tuesday

dreaming of release
maybe it’s just tuesday, but i’m feeling better. maybe it’s the new cpap mask. who knows.

my sister reported that her s-tap proved that she does in fact, have ms. she asked for advice for when she meets with her neuro to discuss treatment, and i tried to hold my cynicism in check. i don’t have much faith in the CRABs, even tho i use rebif. i suggested she ask about alternative treatments, if only to get a sense of where this neuro stands on that sort of thing. and to educate herself before talking to him/her. it can be an overwhelming experience – the first time it really becomes real, when you have to start thinking in practical terms about it – “i really have ms, and i’ll have it for the rest of my life. how do i reconfigure my life around it?” tough stuff.

i’m working on a new photographic project (see the image above) that i can see in my head, and i’m working with photoshop to make images that look like what i see in my head. it’s exciting, and i’m really having fun with it. thinking about finding other photographers with ms in southern maine to put together some sort of show. it must be spring if my little brain is coming unstuck.

and any time i think my life is hard, i check in with bagdhad burning. this is a blog written by a young woman living in bagdhad, writing about what life is really like. she doesn’t post very often, but it is a real eye opener.

gray and chilly today, and all this week. hi ho!

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One thought on “tuesday

  1. My new neuro at first made me feel like I’m not being a team player by not getting on the crab band wagon. But now there’s the “watchful waiting” strategy for those of us with a benign type. Not that it’s really benign, just really slow moving. I’m knocking on wood as I write this. Last time I saw him he had me do the evoked thingys and said “see you next year, unless you have any changes”. For the neuro it’s like there’s not much in it for them if you don’t take a crab! Your sister will do what is best for her. If I were 20 I probably would jump on those crab treatments. I’m sure age makes a difference in my response.

    I like the pictures. The one on top of this post is very Magritte like, but using cables instead of clouds. I can relate!

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