everyone has a story, here is mine:

I have Cystic Fibrosis, diagnosed at birth by Meconium Ileus (an intestinal blockage requiring surgery). Although considered healthy most of my life (with no lung involvement), I've always dealt with fatigue, digestion complications and sinus issues.

As a child it was thought I was miraculously spared the devasting effects of CF - it was believed I had a mild case of CF, and wouldn't develop the typical complications of a person with Cystic Fibrosis. Respectively, my health was taken for granted, and I wasn't taught the importance of lung maintenance.

So, when I woke up sick one January morning in 2002,
I simply thought I had the flu, and didn't feel the necessity to go the doctor. Two weeks later after no improvement, I found myself in the hospital, on I.V. antibiotics and oxygen for no less than 14 days.

Not until just recently have I come to understand that what I experienced was my first CF exacerbation, which, sadly, caused irreversible lung damage by waiting for treatment.
So much for being "healthy".

Although I tried to return to work, it proved to be too stressful, too demanding, and too exhausting.
So, that October I retired and started my "life with CF".
And here we are today....

Thursday, February 7, 2008

Please Don't - a poem by a cf author

Do not tell me that I'm fragile:
I've withstood storms so powerful
they could have blown my house down,
shattered my world,
and I am yet not broken.

Do not tell me that I'm weak:
I've fought enemies
invisible yet all the more violent
for their lack of size,
and I have not yet been slaughtered.

Do not tell me that you're worried:
I've made decisions, right and wrong,
steered my life and held its course
through many twisted paths,
and I have not yet lost my way.

Do not tell me that you pity me:
I find joy in every play of the light
against a window, and every breath
no matter how hard won,
and I am not yet ready to give up my joy.

Above all, please do not tell me that because my life may scare you
that I am somehow weaker,
somehow more afraid,
more easily broken.

Do not try to turn your fear into my weakness.

I am both a lover
and still a fighter.
So please, Don't.

~Piper - 26 yr old, lawyer, w/cf

Posted by Sally at 1:55 PM

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