Wednesday, May 26, 2010

World MS Day and things that are apropos of nothing.

(insert sound of one single party blower here)

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

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


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

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

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

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

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

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

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

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

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

Sunday, May 16, 2010

Stuff that matters to me

A List

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

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

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

Tuesday, May 11, 2010


Best. Team. Evar.

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

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

And water-resistant crowns.

Sunday, May 9, 2010


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

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

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

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

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

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

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

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

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



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

This sucks.

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

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

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

That's my brilliant thought of the week.

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

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

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

Wednesday, May 5, 2010

One Week

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

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

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

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

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

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

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

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