White Castle Fries Only Come in One Size

Things I have done because of the Beastie Boys:

1. Made my now-husband take me to White Castle just to see if their fries only came in one size like they said in "Slow and Low" on Licence to Ill. Since that was 2005 and not 1986, White Castle now has fries in three sizes and I was sad.

For the record, White Castle is kind of gross. And they are surprised when you say "I would like two cheese burgers." They expect you to get four.

2. Developed a pole-dance routine to "So What'cha Want" because I felt at the time (and still do) that that song was meant to be stripped to.

3. I hum "She's Crafty" almost every time I do x-stitch.

4. Every breakup I have had since 1995 has led me to play "Sabotage" over and over again at high volume.

5. I cried when I figured out this line in "Sure Shot":

"I want to say a little something that's long overdue
The disrespect to women has got to be through
To all the mothers and the sisters and the wives and friends
I offer my love and respect to the end."

6. Googled "Saduharu Oh".

Adam Yauch, a rapper and founder of the pioneering and multimillion-selling hip-hop group the Beastie Boys, died on Friday in Manhattan. He was 47.

I've posted a bit about MCA's passing a bit on Facebook, so I apologize for bringing this up once again if you're tired of hearing about it. I don't usually get so concerned for dead celebrities but I think I have to accept that the death of a Beastie Boy for me is kind of like having a Beatle die. They are a part of the soundtrack of my life.

Namaste, muthahfuckah. The likes of Yauch we will not see again.

Not There Yet - A Haiku in Triptych

From Peace Be With You - a blog by Judy

I am still in shock.
I may never recover
and accept the blow.

It is not recent,
my decades-old life-slaying
damned diagnosis.

Moments of peace come.
I may even find laughter.
The sadness remains.

While my diagnosis is not decades-old, I really empathize with this feeling. Like I said the other day I'm doing really well physically. My mental health is probably as good as its been in years.

But sometimes, mostly when I think about the future, I cry. I know that the future we have planned depends on so many things we can't control. Like, I don't know if I will end up in a wheelchair. I don't know if the fatigue will one day take over my life. I don't know if I will always be able to move my hands.

I don't know a lot of things about my future, but what I do know is that I do not want to "accept" that I've got an incurable and life-limiting disease.

Whenever someone says "Hey, ya gotta stay positive!" I tell them that the only thing my positivity does for my illness is make it easier for my friends and family to live with me. It doesn't change the course of my disease, or make it easier to do up my own buttons or put on my own bra or walk without tripping on my own toes.

My "positive outlook" is mostly for the benefit of others because being real about how I feel about my prospects makes people, even the people I love, uncomfortable. I also try not to be an asshole to the people I love. I don't want to hurt those people.

After more than 3 years I have come to accept one thing. I am not going to accept having MS. I am going to live with it. I am going to get on with it. I am even going to do what is in my limited power to not let it get the best of me.

The Spoon Theory

The Spoon Theory written by Christine Miserandino

I've read this a couple of times since my friend Erin brought it to my attention in the first year after my diagnosis.

These days, I'm pretty fortunate. I've got a lot of spoons. They aren't limitless or as numerous as I had in my youth but I've got a lot to work with. Getting ready in the morning, for example, used to take individual spoons for hair did, makeup did, clothes on when now it's just one spoon for the whole "getting dressed and presentable".

 I still have to calculate for weather, temperature, and time of day. I can usually have a full and complete day - the kind of day where everyone forgets that I am sick - if I account for those three things. Sometimes - not very often and for not very long - I even forget that I am sick. Then something will happen and I will be forced to remember. My left knee will wobble, or I will spontaneously just start to tip over, or I'll be hit with a rush of fatigue that makes me need to sit down right that second. That's just what I live with. My spoons are limited.

Today is a difficult day. I'm looking for a job, and the ideal employer for me "decided to move ahead with another candidate". I was willing to give this company 80 to 90% of my spoons if I needed to just to work for them, but they don't want them. I'm not good enough, and they are probably better off with someone who's got the degree they want and unlimited spoons.

I have no other prospects and a crazy amount of time on my hands. This situation leads to crying at home whilst Ellen gives a school in Las Vegas, Nevada a new library. But in a couple of hours I will put on my game face and head out to a gallery opening for a couple of artists. That probably won't make me feel better, but at least I will be dressed and presentable.

 Maybe there will be wine.

$2,511.27

That's our total as of right this minute. Together with Erin, Margaret, Rina, Viktoria and Joe we raised over TWO THOUSAND - FIVE HUNDRED DOLLARS for MS research and patient resources. I am humbled by your support in this endeavour.

It didn't rain. We looked fabulous. We walked the 3K route, but I had to take two breaks because I overheated on the back stretch, which was disappointing.

I want to thank each and every one of you who helped us get exceed our team and personal goals. We could not have done this without you, and we ended up finishing 11th overall in team fundraising.

I have already registered for next year's walk, and we will have a new goal. I hope you'll be there for us again next year.

THANK YOU ALL!

MS Walk 2012 Fundraising Update

Hello my people,

Long time no talk. I'm working on some stuff that will hopefully make my entries less far apart.

That said, my MS Walk team has had a name, uh, alteration.

This is my personal fundraising page. You will see that I've passed my goal, Team Gl*tterBs has passed its goal and now we're shooting for EIGHTH place at the Vancouver location of the walk next weekend.

Check it out! The overall standings are on the right hand side!

If you can help us get there, I will send this week's top donor an Official Team Gl*tterBs Purple Tiara!

Thanks people, and I'll be back to update you soon.

Smooches, poodles.

4:30 PM Update because my Gl*tterBs are AWESOME, we're now in eighth place and shooting for seventh! The offer still stands on the top donor of the week tho!