grateful complaining!?!

So CF has always been put on the back burner for me. Ive always been extremely healthy. I only go in the hospital for tune ups about once every 4-5 years. My weight is fine (a little too fine if you ask me...could be lower) and my lungs great...FEV1's in the 100's.

But lately I havent been feeling good...lots of lung pains, coughing, shortness of breath. Ive been put on cipro and tobi twice this year...but on thursday when i have my doc app im almost positive my FEV's will still be in the hundreds...or at least in the high 90's.

I hate when I dont feel good. When my lungs feel like they are tearing with every breath. But it happens so rarely that when it does I complain...and im whiny...and im pathetic.

I ask myself all the time, how is it you are complaining when about these tiny problems when there are other cfers (my sisters included in this) that would kill for lung functions as amazing as mine, would kill for my extra weight...are dying to get it.

I know i should be so grateful that Im as healthy as I am...and i am grateful...i guess its just confusing for me. I feel so normal so much of the time...that when cf comes a knocking i lose it...Im reminded every day by the pills and the treatments that I still have cf...and yet I feel like most of the time I dont. especially since when I dont feel good the doctors dont take the fact tha ti dont feel good seriously b.c my lung functions are so high and my weight is good...what do I have to be 100 lbs and almost dying to get treated?!?

I found this poem on some website by a cyster...it seems to fit perfectly for me


Standing in the crossroads
Amidst two paths of life
The life she was given
And the life she wishes she could have
She looks so �normal� to everyone
Yet looks can be deceiving
The CF lurks like a shadow across a wall
Always following
She can�t figure out where she belongs
Too sick to be healthy
Yet too healthy to be sick
What some might call a blessing
She calls her everlasting burden
One path leads her to her bond with her CF family
The other to her dream of acting normal and denouncing her disease
She doesn�t know which way to go
The CF is a part of her
It makes her who she is
Even within the depths of her mild case
She knows she is the black sheep
And doesn�t know which path to take
Her fear of being the sole survivor of her terrible disease
Pushes her toward taking the �healthy� path
But to deny who she is and all she has become because of her CF
Pulls her back into reality
She is standing in the crossroads
Amidst the two paths of her life
She realizes she is stuck between both worlds
As an outcast
Neither fitting one or the other
Her body belongs to one path
Her spirit the other
She realizes she will never really know which path is right for her
Her heart only tells her one thing
Her spirit will last much longer than her body ever could.

FML

so found out today that my sisters and i have to be 3 feet apart from here on out. this blows.

i deal just fine with all of the shit that comes with cf.

the countless hospital visits

the needles

the meds

the pain

that stupid death sentence...

but telling me that i cant be close to my sisters...or if i wnat to be i have to wear a mask?!?!

im sorry but im not that strong.

my sisters are the two people that understand everything about me and our cf. They know me...

i cant handle this.

im sick of feeling lik ei have to chose betweena normal life and the cf life.

i just want everything to be normal

i just want my sisters

all you people take advantage of the fact that you have this life with out (virtually) no hassles.

sure we all have our troubles, and im not saying that mine are greater...this just really sucks right now.

i know that we will be able to work around this...and will still see each other.

it just really really blows.

my sisters are the most important people to me

i feel like no one really understands what im going through.

i wanted to throw/ break something soooooooo bad earlier when i found out. I sat in the piano room at work and just cried.

god.

i hate hate HATE this.