Having a Bad Week

I'm not sure what has to happen in your life that makes you kill and dismember someone and put their torso in a suitcase and then mail some of the parts to national political parties; including a note that there would be more deaths then bugging out to Europe - probably France. However, I hope that if I am ever the subject of an international arrest warrant, my wanted photos are as well composed and professional.

How bad does your day have to be that you walk into a local cafe, shoot five people then walk off to carjack and shoot a sixth person? Five of those people are dead, the shooter killed himself when the police confronted him.

I have never been angry enough to shoot my landlord and then have a stand-off with the police. Not ever. Or be suspected of killing two people in a suburban sushi bar before I shot my landlord.

I have never wanted to eat the face of a homeless man whilst naked. I have wanted to rip the heart out of a couple of my ex-boyfriends, but that was more metaphorically than literally. And it never included tearing tongues out, shredding faces, or removing eyeballs - especially when unclothed. Turns out, that happened in 2010. I should learn to read the dates on these things more closely.

I really don't have an explanation for any of this, so....









OMG BABY PLATYPI!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Almost Internet Famous

In having a look at my traffic sources (because I am a big nerd about such things) I found out that my post, Battles, was featured on Carnival of MS Bloggers last week. I am humbled that someone found something I wrote interesting enough to pass along.

MSbloggers.com is run by Lisa Emrich, one of the first people I met online when I was newly diagnosed. Her personal site Brass and Ivory was the first site I sat down and read after seeing some of the articles she wrote for HealthCentral.com on MS.

I like her style and the way she handles her dual diagnosis of MS and rheumatoid arthritis. She's out there every day advocating for patients and educating the public on these two diseases. As an MS patient, I'm glad we've got someone like Lisa in our corner.

I'm looking forward to her stories when she returns from Europe.

Thanks Lisa for doing what you do.

Spousal Advice

90% of the TV I watch involves the arrival of the medical examiner at some point during the program.

My favourite kind of shows are the true crime shows like 48 Hours: Hard Evidence, Murder by the Book and, when it was on, Cold Case Files. (I miss that show so much!)

I can't be the only person who watches these types of shows and then says to their spouse:

"Baby, if you want a divorce just ask for one. Don't kill me."

or

"Baby, if you're going to kill me do it yourself. Don't try to hire some half-wit with a concealed carry permit."

or

"Baby, if you're going to kill me, make sure you know what day AND time the dumpster is picked up. Once I'm in the landfill, you're home free."

And I'm sure I'm not the only person who watches these types of shows and gives their spouse advice on getting away with spousal homicide who's spouse looks at them like they are insane and then refuses to listen to the logic and reasoning behind the advice.

That look and refusal makes me sad, because I've got this kind of thing worked out and he just doesn't care to know about it.

I suppose it's true that partners should have different interests.

Maybe you'll start feeling better if you stop reading WebMD

Yesterday was follow up visit with my neurologist. I have been attending her office every 6 months for the past year and a half. Yesterday was a big step in our relationship.

I have been given the all clear to now only see her every year, unless I relapse. This is so exciting.

My only real symptoms are numb fingers and numb toes and bi-lateral spasticity of my lower limbs. This is pretty awesome. Now that I'm not working she is concerned that I am not getting enough exercise and wants me to walk, at minimum, 1 km per day, to find some instruction in yoga and pilates, and to consider weight/strength training for my upper body and core.

Also, we have agreed that I will have an MRI in March or April of next year to see what is going on as she is supporting my decision to go off Copaxone.

I'm not going off Copaxone because it was horrible. I am going off of it because it is a constant mental reminder that I am sick when I don't feel sick. I'm also tired of being bruised and sore in inconvenient places. Mostly, I'm just really sick of being sick.

So, we've agreed that a one year break from Copaxone is fine. If there is no change in my lesion load next year, then we'll talk about Copaxone or see if Gilenya is covered by the provincial drug plan or see what else is on the market. If there is a change, then getting back on a drug is really my only course. I have had no change in my MRI since diagnosis, so anything that happens after now will most definitely be because I went off the drugs.

So, in the grand scheme of all things MS, with 1 being "meh" and 10 being "someone kill me and put me out of my misery", I'm a 1. Maybe even a 0.5.

I am extremely fortunate that my version of MS is turning out to be more of an annoyance than a life destroying disease. I have done nothing to deserve this, unless you count listening to the best advise the doctors had for me and doing what was suggested by them as "doing something". I don't know how long this will last, and by this time next year we will find out of my decisions worked out.

Lets meet, so you can ooh and aah over my experience.

I have applied for many jobs in the past two months.

I'm starting to think that maybe it's me, not them.

Or it's this blog. Or it's the fact that I use the word "fuck" and have opinions on Twitter.

I'm pretty sure that I don't want to work for an employer who thinks that I would be so unprofessional as to use the word "fuck" in a professional setting or thinks I should stop being a pro-voice, feminist atheist to work for them.

Ah well, I'm sure there is employment out there for me with someone who doesn't know how to work the Google.

"If her DNA was off by one percentage point she'd be a dolphin."

I haven't watched the show much for the past couple of seasons, but I did spend some time tonight watching the series finale of House, MD.

Mostly I will miss having someone who says what I often think on television. House's cynical logic was a breath of fresh air to me.

"I choose to believe that the white light people sometimes see... they're all just chemical reactions that take place when the brain shuts down.... There's no conclusive science. My choice has no practical relevance to my life, I choose the outcome I find more comforting.... I find it more comforting to believe that this isn't simply a test."

Not a whole lot of atheists on US television, and as objectionable as this character's actions could be, Dr. Gregory House was often a voice of reason for those of us who want to confront life, mortality, illness and even grief without god.

So House is "dead". Long live House.

Saturday Night's Alright

My nightclub days are done.

I think I knew this before last night, but it's now really clear.

The place wasn't even close to full, but I couldn't even dance for more than one song before I got too hot to keep moving. After a while all I could do is just sit because it was too hot to move around or even stand.

After a couple of hours I realized I needed to go home because spending my time perched on a bar stool listening to music I wasn't really interested in while being terrified to stand up because I wasn't quite sure if my left leg would hold me up wasn't fun. And if I am going to expend my energy to stay up on a Saturday night, that shit better be FUN. Though it might have been better if the $7 drinks weren't as weak as hell.

So... I am officially Ye Olde Laydee.

If anyone has any suggestions for how I should spend my Saturday nights in the near future, my inbox is open.

Fabulous

I treated myself to a one bit of household fabulousness in honour of my present housewifery.

I BOUGHT A FABULOUS APRON FROM GRAMMA MAY HANDICRAFTS ON etsy.com!

It is well made, sturdy, machine washable (in cold) and can be tumble dried on normal.

It's perfect, matches my household gloves, and looks great with pearls.

"Gramma May" is located in lovely Steveston, BC and she offers local pick-up! At $50, her aprons are a steal.

Mine is in a super cute black with cupcakes print and pink trim and bows. Here's some detail.

If you too have a June Cleaver alter-ego, you need a Gramma May apron. I feel like my life is now closer to complete.

I Got Nuthin'

In my efforts (?) to have some sort of routine that keeps me off the sofa and requires me to get dressed every day I have set a writing schedule. Sometimes I post what's up on my blog and other days I file it away in my notes for my future memoir. (Though the term "memoir" seems a little grandiose given how it is presently structured.)

I went through my notes and there's nothing from them that I feel is interesting enough to share and my life as late has been in the dictionary definition of "uneventful".

Nothing funny has happened.
Nothing ironic.
Nothing exciting, other than a phone interview for a job I really want, has happened.

I have clean laundry and food for dinner.

What do you have?

Roots

When I am unemployed I start hanging out on Ancestry.ca. I've had some breakthroughs with the most difficult side of my tree. (Other than when Miss Smith married Mr. Jones and daughter Jones then married Mr. Brown) Finding out your great-great grandfather probably drank himself to death isn't a great feeling. I have figured out from Google that a cause of death of "phthisis and gastritis" is usually linked to "unrepentant drunkenness".

Figuring out that's why your grandfather never knew his grandfather and why his father never talked about him is sad.

I continue my search for the person I look like.


Today is Mother's Day. I called my mum to thank her for giving birth to me. She said "Oh, you're welcome."

YAY4Mums!

Straddling Worlds

Nicole over at My New Normals said something that felt like a kick in the shins:

I just have to believe that by just having it, it doesn’t diminish who I am.

I think this all the time. It goes something like this:

If I am sick I am worthless.
If I am unable to pull my own weight I am worthless.
If I am incapable of doing it (whatever it is) I am worthless.

So I work extra hard at being normal so you won't notice when I'm not.

I am fortunate that I still "pass" in the abled world. I can walk pretty far. I can still grasp things. My cognitive skills aren't what they used to be, but I'm still pretty sharp. My sense of humour is as black as ever. I do okay.

Sometimes I have to act "as if" I am abled and do things that trick you into thinking I'm okay. I'll make an excuse to stop for something to drink or eat so we can sit down. I'll tell you I'm running a bit late when I really just had a hard time buttoning up my shirt so I switched outfits. I'll leave early just in case where I am going ends up being further than I expected and I might have to stop along the way if I am dressed to warmly.

It's just little stuff that most people never consider, and quite frankly I'm not sure I care if they ever do. Why would you consider the accommodations I have to make to live in a world where people do all the same stuff I do with no accommodation?

That said, I really am doing okay. As long as I can keep steady hours, eat and sleep on a schedule and stay cool I can pretty much do what every single other person in this city can do.

Except walk in a straight line, do up buttons and work a touchscreen with the tips of my fingers.

Thanks for the inspiration, Nicole. I enjoy your new normals.

Battles

I'd like to think that multiple sclerosis doesn't have something personal against me. I hate it, but I'm pretty sure that we're not in a fight with each other. My relationship with MS is not a battle. I will not defeat it, just as it will not defeat me. It's a disease doing what it is programmed to do. To call it a fight or a battle or a struggle against some sort of oppressor is to make MS out to be some kind of third world dictator with a huge sense of entitlement and delusions of grandeur.

If (When) I get sick again it will not be because I didn't fight hard enough or because I did not think positively enough or because I didn't go to Poland for "Liberation" or because I didn't go gluten and fat free or any of the other 15 to 20 other "Cures" that have been presented to me in the past three years.

It will be because I have a disease that is programmed to disable me. To grant it human feelings or actions is to, in my opinion, make light of the seriousness of what MS can do to me.

You can't reason, negotiate or put MS into exile or eject it from the community. Doing what is suggested by my healthcare team and taking the daily injection from Big Pharma is not some kind of moral failing. It's working with the best that science has to offer right now for my level of disease progression.

To personalize it, for me, makes it seem as though I am some how responsible for never getting sick again and if I am left blind or disabled or unable to stay awake it is my own fault that I just didn't *Fight* hard enough.

That is more responsibility than I am willing to take on.

Your mileage may vary.

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!