CF Poem

Cystic Fibrosis Poem

This is my life, Every morning to every night, Everyday there is a constant fight.

But not everyone can see, this fight is between my body and me.

I hurt, I cough, I cry, I breathe, I just want a break is it hard to see?

They say I'm a hero, they say I'm strong, but sometimes I think they are all wrong,

I smile, I laugh and pretend I'm okay, Truthfully, that’s how I make it, day by day.

I constantly hear healthy people complain. Seriously? How many times have you had a needle shoved in your veins?

I sit, I cough, I gasp for air, and at the same time, it feels my lungs are starting to tear.

Doctors, treatments, needles and pills, Just the sound of them, gives people the chills.

Im fighting, I'm breathing, but at times I'm simply deceiving.

It might seem simple, maybe easily done, but I've been fighting my whole life. And this battle I still haven’t won.

You know I'm greatly jealous of you, because you have lungs that for me, would be considered brand new.

But really what else should I say? I shouldn’t just sit here and complain.

I have my friends, my family, and I have myself. That’s really all I need, even if I'm not in great health.

I'm going to fight and im going to win, I'm going to use all the strength I have within.

I've came this far along, and I promise you, im going to stay strong.

Thousands of people, fighting to breath every day, Thousands of people, just waiting to be okay.

This isn’t something you can just simply ignore. I think it’s time for a cure Need I say more?

-Unknown writer.

Love Remembers You

by Same State

 You’ve got a tear in your heart
Seems like it’s been there for years
You’ve never known love without scars
Or hope without fear

You blame all your trouble on God
You think he forgot about you
Cause life wouldn’t have to be hard
If He’d just come through
But He’s gonna come through

Cause tears don’t last forever
You ain’t always gonna lose
So if you’re frozen like December
The summer’s commin soon
Love remembers you
Love remembers you

So lift up your eyes oh weary soul
Quit makin friends with your pain
Cause you’ve got a heart made of gold
He won’t let it go to waste
You’re going to be okay

So hold on tight
You’re surrounded by
Saints and angels
And there’s a light
Shinen all the time
For all the faithful

Cause tears don’t last forever
You ain’t always gonna lose
So if you’re frozen like December
The summer’s commin
Oh summer’s commin
Cause tears don’t last forever
You ain’t always gonna lose
So if you’re frozen like December
Summer’s commin soon
Love remembers you
Love remembers you
Oh love remembers you
http://www.youtube.com/watch?v=zQbE3cYSt10&feature=youtube_gdata_player

MERRY CHRISTMAS!

 Every body pauses and stares at me

I use oxygen as you can see

I don't know just who to blame for this catastrophe!

But my one wish on Christmas Eve is as plain as it can be!

All I want for Christmas are my two new lungs,

my two new lungs,

can't wait to breathe with my two new lungs

Gee, If I could only have my two new lungs

then I could shout, "Merry Christmas!"

Seems so long since I could say

anything without being winded

Gosh, oh gee, how happy I would be

if I could only whistle

All I want for Christmas are my two new lungs,

my two new lungs,

can't wait to breathe with my two new lungs

Gee, If I could only have my two new lungs

then I could shout, "Merry Christmas!"

Thoughts that keep me awake at night

Lately I've been thinking about the person who will be donating their lungs to me.  They are about to enjoy the holidays for the last time.  Are they away of their coming demise?  Do they have a premonition, a hint of things to come?

I have been praying for blessing for them and their family, that this holiday season will be especially memorable.  I intercede on their behalf, that they may fully understand the meaning of Christmas.   I have been praying they are ready  for an eternity of peace with no more tears, no more hurts, no pain.

I do not understand the complexities of life and death.  How God uses ALL circumstances.  Their tragedy will be my benefit.  My good and their pain flowing together in a grand scheme that is good  is beyond  my ability to comprehend.

So I live in a sense of awe, anticipation and bewilderment.  I pray and I trust. I am thankful that God is in charge so I don't have to be.  His timing is perfect.  His intention for me, for my donor, for all humanity is for good.

The Next Step

 Need You Now

Well, everybody's got a story to tell
And everybody's got a wound to be healed
I want to believe there's beauty here
'Cause Oh, I get so tired of holding on
I can't let go, I can't move on
I want to believe there's meaning here

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

Standing on a road I didn't plan
Wondering how I got to where I am
I'm trying to hear that still small voice
I'm trying to hear above the noise

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

Though I walk,
Though I walk through the shadows
And I, I am so afraid
Please stay, please stay right beside me
With every single step I take

How many times have you heard me cry out?
And how many times have you given me strength?

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

I need you now
Oh I need you
God, I need you now.
I need you now
I need you now

-Plumb

http://www.youtube.com/watch?v=9ylnx0NA9X4

The draw of the ocean.

I  want to flee to the ocean, be still  and watch the sun set.  The continuous waves brings a rhythm to life that I long for.  The vastness of the water reminds me that there is a bigger picture; always more then what we can see.

Today is done,  finished with more questions and less answers then  yesterday.  I am lost at sea, afloat on a life boat with holes, water tumbling in faster then I can bail.  I want to sit on the shore.

Hurry Up and Wait

I know I need to be patient.  I need to wait.  I will practice waiting  in the coming days.

I know organ transplant is a mixture of science and art.  There will be no exact timing as to when the surgery will happen, how long the new organs will last, what complications or ease may befall on me due to this endeavor of a bilateral lung transplant.

I am tired of waiting; tired of wondering if they will accept me as a candidate.  Am I finally sick enough?

Tomorrow the team of experts at Duke hospital in Durham, NC., will come together and view all of the test results from last week's evaluation.  Tomorrow they will call and let me know what is next- yes, no or maybe.

Yes, come on over, start the pulmonary rehab.  Time will tell if I am truly ready or not.

No, We won't be able to transplant you due to ___________fill in the blank.  Certain bacteria, certain complications will keep you off of their list.

Maybe, start the rehab, see how much healthier you become, see if you can buy more time with your native organs.

I'm tired of waiting, tired of life in limbo- Do we move to Durham?  When do we move to Durham?  In the middle of the Christmas season.  I'm too tired to decorate one house, much less two if we move before Christmas.

So tired....time to rest.