I wrote this a couple of weeks ago...

every time i look in the mirror
all i see are scars.
each one having their own story
their own memory of a different hospital bed
their own pain of a needle stick
each make up part of who I am.

each time I touch my neck
i can feel where the tubes used to be
the ones that kept me alive
while the disease i have
tried it's best to take my life
for two and a half years.

I try to get rid of them
scratching them for hours at a time
until it burns just from the air brushing over it
in the shower, it stings
but it is easier to bear that physical pain
than to talk about it with the one i love.

"your beautiful" he tells me
each time it cuts deeper
than the time before
because i know i'm not
i can't be beautiful to anyone
except to my creator.
for He is the one that made me this way.

Not a day goes by that i don't wander
what it would be like if my disease would have won.
would my parents try again?
or would the pain of my death be too much
and they not risk having another like me?
where would they be today?

On December 11
when i walk down the isle
to marry the man of my dreams.
everyone will be looking at me
they may actually be looking at
my dress, or my veil, or even my flowers
but to me, they will only be looking at my scars.

my scars have been with me all of my life
and will never go away
this, i am content with
i don't know what life would be like without them
they allow me to hide myself in them
and with that, i am content.

every time i look in the mirror
all i see are scars.
each one having their own story
their own memory of a different hospital bed
their own pain of a needle stick
each make up part of who I am.
but not what I am.

security of the scalpel.

lying on the stretcher
in a gown that barely covers your back side
needles all in you IV's coming from every direction
about to be rolled in
could be taking your last breath
putting your life for the next hours in
these doctors hands
do they even care about you?
probably not. they just want your money.
do they even know the whole story?
why would they care anyway?
your there. the medicine goes in..
you start feeling like your falling
the room starts spinning.
next thing you know, your waking up
you feel sick. uh oh, where's the puke bucket?
where are you? what happened?
you begin touching your body all over
searching for the pain
OUCH! there it is. it hurts.
why did these people do this to me?
make it stop, make the pain leave.
please.
too bad the doctors can't help
can the nurses? no.
no one can help.
no one can do anything for you.
no one except the Almighty.


For me, personally I love surgeries. Not only to they thrill me, but it is one of the only times that it is easiest for me to be completely dependent on God, knowing that just one milligram too little, or too much of any medicine could kill me, and who is controlling how much of this drug i am receiving? A SINFUL BAG OF DIRT. thats who. but i know that my God is in control of it all, of how much medicine i will be getting, control of the doctors hands, He is in control of everything, and i know that. so while you are sitting in the waiting room, worrying, scared that i may not be returning to you, I know differently. this is why surgery does not scare me, any type of surgery. I know God is sovereign and Just. That is all you or i need to know.

no energy.

We returned from Boston yesterday.
I am glad to be home
but i sure do miss Boston.
Today is going to be a rough day.
it has already been a pretty rough morning.
i am loosing energy and i am loosing it fast.
i had to lay down and take a rest this morning:
from folding clothes!
seriously!?!? folding clothes?
that is definitely not a strenuous activity!
or at least it wasn't the last time i checked!
my body feels useless.
it hurts so bad just to walk up the stairs.
i just want to feel better.
please continue to pray.

Salem

Jonathan, mother and i went to salem today.
it was great!his morning
but...while we were at the train station
about to leave, my left hand became numb.
and it scares me because where the moamoya is
controls the left side of my body...
oh well...God is in control. :)
its just hard doing things when you cant feel one hand.
but...Salem was great!
Jonathan has always wanted to go, so we did.
but not many things were open since its like
FORTY DEGREES here...but it was still fun!

doctors appointment.

We just got back from the doctors office
and i may not have to have brain surgery!
Dr. Scott wants me to have a brain spect
tomorrow to see how the blood flow is in my brain.
he said that i am a very unusual case since some
of my symptoms do not line up with moyamoya.
to make his decision on whether i need surgery or not
he will weigh out the risk of surgery vs. the long term benefits.
so....we still do not know if i will have to have surgery.
i just want to be better, i dont care what it takes to get there.

date around boston.

I took Jonathan on a date in boston tonight.
it was great!
first, we went to an italian
restaurant in little italy
which was amazing!
then, we went to a little
italian cafe' where we shared
expresso, gelati, and a canoli
all of which was wonderful!
after that we went to the
museum of fine arts
where we looked at all the exibits.
tonight was more than wonderful!
i loved going around boston, the city i love
with jonathan, the man i love.
i loved showing him around the city i
have grown so fond of over the years.
i am so blessed to have such a wonderful
man who loves me so much.

well...my doctors appointment is tomorrow.

in boston.

so..we arrived in Boston around noon today.
my doctors appointment is on Thursday
then, we will find out what the final decision
on surgery will be.
but in the mean time..
we are having fun around Boston!
and, tomorrow night...Jonathan and I are going
on a date IN BOSTON!
i am planning it and...its a surprise to Jonathan.
well, where we are going and what we are doing is a surprise.
he knows we are going on a date...im pretty excited.

boston bound.

So...Mother, Jonathan, and I are heading to Boston on Tuesday.
Dr. Scott (the neurosurgeon) thought we already had
an appointment set up with him for this week
which...we didn't but, we will by monday.
he wants to see me and see how the Moyamoya has
effected me before he makes his final decision about surgery.
but hopefully, if he decides to do the surgery (which i hope he does)
he will just do it sometime while we are already up there
and in that case, we will fly my dad up so he can be there for it too!
God is so good, Jonathan and i are on spring break this week,
so if i don't have surgery, then we will not be missing any school
and if i do, we will only be missing a week, two at the most
(he refuses not to be there, no matter what it cost him in school or work, stubborn boy) :)
AND, we both were part of a prison ministry this weekend,
and were there when we found out we would be going to Boston.
so....one lady gave me $400, another gave me a $100,
then, they took up a love offering and that came out to another $500
so we left there with $1000 to put on the trip, HOW AMAZING!
God has blessed us tremendously already, i can't wait to see what else he has in store for us!

i want to thank all of you for your prayers and ask that you each continue to keep
us in your prayers as we are in unchartered waters now.
we have never delt with brain surgery before....THIS SHOULD BE FUN! :)

i always screw up.
that's what i do.
anytime i have something good,
i screw it up.
will the cycle ever end.
i hope so.
i have something so so good right now
and i am in the process of
screwing it up majorly.
but i want so bad not to.
i love him with all that i have.
yet something inside of me is still
trying to mess it up.
i am so lucky to get to spend the
rest of my life with him,
if i don't mess it up completely before then.
he makes me so extremely happy
but i am very bad at showing it.
i am naturally an uptight person.
i am trying to change, i truly am.
i hope i can. for his sake.
so he isn't trapped in an awful marriage.
i love him with all of my heart
and i am so thankful that he loves me
and is willing to put up with me.

love of my life.

i love him.
with all of my heart.
i just have a hard time showing
it sometimes.
and it breaks my heart
when i hurt him.
or think i have hurt him.
and now
with all of my pain
i am such an awful person to
be around.
and for that, i am deeply sorry
i dont want to act this way.
but unfortunately,
it can be a symptom.
but, the good news is,
i get to spend the rest of my life
with this wonderful man who
loves me more than i ever deserve!
God has truly blessed me with a
wonderful fiance that i love
and i thank Him every day for
the wonderful gift!

somebody rescue me.

pain.
hurt.
agony.
pounding.
throbbing.
stabbing.
pain.
i want to scream.
at the top of my lungs.
my head is throbbing so badly.
someone please just make it stop!
but you can't can you?
no.
but my God can.
and i know He will give me the strength to endure.
it may just be hard, but i can do it.

doctors.

i have my appointment with my neurosurgeon today.
all the neurosurgeons in Baton Rouge
are meeting this morning around 8 to discuss my case
and decide which procedure will be best for them to do.
but, they don't know that all of that is irrelevant now.
hopefully they will realize that they have no idea
what they are doing and they will just
refer me to boston anyway.
i mean, the guy i am going to is chief
of neurosurgery in one of the top 5 hospitals in
THE WORLD!!!! and the doctors here....
said that they dont even know if the
procedures work, and, they have only operated
on like 2-5 people that have this.
i would MUCH rather go to the 2 doctors
who have spent the last 20 years on moyamoya.
and have operated on 145 patients....
wouldn't you?


Hebrews, go read it and find out about the God that I serve! :)

pain today.

Today i am in a lot of pain.
where they did the angiogram.
it was supposed to hurt the first 3 days
but it didnt.
and it's making up for it now!
i am trying my very best
not to show my pain on my face
or emotions.
but it is rather hard.

moyamoya

tuesday i was diagnosed with moyamoya
its Japanese for cloud of smoke.
and what that means is that my main artery leading
into my brain that controls my entire left side is
basically cut in half, and little capillaries fill up the gap.
So it kind of looks like this ____________........________
but the dots shouldn't be there, obviously.
i will need brain surgery in the next year...
but, we found 2 neurosurgeons in boston
who have been perfecting this procedure for 20 years
so, obviously we are going there.
good news is:
my fiance' finally gets to go to boston with me.
i have had my past 23 surgeries there,
so i am just about a bostonian native :)
God is so good.