There are times, like today, where I just don’t even know what to do with myself.
I get these emails from Berklee with job opportunities and things going on and I think to myself, “MY GOD! I BELONG HERE! I WANT TO DO ***THAT***!!!” and then I wake up and smell the armpit and realize that I still haven’t showered in 4 days and that my hair only looks halfway decent because I got it colored professionally today, and that my body decided to crap out on me in the middle of the day today. I did parts 1 and 2 today with a 3 hour nap in between. I can’t keep trying to convince myself to have a normal job.
And then I’m pissed about the National MS Society thing on one hand, and on the other, I get it — they want to protect their jobs and their families. I compassionately understand. It just still makes me angry that rather than wanting to treat what is so obviously a problem, they are trying to not only ignore it, but to stop it from getting treated at all.
If we didn’t have MS to begin with, and they just happened to notice that these people had vein blockage, there would be no debate about treating this condition. We would be taken care of. But because we happen to have MS, they are debating whether or not we ought to have these vein blockages cared for. It’s absolutely inane. There’s no question whether or not it’s good or bad for a human to allow iron to build within the brain. It’s not good. We shouldn’t allow it.
Does it cause MS? Is it THE CAUSE of MS? Maybe. Maybe not. Frankly, I don’t give a shit.
What I *do* care about is this:
1.) Because thus far it’s been shown that something like 90% of the patients with MS who have been scanned have this vein blockage, I am curious to see if I too have this vein blockage.
2.) If I have this vein blockage, I want it unblocked. I don’t give a good goddamn whether or not the National Multiple Sclerosis Society or Neurology Today or someone’s great grandpappy says it’s okay by American medical hooohaw.
If my brain isn’t working properly because it’s not draining blood properly and (1) we can show this on current technology, and (2) it can be FIXED by current technology, there is no convincing reason to leave a problem like this alone, to continue to get worse. It just makes no medical sense.
It doesn’t mean I’m not going to keep taking my MS meds like a good girl. It doesn’t mean I’m not going to still need my Copaxone to heal up the lesion areas or act like mylin.
It means my brain will be able to get blood and get rid of blood properly. If you ask me, it has jack shit to do with multiple sclerosis.
I don’t think I’m being unreasonable about this. If I were, I would hope that someone, like my newly doctor-ed father would tell me.
Readers, what do you think? Am I thinking about this wrong?