Re:Why I feel CF Friends are important

April 10, 2003

Yes,

I am rambling tonight...LOL

Growing up I never met ANYONE like myself.I was teased in Elm. school b/c I

was too skinny. I was sooooooooo embarressed b/c of stomache issues...was

even sent out into the hall and repremended b/c of toxic gas that escaped my

GI system.

In middle school my cough was horrible...I coughed until I was clear....And I

sound very rattly...so parents told their kids not to get to close so they

wouldn't " catch " things.

I also started missing tons of school.

In high school I missed 60+ days a year at home sick with tummy issues or

lung infections. I was exhausted 90% of the time. I couldn't stay after

school b/c I had to go home and use the bathroom.

I did nebs at school, got my CPT at school, and ate snacks b/c I was

diabetic.

It wasn't until I was 16 that I found out " NORMAL " people don't use the

bathroom 5-10 times a day.....I was always embarressed about my explosions

but thought I was just unlucky and had them at school.

When I was in college I got very ill. KNOIWONE understood and they were plain

cruel to me. I didn't know about Cystic-L or Concoll or any other CF groups.

I had to fight to stay in school b/c they wanted me out b/c I missed 2 weeks

of school b/c I was in the hospital. I went to nursing school the day they

released me while still recovering from pancreatitis and 20 pounds lighter.

Finally after I graduated in 1997, I met some CF patients online on Cystic-L.

It was the first time I understood that " normal " people didn't take a month

to get over bronchitis, normal people didn't choke and hank, normal people

didn't cough up mouth fulls of mucus everyday.....and mucus was supposed to

be thin and slippery...still cannot fathum this but oh well.

My hubby went to CF camps growing up at Duke.....he met others just like

himself. It was the first time he saw a nebulizer, the first time he saw 02,

and he made lasting friendships there. I am totally and completely

jealose.... I only wish I had known someone like myself growing up...It would

have made life much easier....

Becki

YOUR FAVORITE LilGooberGirl

YOUNGLUNG EMAIL SUPPORT LIST

Pediatric Interstitial Lung Disease Society

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