BEYOND EXHAUSTION

we are still in the thick of it with parker
there has only been a miniscule lessening in his psychiatric and physical condition.
we have been on the phone constantly with DR H, DR D's nurse and my previous LLMD, DR M. parker is experiencing a major die off (herx) of both the borrelia (lyme bacteria) and babesia. his body is not able to keep up and effectively detox the heavy load of toxins circulating through his system, as a result he is very neurotoxic. a treatment plan is in place to control his symptoms and detox plan is in place to try and clear the toxins from his system. DR H felt he should be feeling a lot better within a week.

we hope that we will see response much, much sooner as we are absolutely beyond exhausted.
we are getting little sleep or rest. graham or myself needs to be with him constantly. taylor has also stepped in and filled in as a caretaker too. he has been an awesome support and amazing help to us. even still, there is little respite and we are all beyond exhausted. drained. physically and mentally. i am running on adrenaline and while my seizures are being controlled with meds now, the barfing that they triggered, is continuing. i have kept little down since last tuesday.

we know people are praying. thank you to those of you that let us know you are. that knowledge brings us much comfort. thank you also to the folks who have helped out in practical ways too. we are so very grateful to have your help in easing our burdens.

pls continue to pray. what we are going thru is really beyond description. we really don't feel like we can bear the unbearable much longer
and 
we really want our sparky boy back. 

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