Tuesday Update...Ramblings

[Guest guest]

Hey All,

I tell ya....I have known I was end stage for awhile or thats what my PFT's

have been saying for years. Although, I didn't really appreciate what that

meant. I mean I would go in every 3-4 months for a tune up or before that 2

or 3 times a year. 2 weeks of IVs would make me feel much better and I'd bee

set for awhile. I could still go to the beach and have a good time. Like

having a bad time was this secret signal that I was " end stage " .But now, I

cannot stay out of the hospital. 2 weeks of IV's have given way to 3-4 weeks

and then a week after I get off I am right back where I started. I cannot

stay well no matter what I do. No sooner do I get off IV's but Im sick again.

Im so tired....this fight is exhausting me.

I have always kinda denied I was end stage...you know what I mean. I thought

I would feel a certain way, look certain way, I would know it was coming way

before it hit, Truefully I never thought CF would beat me. I NEVER thought

this little disease would destroy my lungs...I would beat it.....but it snuck

up on me...before I could really look at what was happening. Its a sneaky

little devil....Like a dark shadow that grows bigger as you do. Soon it

stands above you and you start to feel little. As Deford once said "

This disease is bigger than me now. " Thats how I feel.

It scares me.....I know I am club med bound again ..... The cycle just seems

to continue....

Damn I need those new lungs......and get off this dang 02.

Becki

YOUR FAVORITE LilGooberGirl

YOUNGLUNG EMAIL SUPPORT LIST

www.topica.com/lists/younglung

Pediatric Interstitial Lung Disease Society

http://groups.yahoo.com/group/InterstitialLung_Kids/

[Guest guest]

In a message dated 5/13/2003 11:20:56 PM Central Daylight Time,

MissGooberGirl@... writes:

> Becki

Hang in there a new lung will be here!! Don't give up or CF will win!! You

have to keep fighting this awful disease!! Are you on a transplant list? If

not you need to be so you can start to feel better. Take care!! Deb A

[Guest guest]

Dear Becki,

Please get well and stop working yourself so damned hard. God knows, you

have proven that YOU ARE stronger than this blasted disease!!

My love,

Paige (Mom to Jack, 25 months old with CF)

Tuesday Update...Ramblings

> Hey All,

> I tell ya....I have known I was end stage for awhile or thats what my

PFT's

> have been saying for years. Although, I didn't really appreciate what that

> meant. I mean I would go in every 3-4 months for a tune up or before that

2

> or 3 times a year. 2 weeks of IVs would make me feel much better and I'd

bee

> set for awhile. I could still go to the beach and have a good time. Like

> having a bad time was this secret signal that I was " end stage " .But now, I

> cannot stay out of the hospital. 2 weeks of IV's have given way to 3-4

weeks

> and then a week after I get off I am right back where I started. I cannot

> stay well no matter what I do. No sooner do I get off IV's but Im sick

again.

> Im so tired....this fight is exhausting me.

> I have always kinda denied I was end stage...you know what I mean. I

thought

> I would feel a certain way, look certain way, I would know it was coming

way

> before it hit, Truefully I never thought CF would beat me. I NEVER thought

> this little disease would destroy my lungs...I would beat it.....but it

snuck

> up on me...before I could really look at what was happening. Its a sneaky

> little devil....Like a dark shadow that grows bigger as you do. Soon it

> stands above you and you start to feel little. As Deford once said "

> This disease is bigger than me now. " Thats how I feel.

> It scares me.....I know I am club med bound again ..... The cycle just

seems

> to continue....

> Damn I need those new lungs......and get off this dang 02.

>

> Becki

> YOUR FAVORITE LilGooberGirl

> YOUNGLUNG EMAIL SUPPORT LIST

> www.topica.com/lists/younglung

> Pediatric Interstitial Lung Disease Society

> http://groups.yahoo.com/group/InterstitialLung_Kids/

>

>

>