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.

SHATTERED

 

that calm front I've been trying to keep erected forever and ever is gone

shattered

in a million pieces

I’ve shattered

a million pieces

scattered across the floor

I don’t remember much of this past week

there were some warning signs

in the form of physical collapses

stuttering

crying

guttural screaming

shaking

and

shaking

before

finally falling to the floor

I figured I should ask for help

but

help from whom?

who can help anyway?

ask God?

it’s awfully hard to ask for help from someone you are angry at and feel abandoned by.

and

my husband’s overwhelmed

and

my friends have their own problems

and

their own pain

and

they really don’t need to be saddled with a chronically sick deject

I’m blessed by the ones that have stuck around

and

don’t want to burden them anymore than I already have

lest they just quietly drift away

many already have

which doesn't totally surprise me despite the fact it often leaves me wondering why 

maybe I’m seen as a plague, or too needy, too weak or too strong,

or over-dramatic and attention seeking

maybe my pain is too real, too uncomfortable, too all-encompassing

or maybe they think that tragedy is contagious

or maybe some diseases are more valid, more real, more serious and therefore are more deserved of the effort it takes to come together and support.

do you really not know what to say?

or is that what you tell yourself in order to

to excuse yourself from entering into to my suffering?

after all, I never needed you to know what to say

all I needed,

was for you to just hold my hand

and

i never expected you to know what to say,

all i expected

was that you would simply be with me in my pain

your silence has been deafening, your retreat was confusing..

but

what right do I have to clamor for your help, your support anyway?

after all, i'm not the greatest friend around right now

so i count my blessings

focus on what is and not what was or what i wish was

and

i stuff down my neediness and my over inflated expecations

and i soldier on

through THIS

THIS,

THIS,

THIS what?

I don’t even know how to articulate what THIS is

 

THIS HORROR THAT ENCAPSULATES MY LIFE

my every moment of everyday

this endless suffering

my own and my childrens

this endless suffering

from which I cannot escape

not even in sleep

haven’t slept in weeks, probably months

THIS

not getting a break

THIS

endless suffering

THIS

not having a vehicle

THIS requirement that I exist in THIS impossible state of being;

as a sick parent

as a parent of 2 sick kids

as a patient

as a caregiver

as a teacher

as a counselor

as a cheerleader

raw, raw, raw

we can do it team

fake it til you make it

THIS oppressive burden

that I must carry all, 

do all 

and 

be all

and

at all costs, keep hope afloat

after all, they are watching me

they need me to be strong

they need me to cope

they need me to keep the faith

and

I must do this

I have to do it

i cannot fail them

mama’s can’t opt out

they can’t not be fine

and

they must never, ever break

mama’s fine

I have to be

because everyone counts on me

to keep hope afloat

I’m fine

I smile

and pretend I’m not sick

or in pain or that i hurt or that i'm scared

or worried i'm fighting a battle I can never really win

i'm fine, I say, a 100 times a day

maybe one day I’ll actually believe it

mama’s fine

kinda sorta maybe not

not when I see their pain

I can’t turn it off

tune it out

or

make it better

I just absorb it

their pain, their suffering, their anger, their frustration, their hurt, their shattered dreams

I absorb it all

succinctly feel it all

bear it all

and

intrinsically know there is much that they hide and leave unspoken

and

when the verbiage comes, it is in a confusing torrent of contradictory emotions

love me

hold me

leave me

back off

hold on

let go

go away

come back

here's a list of 123 reasons why u suck as a parent

you're the best parent in the world

and 

i bleed under the brunt of their twisted tirades of confusion, anger, frustration and questions.

and

i'm terrified of the abject chaos that decended upon our home, our hearts, our family, our lives, their lives when the natural order of growing up was interrupted by disease. when that "difficult enough under normal circumstances" fight for autonomy and for separation was thwarted by the dependency that occurs when a disease clips your wings at precisely the time in your life when should be set free to fly.

and

this is all new territory 

our family is in uncharted territory precariously tossed to and fro

and no one feels like they belong

or how to get a long or what to be or what to do or what their role is

everywhere I look there is utter devastation

shattered dreams

and

mama can’t make it better

and

they know it

i've given them my best

and it is not enough

never was

never will be

and mama can't protect them

and

they know it

and

i don't know if i can live with that

my secret has been exposed

newsflash

I’m not superwoman

not that I every thought that I was

just hoped that I could pretend long enough to get them through this horror

 

i am pharmacist

I am patient

I am caregiver

I am teacher

I am councilor

I am comedian

I am nurse

I am friend

I am cheerleader

I am a mind reader

I am wife

I am mother

but superwoman, i am not.

so i just soldier on.

Do more be more
Stay strong don't break

soldier on

thru the pain and exhaustion and illness, and darkness.

gotta keep hope afloat

soldier on

through the weariness, the loneliness, the nothingness

soldier on til you collapse

into an inarticulate stuttering, sweaty heap of exhausted lunacy

traumatize the kids

make your apologies

pull yourself  up

dust yourself off

and soldier on

and keep pretending that you’re fine

accept that you're no superwoman

but

soldier on anyway.

I am strong. 

I can cope. 

I am fine.

soldier on

and

march

your ‘fineness’ right past the point of no return.
the third time was the charm

cumulative effect of running on empty, no relief, no respite, utter exhaustion and  being hit hard with a herx

at least the little ones weren’t home

I don’t remember much

but

I know I went nuts

how it all happened

the order with which it occurred is unclear

only that I found myself on the floor

making these god awful inhuman sounds

guttural shrieking

and

grief sobbing

then

blessed blankness

until

I saw the broken dishes

felt the yogurt in my hair

and

then they were there

the cops

the paramedics

and I was cowered in a corner

a puddle of tears curving out from under my knee

snot pouring out of my nose

and

I figured that I must look crazy

and

I really didn’t care

I am crazy

take me away

lock me up

and throw away the key

my family would be better off without me 

please make it stop

please

please

please let me sleep

give me something to make me sleep

is it so terribly wrong to pray for permanent relief?

I’m shattered

can’t you hear the thousand shards of me tinkling across the floor

somehow, from somewhere, in the midst of the wreckage

they call out to me

in their broken, beyond repair despair

I can still hear their melody of hope playing.

you’re fine

you’ll be okay

but I just don’t know if I care enough to listen anymore

I’m just too tired of fighting this beast in my brain.

i just can't soldier on anymore

this beast has left me shattered

but

apparently, according to the psychiatrists,  I’m not crazy.

both the non-lyme docs and my lyme doc agree.

I’m not nuts, depressed, bipolar or psychotic.

oh really?

personally, I happen to disagree.

are you trying to play mind games with me?

for years, non-lyme docs have been trying to boil down my complicated medical picture to some sort of depression.

and I’ve been telling them no.

I’m not depressed. I’m not nuts.

I have an infection.

and now

I’m telling them I am nuts

and

they don’t believe me.

nope,

I’m not nuts.

I’m having seizures. the seizures are crazy. but I am not. and they’re being triggered by

that infection in your brain– you know, “that infection” that they still won’t acknowledge I have.

and that

is enough to make anyone nuts.

just sayin’

and if none of this makes sense

or some of it sounds nuts

i wouldn't be surprised

i'm doped up on all sorts of meds.

anti convulsants

anti seizure

pain meds

it's a whole wack of fun. i'm home from the hospital now. cooped up in my room. can't walk straight. sometimes i laugh. sometimes i cry. sometimes i feel normal. most often i don't. DR H keeps calling to check in on me. sometimes i can talk. sometimes i can't. but he just keeps right on talking and he keeps making really bad jokes. somebody get that doc some new material. at any rate, he hasn't given up on me. apparently, i'm not beyond repair. i don't believe him. and i told him that. and he told me he doesn't care what i think...he doesn't listen to crazy people anyway. ha ha.

and did you know that thing 1 and thing 2 came by for a visit last nite? 

and johnny canuck and michael jackson showed up to.

at least i'm not alone in my insanity

STOP IT ALREADY!

STOP!
THIS POST CONTAINS GRAPHIC IMAGES OF BLOOD. 
 i like gross things but recognize that not everyone shares my affinity for all things gross. so i'm giving you fair warning.if you are not particular to blood, or if the site of it makes you queasy, woozy or faint you should just stop here and

 

PRAY!

pray for parker's PICC, raymond.

he's bleeding a lot. and we need him to STOP IT ALREADY!

we've been battling with raymond, parker's picc for the past 10 days. seems he's decided to misbehave.

he's bleeding. a lot. a picc dressing is changed once a week. so far we've got 6 under our belt in the past 10 days. pretty much had to have a nurse here every 2nd day. some days it's been twice in a day. he just won't stop bleeding. and we're not sure why and this has become a real (additional) source of stress.

raymond is nearly 4 weeks old. he should be well on his way to adult hood by now - meaning the incision site should be nearly healed by now. why now he has begun to bleed so much, no one knows. yes, PICC's can do this - but generally just in the first week or two after surgery. this is not characteristic behavior for raymond. in fact, he only bled minimally post-operative. i was surprised at how little blood there was. and relieved. now he's making up for lost time maybe. whatever the cause it is very disconcerting and worrisome.

it's not so much the bleeding itself that is the real problem right now. it is the problems that it can cause. a warm moist environment under the inclusive dressing is a breeding ground for bacteria - the bacteria can travel up the line or into the line and cause a blood stream infection. which is not something to mess with at all. any wetness under the sterile dressing also can cause skin irritation which, in turn, can lead to infection.

parker now has the start of an infection.

big sore just above purple 'wing' - multiple smaller ones above that

last wednesday, (on visit #3 of the week), both the nurse and i noticed that his skin was starting to look irritated and a bit rashy. 2 days later, raymond had bled out again and required another dressing change. in those 2 days, parker's skin was now raw and weeping a bit. initially, it seemed that it was just in the area that is covered by the stat lock. so we decided to leave the stat lock off in hopes that this would give his arm a bit of breathing space and keep the skin from further deteriorating.

white stat lock

the purpose of a stat lock is to hold the PICC line securely in place. the PICC line can begin to slide out of the incision in the arm, especially if the body is rejecting it. the shape of the stat lock reminds me of a soother...and it is very much like a security device for raymond and it's use brings comfort and peace of mind to parker. the nurse replaced the stat lock with steri strips. steri strips serve the same purpose as a stat lock in that they secure it in place however the lock is just a better, more secure choice to use on a child. parker had incredible anxiety over losing the stat lock. my PICC is secured (and has always been) secured with the steri strips. i explained that to parker and the nurse tried to reassure him that they would be just as good as the stat. but he was still very much upset that we had to take raymond's soother away from him.




the nurse was here again monday morning as he bled out already since it was changed on sunday (which was visit #6). the rash on his arm has not improved and unfortunately has gotten worse..should it not improve over the next couple days than the nurse will have to take off the inclusive dressing and just use a guaze wrapping around the site. that is so far from ideal, especially with a kid and puts him at a much higher risk for infection.

right now, the worst part for parker, is that the dressing changes really, really hurt. he still has the standard post-operative tenderness but now he is also having to undergo dressing changes every 2 days. the cleaning solutions sting. they get inside his incision and irritate little nerve endings. these continue to sting for several hours after the dressing is complete. i HATE that he has to keep enduring these every other day. i know how tender and sore it is for him. he is so tough and so brave but this whole drama is just plain upsetting.

all bloody again just 3 hours after a dressing change

graham and i are trying to present a calm front but it is hard to do. this PICC drama is a constant source of concern. we're worried that he'll end up losing the line. this would mean another trip to SF. another PICC surgery to undergo. more bills to pay. or far more worse than any of that, is that he could acquire a major infection. we are grateful for the excellent care he is receiving from his home care nurses. we know that we can call them at any time. and he is being closely monitored for signs of that. his arm is not swollen. he is not running a fever. and his IV meds are being administered with no problem. that is all reassuring. as well, i have a friend who is an IV educator/nurse and she has graciously been taking our phone calls, answering our questions and pretty much been talking us down at all hours of the night. more than once, she has peeled me off the ceiling. thank you, you know who you are. :)

however, the cause of the bleeding is still undetermined and we wish we knew why or what was causing it. on top of everything, the not knowing part of this is a hard place to be.

we were in more than just a bit of a panic on sunday nite - so we called DR H's cell and left a message. he is away at a conference until tomorrow however his nurse practitioner quickly returned our call. she will be getting in touch with the surgeon to see if he can provide any insight. as well, she wanted blood work done. parker's red blood cells can be greatly impacted by his babesia infection. the excessive bleeding would make sense than if his babesia is out of control again. thankfully, parker's canadian doctor was able to phone in a requisition to the lab yesterday. we'll get the results of them when we see the doc tomorrow.

both graham and i are trying to present a calm front but this is all very stressful and upsetting. and it is just all too much for parker. he broke down the other nite. being horrendously ill, having a picc line, dosing with iv meds everyday and enduring painful dressing changes is a lot for anyone to cope with. let alone a 10 year old. on top of it all, he began herxing sunday nite. really bad. he's nearly at the 4 week mark of IV, so we knew to expect it however expecting it and living thru it are 2 entirely separate things. the first sign of it began with a migraine. than his never ending joint pain went from bad to excruciating. all accompanied by bouts of shortness of breath, chest pain, back pain. there were periods of time where he wasn't even able to speak. it is horrendous to live thru. i know, i've been where he is. i can't even begin to explain how horrendous it is to watch your child endure that. it nearly ripped my heart out. i'd gladly bear it for him. i just want it to STOP!

we all just want it to STOP ALREADY!
and
we all just want raymond to behave himself and STOP IT ALREADY!

we've all had enough.
please pray for us.