12 December 2008

How About the Province of British Columbia Lets Its Business Owners Act Like Grownups?

2012-01-20T18:32:00.000-08:00

Change BC Liquor Laws preventing Alcohol service at Film Screenings Petition | GoPetition

I support changes to be made to the BC Liquor Control and Licensing Act that prevent Single Screen Movie Theatres from obtaining a liquor license as well as regulations that prevent licensed cultural venues from selling alcohol during film screenings whose primary audience are adults of legal drinking age.

2012-01-08T15:01:00.000-08:00

If this was your last day alive, what would you do?

I am often troubled by the suicides of talented people who have accomplished so much more than me, have immense talent I could never hold a candle to, and are funnier than I will ever be.

True, I don’t have a drug habit or alcoholism but I could have. It would, at the very least, give me the affectation and air that would make my dark outlook intriguing and artistic rather than just bitter and cynical.

I'm sad when good people get to that point. I almost wrote what I actually think of human existence but I was afraid that in doing so you, dear reader, would think that I am ready to check into a hotel and drink antifreeze.

I have far too many obligations to other people to kill myself right now, thanks.

***

I often sleep to late on weekends to take my Wellbutrin. If I take it after 9 AM I won't be able to sleep that night. That means I often spend Saturdays and Sundays in this half-asleep stupor with a low blood sugar headache because I am too sleepy to make something to eat.

Clearly, I am an idiot. I also almost always shut off my alarm before getting out of bed because I know it's a weekend morning.

More idiocy.

2012. Bring it on.

2012-01-01T14:36:00.000-08:00

Another year has passed on this planet. In the grand scheme of the universe and everything that’s like five seconds, but in the context of a single human lifetime it becomes less and less meaningful as time goes on.

I mean, when you’re five a year might be the maximum of what you have ever remembered. When you’re 40 a year represents, one-fortieth of your entire life, and possibly one-thirty-fifth of everything you have ever remembered. As someone who has lived one pay period to the next for about 20 years entire years go by in with little regard. Or much to show for them.

2011 passed with few remarkable moments in my life. Having the Gl*tterB*tches set a new fundraising benchmark, getting to meet Amy, the Vancouver Stanley Cup riot, quitting my horrible job and Joe finishing school is my long list of things I remember. Hardly earth-shattering stuff, but not insignificant.

No matter how I try, I find this clean slate and unmarked calendar a little intimidating. Will this be the year that I actually *do* what I know how to do to be a productive human being? Or will this be the same year of frustration, anxiety, good intentions and failure everyone single other one has been.

Barring a lottery win, I think I already know the answer.

Three years.

2011-12-12T19:37:00.039-08:00

There is a view of the Lions that can only be had from the SkyTrain on the track between Main Street - Science World and Commercial-Broadway Stations. Because of how fast the train moves and how crappy my camera is I've never been able to catch a non-blurry photo of it. I'm not incredibly enamoured by the mountains, but that 1 minute of time is my favourite view of my favourite range.

Not the view, but close...

Photo By vermillion$baby on flickr.com

Today is my third MS-iversary. I've been trying not to feel anything about today at all. I've failed, because I'm just sad. Every single thing about my life changed three years ago, leaving nothing untouched. I've obsessed over every choice I have ever made, wondering constantly if I would have had the life I do if I had been diagnosed with this when I was younger, or if I had questioned any of the crazy things my brain had done earlier in my life.

But mostly I just feel ugly and stupid. My cognitive issues plague me. I can't remember things and have constant problems with word selection and that makes me feel like an idiot, especially when people laugh at my stupid word choices. I still weigh 40 lbs more than I used to and I don't even recognize my body when I catch a glimpse in the mirror. My hair and skin have been fucked up since the mitoxantrone and no amount of skin and hair consultations have fixed it.

The good stuff is that Joe and I are still together, we're still very much in love and I would not be where I am if it were not for him. He's exactly 5 days away from finishing his BA in Poli-Sci and I could not be more proud of him for sticking it out and doing as well as he did in spite of the fact that he has a sick, crazy wife and very little money or available credit.

I have not used a cane in over three months, probably closer to four. I have not had to go to bed immediately upon arriving home from work in more than two years. I have a job that, while not incredibly fulfilling or interesting, pays the bills and does not leave me suicidal. I can walk, I have 20/20 vision, very little in the way of intrusive MS symptoms, and I continue to hope for a cure and a way to undo the damage already done.

My MS Walk page will be up in the New Year and I hope to work with Team Gl*tterB*tches to do one big event as well as our regular fund raising. I love my B*tches. They're great people and another bit of good stuff in my life.

I continue to put one foot in front of the other and suit up and show up for my daily obligations. I remain hopeful that one day I will figure out what I want to be when I grow up and that will allow me to not be broke while being happy.

I'm going to try to do things differently in the next year. I don't want to say what, or how, because every time I make broad pronouncements about what I want to do I fail miserably. One thing I have found out in the past year is that people who love you so very rarely hold you accountable for failures if they don't think what you're failing at is important or necessary.

I think about the past too much. If you've known me since before 2003 I'm probably thinking about you right now.

Brainz - An Update (I forgot to post this 3 weeks ago)

2011-11-01T18:51:00.001-07:00

October 13, 2011

1) Seeing me makes my neurologist smile. My "initial disease presentation was as close to the worst as it gets" and the fact that I am doing as well as I am is pleasing to her.

2) My MRI remains unchanged from year to year. My lesion load is stable with no new lesions found.

3) I have 1-2% nerve damage in my fingers and toes.

4) I have some minor spasticity in my calves, the left being worse than the right and causing some uncontrolled movements.

5) My mission to learn how to run again has been improved by my neurologist because the latest recommended treatment for MS is 30 minutes of moderate exercise every day. Running/fast walking for 15 minutes a day counts in her mind, though she told me to take it easy and don't push too far or too fast.

6) I am to continue doing "exactly what" I have been doing: Copaxone, Wellbutrin, 5000 IUs of vitamin D, and daily exercise.

***Edit November 1, 2011***

I feel really good physically and the change I made in employment has been a positive one for my mental health. Got some good news today regarding that job, so I'll find out later this week or next what my near-term status is going to be.

It is at times like this I wish I were more superstitious about other things than actions to take during the Stanley Cup playoffs.

Just sitting.

2011-11-01T18:50:00.003-07:00

Two weekends ago I had my house and my routine (that was going awesome and everything) totally upended. The first weekend was just awful, spent running around trying to fix things. I spent the two days of the weekend wanting to curl up in a ball and cry. The situation got fixed come the following Monday but it has cost us some space in the house. I needed a day or two to recover. I got up and went to work and that was that.

I started coming down with a cold on Saturday morning. I beat it into submission with liberal doses of cold medication, vitamin C and hot honey and lemon beverages. I still have some sniffles but I am mostly a functioning human being.

Which brings me to my life.

It's now been a week since the upheaval and everything is still not right here. I have zero will to go back to my routine. It's like it got messed up so now it's going to take me forever and ever (or until the mess drives me crazy) to get back to it.

These are the first words I have written in a week. I do not find them satisfying.

All the Way to Up to Eleven

2011-10-08T10:45:00.000-07:00

October 8, 2005 changed my life.

Under different circumstances I would not have been on the Queen of Capilano from Horseshoe Bay to Snug Cove.

I wasn't nervous because I knew that it was the only way we could be together and what I wanted more than to marry was to be together. Marriage was the only way I could get what I wanted. So maybe because of that I tried a little harder to make sure that I didn't end up being the one word reason as to why my husband couldn't have fun.

"Wanna go out Friday night?"

"No. Can't."

"Why?"

"Wife."

I didn't want to be that person.

One day he said he was going to talk to an academic advisor at the local college. When I got home from work he told me that he was starting college on Monday and had quit his job. I didn't freak out because I knew that whatever he had signed himself up for was going to be a good investment.

He worked his ass off and has got amazing grades. I'm really proud of him. He graduates in December.

When I got sick I told him that if he was going to leave because I was sick to do it then. I would be able to work out other arrangements.

He didn't leave. He hasn't been anything but supportive and encouraging.

There have been times, especially in the first year and a bit, when I threw my hands up and wondered aloud why I had done this. Why had I dragged a man out of his country to marry him when obviously it wasn't going to work out? How could I have been so stupid?

We ended up working that out. Since then there hasn't been a problem that we couldn't work out.

I don't know what the future is going to bring. I just know that after 6 years of civil marriage and almost 7 years together we're still a team. I also know that I have never committed to doing anything, ever, day in and day out for six straight years. Hell, in the course of that time I've been through 4 different hair colours.

We got through the chronically broke year of him not being able to work, we got through the nearly always broke year of his first three semesters of school, we got through the very, very broke 9 months of me on disability. We got through the terrible confusion and misunderstandings that happened in the 6 months after my diagnosis and relapse.

I'd like to think that we got through it because we wanted to be together more than we wanted to walk away; but I must admit there were times early on when only my legal obligations to him as his immigration sponsor kept me from packing my shit and leaving. With those obligations done I think that I stay for the same reasons I got into this in the first place.

I want us to be together. I married him because I couldn't live with the "What if..." of not knowing if it could work out. I don't know what the ending is yet and I'm in no hurry to find out what the conclusion is to our story. Every single day I am full of love, appreciation and gratitude that we decided to embark on this great experiment together.

Happy Anniversary, Baby. My love for you is turned all the way up to eleven.

Ch-ch-changes

2011-09-17T08:00:00.001-07:00

I quit my job. I am more than stoked about my $1,100+ in unused vacation pay.

I have just been informed that my new job "thinks" I am cleared and I should report to my new job on Monday morning at 8:30 00 AM.

I am SO EXCITED.

I am so happy and excited and thrilled to be leaving my job. It served its purpose - got me back into the workforce after my first MS attack and helped me keep Joe in school. But the ongoing challenges with having an elderly man as an employer were grating on my last nerve. I did my time for almost two years and now I'm moving on.

The only downside to my new job is that I'm only guaranteed work for a finite period of time. That means that I could be hunting for a job sooner rather than later. I'm hoping that this job will lead to further opportunities, but I can't bank on it.

I've updated my LinkedIn profile just in case. I'm squeamish about asking for recommendations or putting myself out there, but I guess you just gotta.

I fell asleep at 10 PM last night. As a result I have been up since just before 4 AM. The coolest thing about this morning is that I drank a cup of coffee and enjoyed it. It did not smell like barf to me. This is a fortuitous occasion as that doesn't happen very often.

To Eddie... with love.

2011-09-02T23:04:00.000-07:00

Until Facebook, Frank and I exchanged semi-annual emails - usually in the new year and sometime between my birthday in July and his birthday in November.

I last time I saw him was a few years ago; he had been living in Korea for years and quite unexpectedly announced that he was moving to Vancouver. I saw him shortly after he arrived. He was OUTRAGED that he had been there an entire WEEK and had not secured a teaching position. He was worried about living off his savings and going broke in Vancouver.

He asked me when the sun would come out. I told him "Next summer."

We had lunch. We went for a walk. He complained loudly about how badly his last partner had treated him. He met my husband and expressed surprise at my settling down. We sat together on the sofa and talked about mutual acquaintances and "Do you remember the time..." all afternoon.

He said he had some interviews lined up and he would be in touch. A hug, a couple of air kisses and a "I love you, Pats." "Cheers. Thanks a lot. Love you too, Eddie." and he was gone.

The next time I heard from him was months later. He sent me a Facebook friend request. That's how I found out he had gone back to Korea.

"Sorry." he said.

It was kind of a last minute thing. The next time he came back to Canada he'd book a stopover in Vancouver. We'll have lunch. Go for a drink. Something.

He never did.

We kept in touch via Facebook. We posted smarmy messages on each other's walls. Over the past few years I watched him literally work his ass off.

"I AM THIN AND GORGEOUS!" was our rallying cry. He was getting to where he wanted to be. He had plans... and none of those plans led back to Canada. Of that he was sure.

He apologized to me for being such a crap friend while he was in Vancouver. I told him that I was okay, that I love him just for being him and no matter what I would always be there for him. He promised again to stop in Vancouver the next time he was coming to Canada to visit his family.

That's not going to happen now.

Three weeks ago Frank, my friend - probably my oldest friend, dropped dead at 38.

I have known him for 19 years - half his life and just over half of mine. He was my friend for my entire adult life. I am glad he is my friend. I wouldn't love many of the things I do without his influence. He was the Edina Monsoon to my Patsy Stone. My life has an empty space where my Eddie should be. I'm sorry he won't be here to see what we all amount to.

Lastly, I hope they can find him an urn that he would be caught dead in. Sometimes fabulous friends can be high maintenance even in death.

"But is it art, Eddie?"

I hope so.

I did not write this

2011-08-24T19:30:00.000-07:00

This land like a mirror turns you inward
And you become a forest in a furtive lake;
The dark pines of your mind reach downward,
You dream in the green of your time,
Your memory is a row of sinking pines.

Explorer, you tell yourself this is not what you came for
Although it is good here, and green;
You had meant to move with a kind of largeness,
You had planned a heavy grace, an anguished dream.

But the dark pines of your mind dip deeper
And you are sinking, sinking, sleeper
In an elementary world;
There is something down there and you want it told.

— "Dark Pines Under Water," The Shadow Maker (1972)

Gwendolyn MacEwen

When you wrap up some of the most painful experiences of your life in memories of places you were both young & innocent and crazy & out of control and tie them together with a present desperation for change... you get reminded of Gwendolyn MacEwen poems a man you once loved read to you in the half light of a cold November Sunday morning.

Nostaligia

2011-08-16T20:44:00.000-07:00

I want to punch my 24 year old self in the fucking head.

From here on in, when I hate myself now I am going to pull out one of these journals from pre-2003 and force myself to read what kind of bullshit I was thinking and living in.

I am also grateful that I have no real memories of this. Thanks for the cognitive issues, MS!

When you feel your life ain't worth living...

2011-08-16T13:18:00.002-07:00

(I don't think this reggae beat is a good choice for this mashup.)

you've got to stand up, take a look around you then a look way up to the sky.

(What the hell is he trying to do?)

And when your deepest thoughts are broken,

(I get it... you love this song.)

keep on dreaming boy, cause when you stop dreamin' it's time to die.

(Boy is right. He won't give up those metaphoric green tights.)

And as we all play parts of tomorrow, some ways we'll work and other ways we'll play.

It's 3 AM. We're both wasted. Would you just turn off the music?

But I know we all can't stay here forever,

YOU AREN'T GOING TO GET ANY MIXING DONE AT THIS HOUR!

so I want to write my words on the face of today.

(Good. It's done.)

and then they'll paint it

(Dammit. No it's not.)

And oh as I fade away,

(Apparently if you aren't going to fade away, you aren't going to let me.)

they'll all look at me and say,

GO THE FUCK TO BED!

Hey look at him and where he is these days.

(I wish I could change my mind about you.)

When life is hard, you have to change.

Dance with me until the sun rise.

When life is hard, you have to change.

You know this is the beginning of the end, right?

When life is hard, you have to change.

Right.

Edit: Lyrics in bold are from "Change" by Blind Melon

My friend died.

2011-08-13T22:25:00.001-07:00

One of my oldest friends apparently just dropped dead for no apparent reason sometime in the past 24 hours.

He's been living in South Korea for ever and ever and I haven't seen him since he tried briefly to live in Vancouver about four or five years ago.

His birthday was Remembrance Day. I'll never forget him.

Since I don't believe in an afterlife and I don't believe that he's reading this right now or that he knows that I will miss our talks online and be sad that we never got to see each other again, I'll just say it to you, dear Reader:

I'll miss talking with my friend, Frank. I am sad that we never got a chance to see each other again.

The previous three thoughts that I typed out and then deleted remind me that my attitudes about death aren't "normal" and I don't want to have the words come out wrong or with a tone and tenor that can't be heard in this medium, I'll just shut up now.

But I do know that I made a To-Do list for today and I have done everything but one. That feels good.

10 August 2011 - 12:45 pm

2011-08-12T21:56:00.000-07:00

I must scratch something
down before it rains and my
lunch ends. I must scratch
something down before the
end comes. I must scratch
something down before I forget.
It looks as though I have
already forgotten. I have forgotten
how to wake up. I have forgotten
how to be joyous. Not sure I
ever really knew. Glimpses,
Just out of focus on the edge
of my peripheral vision. Terribly
sad sad sad sad. True. True. True.
This is what happens when I listen
to myself.

Insert Witty Title Here

2011-08-08T21:23:00.000-07:00

I did not get notifications about comments on my last post. I'm sorry that I didn't respond.

So, I didn't wake up in time to get to the parade. I was just so out of it.

I've been scratching out words on pieces of paper on my lunch hour, but I haven't input them into my project so I don't know where I am or how many of them there are.

I have been down lately. My life tends to be an open book, but this sadness is just too personal.

I hope that tomorrow brings something different. I am almost certain that it won't, but I hope.

This song gives me shivers.

It's not... What you thought... When you first began it...

I ruined my weekend

2011-07-31T03:25:00.000-07:00

In 8 hours I am supposed to be heading to the Pride parade with my husband. But today I forgot that my life is a high-protocol-tightrope-walking-plate-spinning-balancing act of caffeine timed perfectly with high protein snacks in order to make it though a 9 hour work day. Today I ate breakfast. I had no caffeine. I made a plan to locate a parasol for tomorrow's parade to try to stay cool. A headache started pounding over my right eye.

Within 15 minutes I could not keep my eyes open it hurt so much. Within 30 minutes it took all my physical strength not to throw up. Joe brought me some toast and tea. I ate half the toast and drank a couple of mouthfuls of tea and promptly passed out for a several hours. Woke up at 8 PM and in order to stay awake long enough to eat something I had a bottle of Coke Zero. It is now 3:30 AM Sunday morning and I'm awake. Wide awake.

And Joe is stuck on chapter 11 of the NAFTA agreement and hasn't finished the paper he needed to have finished by midnight Friday, so he's not going to the parade tomorrow. I don't know if I will be awake enough to go, I'm not sure how hot it is going to be, I'm kind of scared about going out in the heat like that unattended, and I did not get the parasol I should have for being out in the sun.

I'm banging away on this laptop in bed trying to get these worries and disappointment out of my head in hopes that I will find the ability to sleep and more importantly wake up in the morning in time to get suited up for the parade... if I am brave enough to head out in the sun without someone with me.

This is how my brain works

2011-07-29T23:00:00.000-07:00

I have the drum track from this with the lyrics to this playing over it.

This is the weirdness my brain just comes up with spontaneously, because I haven't heard either track in months, if not years.

Profound desire...

2011-07-26T22:30:00.000-07:00

to smash my head into this keyboard.

I find this all so frustrating.

I don't have words for this.

I have talked to my psychiatrist this week, and that's never a great time for me.

Apparently I'm just supposed to be grateful that the MS is stable and there are hundreds of thousands of people worse off than me right now.

So that's what I am going to do.

2011-07-14T23:32:00.000-07:00

I spent some time on the phone with one of my healthcare professionals today. The progression of this phone call was a direct result of yesterday being my birthday. I am currently in the middle of what has become my annual existential crisis. It happens to coincide with my semiannual check in with my nurse when she asked about my mood. I was bored at work so I told her the truth. Her response was exactly this:

“Lori, maybe you just have to come to accept that there are some things you aren’t going to be able to do every day. Instead of habits, maybe what you need is discipline to start again after you have to stop.”

So that’s it.

I set up schedules, to-do lists, reminders and book appointments with myself. I start off really well, but then something happens:

Like I have a great exercise schedule going for four weeks and I’m on top of all the tasks I need to get done around the house and then out of no where I can’t keep my balance anymore, my calves go into spasm with every flex and I can’t safely lift a weight over my head. This goes on for close to three weeks, when I just give up and write myself off as broken and my house gets dustier and the clutter just moves around more;

Like I get all these healthy meals and plans together and it goes really well, until we have one bad month with bills. Then it’s food on the cheap and fast food lunches, because they’re the only ones around for $5 or less. I’d pack lunches to take to work, but my boss won’t let me cook food at work or eat at my desk because it makes the office smell. (Yeah, I know.);

Like I get this amazing morning routine together and then my body becomes broken and don’t have anything healthy for breakfast, I’m terrified that exercise will break my body further and I won’t be able to get to work, so I end up waking up in the morning unable to bring myself to do anything but slide into clothes, pull on a hat, guzzle a cup of tea and stagger to the bus stop;

And like when I start to fail at everything I want to be good at I end up swimming in this vat of sticky oozing self-loathing and anxiety that keeps me up until the early hours of the morning, wired on all the caffeine I had to drink all day to keep from falling asleep at work.

I realize that if I am going to have to type at work, some nights I am not going to have the nerves available in my hands/wrists to work on my book that night. Sometimes I will really have to rest them and not be able to type much at all on Saturday as well. But I can bang out a couple of hand written pages each day on my lunch hour. I go for a walk every day it isn’t raining or too hot (which gratefully is most days).

It doesn’t feel like enough. It is going to take 60 days for me to write my Book in a Month. Perhaps even longer. Tomorrow is payday, so fresh fruit and vegetables for dinner.

Friday night.

2011-07-08T22:08:00.000-07:00

For the first time in what feels like half a lifetime, I am spending my Friday night trying to lay the groundwork for what it is I want to get done over the weekend. Here it is, 10 PM and I'm about 1/3 of the way done. I think I'll be up until midnight.

I'm hoping to get about 5,000 words written between tonight and Sunday at midnight.

I'm hoping to get two x-stitch prototypes completed in the same time.

I'm hoping to get my bathroom cleaned and my kitchen floor washed.

I'm hoping to get in a walk with Joe and an upper body weight-training session.

This is the weekend I'm going to figure out what the difference is between "MS-kicking-my-ass" and "Fuck-it-I'm-just-lazy", I'm banking on it.

Posting from my phone

2011-07-08T00:39:00.000-07:00

Because Shaw craps out at midnight for the past three days. Why? I do not know.

Taking two days off from typing has saved my wrists. So much better.

Goal= 2400 words
Actual=2154 words

Not bad, but I'm usually okay with making it over 2000 words.
Hopefully Shaw works their shit out tomorrow.

Book in a Month - Day 5A

2011-07-05T23:39:00.000-07:00

I have taken four extra strength Motrin liquid gels in the past 5 hours and they haven't touched the pain in my wrists and fingers. There's just nothing more frustrating than having body parts fail because I have to choose between something I love and a job that I hate.

According to the the x-rays, ultrasound and nerve testing I had last year there's nothing physically wrong with my arms. The theory is nerve pain and nerve fatigue as a result of MS.

I am so angry.

Book in a Month - Day 4

2011-07-04T21:19:00.000-07:00

Goal = 2400 words
Actual - 1680 words

I forgot to take Motrin before I started to type. If I want to have wrists available to do work I'm actually paid for I've got to pack it in tonight.

I really feel pretty good about that word count today, even if it did fall short of my goal. I managed to put it together in about an hour and forty-five minutes.

Going to ice my hands now.

Book in a Month - Day 3

2011-07-03T22:57:00.000-07:00

Goal = 2400 words
Actual - 3235 words

Made up for the shortfall entirely and have 750+ words in the bank. Had to force myself to go for a walk as I spent 7 hours out of 12 working on this.

Tomorrow will be the big test. I've got to fit 2400 words into a day that includes 9 hours of work and travel time.

Book in a Month - Day 2

2011-07-02T20:32:00.001-07:00

Goal = 2400 words
Actual = 2765 words

(Almost made up for yesterday's shortfall, but MAN are my wrists sore. Typing with MS can be stupid difficult sometimes.)

Book in a Month - Day 1

2011-07-01T23:06:00.000-07:00

Goal = 2400 words
Actual = 1985 words

Book in a Month Contract

2011-06-30T22:58:00.000-07:00

I, Lori Varrin Kidwell, agree to follow the steps of the 30-day Book in a Month system.

I will make the necessary changes in my life to accommodate this goal, and I will ask family, friends, and my fellow writers for help when I need it. I will organize my time well so I can do this, and I will set aside all non-essential tasks so I have time to achieve my goal.

I will work on my book 6 days a week (if I miss a day, I'll just keep going). I will complete 260 pages and get to the end. No matter what happens during these 30 days, I will just keep writing.

"I don't have the time" is not a good enough excuse for the next 30 days.

I promise myself that I will celebrate when 30 days are up, even if I only meet 75% of my goal. I will tell my family and friends to get ready for this celebration in Week 3, to further motivate myself. (It also helps that my 30 days ends the day before Vancouver Pride!)

This book is important to me. My future readers are waiting to read it and I owe it to them to finish it. What I have to say is important.

Original signed
Lori Kidwell
June 30, 2011

Searching for the Words

2011-06-25T19:36:00.004-07:00

In the story of my life, my Catholic Confirmation was really the beginning of my honest-to-goodness questioning of what faith was and what was expected of me. I remember going through the whole religious process with not a whole lot of concern for the spiritual aspects of confirming my belief that I would be a Catholic for the rest of my life. I remember being concerned that this was far too large of a decision for a 10 year old to be making. I remember really wanting my confirmation name to be linked to my family some way. (I chose Theresa, my great grandmother’s name) I remember being upset that my aunt couldn’t understand why I would ask her to be my sponsor because she didn’t remember that she was my godmother. I remember giving far more consideration to my appearance and remembering things we had to repeat than I was about any relationship I was supposed to be developing with god or Jesus.

Part of the process was going on a “spiritual retreat” to the convent nearest to our school. Worst. School. Trip. Ever. We went to the convent at Mount St. Joseph for a full day of prayer and contemplation of our future life as “full patch” members of the Catholic faith. I recall a nun and a priest giving a speech to us. I don’t recall any of my classmates taking it all that seriously. I spent some time just wandering around the grounds trying to figure out what the nagging feeling was. It was a feeling that something wasn’t right, not necessarily that something was wrong, but just… not right. I don’t know that I could put my finger on it even now, but I found myself walking in circles around the garden path trying to figure something out, to no avail. I remember a classmate teasing me for taking all of “this god stuff” too seriously. Was I taking it too seriously? Probably, but not in the way that I was being teased about. I was not devout. I was sure I was not doing the right thing.

What I really wanted was to grab someone and beg them to help me find the language to put that feeling into words. But I was there in a convent, surrounded by people who’s job it was to make me a good Catholic and my peers who were just thrilled we weren’t at school. I just wasn’t sure that confirmation was right for me, but I knew that I didn’t really have a choice about it. My robe had been rented. My stole had been named and symbols of my Catholic faith dutifully glued to it. My aunt was coming to be my sponsor and family was coming from out of town. I even managed to score a new 10-speed bike in black and silver out of the deal. I was going to be Catholic for life because that’s what my parents were and as their child I was going to be Catholic too. Catholicism was the only religion available to me so I didn’t know that there were other options, other than the faiths that would go door to door trying to spread their faith. I didn’t know then that a few short years later I would increase my vocabulary when it came to all things of faith.

This entry is an edited excerpt from the as yet untitled memoir I have been writing this year.

Because You’ve Got to Have Goals

2011-06-20T21:42:00.001-07:00

I have been thinking a lot about never giving up on your dreams since last night when Lady Gaga won a Much Music Video Award. She said to never give up on your dreams. For most of my life I don’t think I had any dreams. Or at least not specific ones.

According to The Change Blog STEP ONE is Make a list of what’s important to you.

Here is my list of 10 things (in no particular order of importance):

Security
Joe
Walking
Comfort
Writing
Pajamas
Intelligence
Sex
The internet
Organization

STEP TWO is Ask "Why is this important?" for each item on your list.

Security because having it is the only reason I have to live.

Joe because he’s the reason why I show up for my life every day. I owe him so much and I do not want to let him down.

Walking because one day I may not be able to.

Comfort because, along with number security, it is the only reason I have to keep breathing.

Writing because it is the second thing I showed some aptitude for and enjoy.

Pajamas because when I am wearing them I feel comfortable and secure.

Intelligence because it is what keeps us from killing each other.

Sex because it is the first thing I showed some aptitude for and enjoy.

The internet because without it Joe would be the only person I like that I talk to on a daily basis.

Organization because it is the third thing I showed some aptitude for and enjoy.

STEP THREE is Use your answers to identify your values.

The things I value are security, being good at something, and self-preservation.

STEP FOUR is Use your values to set your goals.

I guess I’m going to have to get a little free associative with this goal setting thing because the only thing I’m getting from this list is that I want to be Hugh Hefner, only with a way better publication and brand to control.

I don't believe in happy endings

2011-06-11T13:53:00.000-07:00

A man I once loved said to me, “No matter what, unless we die together, it will all end in tears.”

Happy endings seem to presuppose that changing the legality of a relationship, leaving a crap job or getting out of a place you don’t want to be is an “ending”. I have never known a single human being who’s life stopped at the point where John Hughes would end the movie. An ending, happy or otherwise, begets a beginning.

I have been laid off from jobs that I hated because of financial cutbacks no less than 3 times and was able to collect federal Employment Insurance benefits whilst I tried to find something more suitable. I have yet to find that job. I don’t believe it exists. So while the ending was filled with relief the subsequent financial instability and settling for yet another job I knew I would hate didn’t really make that ending happy. The new beginning it begat wasn’t very good either, and I suspect that when my current job does come to an end I will feel anxious relief. I won’t know where I am going, but it will be different from where I was.

Having never been involved with a team or project that had an ultimate goal or finite outcome, I guess I will never feel the intense emotion of that kind of happy ending. Upon further consideration I suppose that some of the work I did in politics could have been considered to be happy endings, but the election outcome was never the end. Winning political office is never the end all and be all. The work begins the next day to begin to hold office. Just shortly after you start to feel that things are flowing as they should, it’s time to run for re-election.

What I do believe in is happy beginnings. The stereotypical “Boy marries girl” is not my idea of a happy ending. In my case it was the happiest beginning of my life. If our relationship had a “Happy Ending” I would have to say that that was the day he moved to Canada to be with me; one month before the wedding and 10 months after the first time we spoke. It was the end of long distance phone calls, the end of trying to carve out time for travel, the end of trying to find a way to work out our schedules so that we could still have lives and take care of each other across two time zones and an international boundary.

I wasn’t sick then. He was just a month after donating his mum a kidney. He had just dropped everything - the life in the city he had lived in for the better part of two decades, the job he’d had for most of that, the apartment he’d rented for years and years at that point - to give his mother an organ, move to a foreign country and marry a woman he had known for less than a year.

I have been kissed a hundred thousand million times but there are three that I absolutely won’t forget. The first one ever, the first one with Joe, ever, and the first one with Joe on the platform at Main Street/Science World Skytrain station as I went to pick him up from the station. That was the first kiss I ever got from him that wouldn’t start a countdown to his departure. He was home, and I knew that I was ending all of the long-distance bullshit that had taken over my life in the previous 8 months.

That was the moment in my life when John Hughes would end the movie. But as suddenly as that happy ending was realized, it was over. That was a new beginning. That was the start of something that we carefully considered, planned for and fretted about for the previous 6 months. That was the moment our new life had begun.

"Hockey players wear numbers because you can’t always identify the body with dental records."

2011-06-06T20:37:00.001-07:00

Duh da duddada - Duh da dadada

Duh Dah DaDaDaDa - DAH DAH DAH DAAAHHH

DUH DA DA DAH DADA!

(your transcription may vary)

Now that summer is here (we hope) my biological clock is confused about my desire to spend a Saturday evening indoors watching hockey. My team’s been golfing for weeks, but the team of my adopted home is in the Stanley Cup final. (Game 3 is live from Boston as I type.) Watching the lifers and long suffering Canuckistanians get into it and celebrate has been inspiring.

I haven’t watched a Stanley Cup final with such interest in years. (18 to be exact - but who’s counting, other than every Montreal Canadiens fan in the world.)

Some of my earliest family memories - vague as they are - involve church-hockey-euchure on a Saturday night. I have quoted The Theme Formerly Known as the Hockey Night in Canada Song above. I am pretty sure that I could name that tune in two beats.

I know all of the words of the Star Spangled Banner - not because I’m the wife of a patriotic American, but because I was once a 5 or 6 or 7 year old Canadian who happened to watch or overhear a LOT of hockey. When I was a kid I thought that O Canada and the US anthem were just one long song. They just reversed the verses for what city they were playing in.

What’s weird is that there were certainly no classes or tutorials on this stuff - I just know it. I know at some point someone taught me the icing and offside rules but I don’t recall when or by
whom I was told. I suppose it was my dad, but it could have been an uncle or a family friend.

Just as I do not have a memory of not being able to read, I don’t remember not knowing about hockey. I don’t remember, even in my surly-anti-establishment-queer-community days, ever turning down the opportunity to watch a game.

Even as I write this the TFKatHNICS is ringing in my ears. That song is as much a part of my identity as my eye colour or where I was born. I have so few specific memories of my past anymore that I cling to whatever vague assurance I can get from my past.

The Canucks killed me tonight. My hatred of the Bruins is greater than my love of Vancouver. I am taking this humiliating loss a little more personally than I should.

Mi amore vole fe

2011-06-05T16:43:00.001-07:00

What do I want? I am far more certain of what I don’t want. What little I do know I want are small victories or pie-in-the-sky outlandish, never to really happen dreams.

One of the small victories I want would be to have then spastic tension in my left calf let go for just a day.

One of my pie-in-the-sky outlandish dreams is to write a memoir worth reading that won’t make what’s left of my family angry at me or get me sued.

I want to be able to smell coffee without wanting to puke, but I also dream of winning the lottery and living it up.

I want to know what the future would be like if I didn’t have MS. I dream of the day when MS is cured and I can stop holding my breath, waiting for the next bad thing to happen.

I want to have a spontaneous memory of my past that does not include an anxiety attack. I dream of the day when I can afford to have my hair, nails and toes done, brows and a wax job all in the same month. That dream seems pretty out there right now. I have expensive maintenance costs.

I want to be joyful a little more often. I dream that the next time my grandma sees me she will remember me. I want to be more creative on a daily basis, but I dream of being able to dance again.

I want to know what I am good at and I dream of the day when that is obvious. I want to show the world that logic isn’t terrifying. I dream of a day when all my friends are equal in the eyes of the law in every country around the world.

I want the day to come when I am able to stop making lists. I dream of the day when I am able to get through a day without forgetting something important.

I want to quit my job. I dream of the day when I own a real sofa. With cushions and stuff. I want to get more out of what little time I have. I dream of the day when I have enough energy to even attempt to take advantage of that time.

I want the Montreal Canadiens to win the Cup next year. I dream of the TD Garden and the Wells Fargo Center blowing up and taking their respective teams with them. (Not the players... but the buildings and franchises.) (Well, maybe some of the players.) (And Bobby Clarke... and hopefully Garry Bettman is visiting.)

I mostly want security; a most likely scenario going forward that gives me the odds on what kind of life I am going to end up with. I want to love my life and dream of knowing for certain what I am meant to do. I want to continue to love Joe.

I want to believe in myself. I want to believe that if I were tested I would stick with my values. I want to believe that there are few things worth dying for and that if I was faced with them, I would. I want to believe that I am a person of character. I want to believe that my personality doesn’t sell out my character.

I dream of loving my life.
(love needs faith)

Turn my sorrow into treasured gold...

2011-06-01T22:10:00.000-07:00

I'm trying to change. Still.

The past couple of months have been a lot about just trying to find the energy to get through my day. 10 days away from work seems to have helped. 9 days being reminded of where I came from and recalling how I ended up where I am now has been emotional and at times difficult but probably what I needed.

I am hoping that the last half of this year brings more change.

The future starts now. I know that. I've probably always known that.

Oh, and in case you were wondering... it is not enough for the Canucks to win.

Boston.
Must.
DIE.

DIE!

Paranoia will Destroya

2011-05-03T19:45:00.000-07:00

Two months ago to the day my mind and body just completely crapped out on me. I had done two straight months of being completely on top of my game and feeling great about it. Then one day, it all just broke.

My anxiety is constant and shifts from quietly lurking in the background to full out, screaming loud hyperventilation as it feels like the weight of the world has been rested on my chest. As I write this, I'm about a five on the ten point scale between those to ends. I'm terrified of everything.

Once again on my lunch hour I found myself in the self-help section of the bookstore scouring the shelves for the book, the program or the workbook that would help me fix my lousy fucking life. But it's not there. No matter how much I want it to be there, it's not.

My neurologist doesn't want me to do cardio (other than walking) or strength training every day because recovering from the nerve fatigue gets harder and harder with each successive day. So instead of figuring out a routine that would work I just quit. I just quit because I know myself.

Building a habit for me means I have to do it, practice it every single day. If I can't do something every day, I won't do it. I know myself. That's how I maintain my employment, I have daily routine that gets me out of bed and to the office and then home again. Any deviation from that can cause problems. Which is why I sit here.

I'm sitting here because I know I am being judged. I'm being judged by everyone I come into contact in a day. That is not rational, but I feel it. Every screaming loud hyperventilation trying to get out is telling me that I am a failure and completely worthless. No book or program or church or whatever is going to fix the MS to take this away.

My brain is broken. That is the most difficult thing for me to accept. I rebel against the idea on an hourly basis, but then reality smacks me in the face by making me bang into a door frame, not be able to lift my arm up, or just leave me so hopeless I wonder if there's any redemption in this world at all.

I keep making plans that keep getting blown up before they even taxi down the runway. It's gotten to the point that if the next plan gets shot down, I'm not telling anyone until they actually happen. It's just too devastating and makes me self-loathe with almost a religious fervor.

My friend Karen sent me a BBM after the MS Walk telling me that I am awesome and the over $2,100 we raised as a team was because of me. I never thanked her, because I was too embarrassed by her words. So Karen, if you are reading this... thank you. Your kindness humbles me.

So here I am with a sink full of dirty dishes left by Joe as he skipped the country, a disorganized house, a 1000 piece photomosaic jigsaw puzzle of the Canadian flag set up on the table, two cross-stitch projects started and one to just do the finishing on and all I can do is sit here and just obsess about how much my life sucks already and how what happened last night can only make matters worse.

I've been through enough therapy in my life to know that reality is what you focus on. I just don't know where you get the drive to just keep going through the motions. I don't have any goals that are important. The only dream I have is to have enough money that I can have a haircut, manicure & pedicure, waxing and threading scheduled in the same month. My only goal is to have a clean enough house and do enough writing in a month that I don't completely lose my mind. I'd like to lose 30 lbs, but that's highly unlikely given my strange food obsessions, fear of cooking and grocery stores and propensity to sit for hours and days on end.

I finally started to cry. That's where this ends.

Love and Pain

2011-04-13T22:06:00.001-07:00

I love my MS Walk team. They show me that people are good and they will get up stupid early and stand in the rain to help a friend. I feel unworthy of their love. I feel unworthy of all the love I was shown by Team Gl*tterB*tches 30+ donors. Next year I swear I am going to get my stuff together earlier and try to reach more people.

(As a side note, donor pages are open for another two weeks. If every participant raised just $20 more, we would raise another 1.2 million dollars!)

It’s taken me a couple of days to write this, mostly because my wrists, elbows, shoulders and knees are screaming in pain most of the day. I save up my typing time for work because I don’t actually get paid to blog, but I do get paid to transcribe dictation at the office.

I’m settling in to watch the NHL playoffs whilst my husband leaves for a two or three week get-away to the US to see his friends and family once his final exams are done.

I’ve missed some work this month, which I always find aggravating. I find it upsetting because I really don’t know if I am sick or just sick and tired of my job. I keep pushing myself to show up for my obligations, and until yesterday I had been mostly successful.

My neurologist suspects that much of what is wrong with me stems from my psyche not my damaged nervous system. I suspect that she’s correct.

I haven’t cried in weeks… maybe months. I choke up every time I hear “Born This Way”, but that’s not the same as having the meltdowns I used to have daily. I kind of miss them. At least I had hope. Or something.

What ever it was… I don’t have that anymore.

TEAM GLTTERBTCHES - 2011

2011-04-11T20:18:00.002-07:00

GlitterBs, a photo by MS.Society_bc on Flickr.

"We're MS walkers, that's what we do.
Purple and glittery, that is our crew.

We have two doggies, they'll give you a lick.
But to keep it family friendly we can't say our name in public."

Thank you, thank you thank you to Margaret, Viktoria, Erin and Ray and especially Joe.

With your help we raised $2,150.68 for MS research and services. While I wish that I didn't have to walk, I did it.

And I'll do it again next year, because my team is amazing. My husband is amazing. And if I can keep these legs of mine moving amazingly I'll be there to walk for all the people who can't.

I have some other stuff to say about my lack of blogging over the past couple of months. Maybe I'll get around to that in a day or two. Or more.

Oh, and the water resistant tiaras were an ace investment.

TEAM GLTTERBTCHES (Ends at midnight on Saturday)

2011-04-08T19:36:00.000-07:00

I'm only here to ask for money.

The walk is on Sunday, April 10, 2011. I'm waking up at 6:30 in the morning to go for a walk in a ridiculous amount of cosmetic grade glitter in (what is forecasted to be) the rain.

There will be photos.

We've raised $1,950. We're trying to get to $2,000 before the walk. You can help.

The last donor will win an official Team Gl*tterB*tches water resistant purple glitter tiara.

You want it. You want it bad. I know.

I think I'm broken.

2011-03-15T23:31:00.002-07:00

That's the only word I have to describe it.

I don't know what to do about it.

I probably should just go to bed and forget about it.

The Apocalypse. Bring it.

2011-03-09T20:45:00.004-08:00

I was going to sit down tonight and write about the next chapter in This Year I Will... but then I got reading the news and the posts in my Facebook news feed and all of a sudden I was just overcome by it all.

We, as a species, do not deserve this planet or opposable thumbs.

Just look at the front page of the CBC website. As I write these are the stories in the first screen view.

Tories slapped with 2 rulings

Quebec boy survives 3 hours in snow bank

Nurse disgraced in US working in Canada

UN investigator opens Libya torture probe

Egyptians clash in Tahrir Square

Chara avoids suspension for Pacioretty hit

Ovechkin has way with road-weary Oilers

(Okay so that last one isn't really bad news. Ovie is a loon, but I am so not an Oilers fan that I just can't bring myself to care.)

But let's break down the news of the day!

The party currently in power (aka the Harper Government) has an MP that misled parliament and the government hid the costs of items in the budget, putting them in contempt of parliament. There is so much snow in Quebec that you can lose one of your kids shoveling your driveway. Licensing bodies have no legal obligation to provide information to another jurisdiction when someone has been disciplined or been stripped of their license. The "government" of Libya is torturing its own citizens, as well as bombing and shooting them. The Egyptians who got together to overthrow a dictator now have found something else to fight over. And finally, it's okay to smash a guy's head into an immovable piece of metal, both rattling his brain and fracturing a vertebra, as long as you are playing hockey.

Got all that?

Then this petition showed up in my news stream.

You read that right. The New York Times wrote a story blaming an 11 year old girl for being raped by 18 boys and men. I could not believe it either. If you think that this is no big deal, get the fuck out of my blog and never speak to me.

The people of this planet suck. Why am I so worried about how to change my life or the size of my gut or getting a job I don't hate, when the entire human race is just interested in tearing each other down, exploiting the vulnerable and building small communities based on mutual scorn and mutual vengeance.

Maybe the secret to living sanely on this planet is ignorance? Maybe it doesn't matter what I end up doing with my life as long as I can stay medicated just enough to not pay attention, but not so much as I can't make it to work.

I'm really angry about the state of affairs. For tonight, I just throw my hands up.

More accountable

2011-03-07T19:21:00.004-08:00

The week of February 28 through March 6, 2011 did not go as planned. I ended up working five straight days of overtime and coming home mentally and emotionally wrung out from spending the last 4 hours of the day being shouted at and told to drop one thing for one thing after another until we got it all banged out. My wrists and forearms screamed in pain every day before I got home. I didn’t write at all last week with only those two blog posts being the only words I put together to form sentences and paragraphs.

By Friday I was just a crazy wound up ball of frustration, so I ended up having chocolate pudding and beer for dinner and then handfuls of microwave popcorn, pretzels and tortilla chips on top of a couple of vodka and Coke Zeros. (Yeah, I know. It was a horrible freak show of food, but I wasn’t an idiot, so I’m okay with it.)

Saturday I found out that if I don’t start my day and keep refueling with caffeine at regular intervals I can’t stay awake for more than 2 hours. Since Joe was working on school stuff he didn’t really notice that I wasn’t around and just let me sleep. MS is just a gift that keeps on giving. Sunday was more awake than asleep but I was still really slow and tired.

This is where it gets hard. This morning my alarm went off at training o’clock and I just could not do it. I couldn’t open my eyes, I couldn’t lift myself up, I just could not get out of bed until well after 7:30 AM.

I’m terrified that I am getting sick again. I haven’t started going to bed at 5:30 PM yet so I’m not sure that the fatigue is a new symptom, but it is frustrating as hell not to be able to do what I could do just a week ago.

So this brings me to Chapter 2 (which was supposed to be published on Saturday) and Chapter 3 (which will put me back on schedule).

You’ve Really Got to Want This

and

What Need is Being Served by What You’re Doing Now?

Chapter 2 in a nutshell – Don’t bother setting a goal you aren’t willing to do the hard things for. You will fail. All the good intentions and hopes in the world won’t help you if you don’t really want it enough. If you really want it, you’ll do it through the setbacks and disappointments. That’s where I am at now. Do I really want this enough to do what is hard?

The key to Chapter 3 is coming to realize that what you are doing right now seemed like the solution to a problem but now the solution is a bigger problem than the original. If I don’t understand why I do what I do now, I’m unlikely to be able to change it.

What need is being served by what I am doing now? I have to get clear on that in order to succeed. Confession… I really think I do what I do now because sitting is easier than standing, standing is easier than walking and walking is easier than running. Not sure what need that is filling but I do know that cupcakes will not plug gaping chasm where your soul used to be.

Accountable

2011-03-04T19:52:00.003-08:00

I was supposed to write about Chapter 1 - Preparing for Change last night, but I ended up spending over three hours completing the job application for the government.

THREE HOURS (and I didn't even finish the cognitive skills test) and it left me just exhausted. So... I'll be brief.

Chapter 1 of This Year I Will... is less than two pages long. It simply warns against just jumping in and taking drastic actions when you haven't even thought it through. You have to prepare to take action.

Be clear about my motivation:

Why do I do what I do now?

What will help and support my personal changes?

Can't linger here, at least not for very long. I know for me one of my fail points is just jumping in and not realizing what I can actually fit into my life logically.

Before action - prepare.

I"ll be back tomorrow with Chapter 2 - You've Really Got To Want This

The Trail Becomes a Rut

2011-03-01T20:34:00.004-08:00

TOP TEN RESOLUTION PITFALLS

1. Being vague about what you want.
2. Not making a serious commitment.
3. Procrastinating and excuse making – no time, wrong time, dog ate my homework.
4. Being unwilling to go through the awkward phase.
5. Not setting up a tracking and reminder system.
6. Expecting perfection, falling into guilt, shame, regret.
7. Trying to go it alone.
8. Telling yourself self-limiting rut stories.
9. Not having backup plans.
10. Turning slip-ups into give-ups.

From This Year I Will… M.J. Ryan – Broadway Books (2006) p.8-9

If you are like me at all, you get so fed up with your life that all you can do is maintain the status quo to the detriment of your personal wellbeing or all you want to do is start indulging in really, really destructive behaviours until you die. Or get fired. Or divorced. Or whatever.

When I was diagnosed with MS I found that,

a) I have another human being in my life who was counting on me to get as better as I could so we get our future in order together, and

b) I did not have the money, energy or youthful body I once had to set myself up for a downward spiral.

Last August I got my wakeup call. I found out that I was the fattest I had ever been in my life. I was crazy with menopausal symptoms, I hated my job and I just wasn’t happy with anything in my life. So I started trying to change.

And I did for a while until I stopped. I had a MS setback for a couple of days and just never picked back up where I left off when I was better. I knew that I was happier when I was doing the stuff I had decided that I wanted to do, but I had a killer case of the “Ah, fuck it”s.

I get those a lot.

In December I read a review of this book, though I can’t seem to find it now. It was on sale for $13 or something and I was already purchasing a book for my dad so that pushed me over the $25 threshold to get free shipping. Ta Dah! I had a book that might help.

Last night I re-read the first chapter of This Year I Will…, The Adventure of Living Your Dreams, and remembered why I thought that this particular book might actually help.

1) The author makes no time sensitive promise: “A New You in 30 Days” “Fix Your Life in 72 Hours”

2) states that people are capable of change in fundamental ways.

3) that giving up an old habit is really starting a new habit.

4) that there is no “one size fits all” answer, formula or system that will help people change.

So we are standing on the precipice of either jumping off or staying where we are. This is pre-contemplation. This is necessary. The questions I’m asking myself tonight are posed in Chapter One as examples of what others did before making a life change.

“What Will Truly Make You Happy”?

“What’s the Price of Not Changing”?

I’ve had my wakeup call. I’ve experienced some success, yet there are things that are driving me nuts about my life. That’s why I’m here, asking the questions.

So – where do I want to go with this? That’s why I am here. I have been informed that I can achieve what I set out to do, if I only have the skills and tools necessary to do them.

Go. Forward.

Preparation

2011-02-28T22:41:00.002-08:00

It's a new month.

I am fairly happy with the state of my resolutions.

I managed to meet all of my goals on 22 of 28 days in February, and got at least one thing I wanted to do on all 28 days.

Tonight begins a new set of priorities. I am trying to figure out what three things I want to create or maintain during the month of March, so I'll be reading and working through This Year I Will... over the next two months.

The biggest change is that I'll be blogging every second day. We'll see how that goes. Thankfully, there is a really public way of holding myself accountable. Either this space gets filled or I'm not living up to the contract.

It's almost bedtime. G'night folks.

"Different"

2011-02-19T22:43:00.004-08:00

Someone from my deepest, darkest past sent me a message today that said, "Wow, are you different!"

Bear in mind that I have not had a conversation with this person since I was 19 or 20 years old, so that comment should come as a compliment. I am SO HAPPY that someone noticed I am not the person I was 16 years ago.

As a result I started thinking about my resolution for 2011, and realized that almost 9 weeks into the year my resolutions are still on track.

Yeah, I know. I was shocked too.

In late December I started reading this book. "This Year I Will..." - I read a chapter every day in the month of January and now I'm reading the remaining ones every second day. (There are 48 chapters, mostly three or four pages)

I'm nearing the end and I feel that it has given me or reminded me of the tools that I need to still be in the game 50 days later. I'm really amazed by this simple and compact group of ideas. Why I am succeeding now makes sense, but I've also learned why I failed in the past - and that's huge.

I want to make some changes to my daily and weekly habits in March, and I'm going to be going back through the book to do it. I think I am going to stick with the every second day reading and focus and it occurred to me that I could blog about it.

So, gentle reader, would you be interested in reading my thoughts about change? This is a completely serious question, and all votes will be published. If you don't want me to know it's you voting NO, make sure you respond anonymously through Blogspot.

Anthem - 2011

2011-02-18T21:04:00.002-08:00

Don't be drag, just be a queen

Whether you're broke or evergreen

You're black, white, beige, chola descent

You're lebanese, you're orient

Whether life's disabilities

Left you outcast, bullied or teased

Rejoice and love yourself today

'Cause baby, you were born this way

No matter gay, straight or bi

lesbian, transgendered life

I'm on the right track, baby

I was born to survive

No matter black, white or beige

chola or orient made

I'm on the right track, baby

I was born to be brave

Announcement

2011-02-15T21:33:00.004-08:00

It's a damn good thing that I was a card carrying member of Team No Babies in 2009.

It's official.

With an FSH level of 49 I am (drum roll please)

post-menopausal.

The ovaries are done, dude. Mitoxantrone cooked them.

The plus side is that I won't have to worry about o.b's discontinuing my favoured absorbency. Maybe I can sell what few o.bs I have to the highest bidder?

This feels kind of weird though. I mean, I'm only 36. Am I now going to start shaking my fist and telling those darn kids to get off my lawn?

I've been off hormone replacement therapy for about 6 weeks with little problem. I now have all the time in the world to decide if I want to go back on it or if I want to mitigate my estrogen loss in other ways like diet, exercise and supplements.

Stuff to think about that I wouldn't have to think about if it weren't for MS.

Stupid MS.

This is counting toward my daily writing total

2011-02-07T22:54:00.001-08:00

I don’t have enough time or energy to work on my project and blog in the same day. Today… the blog wins. I’m in sort of a weird space right now.

On one hand I joined SparkPeople last year to try to lose some weight because I am unhappy with the way I look.

On the other hand I have some wonderful friends who are open and passionate about fat acceptance.

On one hand I completely love and accept their fat and the fat of others. On the other hand, I hate my own fat and will do what it takes to get rid of it.

What it takes to get rid of it does NOT include crash diets, pills, potions, powders, enemas, "cleanses" or hocus pocus.

What it does take is being mindful of the fuel I put in my body and taking the time and spending the energy to move that body.

I am NEVER going to be 115 lbs because I would look and feel sick if I was. I am, however, going to be 135 - 140 lbs and be strong. I hate my fat because it means, right now, that I have not been taking care of my body. But I am trying to change that.

I was talking with the MS nurse today and told her about doing cardio and weight training. She agreed that it was good for me. She told me that building lean muscle mass can help me recover from a relapse. Deconditioning, rather than nerve damage, can be the cause of many symptoms of weakness and instability. If you’re in good condition before the relapse it takes a lot longer to decondition and makes getting back in condition easier. Muscles have memory and triggering that memory can make recovery happen in half the time.

So, I’m trying to get in shape because I want a strong, fit body, not a skinny, helpless one. I am trying to get in shape because I’m watching my grandmother lose her mind slowly because she did not take care of her body. I’m trying to get into shape because my three dead grandparents didn’t take care of their hearts. I’m trying to get into shape because I love me enough to not want to be trapped in a body that doesn’t work. If MS takes my body, it’s not going to do it without a fight.

And when I manage to get my body back to where I feel sexy and together again, I hope you won’t sneer that I’m buying into some gender –normative social construct beauty myth.

1st Management Commentary for Month One of Fiscal Year

2011-01-31T20:44:00.007-08:00

On resolution 1. of the Resolution of the Sole Shareholder of LVK Ventures Inc. progress has been remarkable. The shareholder has managed to not only make appointments, but arrive on time to them. She did not cancel a single appointment no matter how (potentially) unpleasant the appointment might have been.

This month, the shareholder made it to a bladder function test, a waxing appointment, a gynecologist appointment and a hair appointment.

Management looks forward to February's appointments - sewing lesson, a urologist appointment, a Meat Beat Manifesto concert, a psychiatrist appointment, a follow up appointment with the gynecologist, and the shareholder's third waxing appointment in as many months.

On resolution 2. art practice output was operating at or near capacity for 26 days out of 31.

On resolution 3. stationary biking happened 25 out of 31 days.

On resolution 4. the shareholder gave up the will to live three times in 31 days, by eating McDonald's once and KFC two times.

Management is overjoyed by the progress made on resolution 5. A goal of 250 words per day was set and output was a stellar average of 318 words per day. 9857 words were written in the month with 5,996 of them deemed to be usable or re-workable in a current project.

If output continues on this level in February and March, the output goal for Q2 will be revised.

On resolution 6. this post still doesn't count toward my daily and monthly totals. Lazy Brain is reportedly less bitter about this.

Lazy Brain also needs much less reminding about resolution 7. and is okay most days with the non-cumulative nature of the accounting. Except for the day they wrote 1093 words, LB was pretty bitchy about not taking the next day off.

The sole shareholder continues to engage in resolution 8. This is part of the reason why she is taking sewing lessons on Wednesday.

In the spirit of resolution 9. current productivity levels are to be maintained at minimum and increased where possible. To this end the sole shareholder has deemed that February will be 28 Day Bootcamp Challenge month to try to lose this 15 extra pounds her old scale didn't tell her she had.

We look forward to tracking next months progress with shiny stars on an Anne Taintor wall calendar. That month's theme:

Stupid is as stupid does

2011-01-27T19:04:00.003-08:00

I am making the stupidest mistakes.

I have an obsessive attention to detail gene and MS has broken it. I can barely think, let alone think critically or logically. My brain is a mess, my attention span shot and I'm missing errors that used to stand out to me like a neon sign.

I have a psychiatrist appointment in a couple of weeks. I wonder if it is worth having a look at. I just know that I am failing at my job because my brain is failing me.

I am so fucking tired of MS stealing things from me.

Is it not bad enough that it's stolen my looks, my ability to move properly or regularly, my fun and my ability to do something more challenging with my life? It has to steal my brain too?

FUCK YOU MS! Fuck you right in the ear.

Where I am at.

2011-01-20T20:43:00.002-08:00

This land like a mirror turns you inward
And you become a forest in a furtive lake;
The dark pines of your mind reach downward,
You dream in the green of your time,
Your memory is a row of sinking pines.

Explorer, you tell yourself this is not what you came for
Although it is good here, and green;
You had meant to move with a kind of largeness,
You had planned a heavy grace, an anguished dream.

But the dark pines of your mind dip deeper
And you are sinking, sinking, sleeper
In an elementary world;
There is something down there and you want it told.

— Gwendolyn MacEwen - "Dark Pines Under Water," The Shadow Maker (1972)

(emphasis mine)

Urodynamics.

2011-01-11T17:52:00.003-08:00

I haz dem. (pops out a pdf)

That may have been one of the most humiliating experiences of my life, and I went to some really stupid house parties in high school.

MS causes all manner of old lady problems. I could only have one cup of tea today, so now I am barely conscious.

Today's Earworm

2011-01-08T10:30:00.002-08:00

FOR JOOLSY! Second donor to Team Gl*tterB*tches!!

GltterBtches Are BACK!

2011-01-05T20:49:00.003-08:00

Be the first to donate to my MS Walk team!

Or be the first to donate to me!

(This isn't the last you're hearing about this.)

(I promise.)

(If you were on my team, you could harass your own friends with this instead of being harassed by me.)

ANYWAY...

I don't really have anything else to talk about that isn't unspeakably boring.

Confession

2011-01-03T18:13:00.005-08:00

I could deal with having MS much better if it didn't take away my balance and weaken my left leg, thus rendering me unable a) to wear a pair of high heels and b) to justify the purchase of a pair of Fluevog Grand Nationals. In red. "Pony" hair.

Seriously... this is the loss of ability I mourn more and more as time goes on.

Today's Earworm

2011-01-02T21:16:00.002-08:00

HAPPY NEW YEAR

2011-01-01T10:28:00.008-08:00

RESOLUTION OF THE SOLE SHAREHOLDER
OF
LVK VENTURES INC.
WHEREAS LVK VENTURES INC. is a fictional extra-provincially registered corporation headquartered in British Columbia, Canada;

AND WHEREAS the sole shareholder, LVK, acting as the only legally recognized adult that resides in her head has declared that she is “sick of this shit”;

AND WHEREAS sometimes the pain of staying the same is greater than the pain of change.

THEREFORE BE IT RESOLVED that the sole shareholder establishes the following guidelines for the year 2011:

1. The sole shareholder will make and keep all personal appointments, either health or mental health related, in a timely and proactive basis. These appointments include and not limited to:
a) Doctors, and other health care professionals;
b) Hair stylists; and
c) Estheticians.

2. Complete one hour of visual art practice each day, which will almost always be limited to the completion of counted cross-stitch works, usually including profanity.

3. Ride the stationary bike for 20 minutes each day, 7 days a week and preferably in the morning, and walk for 20 minutes each lunch hour on scheduled work day when a one hour lunch break is in place.

4. Practice mindful eating, realizing that when the mind says “mass produced take out” what it is really saying is “You’ve lost the will to live, because that ain’t food.”

5. Write a minimum two hundred-fifty (250) words a day, even if that means typing, scribbling, writing in flowing long-hand, or printing with the left hand the words “I have to write 250 words today” over and over and over again.

6. This resolution of the sole shareholder does not count toward that total. Though her lazy brain thinks that it should because it’s now well over 275 words.

7. To irritate lazy brain, the amount is not cumulative. That is, the overage in a daily word count one day does not allow that overage to be counted toward the 250 word count of the next day. So take that, bitchy lazy brain.

8. The sole shareholder is to kick at the darkness until it bleeds daylight.

9. This resolution shall be revisited daily, weekly, monthly, quarterly and annually to ensure that adjustments are made for the health and capacity of the sole shareholder to act upon them.

Signed, Sealed and Delivered
on this 1st day of January,
2011 in the presence of: (original signed)
LVK
The people on the internet
reading this. Love you all.

Auld Lang Syne

2010-12-29T18:39:00.004-08:00

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?

Been avoiding this post

2010-12-12T22:08:00.003-08:00

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.

Warning:

2010-12-06T20:34:00.003-08:00

"No Inspirational Life Lessons Will Be Found In These Pages"

That is the disclaimer on the front cover of David Rakoff's "Half Empty".

"In this deeply funny memoir, David Rakoff examines his own life and the realities of our sunny, gosh-everyone-can-be-a-star contemporary culture. He finds that, pretty much as a universal rule, the best is not yet to come, adversity will triumph, justice will not be served, and your dreams won't come true."

I need to read this book.

That time of year.

2010-12-02T19:38:00.003-08:00

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.

I hate this.

2010-11-25T22:10:00.000-08:00

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.

FAIL

2010-11-23T20:20:00.002-08:00

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.

Avoidance

2010-11-05T19:14:00.003-07:00

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.

Math

2010-10-12T19:13:00.003-07:00

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.

TMI?

2010-09-15T21:29:00.002-07:00

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.

Lease signed.

2010-09-06T18:31:00.001-07:00

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.

Not Negotiable

2010-09-01T19:40:00.004-07:00

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

1. A 1 bedroom apartment,

2. ~~South~~North of Kingsway,

3. West of Victoria,

4. ~~North~~South 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.

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

2010-08-26T21:39:00.002-07:00

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.

Silence

2010-08-24T20:09:00.003-07:00

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.

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

2010-08-15T15:46:00.005-07:00

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.

Update.

2010-08-06T22:06:00.005-07:00

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.

France

2010-07-28T20:36:00.003-07:00

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.

Fuck this

2010-07-21T18:55:00.005-07:00

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.

Fail

2010-07-19T18:59:00.002-07:00

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.

36

2010-07-06T20:05:00.003-07:00

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.

Crazy

2010-06-27T11:34:00.004-07:00

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.

Weird

2010-06-20T12:25:00.003-07:00

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.

Uncomfortable

2010-06-07T19:54:00.003-07:00

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.

or

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.

One foot in front of the other.

2010-06-04T21:42:00.003-07:00

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.

woo.

Go me.

Because I have the gift of literacy...

2010-05-31T22:11:00.004-07:00

...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.

World MS Day and things that are apropos of nothing.

2010-05-26T20:00:00.005-07:00

(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."

Stuff that matters to me

2010-05-16T10:04:00.004-07:00

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.

TEAM GLTTERBTCHES

2010-05-11T18:30:00.001-07:00

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.

Bittersweet

2010-05-09T12:31:00.005-07:00

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.

Allergies

2010-05-08T22:31:00.004-07:00

Blah.

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...

One Week

2010-05-05T20:11:00.004-07:00

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.

Four

2010-04-30T20:14:00.003-07:00

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.

Anticlimax

2010-04-27T21:31:00.005-07:00

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.

Finally

2010-04-20T18:22:00.005-07:00

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.

This is not like me.

2010-04-18T09:41:00.003-07:00

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.

Strength

2010-04-15T20:12:00.005-07:00

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!

Avoidance

2010-04-13T12:53:00.003-07:00

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!

Trapped

2010-03-22T21:47:00.005-07:00

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!

le sigh

2010-03-17T20:14:00.003-07:00

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.

Great.

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.

My MS backpack is here!

2010-03-10T19:21:00.005-08:00

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."

Awesomesauce.

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.

YAY!

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.

BUT WAIT THERE'S MORE!!!!!!!!!!!

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.

GltterBtches

2010-03-04T19:45:00.003-08:00

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!

Woo!

2010-02-27T14:53:00.004-08:00

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.

My MS backpack.

2010-02-18T19:53:00.004-08:00

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.

Walk, walk, Fashion, baby.

2010-02-11T22:23:00.003-08:00

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?

Football and frustrations.

2010-02-07T16:34:00.004-08:00

I LOVE PAYTON MANNING AND I DON'T CARE WHO KNOWS IT!

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.

12 December 2008

How About the Province of British Columbia Lets Its Business Owners Act Like Grownups?

2012. Bring it on.

Three years.

Brainz - An Update (I forgot to post this 3 weeks ago)

Just sitting.

All the Way to Up to Eleven

Ch-ch-changes

To Eddie... with love.

I did not write this

Nostaligia

When you feel your life ain't worth living...

My friend died.

10 August 2011 - 12:45 pm

Insert Witty Title Here

I ruined my weekend

This is how my brain works

Profound desire...

Friday night.

Posting from my phone

Book in a Month - Day 5A

Book in a Month - Day 4

Book in a Month - Day 3

Book in a Month - Day 2

Book in a Month - Day 1

Book in a Month Contract

Searching for the Words

Because You’ve Got to Have Goals

I don't believe in happy endings

"Hockey players wear numbers because you can’t always identify the body with dental records."

Mi amore vole fe

Turn my sorrow into treasured gold...

Paranoia will Destroya

Love and Pain

TEAM GL*TTERB*TCHES - 2011

TEAM GL*TTERB*TCHES (Ends at midnight on Saturday)

I think I'm broken.

The Apocalypse. Bring it.

More accountable

Accountable

The Trail Becomes a Rut

Preparation

"Different"

Anthem - 2011

Announcement

This is counting toward my daily writing total

1st Management Commentary for Month One of Fiscal Year

Stupid is as stupid does

Where I am at.

Urodynamics.

Today's Earworm

Gl*tterB*tches Are BACK!

Confession

Today's Earworm

HAPPY NEW YEAR

Auld Lang Syne

Been avoiding this post

Warning:

That time of year.

I hate this.

FAIL

Avoidance

Math

TMI?

Lease signed.

Not Negotiable

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

Silence

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

Update.

France

Fuck this

Fail

36

Crazy

Weird

Uncomfortable

One foot in front of the other.

Because I have the gift of literacy...

World MS Day and things that are apropos of nothing.

TEAM GLTTERBTCHES - 2011

TEAM GLTTERBTCHES (Ends at midnight on Saturday)

GltterBtches Are BACK!

TEAM GLTTERBTCHES

le sigh

GltterBtches