November 4, 2010


not a lot has changed since my post
i remain in bed
there is little change
but i got a lotta doctors trying to get me figured out
(good luck with that)

i speak via phone with DR H everyday
some days i can talk, some days i just kinda mumble or grunt
regardless of whatever type of wretched state i am in,
DR H is never, ever at a loss for words
sometimes i think he's slightly ADHD
he's all over the map
jumps from joking
rapidly firing out complex protocals 
with drugs that are anything but your standard, average run of the mill meds
than whhooops, side steps, with a story about rosemary kennedy or picking dandelions, or how his 5 year old bosses him around
he never misses a beat
graham and him tend to have this thing going where either one of them will all of a sudden drop in a kinda random and weird statement in the midst of medical jargon and serious business. i don't know if their trying to one up each other or what, but whatever - i alternate between thinking it's funny to finding it downright annoying.

at any rate, at the end of our last conversation
graham let it slip that we got a puppy
named it after him.
rendered DR H speechless
total silence

i think he was waiting for some punchline

we offered none.
just let the dead air hang awkwardly between all but the buzzing of the long distance line static fillling the nothingness. 
finally he cleared his throat
"uhhhh, okkkkkkaaaaaaaaaaay?"

ha ha
we just sat there at our end of the line basking in his obvious flusteredness.
it's not too often you can catch him off guard
i'm not sure it's ever been done before

 we've phoned in a panic state of mind, when herxing has my body so toxic that we're sure i must be dying. we've called from home, from ERs, from hospital wards, during the day, out of the blue, in the middle of the night.

i've talked to him when i'm balling hysterically, or ranting and raving like a lunatic, he's dealt with me lucid, loco and everything inbetween. i've blubbered on in an in coherent stream of pain, hopelessness and why suicide seemed like a good idea. 
grahams' talked to him in a state of panic, as he's sure that that seizing, barfing twisted heep on the floor that is unrecognizable as his wife may never fully come back to him. we've called him when i'm running fevers, hallucinating and it's felt certain death is imminent.

and he always knows what to say.
until harrison came along
i love that all it took was a 9lb furball to render DR H completely speechless.

of course
this might come back to bite us.
i can't help but wonder if he just sat there staring at the phone wondering if maybe, really, we are really crazy and why in the hek he had just spent 20 minutes trying to convince us otherwise

i dunno
at any rate,
it's been some comic relief in a week that has really been horrific.
apparently, i'm not through it yet.

yesterday, i was finally starting to feel somewhat human again (whatever that really means)
but all my symptoms seemed to be slightly less intense
like my insides weren't burning quite as fiercely as before
my joint pain only hurt real bad if i moved
i was feeling less zombie, 
my brain wasn't feeling quite so trembly and electrical
i wasn't twitching nearly as much
my organ trembling had quieted down to a dull vibration
i could be upright for a bit
i could walk small bits without falling over
then next thing i knew
my brain felt numb again
my chest felt heavy, compressed and full
i felt like i was drowning
the next thing i know i'm barfing my guts out
and my head is feeling all crazy again
my gait is off
i just keep barfing

graham kept describing my barf to me
i don't know why
come to thnk of it that is really weird
maybe he was talking to DR H then and describing it to him
i don't know
i think their was concern that i was barfing up blood

and then my head started hurting
and my fever spiked to 101.3
that numb brain thing came back
i felt so very, very, very tired.

and despite
all these stupid anitconvulsants and anit seizure meds and sleeping narcs
i'm still having trouble sleeping
but you know
i come in and out of it
here one minute
gone the next

anyhow, i can tell i'm looping out now
or maybe really none of any of this makes sense at all
but i'm jsut lying here
wanted to write something
give an update
even though what is there to update when you've been lying in bed for a week straight?

well, that's right, today we're leaving to see DR D in seattle. DR H is sending me to her, so we can figure exactly what is going on.

and what the next step will be.

i know DR H is working on stabilizing me and getting these seizures under control. that is step 1. but step 1 is really a band-aid - as we need to figure out a way to treat what is causing the seizures. bartonella is the number 1 culprit. every single time we've gone after this stupid infection - either agressively or lightly, my brain blows up (that is near literal) soooo, DR H wanted me to see DR D pronto. and between the 2 of them, they're gonna figure out what the next step is.

i hope i'm lucid when i got thru the border.
that could get interesting.

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