i know i haven't updated properly in awhile
i'm having a tough time holding onto my reality
let alone the page

it took awhile to sort out the proper balance of medications
so i have drifted
floated
existed
hidden by the haze

to me there is no greater frustration then not being able to communicate
these last few days
i have slipped beneath the surface
bobbing in and out of awareness
suddenly unsure
needing so desperately needing
to lay my head upon their shoulders
hear another heart beat
find an external constant
and hold on

too many days have started chipper
proclaiming, "this is going to be a good day"
speak too soon
by noon i am struggling to make decisions
side effects from
nausea.....endure the nausea or take the gravol?
gravol......can't focus, sleepy, no longer able to speak, loss of control
itchiness....scratch like a mad-women, leading to scrapes and cuts and welts or take IV benedryl?
benedryl before meds.... dis-engaged, high emotions, slow on the uptake
with all of these cocktails being swirled, shaken, stirred
is there room enough for me?

my friends and family hold on
physically wrapping my body with theirs
but when its coming from the inside
their barriers offer little protection.

i have been staring at this empty screen for days
not sure of what to say
is this writer's block?
wait
if this is writer's block
does that mean i'm a writer?
that's funny
i feel like i fell into this
i never meant for all this to happen
'writer' was never one of my 'what i'm going to be when i grow up'
this blog was always a means to an end
a place to rant about the gross details of having cf
mucous, nebulizers and pills... oh my!
to meet others who 'get it'
find some common ground
ask questions about the details of living with CF that the doctors could never answer
will a G-tube feed affect my sex life?
does an ERCP hurt?
how to suppress a cough onstage?
i started typing
found the LJ CF community
introduced myself, asked for friends
cracked open the door of my heart
and a bunch of you swung that door right open
marched in
set up camp for the long haul

this journal became friendships
a little unconventional perhaps
but real, deep-rooted friendships
we share love, laughs, tears and a similar genetic default

*****EDIT****** Sorry guys!! Didn't mean to mark it private....it's public now!!!

Hey guys, this is Justin posting on Eva's behalf.

She wants to let you know that she is slowly feeling better.

Her wall of love is growing & the mail continues to be the highlight of her day.

She wants to post, but her internet stick has stopped working & we're looking into fixing it as we speak.

She gave me a big hug last night & so I'm passing it onto you.
much love,

Justin

To explain....my dad wrote this last saturday afternoon as we worked on the wall of love together. We ran out of time to post it as my mum arrived with pizza for dinner. I still had to upload the photos, put them on photobucket and paste the attachments here. Sorry for the delay!









( Click here to read more updates written by my Dad and for some lovely photos of the Wall of Love!! )

i had high hopes for an easier day
started the morning with clarity

but it was not to be
the fog of confusion descended
its tendril wrapping my head in cotton
words were only noises
voices so far away
attempting to participate hurts my head
a throbbing head ache
pain shooting down my back
but i refuse to take any more pain medication
i'm convinced they are the reason i can no longer communicate
and who am i if not a voice?
what is my life without human interaction?

cyrus came to do chatting
and all i could do was apologize repeatedly
hiding in the crook of hunters arm

then there is not much to do but wait
shiver
shake
twitch
cry
hold me

hunter and kim work hard at getting food in my stomach
and eventually
hours later
i lift my head
take note of my surroundings
and don't instantly feel overwhelmed

as the day progresses so do i
the moment quinn wraps her arms around me i feel better
safer
i don't have to explain anything to her
i swear she can read my mind

excitement level in the room intensifies
mark and nimisha have returned with tales of a world i find hard to fathom
i am so glad to have one of my greatest confidantes returned home
i want to live vicariously through her
see the world
push its boundaries
question the rules
put it all on the line

beth and justin in the evening
almost back to normal
but left with a bad taste in my mouth
bitter towards the thing that was supposed to make it better
a hard pill to swallow

this fear
nipping at my ankles
leaves me breathless
i need help now to even get to the washroom

i had high hopes for yesterday
they were not meant to be

this simply means that i have high hopes yet again for today
the view out my window is phenomenal
beth curled around my feet
sleeping as i type
today will be better
a good day
a me day

dark blue city glimmers with orange lights
there is no sunrise to be seen today
hidden in the mist and fog

today is going to be a better day
i can feel it already

i've never felt that weak before

the last few days
unable to make even the smallest decisions
couldn't handle loud noises
a child
needing to be held
tended to
protected

i was handed from one to the next
like a newborn is carefully passed around a room
'support her neck', 'gentle'
justin to quinn to rachel to beth to mum to dad and back to rachel who stayed the night

there is a magical level of intimacy involved in sleeping
our guards are dropped
innocence restored
i'm watching rachel in the glow of the grey clouds hovering above the mountains
her face like porcelain
her chest rises and falls
rises and falls
rises and falls

waves of clarity
tidal pools attempting to retain that sense of self
eddies swirling with confusion
then the rocks exposed
naked vulnerable
as the ocean prepares to come crashing down again


i slept
i closed my eyes
and despite my twitching limbs
my racing pulse
my stabbing shoulder
after four days of fearing sleep
not able to let myself go
scared to be alone
what if i don't wake up
i slept

and the next day the world was a little softer
with rounded edges
less harsh
i still couldn't look in a mirror
but i recognized my hands
they follow my direction

but still yesterday morning
there were episodes
of being lost and overwhelmed
quinn on one side
rachel on the other
justin across from me
no judgement
please please don't judge me
and they didn't
they allowed me to pepper their conversation with irrelevant anecdotes
smiling with me
letting me burrow into the softness of their skin when words were too much

the afternoon was spent with my dad
with my dad and all of you really
he brought the mail
i couldn't read
so he did it for me
through his voice i received all of your kind, uplifting, endearing, hopeful words
it was the loveliest time i've had in quite awhile
we delighted in the drawings, poems and stories
in awe of your artistry
each word you sent
savoured
held on my tongue for a few extra seconds
before swallowing it whole
allowing your words to fill up my empty shell
giving me strength to stretch out of recovery position

i was well enough to visit with some friends and family
they each arrived bearing greetings from the outside world
a mug of tea
my favourite fruit juice bears and almond butter crunch
air hugs across the room
when being present becomes too much
i retreat under my fathers arm
cuddle into his side and close my eyes

in the evening
while everyone else had saturday nights
i spent time in a familiar place
greg brought dinner and we had a malaysian picnic sitting cross legged on my hospital bed
together we remembered countless nights, months, years
making the hospital normal
CF had always been the third wheel to our relationship
for four years we did 'hospital dating' well
we were so young
it put us into situations that made us wise beyond our years
but there were benefits too
instead of simply co-existing in similar social circles
we were isolated in a 10 by 10 foot room
conversation our regular past time
and we talked
sober
we dreamed and shared and defended and explored

we broke up a year ago

and after the dust has cleared
we've both grown, learned, changed

underneath it all
he gets it
he asked last night to be part of my team again
a different role this time to be sure
but in the inner circle
one of the ones thats called when things get tough
one of the ones thats allowed to see me at my weakest
bring a spoon to my lips
help me put my socks on
i graciously accepted
honoured that he still wants to help
even after all we went through last time
adding him to the team doesn't detract from anyone else
there is no finite amount of help or love needed
it is infinite
infinite
infinite
i need all the help i can get

justin arrived and greg left

my dad once told me that although the men i've loved in my life are so different from each other there is one common theme. they are all good people. good, good people.


the sun is rising now so i'm going to go and crawl back into bed with justin and get a good cuddle before the nurse arrives to do vitals.















and i leave you with the north facing view of the sun rising in the east

heart slowing
toes brush the ground
not even close to stable
but a dim light amid the fog

if you contacted me in the last 12 hours
i won't recall
it doesn't count

my skin paper thin
salt water reduced the membrane to translucent

my eyes feel watery and small
are they still brown?
or a murkish grey
swirled with runoff from the hills

yes
as if a storm has run me through
my basics intact
strong foundation
bricks still standing
but the insides
steeped in mud
wind torn

i am cold
shivering

huddled in the recovery position

if it was possible to lose touch more
inhale less
stumble more
fall down harder
i did it

spinning numb melting fuzz
disengaged
choking sobbing wrenching
lose lose lose control
this is the way the mulberry ends
blinded by salty eyes
brine spilling over cheeks
ocean crusted tracks
salt barriers
leading to sea

i cannot see

lost lost lost
too many pills
tried to fix what wasn't broken
no longer in control
wait it out
wait wait wait
i float away
bring me back!

my friends need re-feuling
batteries charging
mama steps in
i've forgotten what round we're on
no longer the heavyweight champion
i am tossed
bruised
beaten
worse for wear
this has to get better
it has to
just hold on
gulp
sob
choke

it's 3:48 in the morning
i am lost
i don't belong anywhere
outside the city never sleeps
midnight movements gliding under dim orange circles like....
...my mind cannot even hold simile
metaphors lost
i'm surprised i can type
my hands shake
my body quivers
not from cold
not from hunger
not from pain

from confusion
i feel lost
wandering
i catch myself answering people out loud
oops
my friends are patient
but how balanced is the patient?
they don't laugh at me
they cuddle me up
they hug me and hold me and try to remember who i am when i can't.

but i am CONFUSED.
its all so exhausting.




i am sitting up in my pitch black room
tiny green, blue, orange, yellow lights flashing at different intervals around this space
quinn's sleeping face is ghostly lit from the monitor of my computer screen.
she is beautiful. she looks so calm.
i feel a sense of relief washing over me.
quinn is here
i am not alone
quinn is here
and when she is not here?
someone else will be here.
muddled as i am
they promised i wouldn't be alone
this makes me less scared

shadows are playing tricks on me
my stomach is flipping
nauseau creeping up my throat
spastic energy courses from my right shoulder down my leg
and then my feet are tingling
where should i go?

i'll ring the nurse (my fav)

see if she has answers
if not i'll cuddle back into quinns side
steal some of her warmth
and try to stay still till the sky melts into grey.

no sleep
three nights now and no sleep
i feel crazed
the pain has me writhing
collapsing into myself























these past 72 hours has been a blur of needles, nebulizers and handfulls of pills
in the last 24 hours i have had 6 IV's
6 digging, searching, searing IV's
my veins playing tricks
running
hiding
tomorrow i get a PIC
we had to wait for a lower white blood cell count
and so for today the only vein that did not run away
is in my thumb
thumbs up for patient nurses!



















the only thing holding me to the present time
are the arms of my friends and brother

between hunter, quinn, rachel, beth and justin
they tether me down
arms interlocking
hands grasped
physically curling their bodies around mine
distracting me
they sing show tunes, read the newspaper aloud
repeat the comments left on my LJ again and again
they massage my back
rub moisturizer into my hands and feet
anything to take me away from the pain
it has been a team effort

for the first time hunter is sleeping here with me tonight
to chase away the nightmares
and hold me when the tears won't stop
because so far the only sleep i've had
was this afternoon
my girls on either side of me
trying to keep my safe
hospital beds aren't made big enough for three
but we squish
mashed, tangled and wrapped with love

i know i usually say no news is good news
but this time it isn't

spit it out spit it out
i'm in hospital
back in VGH again

i don't want to be here
i was so enjoying my newfound freedom
my dinners out
my adventures with my brother
rain-filled walks (or rolls rather) dressed up in gore-tex
waffles and bacon
cuddles and laughs

strange isn't it
last time i didn't want to go home
and now i don't want to be here
i guess change is the thing i don't like
i was comfortable at home
well
not lately
the reason i'm in...

nights spent coughing
endless spasms
relentless quakes
shaking my body
no rest for the weary
the taste of infection thick on my tongue
then comes the pain
white hot searing my shoulder
stabbing with every breath
referred pain from my laboured diaphragm
muscles aching
from no use to overuse
in two sleepless nights
the top of my world to the bottom
a hairline fracture balanced on 15% FEV
doesn't take much

i am so lucky though
my team is amazing
i called this morning
they could hear the pain in my voice
bypassed emerg and admitting
arrived straight to a room waiting
x-rays took less then 5 minutes
i am all tucked up
the first dose of pain meds are slowly dulling the edge
antibiotics are on the way
my list of cocktails are running thin
these bugs are relentless
pseudemonous resistent to the usual medley
we'll see what the lab can cook up for me this time

i'm sorry i didn't write earlier
please know that i am aware
sometimes its hard to find the words
sometimes the pain is too much to turn on the computer
sometimes i need the real live arms of my mother to brush away my tears more then i need to update my journal
sometimes i don't know what is happening and therefor find it difficult to tell you
this week has been difficult
trying to figure out where the line was
how much i could stand at home before i knew i needed to admit that the hospital was where i needed to be

i already miss my wall of love
these walls are stark and bare and white
i did't realize just how much love your wall gave me until i'm no longer surrounded by it
the letters are dwindling
they haven't stopped
for the last 2 weeks i have received 1-2 letters a day and they still make me so happy
i think my mom is scared for the day when no letters at all arrive
if you would like to help me build up a wall here in the hospital please oh please
send me mail! send me a postcard or letter or photo or note or drawing!
please don't send gifts. i am not in need of anything at all. i don't have room to put things and don't need anything at all except for your beautiful words and art for my wall of love. now that i am back into my forced stillness i will have time to document this wall of love from the very beginning. with my lovely brand new macbook and the wireless internet (donated by a stranger last time i was in.....to the man who gave me this wireless rogers stick, i don't think you understand how truly unbelievable that gift was. life changing! without this connection to the world I would be lost. you've saved me.) i will photo and document the growing love on my hospital wall. if you would like to send me some love for my blank canvas the address is

Eva Markvoort
217 Third Avenue
New Westminster
BC, Canada
V3L 1L9

my family will make sure the letters reach me in the hospital.
i will try my best to stay in touch more now that i am in.

no news is good news
i guess
clinic?
still need a transplant
surprise surprise
still have cf
please ignore the sarcasm
its said with a hint of a smile i promise

mum is a trooper
we wheeled and dealed
for those that asked
clinic is comprised of...

bloodwork
chest x-ray
sputum sample
pulmonary function tests
height and weight
dietician
clinic nurse
doctor
pick up prescriptions

every time i go
i think how lucky i am to have such a fabulous team
i treat each visit as a social occasion
waves and smiles big hellos
makes it feel like home
full of people who care about me

sent away my mucous we'll see what grows before starting any treatment
afternoon full of errands
rested in the evening
thought it was going to be a slow night
but at the last minute...plans!
and i felt well enough to go
dad was lovely and went out of his way to drive me into town
met with friends for a lovely thai dinner
got all dressed up
such fun
this is what i miss the most
the spontenaiety of youth
picking up and going
so when i can i like to take advantage
smiles
laughs
conversation
and the one i like to call my own
about to be tucked in


i am a lucky girl indeed.

i am feeling rather stuffed up.
it is getting harder to breathe.
its starting to feel like cf again
mucous rattling away
tiny motors in my airways
purring snorting shaking
i am sniffling
snorting
sneezing

thank goodness i have clinic tomorrow
maybe they'll have an answer
a remedy
prescription
other then...
"well you really need another transplant"

yes, yes i do.

i stayed in bed all day yesterday.
today hunter and i venture out into the city.
tra-la-la
let's see how far we get!

and now to show you one of my tricks...
one of the main reasons i am very happy to be a girl.
when i feel awful and look terrible
a dap of colour here
a swipe of mascara there
lipgloss and voila!

i can fool the world




muahahahahahahaha

On new years eve we hosted a murder mystery dinner party that was set in the 60's. Wanted to share some of the fabulous photos and costumes from the evening!










( Click here to see more photos from our wacky, silly New Years Eve!!! )

"Anyone can slay a dragon, he told me,
but try waking up every morning
and loving the world
all over again.

That's what takes a real hero."

-Brian Andreas

there are moments when i can step back from myself
evaluate
and realize that i am so blissfully happy
so full of love and sheer goodness
the good times far outweighing the bad these days
days filled with family and friends
with true love
loud moments
laughter, tons of people, exclamations
quiet moments
tender looks and physical closeness
but then i remember
what is happening
what could happen at any moment
and i am blinded by terror
terrified
of losing it all

the more i have
the more i have to lose

this morning i sat across from my boy
tucking into my vision of the perfect meal
waffles and maple bacon
raspberries and a milky latte
and i could feel how happy i was
oozing out of my pores
so content
having spent the morning all cuddled up
learning and sharing and general loving
knowing the day was to be spent with my girls quinn and ming
visiting our good friend ethan
feeling safe my parents on their way to pick me up
having plans with rachel the next day
so content that i felt like i radiated warmth
and then
out of nowhere
the fear
the panic
that at that moment the very thing i have spent so long wishing for
my pager
could go off
and all this
poof
vanish
me
gone
done

its so strange to feel so opposed about one single thing
this one thing
that could be
that will be
the beginning of my life
the third chance
a deep breath
the real hope that i live off of
but
also
somewhere deep down
is the knowledge
that i might not make it through surgery
and it could all end there

and i can be brave and say i'm not afraid
that death doesn't scare me
that i am firm in my belief
that i am and will always be a part of life
that this body doesn't contain the love i am apart of

but thats not the whole truth
truth is more than that
i can believe in love
and know that this will work for me
and that i will make it and live

and also acknowledge that i get scared
just a little bit
every once in awhile

there is more than 100%
i can believe i will 100%
and still be afraid on top of that
mathematicians may disagree with me
but i don't believe in the finite
infinity interests me more

and sometimes when i am highest
on the top of the mountain
feeling the wind rushing through my hair
the sun on my face
is when i open my eyes and realize
i am standing on the edge of a cliff
the jagged points far below
barely keeping balance

the higher i am
the greater there is to fall

sometimes i question
what is better?
to live down there in the dark among the shadows?
never exposing myself to light and bright happy days?
i remember then
to just be where i am
this is my reality
the present is what is real
and to exist in these moments
allow myself to get scared
let it out
then step forward and continue on

so this morning
this perfect morning
i let the tears fall down my cheeks
i tried to fight them back
but he knew better
without saying anything he got out of his seat
held my face against his chest
let me cry and share my thoughts

"sometimes when i'm happiest, is when i feel like i have the most to lose....and....right now? this feels like a lot to lose"
his reply
"well that just means we have a lot to fight for. and we will. and when we have this for good? think how amazing that will be."
then he kissed my tear stained cheeks
i wiped my eyes
and we finished breakfast.

i had the loveliest of days today. didn't sleep much last night (thank you prednisone) so hunter had trouble waking me up this morning. he made me my daily cup of tea and let the sunshine in. turned the music up and prepared my breakfast. washed my hair in the sink and even learned how to give a proper blow-dry. yes, my 20 year old brother knows how to use a blow dryer! he tidied up my room and helped me organize my mail, hanging more stamps beside my bed (i cut them all out and staple them to ribbons). quinn and ming arrived and hunter made us all a lovely lunch. have i mentioned my brother is awesome?

i also just feel the need to share my love for my friends.
serious, amazing giggle-filled love.

we had our triangle christmas together.
quinn and ming and i call ourselves the triangle because the house we lived in together for 2 years was in the shape of a triangle. it was the 3rd and 4th floor of an old house. quinn and mings rooms were beside each other on the 3rd floor and my room was above them both with the peak in the middle sloping down on both sides, you could only stand up in the middle of my room. hence the triangle.

triangle christmas was amazing.
i gave both the girls their own versions of my signature charm necklace. tiny little squares of silver that i filled with pictures of us and the words 'triangle' on one side and 'love' on the other. plus a unique charm for each.
they gave me beautiful photos that ming took at shambahla with her old manual camera, blown up and framed. i will take pictures of them and share them with you tomorrow.
ming gave quinn a beautiful old locket that is as old as the ancient apartment building they live in now.
quinn gave ming an 'i believe in you!' present of black and white film for her photo projects, a moleskin to record all her new plans and a beginners guide to french to encourage her dream of moving to montreal.
but even better then all that was just a day of laughing. when we did our years review at denny's last week i felt like i couldn't even remember past september and all i could recall was the sorrow i felt. i couldn't remember the good times. i knew they were there but i couldn't seem to see them. i looked at my friends and all i could think was...'we survived...barely.. if this is living...'
but today? today i could only seem to remember the happiest moments with these girls.

living in the triangle.
never alone.
always someone to cuddle up with
watch bad tv
tell about your day
or whose outfit on facebook is hideous
always another closet to raid
to tell you which shade of red lipstick looks better
just having 2 people who knew every instant of my life so much so that when we talked around other people we didn't make sense, just random thoughts connected by previous conversations and experiences, no explanation necessary.
dancing topless in the kitchen
bathroom photo shoots
boxes of wine
a trunk full of costumes
morning texts leading to a pile up in one persons bed
not getting out of bed til noon
2 o'clock breakfasts at zen
sushi adventures
but most of all
the conversations
about everything
figuring out where we stood in the world
what we believed in
opinions
trying them on for size
challenging each other
supporting
loving
and laughing
oh the laughter


fits
bursts
attempting to breathe
holding it in only makes it worse
begging them to stop
not even knowing where we started
one glance
and it starts again
tears leaking
streaming
trying not to pee my pants
silently shaking
torture
yet
absolute bliss
free from judgement
free from pain
free from holding back

i miss them being my every day
my every waking moment
but i am still so glad that they are still here
still such presence in my life

they ended up staying right through till dinner. bethany joined our giggle fits and i gave her her christmas present necklace too.
i am so lucky to have a family that embraces my friends. my house these days just adds more applesauce and salad to make dinner stretch for whoever is over. a delicious dinner brought by caring neighbours spread for all my family and 3 friends. michelle and megan joined the table so by 8 o'clock my kitchen looked like a party!
my parents know my friends so well now that i live at home and hunter has always been included so to have everyone sitting around and talking and laughing just felt like heaven. when the bad days are bad it is lonely and tough but when the good days are good i feel like i am flying!

quinn and ming left after dinner. beth and michelle and megan tucked into my big red bed and we had good old girl talks about love and loss and life and great things and tough things. it's funny how old friends become new friends as you refigure out what you've learned in each others absence and share and grow and get to know each other again. theres a certain comfort there that i'm so grateful for. such good people.

and that was my day! very fun and full of adventures even though i didn't leave the house.

the pics that i used for the girls necklaces....

ming and eva




quinn and eva





beth and eva



plus some bonus ones that i just found of my awesome girlies!