maystone: (Legs under bed by Korin Faught)
[personal profile] maystone
Today is World Lupus Day. In honor of the day, I'm feeling rather crappy, because far be it from me not to celebrate when the occasion calls. I'm also supposed to be wearing purple or orange - which for some reason are the colors associated with Lupus - but it turns out that I own nothing purple and my only piece of orange clothing is a lovely Indian cotton scarf that I drape across my eyes at night and wind under my face so I can drool into it while I sleep. Probably not a good idea for use as out-and-about wear. Still, it is quite lovely.

So. Lupus. You've heard me talk about it. There's nothing much to add, except that I was pinning my hopes on a new drug that was making its way through the FDA trials. Benlysta, at 52 weeks into the trial, was shown to reduce substantially the pain and overwhelming fatigue of Lupus. Huzzah! Then they continued the trial and found that its effectiveness decreased over time, and by 72 weeks it was no more effective than the placebo. Well damn. It may still be approved, and to be honest, I'd take it for a year and be grateful. (Assuming it would be offered in Canada.) I can't remember what it's like not to feel as if I'm pushing through deep water. Every. Day. It's been getting worse, but there's really nothing out there that manages fatigue. By early evening I'm shuffling like a old school zombie, barely managing to lift my feet off the ground. But you know, at least I haven't been hospitalized as so many with Lupus are, so that's a plus.

In non-Lupus goings on, the pregnant alpacas are huge - so huge that they're shambling when they walk. And still none of them will drop a little cria for us like they really, really, really need to do rather quickly, please.

Still no word from Immigration. It's been 17 months since my visa expired; it's been a year since they said everything was OK, and then it all went to hell. I feel trapped and often hopeless. These have not been my best few years here. But everything changes, right? I mean for better or for worse, it's not always going to be the way it is now; I just have to keep breathing and do whatever the hell it is that needs to be done in this ridiculous life of mine. No retreat, baby, no surrender.

Besides, if you don't count the chronic, disabling illness and the non-personhood, things are pretty good. Ha!

So in closing: Lupus sucks but please support increasing research, Immigration can bite me, and please alpacas - have those crias tomorrow!
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