Friday, November 16, 2012


Day 3 on mon-steroids. I rage, I cry, I struggle... I look different, I sound different, I act different.  A protruding vein on my forehead? WTF is that? I think my eyes may be pulsing like in this pic. I feel so unreal... so unME, like there's someone... pacing around in the cage of my body... fingers gripping the bars of my ribcage and peering out.. snarling and snapping... but also mourning her inability to articulate her pain. At least unable to say it in a way that she is really.truly.heard... except by the closest partners on this journey. Mournful that it seems to be of no consequence to the medical folks that I carry big-big pain My circle of support is wonderful, they understand, they want to help... but they don't know what to do to make it go away any more than I do. Of course they DO help... every single day... in little ways and big ways... their presence physically - spiritually keeps me putting one foot in front of the other. They keep me buoyant as much as I am able to be... without them... it woulda been game over a long time ago. My spirits... are sinking.

So please... can anyone tell me why it is okay to carry this... why is this not important enough to be an action item for the medical people? Its all so maddening and futile... the MS stuff is urgent and treatment-worthy... granted, but why not this fucking pain? Its like a crew of busy little housekeepers tidying and dusting and vacuuming and spit-polishing... all around a steaming pile of shit in the middle of the room... but not even trying to clean up THAT hot mess...

Anyone... help me understand?

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