NO WORDS

there no words to describe what our last 36 hours have been like.

all i can say is that parker is suffering greatly. 


i want to respect his privacy, yet let folks know enough that they understand the urgency of our request for prayer.

his symptoms and behavior are similar to mine and what i wrote about in my post "shattered". the only real difference is that my episodes were much shorter in duration. last nite, we were up until 3am with him...he slept a few hours on the couch with graham and was up by 9am this morning and his symptoms have not calmed down.


he cannot be left alone. it is very serious. he is experiencing extreme psychiatric symptoms and is in agonizing joint pain. all of this is terrifying. however, we are in touch with our doctors so it is not that we are not dealing with this without medical supervision.  parker is at the 6 week mark of IV treatment. medically, it is well-documented that a patient can have a very extreme herx at this point.


but never, ever could we even fathom that it would be like this. even after what i have gone thru. we knew it could get bad, but this is beyond anything you could ever consider.

there really are no words i can find to articulate what we are trying to live thru right now. 
it is beyond words. 
it is beyond belief. 
it is beyond terrifying. 
it is beyond horrifying.
BUT
it is not beyond HOPE.

all nite, all that kept coming to me was the words (verse) 
"no authority, no power, no principalities shall stand against you"

i knew it totally was not the whole version of the verse and i couldn't remember it but in the chaos, it was not remotely possible to look it up, but i just kept repeating that phrase over and over. now as i sat down to put out this plea for prayer, i thought i need to look up that passage in scripture right now because i need to include it in this post. even if just for my own benefit of reading and writing it and absorbing it.

i had already written all of the above BEFORE i read the passage.
i wept and am weeping as i write this. weeping in joy and adoration and humility of my heavenly father and how He speaks to me and shows me His love even when i don't feel like i can "see" Him in the midst of this hell.


i will praise Him in the midst of this hell. for He is God and He is good. the hand of the Almighty covers us and by His Grace, we hold firm.


please pray for us as we wait and yearn and plead for God to intercede. we know He will. but it is so hard, so painful, so beyond to bear the wait.

²⁵But if we hope for what is still unseen by us, we wait for it with patience and composure.

    ²⁶So too the [Holy] Spirit comes to our aid and bears us up in our weakness; for we do not know what prayer to offer nor how to offer it worthily as we ought, but the Spirit Himself goes to meet our supplication and pleads in our behalf with unspeakable yearnings and groanings too deep for utterance.

³⁰And those whom He thus foreordained, He also called; and those whom He called, He also justified (acquitted, made righteous, putting them into right standing with Himself). And those whom He justified, He also glorified [raising them to a heavenly dignity and condition or state of being].

    ³¹What then shall we say to [all] this? If God is for us, who [can be] against us? [Who can be our foe, if God is on our side?]

    ³²He who did not withhold or spare [even] His own Son but gave Him up for us all, will He not also with Him freely and graciously give us all [other] things?

³⁵Who shall ever separate us from Christ's love? Shall suffering and affliction and tribulation? Or calamity and distress? Or persecution or hunger or destitution or peril or sword?

    ³⁶Even as it is written, For Thy sake we are put to death all the day long; we are regarded and counted as sheep for the slaughter.

    ³⁷Yet amid all these things we are more than conquerors and gain a surpassing victory through Him Who loved us.

    ³⁸For I am persuaded beyond doubt (am sure) that neither death nor life, nor angels nor principalities, nor things^. impending and threatening nor things to come, nor powers,

    ³⁹Nor height nor depth, nor anything else in all creation will be able to separate us from the love of God which is in Christ Jesus our Lord - Romans 8:25-39

A'BARFING WE WILL GO

so yesterday (last thursday) we left for seattle
i rolled out of bed
slapped on a toque
and
a pair of sunglasses
and made my decent down the stairs
that tired me out
and
made me feel unsteady
so i had a seat in the living room
and
then i barfed and barfed and barfed.
thankfully not in the living room
but in the porcelain bowl

i felt absolutely wretched
every bone in my body hurts
i'm running fevers
can't walk straight
and
my brain keeps going numb
and
every time it goes numb
it makes my body do weird things
like scream and shake and rage and sweat and barf
my equilibrium is gone
and
i exist in this numbed out state, traipsing in and out of insanity

and in this state
i find
i must travel to washington state
DR H sending me to DR D
to see if she can shed light

on my ever decreasing capacity to live in reality
and
this barfing that started the day after my hospitalization


the retching is earth shatteringly loud
and the mere prospect of having it happen in public should be deterrent enough
but
my brain has a mind of it's own right now

i made the 30 minute drive to the border without incident
and then, just past customs, i knew it was coming
pull over man, i gotta barf
over the over pass
left on H street
grassy knoll
stop the car
out i roll
and
out it rolls
down to acid know
as i haven't kept anything down since wednesday morning

after christening america

i slept on and off for the remainder of the drive

and

didn't barf again til we got to the hotel

in i went

and

in my haste

i didn't shut the door to the hall

so there i was 

barfing
and
retching
in a frightfully loud and obscene way
echoing off the 4 corners of the barren bathroom

on and on and on, i retched and barfed and retched
and
when i was finally done
graham said,
"oh NAICE! the door wasn't shut"

so, now, in addition to traumatizing my family and my dog all week,
i've now probably traumatized every patron in the entire hotel

what is up with the barfing anyway?

there seems to be no rhyme or reason to why

i have no nausea, no upset stomach
but
just before it starts happening
my brain starts to feel weird, kinda numb-like
i dunno, it's hard to explain
and after ward,
i completely zone out and get that sleepy drugged up feeling
generally, i fall asleep pretty quick after
no matter the time of day
the barfing happens about 4 times a day

DR D is pretty sure that the bartonella infection has just gotten really out of hand with me. DR D's clinical findings are in keeping with what DR H figured was happening. the bart has caused significant inflammation in my brain, neck, kidneys and liver. in addition, i'm running fevers and my lymph nodes in my armpits, chest and neck are swollen and very, very tender. the bartonella infection and subsequent inflammation of it, triggered the seizures which in turn has triggered the barfing.

confused?

i'm not surprised
me too
it's all a little hard to comprehend and i'm a little foggy on the details
but

basically, my brain is pretty messed up
that's obvious
but it's not me, it's bartonella 

i was worried i'd barf during my appt with DR D...but cooperative patient that i am, i made it all the way through it
before
i started retching and barfing.

graham said the sound didn't ricochet too badly through the office walls

after our appt we left for home

graham was starving
poor guy hadn't really had a decent meal since we left for seattle
a sick, barfing wife can put a bit of a damper on eating out
but after DR Ds
i was feeling a bit better
and
a little more stable
and
i was starving too
so we stopped for some food

chipotle mexican grill

cheap, quick and oh so good and so fresh and organic to boot
did i really refer to something organic as cheap?
you bet

highly recommend it
it is delicious

we've gotten other friends hooked on it.

so my spicy, mexican rice bowl remained in my gut
(see what i mean, no rhyme or reason?)

we headed home

i slept on and off

an hour into our drive
we stopped for coffee
i had tea
30 minutes afterward

and i knew
that tea would not stay down

pull over

and

there i am

in the rain

in the gutter

i choose the gutter over a gas station bathroom

it's more private
and cleaner

my retching is so loud and so terrible

and my brain feels really numb during these episodes and i need graham by my side

god bless him for loving me thru THAT.

all of it
this screeching, rethching, overwhelmingly insanity that is our life

so the last placed i barfed was in ferndale

in the back end of an outlet mall parking lot
(gives outlet a whole knew meaning)
i barfed and retched so hard
that i burst the veins in my legs
there i sat
squatting in the gutter
puke pooling on the concrete
tears slipping down my cheeks
reality

episode over
we pulled away
from my vomitous waste
not planning to return. ever.
well, like who would do that? who would want to do that?
you know what's coming next, don't you?
2 minutes down the road,
i bolted upright from reclined position
stomach lurching
panic filling my throat
i squeaked,
"my phone! where's my phone?"

quick search of the car
no phone
and
then we knew, with certain dread
the phone was at THE SPOT
and
so we returned to THE SPOT

the spot was easily identifiable
even in the dark, rainy night
because i had covered up that shadowy vomitous pool with some tissue paper
like a corpse in the street
sigh of relief
as we spotted my phone lying beside it


i guess this admission outs me as a litter bug
i'm sorry bout that
really i am
but
my barf deserved a little dignity
so i had covered it up with a little piece of charmin
yes, it's bad for the environment
but
if there is truth in advertising
than those charmin bears might be grateful for a little free tissue

i made it over the border without incident

and

finally arrived home

to a very hairy, very fluffy, very wiggly, very WET welcome

yup

puppy peed on me within 2 minutes of arriving home
as if barfing on the side of the road all day wasn't bad enough

and that about sums it up

THE NEXT STEP

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
to
rapidly firing out complex protocals 
with drugs that are anything but your standard, average run of the mill meds
and 
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
and
named it after him.
THAT 
rendered DR H speechless
total silence


i think he was waiting for some punchline


we offered none.
and
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
and
said,
"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.
and
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
and
i could be upright for a bit
i could walk small bits without falling over
and 
then next thing i knew
my brain felt numb again
my chest felt heavy, compressed and full
and
i felt like i was drowning
and
the next thing i know i'm barfing my guts out
wretching
wretching
and my head is feeling all crazy again
and 
my gait is off
and
i just keep barfing


and
graham kept describing my barf to me
i don't know why
come to thnk of it that is really weird
or 
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
and 
that numb brain thing came back
and
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
and 
wanted to write something
and
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.