and being more interested in rejecting reality and substituting my own, setting goals beyond “Don’t be late for work tomorrow” or “Go get a haircut on Saturday” has proved… challenging.

I have never had a life goal or a plan – I just sort of rolled with the experiences and opportunities that presented themselves.

(This is how I ended up married – both times.)
(This is how I ended up living with drag queens.)
(In fact, this is how I ended up in every place I have ever lived.)
(This is also how I ended up in every job I have ever had.)

(I think you get the point.)

I have spent most of 2010 trying to figure out my future… what will I be doing and where will I be when I find myself?

Monday, December 13, 2010

Been avoiding this post

Look at the date.

Now look at the name of this blog.

Now back to the date.

Now back to the title.

This is the date that your blog would be titled if you were me and you had been diagnosed with multiple sclerosis on 12 December 2008.

So, yeah. It's my MS-a-versary. Two years.

Not as angry as I was, but still very, very angry.

Still not okay. Still very depressed. Still very much aware that my life has been limited by my disease and my future.

I have two of the three "worst-case scenario" symptoms. If I end up with uncontrollable nerve pain, please someone kill me. I've lost my memory and *TMI WARNING* consistent control of my bladder (yeah, you needed to know that!) so all I need to be is constant pain to have no real reason to go on living.

I'm in the testing phase with a urologist and depending on the outcome of a bladder function test in January we'll know if it can be treated.

I spend a great deal of my day being ashamed and embarrassed. I've barely told Joe about this. Thankfully he's been busy, busy, busy with school for three months so barely talking to him or seeing him helps cut back in the potential for embarrassing moments with my malfunctioning organs.

Two years with this disease and I still feel like I've been robbed. I'm now fairly certain that isn't going to change. I still know that it could be worse. I'm acutely aware that it probably will get worse. And no, I'm not grateful that it's not worse now. The more I have now means I will have more to lose later. I am pretty sure I don't want to lose any more than I already have.

I would have killed myself 18 months ago if Joe hadn't told me he was sticking it out when I asked him if he wanted to leave. The promises and commitments I made to Joe when we decided to get married a little less than 6 years ago are the only thing that keeps me from killing myself now. My husband is the best husband in the history of all husbands and as such deserves a much better life. I'm doing everything in my power to make sure that happens for him.

At two and half years after my first symptoms, this is the best I can do. Under my old standards, it's not good enough or enough effort. I know this when I look around my house and take stock of my life, but then I remember that MS means I have to not set the bar so high.

That's what this second year with MS has been all about... lowering my expectations. I'm never going to finish what I start or keep up with my own standards.

Maybe if I just start accepting that I won't feel like a failure every single day of my life.

Thursday, December 2, 2010

That time of year.

It is December. It's around this time of year that I start pawing through my notes, scribblings, ranting and ravings of the past 11 months to see what I was thinking, where I was hoping to be at this time, and discover just how miserably I have failed myself.

December is like a month of Mondays.

I came within three breaths of quitting my job today to go and file a human rights complaint. This man is clearly out of his element in the modern world. While I generally respect my elders, I do not respect anyone who screams and yells when they don't like what they are being told - like the truth is some sort of conspiracy designed by lazy, incompetent people to keep him from having what he wants. I have had two double vodkas, a lovely meal of lobster ravioli and my Habs won 5-1 over the Devils but still my heart is pounding under a chest so heavy it feels as though a small child is standing on it.

The good news is tomorrow is Friday. Saturday I have brow, hair and nail appointments. I only need to buy two more gifts and I am done shopping. Joe is buying his own present and taking care of his dad's present. I am in charge of my mum, his mum and my dad. My Sunday trip to GotCraft? should take care of our collective mums. Mmm, crafts.

Since we only have to buy 4 gifts, xmas ain't that complicated or even expensive around here. Since I don't believe in god, there's no tree, decorations or cards either. Just Chinese food on xmas day. My favourite seasonal song is "Dick in a Box", for the record.

This post doesn't really have an ending.

Friday, November 26, 2010

I hate this.

5,000 I.U. of vitamin D, 300 mg of Wellbutrin, 1500 mg of wild salmon and fish oils and a protein rich diet aren't kicking this depression.

That signals to me that my depression is "situational".

No fixing that.

Tuesday, November 23, 2010


So I spent Saturday, Sunday and Monday in bed, in the dark, with the mutha of all migraines.

First migraine I've had in 2 years. First multi-day migraine I've had in almost 6 years.

Other than the migraine drama, I spend a great deal of time avoiding things that lead to my left leg nerve failing. When that happens I begin to drag it like one of the zombies in Dawn of the Dead. This makes me more tired because I'm dragging around a dead weight limb. Not getting enough sleep leads to generally dizziness, nausea and endless cognitive difficulties.

MS has cost me much of my long term memory and most of my short-term memory. I mean, I remember that I got married, but I can't remember my wedding; that sort of thing.

I'm tired of failing, either physically or mentally, every single day.

But I do, because that's the nature of my disease.

This is the new normal. It rarely gets better than this, and it more than likely to get worse.

Between the bullshit that is my body and the bullshit that is my job I'm quickly losing my will to live.

Friday, November 5, 2010


I've been feeling like crap for about a month, which culminated in getting a horrible cold (flu?) over the past few days. I started coming down with it on Tuesday and by Wednesday I had a fever, chills, aching body, stuffed up sinuses and a barking cough.

But mostly I've been avoiding the page. My blog, my journal, my book, the books I am reading, it doesn't seem to matter.

I don't know what the hell I'm doing most days, so tomorrow I am going to watch "Polytechnique" and see what kind of mental fire that lights.

Other than that I've been contemplating and immediately rejecting the following ideas:

1. An economics degree
2. Looking for a new job
3. An English degree
4. Looking for a second job
5. Some sort of vocational training
6. Having a nervous breakdown
7. Shaving my head
8. Staying in bed for a month
9. Colouring my hair blue.
10. Developing an eating disorder

I have no idea what to do with my life. All I know is that I am in a holding pattern until Joe gets his first post-degree job. Until then, I just wake up in the morning, meet my spousal obligations throughout the day and go to bed.

Looking forward to going to and from work in the dark starting Monday.

Fer sher.

Tuesday, October 12, 2010


When I was born…
I had a mum and a dad.
Two grandmas and two grandpas.
Three great grandmas and three great grandpas.
Two aunts and two uncles.
One first cousin.

When I was five…
I had a mum and a dad.
Two sisters.
Two grandmas and two grandpas.
Three great grandmas.
Two aunts and two uncles.
One first cousin.

When I was ten…
I had a mum and a dad.
Two sisters and one brother.
Two grandmas and two grandpas.
Two great grandmas.
Three aunts and three uncles.
Two first cousins.

When I was fifteen…
I had a mum and a dad.
Two sisters and one brother.
Two grandmas and two grandpas.
Two great grandmas.
Three aunts and three uncles.
Four first cousins.

When I was twenty…
I had a mum and a dad.
Two sisters and one brother.
Two grandmas and two grandpas.
Three aunts and two uncles. (The third uncle is still alive, he’s just not my uncle anymore.)
Seven first cousins.

When I was twenty-five...
I had a mum and a dad.
Two sisters, a brother and a brother-in-law.
Two grandmas and one grandpa.
Three aunts and two uncles.
Seven first cousins.

When I was thirty...
I had a mum and a dad.
Two sisters, a brother and a brother-in-law.
One nephew and one niece.
Two grandmas.
Three aunts and two uncles.
Seven first cousins.

When I was thirty-five...
I had a husband.
I had a mum and a dad.
I had a mother & father-in law.
Two sisters, a sister-n-law, a brother and a brother-in-law.
Two nephews and one niece.
Two grandmas.
Three aunts and two uncles.
Seven first cousins.

Now at age thirty-six...
I still have them all, except I’m down to one grandma.

This is my family's math; addition and subtraction over the years. Even though we've lost the matriarch of my paternal family, we're still a bigger bunch than when we started out.

I wish I knew my grandma better than I did, but what I did know made for some lovely memories.

My heart was with them yesterday, even if I wasn’t. I am filled with gratitude that I have had these people in my life; even though I have disappointed them, have major personality clashes with them, they drive me crazy and I drive them crazy. They are my people, my clan. I miss them right now more than I ever thought I would.

I hope that my grandmother had a good life and that in her last moments she was able to recall that there were at least 19 people whose life was forever changed by her being in it and loved her for it.

Thursday, September 16, 2010


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.

Monday, September 6, 2010

Lease signed.

It's ours. We have keys and everything.

I've started packing. I want out of here as soon as humanly possible. As soon as we were told that we weren't wanted here it's like this place became sullied, like it wasn't home anymore.

The place we got is really small compared to the place we have now, but most of our stuff will fit, and that's all that really matters.

I just want to get all of our accounts moved, the mail forwarded and get out. I don't want to be here any more.

Wednesday, September 1, 2010

Not Negotiable

By September 15, 2010 I wish to have the following:

1. A 1 bedroom apartment,

2. SouthNorth of Kingsway,

3. West of Victoria,

4. NorthSouth of 1st.,

5. East of Main, and

6. For $900 a month or less or $1000 a month for all utilities included.

How hard can that be?

According to Craigslist, pretty fucking hard.

It's true that I don't have to be out of my apartment until October 31, 2010, but if we're out by September 30, he'll give us September's rent back. That means we get a cheque for almost two grand on the day we move out when you include the eviction penalty and our security deposit IF we can get out of here by September 30.

The thing of it is, September 30 is the day we fly to Toronto to be back in Ontario in time for my cousin Angela's wedding. We need the place for September 15.

We've lived in this place for five years. We've got good references and I'm fully and completely employed and, if I might add, Joe and I are a lovely couple who work hard and pay our bills.

We've been informed that we were only one of several people who applied for that apartment on the corner we so coveted and also the landlords won't call back if we aren't the chosen ones. The property manager went so far as to say if we hadn't heard by tonight we didn't get it.

The time now is 19:51 PST. We're banking on the fact that we didn't get it.

I'm freaking out. I'd have another drink or 12, but I am a responsible adult who has to work in the morning.

Edited to fix the absolute physical impossibility that happens when you mix up north and south.

Friday, August 27, 2010

I'm lazy and don't have enough time.

I totally posted this elsewhere on the web.
But this is why I am lazy...

I have put in 8 hours at the office.
I have put 500 words of non-fiction on paper.
I have researched public spaces for a product launch party for 30 to 50.
I have put together the to-do list for that event.
I have researched and put together a short report on 5 e-commerce merchant account services.
I have eaten food and accomplished the unthinkable... I hit the targets in every single area I'm tracking.
I have done my strength training and physiotherapy.

It is not quite 9:30 PM but I still have half a dozen things left to do, and my stupid effin' to-do list won't load in a timely fashion tonight.

I am posting this blog. Then I have to sweep the floors, layout my clothes for tomorrow, put my purse and stuff together for the office, track my MS symptoms, and file my nails. I need to have a shower and dry my hair. I have to do my shot. Then I want to get another 500 words down before I fall asleep watching Colbert.

I am not sure that it is humanly possible, but I am going to step forward and try.

Tuesday, August 24, 2010


I've been trying to stay quiet these days.

I'm still working, still doing my physio too. My symptoms are mostly stable, but I've found that my numb fingers change to numb hands when I am tired or angry.

My hands, I don't like them when they are angry.

I've taken on a few hours a week doing administrative/research tasks for a friend with a small but growing business.

I'm trying to write a lot and failing.
I'm trying to stitch a lot and failing.
I'm trying to get my house back to the level of organization that it was before I got sick and failing.

I've lost three pounds since I started eating more than once a day.

I've started lifting light weights and walking for 30 minutes on my lunch hour.

I will lose 15 lbs before my cousin's wedding if it drives me crazy to do it.

I was called a "cripple" on the bus for walking too well with a cane. There was more to it than that, and I showed incredible restraint by not beating the woman senseless with my cane.

Sunday, August 15, 2010

"When Life is Hard, You've Got to Change"

I am really bad at having mercy on myself.

I am also the first one to make excuses for myself and then hate myself to doing it.

I have been unable to look in the mirror without cringing for about two years and a week or two ago started figuring out what it was going to take to get myself back. I've consulted with my neurologist, physiotherapist and next month I will have further conversations with my family doctor and psychiatrist.

I've been cleared to lift weights absolutely no heavier than 5 lbs with strict instructions to stop, even mid set, if I start losing control of the movement.

I'm still struggling with depression, anxiety and food disinterest. Since I don't eat convenient junk anymore and still have my pathological fear of grocery stores I often have difficulty meeting the minimum caloric, fat, carbohydrate and protein amounts every day.

I pushed myself over the 1,200 calories a day minimum with a vodka tonic two days last week.

I joined SparkPeople. I'm not really good at "group hug" forms of support but it's pretty easy to avoid the evangelists of the program.

It is so hot upstairs I've got only a minute or two to grab my laundry and get out without becoming nauseous.

I am really sick of MS taking my life away. I have to find the will to fight even harder to keep what I have. If I am strong when my next relapse takes things away I will have less reconditioning and rebuilding what has atrophied when it lets go.

I am suddenly struck with tiredness, which is strange and unsettling for me. Caffeine time.

Saturday, August 7, 2010


Went for my three month follow up after starting Copaxone.

I have regained about 95% of what I lost during my first relapse. That's the great news.

My coordination is improving, I have more vestibular training to do in order to get the most out of yoga and pilates and some kinetic training to improve my cardio on the bike. My optic nerve is healing and my strength is improving on my left side. I can walk straight, walk on my toes and walk on my heels. I can stand with my legs together, arms straight out and close my eyes. I am sleeping 6 to 8 hours a night and still functioning in my day. I'm still having an unpleasant symptom that makes me feel awful about myself, but I'm not likely to get an answer on this until late this year or early in the new year because it's not something that is going to kill me. I have minimal spasticity remaining in my left leg. I am still getting nerve fatigue but she couldn't wear it out in a 15 minute test like she could last year.

I have to see the Copaxone nurse because some of my bruises have turned into spider veins which is not cool.

Since I don't have anything "interesting" going on, I won't get another MRI until A) I have a significant relapse or B) have one considered in three years. Which is good, because I don't see the point of doing an MRI on someone who is, for all intents and purposes, healthy.

I am really enjoying the Ativan. Really enjoying to the point where I think it might be wise to take the weekend off because this feeling of absolutely not giving a shit about anything can be quite habit forming. It's just so good.

And 30 of them only cost $11. Even without Fair Pharmacare I'd totally put the money out for that.

Following up with the Neuro in February 2011, after checking in with my annual poke n' prod at the family doctor and the MS neuro-psychiatrist in September.

Considering asking my family doctor to send me for a consult with a reconstructive surgeon because I would LOVE to get rid of these breasts of mine. My back, neck and shoulders are just killing me even with good, properly fitted bras. But it's still under consideration.

After those two appointments I will have a more accurate picture of what it is I need to do to save my own life.

But for now, I'm going to consider what to do this weekend since my house has been neglected for more than three weeks and that makes me feel awful about myself too.

Wednesday, July 28, 2010


Not the country, my Copaxone support nurse.

She calls me every month to check in on my "success" with the daily regimen of my injectable disease modifying drug.

It feels a bit like a pep talk but I realize that Teva pays a lot of people a lot of money to keep me on this $1,400 a month drug. I've already decided that I'm sticking it out until my next relapse, whenever that happens. I'm generally stable, with small things improving because of "Magic Hands" Ray and the physiotherapy exercises I manage to throw into each day and maybe the Copaxone.

Are the improvements because of the Copaxone? I don't really care. I'm not in a wheelchair, I've got 20/20 vision, I can generally control all of my limbs and I only need 7 hours of sleep.

When you've got MS, that's about as good as it gets. I have distinctly lowered the expectations for the remainder of my life.

It's going to be *AWESOME* living like this when I know that almost every woman I'm descended from lived to be 80+ with most of them getting beyond 85. I've probably got 50 more years of this shit to deal with.

I have my three months on Copaxone follow up with my neuro on 5 August, right after an appointment with my physiotherapist to figure out why yoga and pilates movements involving the movement of my head make me so dizzy I feel like puking.

This whole getting exercise thing is going really fucking badly.

I've been just obsessing on cigarettes and lattes for about 24 hours now, knowing that in my old life that would solve this weight problem by the first of October, but I'm pretty sure it would kill me now.

Age and MS have completely changed my problem solving skills, much to my near-instant-gratification-loving-brain's chagrin.

Oh, to be 30 again. It seems like a lifetime ago.

Wednesday, July 21, 2010

Fuck this

Having MS is needlessly complicating my life.

I have MS and access to a host of specialists in non-neurology disciplines through the MS clinic. The problem is that there are only one or two of them and they don't work at the clinic full time.

I've been having anxiety morning, noon and night for about a month now so I am pretty sure that it isn't going to go away by just thinking calming thoughts. Knowing that the psychiatrist at the MS clinic isn't available more than one day a week, I called my family doctor.

She won't deal with me because the anxiety is probably MS related, and tells me to get in touch with the psychologist she referred me a year ago. I call that psychologist and she tells me that the anxiety is either related to MS or to the anti-depressant the psychiatrist at the MS clinic put me on, so she won't touch me because she doesn't treat people with MS because she knows nothing about it. (I was referred to her because of stress and anxiety, interestingly enough.)

All I want is some fucking Xanax and to get on with my life. There is no fixing me. I am broken. This is not going to get better through therapy or exercise or whatever. Just give me the fucking drugs so I don't care any more and let me plod along.

It's funny, since I gave up all hope of ever doing better or achieving anything with the rest of my life, my job bothers me way less than it used to but the general anxiety and the dreams about being trapped on the stairs at my parents house whilst black balaclava wearing strangers shine flashlights and take photos through the window got worse.

So I'm on the cancellation list for the psychiatrist at the MS clinic and have an appointment set for September 20 at 2 PM.

I could fucking kill myself by then, but hey, at least I won't see someone who doesn't treat people with MS.

Monday, July 19, 2010


I hopped on the scale this morning and 15 minutes later walked to the bus stop completely devastated.

I am now 11 stone 13 lbs. or 74.75 kg (Yes, I know only that isn't in pounds, a weight we'll all understand. It's just that old school Imperial measurements and metric make it sound better than it actually is.)

Now I know that I am supposed to have high self esteem and it's not feminist-ly correct to judge about body size and type, but you know what - I do not give a fuck about that right now. My body and I are at war and it is not to be trusted under any fucking circumstances until appearance and action improves.

You see today I crossed a threshold that I swore to myself I never would. I now weigh 167 lbs. This is the most I have ever weighed in my entire life. I have never been this fat in the entire history of my 36 years on earth.

In my previous lives, every time I would put on winter weight I had one of two responses.

1. Cigarettes, diet shakes, full fat lattes and more cigarettes.

2. Join a gym, lift weights and do cardio until my lungs could take no more, cigarettes and eating whatever the hell I wanted in reasonable portions.

In two months I would be back down to my 130 to 135 monthly fluctuation and everything would be fine until the next winter.

When I moved out to BC I didn't put on winter weight anymore and since I walked pretty much everywhere the SkyTrain couldn't take me I didn't get fat until I started getting sick with MS.

Now its completely out of control and after a talk with my physiotherapist I have been given two choices for exercise - yoga or pilates.

I am leaning toward pilates at this moment because the pelvic floor exercises might help with the most unpleasant of my MS symptoms, but yoga is much easier to come by if I can find a school/instructor who will let me do it with my shoes on.

I don't know what the point of this post is other than to say, "I really hate myself for letting myself go".

And with that I'm going to walk around the block and then ride my stationary bike, because I am freaked right the fuck out.

Tuesday, July 6, 2010


In one week I will be 36. Barring some sort of disaster, I will have exactly doubled the life span I had planned on when I was 17.

I can't really explain to anyone the screaming that is going on in my head. I want to speak, to tell, but I can't because it's a secret/it's private/it will hurt someone/it will hurt me.

Every time I open up this "new post" window I hear a voice in my head say "You'll never get a job, ever, if you keep this blog."

What the hell makes that voice think that I'm ever going to apply for a job that will require a google search, I have no idea. I'm damaged goods and as such I've given up on having much of an interesting future.

The heat of the day didn't do as much damage as I thought it might, but I did get some weak limbs that were harder than normal to control and a little bit of cog fog. Nothing too tragic though.

I'm not looking forward to the next few days of over 25 degree weather. I can deal with it, but my skin just hates the feel of breezes on it so I have to wear long sleeves all the time. Sometimes I can get away with a 3/4 sleeve if it's not too windy.

Amy tagged me on a note called 25 random things. I am tempted to follow up on that, but right now my braynz are just too raw to fill it out with anything more than all the screaming.

Posting screaming in public will alienate me further from the human race. I'm trying to be better at relationships.

Sunday, June 27, 2010


My brainz don't feel so good.

The physical symptoms are easy to ignore these days, but having a thought or memory is becoming increasingly difficult.

Apparently, there's nothing they can do... I just have teh dum.

I'm pretty sure that this is now the worst thing about MS now that the fatigue isn't an issue. I find it difficult to live like this and be at all interested in life or the world around me.

I am seriously considering giving up the news and my twitter account because I can't think logically or critically about the world around me. I can't focus long enough to read more than a few paragraphs out of a book. I can't put coherent sentences together; often putting different tenses and switching from the first person to the third person and back again in the same sentence or paragraph. I'm so tired of feeling stupid all the fucking time.

Sunday, June 20, 2010


Is the deal with MS that you either get to walk straight or think straight but never both at the same time?

I have had all sorts of cognitive and memory stuff going on that's driving me crazy.

I've also had all manner of emotional issues as well; crying when I can't solve a puzzle, I hear a particular song or trip on my left foot.

I know that I am not in my right mind, and it's driving me batshit crazy.

So, on July 17 I'm throwing myself an Ultimate Dance Party post-afternoon burgers, dogs and sangria birthday party.

If you're in Vancouver, you should come.

Monday, June 7, 2010


Random strangers often comment on my public transit cane, and immediately start recommending a acupuncturist/therapeutic touch practitioner/ear candler/what ever kind of whatever that saved their lives. When I say "I have MS, that probably isn't going to help me." they all put on this sad frown and say "Oh, that's too bad. You look so good though!"

You. Look. So. Good.

The four words I fucking can't stand any more. They rank right up there with

It could be worse.


Look on the brightside. (Okay, that's five words and I cheated. Fucking sue me.)

What I really want to say is

"WHAT the fuck did you think someone with MS should look like?"

but what comes out is

"Thank you."

I think I make Joe uncomfortable with my cavalier attitude about future disability.

I often say things like "That'll give you practice for when I can no longer lift my arms." or "I think I should get a scooter now to practice for the wheelchair I'm going to end up in."

I'm trying to be realistic about this. While it's certainly not guaranteed, it's not outside the realm of possibility.

I'm okay with this bit of information. Novantrone (mitoxantrone) saved my life and having a 0.8% chance of leukemia is way better than the alternative.

I suddenly got really bored of this so I quit.

Saturday, June 5, 2010

One foot in front of the other.

I have been walking around the block on my lunch hours for the past two weeks. At first I thought it was because of my pathological fear of getting obese, but I realize that there is a greater benefit.

My nerve fatigue in my left leg rarely happens anymore. I can easily get around two square blocks at a pretty good speed without it happening, and then make it up three flights of stairs up to my office.

I've been doing physiotherapy exercises throughout the day, going to see Ray "Magic Hands" Ranger on Thursdays for $15.75 massage therapy, walking every day, and watching what I eat (I try to make 50% of what I eat each day fresh fruit and vegetables) and the strength in my leg nerves is improving.

I walked the two blocks around my office on my lunch hour, worked the rest of the day, met Joe for some dinner and then about 8 PM walked several more blocks to the hardware store for some items to fix up the apartment tomorrow and I made it with no nerve fatigue.

I still feel like I'm talking like a three year-old who's learned not to shit her pants anymore, but what the hell.

I still don't trust my body. I know that it will betray me when I least suspect it. But it's nice to know that I've got a pretty good chance of being able to get myself into a position where I can call for help when it does.

The Copaxone has left me feeling like I've been running into a lot of door frames and table corners, along with these strange itchy lumps two or three days after shooting into my arms. The other parts of my body don't seem to react like that. My Copaxone nurse doesn't think it's anything to worry about and it will probably stop in the next month.

Whatevs... I'm not getting sicker so I guess it's doing something.

This weekend is going to be productive. It has to be, because the last two have been anything but.

Now I'm going to get in my pjs, have a CC and CCZ, and do some prioritization for tomorrow.


Go me.

Tuesday, June 1, 2010

Because I have the gift of literacy...

...I have a column in a legit online publication.

Odd how that happened, but I think I am glad that I did.

For now. We'll see when next Sunday rolls around and all I've got is "This is shit." repeated 1500 times.

Wednesday, May 26, 2010

World MS Day and things that are apropos of nothing.

(insert sound of one single party blower here)

I've been on Copaxone for one month now. It was really uneventful until yesterday when my injection site on my right arm was hard and itchy all day and it continued into today. Don't what that is about, so I'm going to call my Copaxone nurse tomorrow.

My symptoms are stable for the most part. Still numb fingers and toes, wonky left leg, sketchy balance and a spastic left calf. Ray of student RMT fame has been working that calf and my feet with massage therapy and I can feel my leg unwound for days a time now. I can't meet with him this week and I'm sure I will miss it.


I've been thinking a lot about secrets these days. I think it's because I've started writing again and my opening sentence from yesterday isn't something that I think my mother would be pleased with and I think that my grandmother would have a stroke at the mere idea of it.

I realized that for me to really write publicly about what I want to write about must wait until my grandmother has passed and my mother is senile. That makes me sad because that's going to be a long freakin' time.

I've done very little in my life that I am proud of. Two of those things have to be kept secret for the time being (See: Grandmother). The other two are really only impressive to me and that is it. Four things.

I find that I have lived much of my life waiting for better days because the present has been so crappy. I still feel like that most days I am at work. That tells me that the antidepressants work to keep me from killing myself but do not give me a false sense of happy.

Which is kind of a relief now that I consider that.

Next month will mark a year on Wellbutrin. Given how much generalized anxiety I've been having lately I'm planning on making another trip to the neuropsychiatrist - this time for some Adivan and cognitive testing.

Since Joe has decided that I am going to be an economist I need to figure out what is wrong with my brain that will hold me back from scholastic success. I'm fucking stupid all the time now and I know that some of it is related to the MS and some is probably just understimulation. There's no complex thinking in my life on a day to day basis unless I go looking for it.

I do wish things were different and I do live a lot of my life waiting for better times in the future. Maybe I'm making peace with that.

And the book says, "We may be through with the past, but the past ain't through with us."

Sunday, May 16, 2010

Stuff that matters to me

A List

(Offered without comment or reason and only in order that they occur to me. If you have a question, comment.)

1. My marriage.
2. My health.
3. My spouse's health.
4. Our families.
5. Making our life comfortable.
6. Good Indian food.
7. Good governance.
8. Good character.
9. Good Thai food.
10. Good manners.
11. Good bath products.
12. Good Japanese food.
13. Good cocktails.
14. Good thinkers.
15. Good burgers.
16. 16 out of 18 items on this list.
17. The Montreal Canadiens winning a(nother) Stanley Cup in my lifetime.
18. Figuring out what I want to do with what is left of my life.
19. Being organized.
20. The Daily Show.
21. Rick Mercer.
22. Shoes.
23. My friends.
24. The people I like and respect for their public conduct.
25. Bacon.
26. The word "Fuck".
27. Remembering where I came from.
28. Writing.
29. Collecting Airmiles.

30. Goading people into helping me raise money for the MS Society of Canada.

Tuesday, May 11, 2010


Best. Team. Evar.

Thanks Ladies, Joe, Ben and Gl*tterB*tch-In-Training, Anya.

Next year we're shooting for Top Ten and 5K.

And water-resistant crowns.

Sunday, May 9, 2010


Happy Mother's Day to my mum and my Grandmas. I have truly been fortunate to have these three women in my life. I am glad that I finally got old enough to appreciate them.

But today is shared with a sombre anniversary. My grandpa died 11 years ago today. The day in 1999 was also Mother's Day but since Mother's Day isn't always on May 9 he died on May 9 not Mother's Day.

They say that young girls imprint on their paternal influences and end up marrying their fathers when they become women. I don't think that's true in my case.

I often wish that Grandpa had been alive to meet Joe. I think they would've got along like peas and carrots. They're a lot alike.

I miss my grandpa all the time. I wish that he could have seen me get my life together because he died when I was such a mess and living a life in disarray. I wish he had been there on the other end of the phone when I found out I had MS, if only to calm Grandma down.

I realize that not everyone gets to have a Grandpa, let alone once as great and wonderful as mine, in their life on a regular basis for almost 25 years of their lives. I know that I am fortunate to have had a pretty wonderful man and a powerful example of what a great husband could be in my life.

But I am regularly sad that he seems to have missed out on the best years and the years where I dealt with hardship and challenges in a non-destructive way. He deserved to see more and better of me than he did.

So after celebrating on the phone with two of the three women without which this life of mine would not have been possible I just had to say that I miss my Grandpa and I wish he were celebrating with the mother of his children today.

Edit: I do know how to spell "sombre" I just don't always get the editing right.



Whatever trees there are in my neighbourhood I did not grow up with them. Between this pollen and the dust in my office the post-nasal drip is alternately making my nose run or making me choke and cough.

This sucks.

I've been thinking too much and too often these days. I really want to hang out with my friends.

Sometimes it's difficult to be an extrovert married to an introvert. I love the driven, sketchy artist thing Joe's got going on, don't get me wrong, but I would have people over a lot more if he actually liked people being in the house with any regularity.

So now what I want is a Salon. Every month or six weeks getting women I know together to have some wine or cocktails and just talking about stuff we're doing, or reading, or whatever. Hell I don't even need to know them, I just want to hang out with them and do something fun and interesting.

That's my brilliant thought of the week.

My Copaxone is going pretty well. I don't like the reaction I get after injecting in my thigh. I get a big hive like reaction an inch or so from the injection site for about 10 minutes. That's the only place that happens. I know that that is a pretty normal reaction that lasts about as long as it is normally supposed to, but I don't like it.

I had more I wanted to write about by my runny eyes and nose are driving me bonkers. I'm going to do my shot and then settle in for Betty White on SNL. I had to stop reading Twitter because there were too many spoilers from the east coast viewers I follow.

Jerks flaunting their ability to live in the future...

Wednesday, May 5, 2010

One Week

I've done 8 shots now. It's still frustrating me to give myself shots that I have to look at, even with the auto-injector. I like the speed with which the auto-injector administers the Copaxone. I find that straight from the syringe is just too fast.

I'm pleased with my progress at getting this shot integrated into my life though.

One thing I am NOT thrilled about is the CCSVI advocates clogging up my comments, following me on Twitter and sending me messages on Facebook.

I'm really happy that all these willing victims are ready to martyr themselves because it's going to take at least 5,000 people running off and getting the "liberation procedure" before we find out what the stroke risk is. Since solving the problem of my wonky left leg and intention tremor IS NOT worth the risk of being left in a wheelchair, a vegetable or dead, I'll wait, thank you very much.

I'm not going to advocate that the test and the surgery start taking place here in Canada unless every single person who has it done kicks in 2/3 the cost and signs a waiver saying they can't sue for malpractice because the surgeon didn't know how to do the procedure and it was so experimental they didn't know the inherent risks.

A vascular surgeon that my neurologist at UBC Hospital talked to thinks that the risk of stroke could be as high as 1 in 100 to 1 in 5000 depending on where the narrowing/blockage is.

Neither of those numbers is worth the risk to me right now. I want to see more study, to start training for the professionals to diagnose CCSVI and the surgeons to treat it, and to find out if the risks outweigh the benefits.

In the meantime I'm doing Copaxone and doing my physiotherapy and yoga. I know for sure that those things won't kill me.

Friday, April 30, 2010


Tonight will make shot number four.

So far it's been surprisingly hassle free. I don't have the constitution to jab myself yet, so Joe has done the last two nights and tonight I will use the auto-injector because I just can't bring myself to inject myself without getting light headed.

I feel like such a baby because rationally I *know* that the needle itself does not hurt, it's the medicine going in that hurts and that doesn't hurt until pretty much after everything is cleaned up.

It's so stupid of me to be afraid like that.

I'm thinking about going in for a shower, putting on my pjs and just getting the stuff out and trying to do it without thinking about it. I'm pretty sure it won't work like that because there's a fair bit of prep to do and that leaves me time to think.

I'm tired. Maybe I should just suck it up, do the shot and go to bed with a good book.

Wednesday, April 28, 2010


Today began with me having to face my own future.

Because people are assholes I have to travel by bus with a cane because I can't keep my balance standing up on a bus. (I also use a cane when I am going for either distance or speed because it helps my balance and that means I don't have to work as hard to walk) I sat in the first seat. It faces the wheelchair seat. Today the wheelchair seat was occupied by a woman in her late 50s/early 60s. I smiled at her when I sat down.

She said "You're so young to have a cane. You must have MS."

I admitted that I did and she said, "I went secondary progressive two years ago. I've been in the chair about 18 months." She went on to explain that she'd been diagnosed in the 90s and had been doing good for 15 years and then started going downhill and all the steroids and DMDs were powerless to stop it. She asked when I was diagnosed and when I told her she proclaimed that I was diagnosed at a "good time" because so much is changing.

Then we had to have the obligatory conversation about CCSVI and what we thought about it and weighing the pros and cons of going to Poland or Cuba or Italy to have the procedure done.

When all that was said and done we just sort of sat there looking at each other. She smiled at me, I smiled back. I realized that I must have a look of abject horror on my face because that is my MS nightmare.

(My full blown absolute terror is unending nerve pain, but the chair is right up there.)

I was also having some panic about starting Copaxone and really reevaluating why I was doing this, but I do know why now. It is very clear.

If 5 or 10 or 15 years from now I have a relapse that fully disables me I do not want to sit there thinking "What if I had done more?"

I couldn't live with that guilt knowing that I had options to put up a fight with this disease and I didn't take them. I've read the scientific literature and there's a track record with Copaxone after coming off Novantrone. There's a 15 year study showing that it does make a difference over longer periods of time.

MS doesn't come with a whole lot of options so I've got to take what I can of what's offered. When I get paid I'm walking down to Unity Yoga and asking if they'll teach someone who has to wear shoes (that has been a deal breaker for 4 other yoga studios). I'm walking every day. I'm watching what I eat and trying to manage my symptoms the best I can.

I also need to lose 30 lbs by the end of September because my cousin Angela is getting married and I am the hot sister.

My left arm has received its first shot. Its reaction is mild and it doesn't hurt. I'm just really aware of it in a way that I have never been aware of of my upper left arm before. Using the auto-injector made it really easy to get to the back of my arm and administer the shot. Tomorrow my left thigh will get the shot and I'm going to try it manually.

That should be, uh, something?

I think I am making the right decision. Joe's super supportive of the whole thing and sat through the nurse-led self-administered injection training with me. Francine was really nice and very patient.

I had convinced myself that it was really, really going to be a stabbing pain, but I didn't even feel the needle go in and thought for a moment or two that the auto-injector had misfired until I started feeling the drug coming into my arm. It was so not a big deal. I had convinced myself of much worse. Anticlimactic is probably an understatement.

I started out this day being really terrified of the future and its possibilities and I'm finishing this day feeling like I am taking an active part in trying to achieve the best future outcome that I can.

I don't like to think about tomorrow much, but tonight I'm pretty content with the choice I made today.

Tuesday, April 20, 2010


After 3 months, countless phone calls and cursing the very idea of 3rd party insurance, it finally happened.

Manufacturer's Suggested Retail Price = $1,410.40 per month.

Thankfully because of Joe's SFU health insurance I only had to pay $282.06, but that should have been less if the private company that administers the BC Fair Pharmacare program would stop believing that I live in Chiliwack. They can't seem to get it out of their computers that I have never been to Chiliwack, let alone would have enrolled in Fair Pharmacare from there. If I can get all of this sorted before my next prescription refill I will not have to pay another cent for any prescription until next year.

Tomorrow I call the Shared Solutions nurse to ask her to send someone over and teach me how to give myself subcutaneous injections. Joe's going to learn with me so we'll be watching the DVD that they sent me with my MS backpack. I'm sure it is riveting.

Should I take notes?

This has been a bureaucratic fucking nightmare for 3 months, mostly because no one who's used to only dealing with the government has ANY idea how to deal with a private company. The administration of Fair Pharmacare is done by a private US company and it shows. The special therapies Pharmacare program is administered by the Ministry of Health and that shows too.

But by this time next week, I should be a full time Copaxone user.

edit to mention: I got 490 Airmiles for this prescription. It costs just over 3000 for a single return ticket to Ottawa.

Sunday, April 18, 2010

This is not like me.

If you have known me for more than about 10 minutes in my so-called previous life, you will know that I love coffee.

It was the fuel to my flame, the energy in my sun, the valium to my mood disorder.

It was the nectar of the gods if I believed there were indeed gods.

All this has changed since my diagnosis because my wiring has been all screwed up.

Sometimes coffee really tastes bad to me. Doesn't matter how cheap or how expensive (but I can usually tolerate expensive for longer than cheap) it just tastes like bitter dish water.

I'm told that MS can be effecting either my sense of taste or smell thus making me think that I don't like coffee anymore. My caffeine intake has switched almost completely to CocaCola (and if anyone even suggests Diet Coke, please, die in a fire) and I'm wondering if that's part of the problem with my attempts to try and drop these 30 lbs I've gained since I stopped moving properly.

When I drank coffee I drank it black - no cream, no sugar. Now I'm drinking 200 calories at a time of Coke probably 3 or 4 times a day because I need the caffeine to control my fatigue.

(between the Coke and the Wellbutrin, I've only had mild bouts of fatigue that are solved by just sitting down and resting, not having to sleep. Though I do fall asleep pretty much every night by midnight if I stop drinking Coke after dinner.)

I know I love coffee and I know that this taste change is a result of my stupid brain. I poured myself a coffee about 15 minutes ago and added a brown sugar packet to it and now it's good. I don't know how long this will last, but I think I've found a way to switch up my Coke drinking for coffee.

MS sucks. Sometimes in the most stupid of ways.

Thursday, April 15, 2010


Today I broke a sweat at work. I was looking for a particular box in the office storage area but ended up having to move about 80% of the boxes to make sure that the one I was looking for wasn't there. It wasn't.

These boxes were heavy, but not irresponsible to lift heavy and I moved them all around with little difficulty. It was hot in the room as well, and other than a little pause to catch my breath because I'm woefully out of shape I did it all without getting exhausted.

Then I went up to my boss' office and purged the top of his desk of every useless printed email from 2009 and earlier (I found spam emails dating back to 2006). I have almost 1000 sheets of paper that can be printed on the other side, 3/4 full blue box and a full trash can of stuff that cannot be recycled or reused.

The cleaning makes me mentally feel better about my surroundings but the physical work from today makes me feel more confident in my body's ability to do its jobs. Sure I am not counting on it working well every minute of every day, but I have a little more confidence in my ability to do things that will help make me stronger and help me lose the 30 lbs I've put on since my legs started failing a year ago.

I've had Christina Aguilera singing in my head all day.

"Don't talk at me that way
Cos I ain't never gonna change
And if you're talking about my life
You're only wasting your own time"

I'm sassy today.

It feels a-MAY-Zing!

Tuesday, April 13, 2010


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!

Tuesday, March 23, 2010


I have been really, really trying to do things that will result in me getting a life for the past week or so. It's frustrating, because sometimes I am genuinely tired, but a lot of the time I've just convinced myself that I am tired so I can be lazy.

I am so lame.

I've been thinking a lot about what is holding me back from progress. I've come a long way in a year, I know this, but I'm still not *right*. It came to me today when I was trying to get myself off the floor. (I had sat down on the floor on purpose, I didn't fall.)

I am trapped in this body.

A body that doesn't work right or consistently.

A body that doesn't look at all what it looked like when I was well.

A body that I can't trust and I can't seem to change. Seems like every time I go to try to fix one thing that's wrong the fix causes something else to malfunction. It's bullshit.

Very truly, I feel like my body is my enemy; that it's the reason I'm so unhappy and swing from merely being annoyed and bitchy to massively hating my life and all situations in it from day to day. (Not generally hour to hour, unless something really full of bullshit happens during a given hour.)

Is it at all possible for anyone to come to terms with this without turning into a stark, raving Pollyanna-Let-The-Sun-Shine-In-and-Just-Think-Positively-No-Matter-What-Kind-Of-Bullshit-Is-Going-On-Because-It-Could-Be-Worse, The Secret reading nutjob?

I've spent sometime thinking about this. I don't think you can unless you can get to the point where you're okay with lying to yourself. Or your symptoms have been at bay for a while. That's just a false sense of security, because you know - You. Know. - that MS can kick the shit out of you one day without warning and you've got no recourse.

That said, I'm still putting in 40 hours a week. I'm generally not falling into bed with exhaustion before or after 11 PM. The HRT has fixed my hot flashes for the most part.

"Look on the bright side, it could be worse."

Do something that will make me feel better:

Join my MS Walk team! If you can't walk with me in Vancouver you can send me your money!

Or you can use your links on the right to pledge my team mates Margaret, Joe, Jeanine, Erin or me individually. Every dollar matters!

The UBC MS Clinic has submitted a CCSVI two-year research AND treatment study that will cost $3,000,000. We need to raise the money so we can find out exactly what the deal is with CCSVI and MS.

Thanks peeps!

Wednesday, March 17, 2010

*le sigh*

I am slowly coming to accept that the job I have is the job I have. At this point I've been out of a resume worthy job for over a year, and the job I've got is probably the best I can do at this point.

This makes me want to cry, because everything I'm really good at doing is not a skill set my boss is looking for. It is the same thing every single day. Download and print his email, open his mail, transcribe the emails or letters he dictates, make his photocopies, file.

Lather, rinse, repeat.

I'm grossly underpaid for the kind of high maintenance this guy is, and he's acting like I should be glad to have his pittance. No extended benefits, not even an MSP kick-in, no extra vacation. I've been warned by the woman who works for the accounting arm of his company that he will try to pay me out the two weeks rather than give me the two weeks vacation I am entitled to under BC law.


At this point, this is it and it pays the rent and keeps the wolves at bay. But my goodness it's boring. The only thing that is good about it is that he doesn't dock my pay when I go to the doctor and I can wear yoga pants and baseball caps to work if I want to.

I haven't come to a level of acceptance that allows me to put this job on my resume yet, but I am sure as the fog of denial lifts it will come to be.

On the Copaxone front:

My Pharmacare coverage is in place leaving me on the hook for $1500. I want my extended medical to pay that $1500. My neurologist sent in all the forms (I know this because the insurance company called to confirm the DIN of Copaxone because it was missing).

It took them TWO WEEKS to send the forms to the Administrative Department that Signs Off on Such Things and now it has been another two weeks. Still no word. The last time Joe called (he is the primary, I'm the dependent.) they were very clear that when it was approved *THEY* would call *HIM*.

For my American readers, I got "government health care" in 48 hours. My private insurance company is still thinking about $1500 worth of $18,000 a month later.

The private sector is *so* much more efficient, my lily white ass.

Wednesday, March 10, 2010

My MS backpack is here!

These are the contents of my MS backpack. I had it delivered to my workplace today. I am not even going to go into how Purolator screwed up the delivery of this backpack THREE TIMES, but I guess the fourth time is a charm.

Because I enjoy lists, I will list what is in my ugly, lame backpack.

1. Insulated lunch bag with cold pack insert - This is for taking my Copaxone outside.

2. Refrigerator lock box. Presumably the pre-filled glass syringes should be in a box that is locked. The keys are magnetic and they'll be stuck to the fridge door and say "COPAXONE" on them, so it's not going to take a rocket scientist to get my fits out of the fridge. I realize that this lock box is probably more for the safety of children who live in the home, but I'm far more likely to have a junkie break in looking for drug paraphernalia than a small child near my fridge. Not that a junkie break in is at all likely either.

3. Autoject2 - This is an auto-injector. It is patented and has registered trademarked name.

4. Needle clipper - I guess in case the needles that come on the pre-filled glass syringes are too long.

5. Travel box and travel card - Holds a week full of syringes. It has a card that states what Copaxone is, why it has been prescribed to me and what temperature it needs to be stored at.

6. Wing extender with instruction sheet - It makes the end of the syringe wider for your fingers to hook onto as you inject. The instruction sheet makes it seem very simple.

7. DVD - Self-Injection Training - I'm guessing that this the feel-good, runaway, smash hit of the spring. I have to watch it before the nurse comes over to teach me how to do it.

8. Injection pad - I hope this is covered in the DVD materials, because I can't for the life of me figure out what it's for.

9. Daily Planner - "Rotating injection areas and injection sites is important because it may prevent short-term and long-term skin reactions related to any kind of subcutaneous injection." Rotating your areas/sites is important to keep your skin "from becoming hard, sore or indented from repeated injections."


10. Compress - Hot/Cold - To help combat normal subcutaneous injection site reactions, apply the cold compress for 5 minutes before the injection and for 5 minutes after.


11. Injection support mat - It gives you directions for everything you need to do your injection, either manually or by auto-injector.

12. Patient's Guide to Understanding MS - (Comes with a map of possible injection sites) - This book looks like the world's skinniest recipe book except instead of Appetizers, Entrees and Desserts it's got tabs for Multiple Sclerosis, Copaxone and Support.

13. Brochure - "All Shared Solutions nurses are professionals who specialize in MS; most have been certified by the International Organization of MS Nurses (IOMSN), a group committed to excellence in MS patient care. (Certification requires at least 2 years of experience with MS patient care.) My nurse's name is France and she's in Montreal. I practice my French with her. She is kind enough to tolerate my anglophonie ass.


14. A copy of the Shared Solutions privacy policy, in both French and English.

15. One of those neck cooler things that you soak in water and wear around your neck to keep the blood going to your brain cooler.

16. My nurse's business card.

17. A copy of the latest issue of MSDialogue - Science, medicine and support for those whose lives are affected by MS. It comes with an invite to get a free subscription.

and finally...

18. A pen.

NOW, if our private insurance would just hurry up and approve my drug exception form and cover the $1,750 deductible on my Fair Pharmacare, I can actually get the nurse over here and start this stupid drug.

If private insurance is so much better than single payer, why did it take 48 hours for me to get approval for Copaxone by the government program, but three weeks after receiving the forms my private insurer is still thinking about paying $1,750. For the whole year. It's not even like that's a monthly fee.

Efficiency my ass, I say.

Thursday, March 4, 2010


That's the name of my MS Walk 2010 team.

Here is the link to my team page.

Support me as I walk (or crawl, not sure how the mobility will be come April) for a cure!

Wanna join my team for the walk in Vancouver, April 25, 2010?

Comment with your email address and I'll send you an invite! (I won't publish your email.)

There will be glitter! Tiaras! Feather boas!


Saturday, February 27, 2010

Joe and I went down to the cauldron today. It was 10:30AM on a Saturday morning and there were hundreds of people and a two hour wait to get to the unobstructed viewing platform. Not worth the wait so we just had to deal with across the street or fence views. (The photo above was taken through the fence gap.)

As we were walking to the cauldron area we came to the space between the Shaw building and the new Fairmont and caught our first view.

The word "wow" popped out of my mouth before I could stop it. I didn't think that I would feel anything upon seeing it, but it was a sight to behold.

The masses moving along West Cordova were mostly Canadians, with quite a few Americans & smatterings of Italians, Poles & Russian soldiers/sailors. What struck me about the crowds wrapped up in their red maple leaves was the diversity. Every race, every shade within those races, accented English, accented francais. It was incredible to see the great mosaic that we talk about as a theory or an ideal laid out before me. Sikhs with red turbans and maple leaf pins, young Islamic women wearing white with red maple leaf hijabs, an American couple with their three kids in Team Canada jerseys, the gay couple wearing their rainbow Canada flags as capes.

While I don't even pretend to think that Canada is "post-racial" and that we're some awesome utopian land of equality, tolerance and fraternity, for 17 days in February, 2010 in Vancouver, BC - Canada was pretty okay with being Canada - and the definition of the Canadian soul as something that it is, rather than something it is not, became just a little less vague.

For now. Come Monday we'll be back to our hand wringing, navel gazing selves when the UK Guardian spits it's last bit of vitriol our way over the closing ceremonies.

Thursday, February 18, 2010

My MS backpack.

I wanted to do a blog post about it, but it hasn't arrived yet.

Other than that I'm busy with hockey and hoping against hope that the HRT fixes my Premature Ovarian Failure soon.

Friday, February 12, 2010

Walk, walk, Fashion, baby.

This is my favourite piece from Alexander McQueen's Fall/Winter 09/10 collection. Fall/Winter fashion has always caught my attention because the clothes, the creations, are more substantial. As with many of AMcQ's fashions, this one looks almost architectural; like it was constructed not sewn.

Seeing this brings tears to my eyes. There will be no more creations like this. No more substantial garments that are works of art. No more couture skulls and bones. No more high fashion trainers/running shoes.

I've battled depression pretty much my entire life and I understand deeply what it feels like to be in that pit of despair. I never had the means or the bravery to do it and that's why I am still alive.

It bothers me, deep down inside, when people of talent, promise and riches kill themselves. If Lee McQueen can't find a reason to live through another day, where the hell am I suppose to get the motivation from? I don't have talent or prospects and I'll be lucky if I can still work a crappy 40k a year job 5 years from now, yet I manage to find *something* to get out of bed for. That reason might be one of obligation to the man I married, but its a reason.

It just seems like such a waste. People like me should kill themselves, not people like Alexander McQueen. He had so much more to give the world than I could ever hope to. He was special.

And now he's gone and I'm left here thinking, what is this all for anyway?

Sunday, February 7, 2010

Football and frustrations.


There, now that I've got that out I will continue. My comments will be brief.

I am trying to remember how to sew. It is not going well.

I have a great project complete except for the sewing. Drives me bonkers when I can't move forward with a project because of some crazy logistical problem.

Three more in the works, which is awesome.

I am also trying to figure out what to make for my friend Jackie. My creative juices are not flowing.

I will figure out something.

Thursday brings my appointments with the gynecologist to try to solve my chemotherapy induced menopause issues. Friday brings me to the urologist to see if me having to pee 3,058,673 times a day is related to the menopause or the MS- because apparently it is one or the other.

MS does indeed suck.

Tuesday, February 2, 2010

What they don't tell you.

I've been waking up every morning and not recognizing the face staring back from the mirror.

My physical being has gone rogue. I don't recognize my face, my hair or my body. My bodily functions are alien to me.

I cried in public today. That's really not my style. I haven't cried in some time and to do it in public just made it more like a humiliating kick in the teeth rather than the painful punch in the gut it is in private.

The MS people talk a lot about symptoms and how to manage them but they don't tell you *why* you just want to stay in your house and never come out. It's not just the symptoms, I am now convinced of this.

It's the little embarrassments. It's the constant mental calculations of where you can go because every trip is a metric of distance + time + seating + washrooms. It's about the little stumbles, the lack of fine motor skills making it difficult to hold a pen, the small inabilities that just build up and up and up until the degradation brings you down and down and down.

It's the stares from strangers when they don't understand why half way down the block my left leg starts to drop or why I lose my balance trying to negotiate a curb. I'm not drunk and I'm not faking in order to ask for a seat on the bus.

It's all my old clothes and shoes mocking me from the closet. It's my wedding photo staring back at me on the wall. It's Marg's boots, Dianna's corsets, Sam's travels and Laurie's job.

But the thing that made me cry today was Speechless

Could we fix you if you broke?
And is your punch line just a joke?


I do not have enough hours in the day to accomplish everything I want to in a day AND play Mafia Wars, FarmVille and FishVille.

Something's gotta give and it will probably be Mafia Wars and FishVille.

I'm still stitching, but it is going painfully slow because my job and my virtual mobstering, farming and aquarium-ing keep me from it.

Damon offered up a great line for a new pillow and I am trying to figure out how to make it artistic.

I have a long time internet friend who's coming to visit in May and I love her eleventy for picking Vancouver, BC, Canada as her holiday location. I have another long time internet friend who is coming in July and I love her eleventy as well.

10 days until this place really sucks.

Too bad there isn't a god to have mercy upon our souls. That would be useful at a time like this.

MS is now just this never ending annoyance that just grates on my last nerve day in and day out and then gets followed by a hot flash. It's awesomesauce.

I need more hours. I need more will to live. I need a less sucky job.

Dear my last two fingers on each hand:

I need for the feeling to either come back or stay gone. This variable level vibrating nerve thing you've got going on really drives me to distraction.

Best regards,


I am weirded out by one of the definitions for my first name in the Urban Dictionary.
I want Amazon to ship my stuff because their shipping date estimate expires in one hour.


Friday, January 29, 2010

Oh the indignity of it all.

What was supposed to be a 1 hour and 15 minute appointment at the MS Clinic turned into a four and a half hour epic.

I was supposed to have a 15 minute drop in with the neurologist to confirm that Copaxone is the way we are going and then go to see the physiotherapist for an hour to get some exercises for my vestibular problems.

My neurologist was running late (qu'elle suprise!) so they sent me to the physiotherapist on time. Great. Then the physiotherapy student working with my physiotherapist was late so a quarter of the way through my assessment we pretty much had to start over to get her up to speed.

My vestibular dizziness problem is very slight, so my exercises are going to be very fine movements of my head and eyes. I ended up with the physiotherapist for half an hour longer than scheduled.

Then I end up back in the waiting room. 45 minutes later my neurologist comes out and we have a short talk. She asks me how many times I have gone to the bathroom that day. When I told her four she wrote out an order on a slip and told me to go see the MS nurse.

I had a bladder ultrasound. My bladder is fine and I have no UTI. The nurse says she's going to refer me to a urologist because I'm too young to have this not be MS related. Then I remind her that I have menopausal symptoms because of the mitoxantrone, she gets wide eyed.


So now I am getting a referral to BC Women's Hospital & Health Centre to get some help for my chemotherapy induced menopause. There is a chance that hormone replacement therapy will kick start my ovaries again, and Women's is the place for that kind of support.

But the gravest injustice is that MS has given me an abundance of old lady problems at the age of 35. I have a cane, my bladder is too active and I'm in menopause.

This is not how I pictured my mid-30s to pan out.

Thursday, January 21, 2010

Flow Chart to MS DMDs

I don't think I can fully explain how much I love flow charts. Pie charts and bar grafts too. Unfortunately I don't want to do tables and all that so I will just number this one.

Special Therapies Pre-Treatment and Special Therapies Treatment Phase

Pre-treatment Phase

Step 1 - Referral to Special Therapies Program

I was referred to the STP by my neurologist who screened me for inclusion in the program based on the BC Pharmacare's prescribing criteria

Step 2 - Patient Education (3 hour group session)

This is what I attended today where I got this awesome flow chart

Topics covered

- review of what MS is
- description of available drugs & how they are administered
- clinical trial study results
- side effects profile and management
- patient expectations
- Pharmacare coverage

According to the facilitator, this patient education program was mandated by BC Pharmacare to help lessen "prescriber bias". The four drugs were approved by Pharmacare around the same time and knowing that one or two of the drug companies had funded hundreds of thousands of dollars of research in the province they wanted to make sure that patients were getting access to the drug they wanted to take, not the one their neurologist wanted them to to fund his/her research. Every person who is going to start an MS medication in the province of BC has to take this education session.

Step 3 - Patient to call Special Therapies Program secretary with drug choice.

I don't have to do this one because my drug choice is already made. My doctor has already filled out the forms, I just had to go to this session because it's the rules.

Step 4 - Pharmacare approval (takes approx. 1 week)

As far as I know, I already have my approval.

Step 5 - Package to be sent to patient
- bloodwork requisitions (if you are on beta-interferons)
- Pharmacare approval note (for secondary insurers, if they require it.)
- neurologist letter (for additional insurance back up or for travel)
- travel tips

Step 6 - Bloodwork screening (not required for Copaxone)
- bloodwork must be done before prescription given to patient

Step 7 - Prescription given to patient

Step 8 - MS Clinic will send requisition to company support program for home start by RN

Treatment Phase

Day 1 - Injection training and drug initiation - home RN start

- first injection done with home nurse teaching

48 hours & 1 week - Follow-up phone calls

- You will receive a phone call from the Support Company Nurse regarding side effect management and support

Month 1 & Month 3 (approx) - Follow-up clinic visit - (optional)

- injection site reactions
- side effect management
- monitor bloodwork results (Avonex, Betasteron and Rebif - monthly for 6 months)

Month 6 - Optional clinic visit

- Monitor bloodwork results (not required for Copaxone)

Month 11 - Monitor bloodwork results (have blood test 1 month prior to appointment) [not required for Copaxone]

1 year - Annual review - make appointment with neurologist

- prescription renewal
- check injection sites and Special Therapies treatment issues

Pharmacare approval needs to be renewed each year with the prescription, and that's important because most private insurers won't cover the full cost of the medication without Pharmacare kicking in 70% of the cost, which is $1600 a month. Approval is never denied unless you no longer meet the residency requirement. The 30% will be covered by most private insurers up to your drug coverage percentage. (Ours is 80%.) This is going to cost me $96 a month out of pocket until my annual maximum has been reached. (The 80% of the 30% counts toward the annual maximum, btw.) I don't know what that is yet, because I haven't filed my 2009 taxes yet.

Thus ends the fabulous flow chart of MS drug therapy in the province of British Columbia.

*bows deeply*

Tuesday, January 19, 2010

I don't have anything nice to say...

so I am not saying anything at all.

No wait, I'll say this:

Spending half a day learning about injectable MS drugs, how to load an auto-injector, how to fill a syringe and how to deal with the side effects of Copaxone is preferable in all ways to going to work tomorrow.

Oh yeah, baby.

Thursday, January 14, 2010

Projects and Impulse Control

The symbol is now official.

If your childfree and lovin' it this is for you.

It's for sale.

I like kids, really. I just don't know if I can eat a whole one.

Had my (what will now be) annual MUGA scan to check for heart damage due to 5 rounds of mitoxantrone. I don't expect anything interesting.

I am exhausted, not from MS, but from this day. Exercising this kind of restraint on a daily basis is really, reeeaaallly making my head feel 'splody.

Saturday, January 9, 2010

Too Personal

The lists in Listography started getting way too personal for a blog my mum or siblings might read, so I'll do lists as I think of them from now on.

The stupidest of MS symptoms have been acting up all day. Not the ones that make me fall down or leave me unable to move or stay awake. I lose all feeling in my right index finger whilst I am typing. I get a sharp, stabbing pain in my left cheek as I am filing. These are the kind of symptoms that remind me throughout the day that I’m not right and I never will be. Irritating rather than devastating, I just keep trudging.

Speaking of trudging, I have figured out that I bring foot drop on by trying to hurry or walk to fast. If I can just walk slow and steady I can go for much longer in both time and distance than I can if I am even trying to go a short distance by hurrying.

I’m trying to read, write and stitch every day. Most days I get two out of three, and sometimes just one, but it is really rare that I get all three done. With the vertigo caused by my vestibular problems I can't read on transit to work without the threat of motion sickness so all my want to do list has to wait until I get home from work.

I have a MUGA scan on Monday to have my annual check in after getting mitoxantrone (Novantrone). It has been known to cause heart problems so I have to get this scan every year for five years, unless I start showing symptoms of cardiac problems.

I go to my How to Deal with Injection Medication education class on the 20th. I see my neurologist on the 28th to get my Copaxone script, a pep talk and then head down the hall to Victoria the physiotherapist to learn some exercises to help with my vestibular problem.

February 1 is day one on Copaxone. I'm not sure how I feel about that yet. It's not real to me nor will it be until I'm confronted with the auto-injector on the evening of February 1.

I often wonder how many other people with stupid "But you look so good" MS (that is, the kind that doesn't keep other people from having expectations of you) feel like their lives have been complicated by more than just symptoms and/or disease progression. Shots, vitamins, shower stools, yoga, therapy, canes, drugs, research, low fat, gluten-free, blah, blah, blah.

I haven't had fun in weeks. I haven't had an absolute *Blast* in years. Between my disease, Joe's schooling and our brokeness for most of the past year it feels like it is impossible to have any kind of fun. Every time I try to plan for regular fun it doesn't seem to work out. I'm not sure it ever will.

Sunday, January 3, 2010


I’m sore. I’m wondering if I’ll ever feel like a human being again. And then I do some physio and I feel better, but I don’t do it everyday because it’s too much of a hassle. Much more of a hassle as having your body yell at you for letting it get stiffened up? It feels so good afterwards, why don’t I do this all the time?

I am uncomfortable. I’m not happy with the way things are going and if I have learned one thing it is that when I’m not happy with how I am, I have to change the way I act. I could take much better care of myself and I don’t because sometimes I don’t care. Sometimes I’m just tired. Sometimes I’m just lazy. Then I look at my body and I want to die because I’ve ruined it. I have to take getting my body back much more seriously, because I can’t do what people traditionally do to lose weight. No weight training, no endurance training, just diet and some biking.

Will it be worth all this effort? I have no fucking idea. I don’t know, but right now I’m thinking that it’s the process that means more than the actual outcome.

I’m having a lot of vestibular ataxia lately and being nauseous all the time from the resulting vertigo is getting a little old. I do hope the physiotherapist can put something together for me that will help me treat this and make it go away.

This is how insidious MS is. It creeps into your life just one crappy, rather small symptom at a time. Numb fingers, tingly toes, tripping over lines of latitude, bumping into the corners of desks or catching door jams in the shoulder; one of these things would be insignificant and easily ignored. all of them are annoying and constant reminders that I’m not right and I never will be. Even as I type this, my right thumb is losing feeling off and on. My left toes are tingling like little shocks you get from licking a 9 volt battery are rushing through the bottom of my feet. My wrists will hurt at some point today. They hurt with short, sharp pains off and on for most of the day, most days of the week.

It feels like the year doesn't start until tomorrow. I'm cautiously optimistic about 2010 but that's mostly the anti-depressants talking. I have reset a 101/1001 list for January 1, 2010 to September 28, 2012. I'm not sharing the list publicly because much of the list is highly personal or horribly tedious. But less than 3 days in I've kept up with what I wanted to do. I've even completed one thing.

I quit smoking because Joe thought I couldn't do it. My single resolution for 2010 is this.

I will not be in the same place I am now on December 31, 2010.

"You must do the thing you think you cannot do." --- Eleanor Roosevelt