Friday, 15 March 2013

In the news - Chris Wright

And on the subject of misconceptions…

ESPN ran this article this week - the first ever NBA player with MS. Awesome! Look, we can be athletes too! [sorry, slight facetiousness there] 
As great as that is, there are a few things in this article that irk me.
Mavs president of basketball operations Donnie Nelson said. "He's a high-character, tough competitor who's had to consistently overcome personal challenges like MS to put himself in this position. The physical obstacles he's had to contend with are significant."
No, just no. MS is not a personal challenge. We don't get to "take on" MS and overcome it. This isn't some tale with a scary dragon and a hero. No doubt he's had to contend with physical obstacles. I can't even imagine how his body is dealing with the incredible heat it must be enduring*. He's in remission. I hope he stays there. If not, I hope he's in the NBA long enough to make enough money to make life with MS a little easier. But to say he has overcome MS is incredibly misleading and naive.
Added coach Rick Carlisle… "It shows determination and an element of resourcefulness, which I think is a very important quality on any NBA team…"
WHAT? He's resourceful because his body went into remission? How about taking some of the pressure off this guy? Holy crap. What happens if he relapses? Is he less resourceful then? Less of an inspiration?
There are other things here that bug me. I find the idea of someone with MS doing something fantastic and being deemed an inspiration condescending. I have a very rich, regular life. I get it, though. Aim for success, regardless of your physical state. Just know that for many with MS, success is getting out of bed, tying shoes, making dinner - really basic stuff. That said, congrats to Chris Wright for making the NBA. 

*Uhthoff's phenomenon, a worsening of neurological symptoms that's a manifestation of heat intolerance, is incredibly common in people with MS. Just try to have a sensible conversation with me after I have a hot shower, blow dry my hair and attempt to use a flat iron. 

And now I can breathe

I just checked the mail and found an envelope from Blue Cross addressed to me. Gulp.

You see, every year I have to have my MS medication, Avonex, approved by insurance. It's a special authorization prescription, meaning every year I have to fill in a form, send it to my neurologist to complete, and then send it on to the insurance company. Then I wait. Fingers crossed. They often reply suggesting I try the provincial prescription system for assistance first, but I don't meet the criteria. You have to be under the poverty line to get assistance. Knowing that, I still have to apply, get rejected (all by MAIL, which can take weeks), and then send proof of that rejection to the insurance company. Then I wait some more because the insurance company also sends verification only by mail. 

Timing this takes precision since I only ever have 4 weeks worth of Avonex at a time.

Blue Cross has said no in the past. [cue the wailing and gnashing of teeth] Paying for Avonex is no small feat. It's ~$1800 for a monthly prescription. I have paid out of pocket in the past and it's not something I'd be able to sustain long term. I suppose if I tried, I'd probably eventually hit the poverty line I'd need to qualify for provincial aid. Is that a silver lining?

So, back to my envelope, I am approved for yet another year. When I read the letter I felt a wave of relief followed by anger. I hate feeling this way every year. Resentment. I hate feeling like I am part of a faceless, nameless system and someone else controls the fate of my health coverage. Someone I never even talk to.

But for now, I am thankful. Another year of peace.

Wednesday, 13 March 2013

Yes. Yes, I can.

I was getting blood drawn today (routine liver check) - unfortunately it's not as fun as getting one's picture drawn, but it's not all that bad - and the nurse struck up an odd little conversation.

There's nothing on my form to suggest I have MS and I've never met her before, but she randomly started telling me how she was in a great mood today because she was told she doesn't have MS. I...wasn't sure what to say. I congratulated her on her good news and she kept talking, telling me how she'd "have died" if it had turned out to be MS (you're gonna die some day anyway, hon). She had been having numb feet with painful pins and needles for weeks and her doc ordered a head MRI. It showed little spots but not lesions (not sure what she meant by that...if they were dilated Virchow-Robin spaces or what), so she got a clean bill of health. The numbness went away on its own.

She told me all this as she drew blood and then turned to me and asked, "Can you imagine being told you have MS? I don't know if I'd even be able to work". I did what felt like the right thing and let it go without opening up about MS. There's a difference between raising awareness or clarifying misconception and making someone feel like an ass.

I'm glad she doesn't have MS. I'm also glad she has great technique because she didn't even have to work to find my thread-like veins. 

I'm not sure what to make of this encounter. There's no moral or lesson here. Just a funny little happenstance. The people that you meet when you're walkin' down the street...