radiology

[Guest guest]

Deon, I'm glad you made your way here. So many of

us, like me, lucked upon it by accident and now

would never leave it. You're so young to be carrying

such a huge burden, and with 2 kids still at home -

my heart goes out to you. But stick with us and you'll

probably learn a lot about how to live with your

disease, in addition to making friends with people who

really care. It's so great to know that, with this bunch,

you're never alone. And you won't be judged no matter

what your mood, so let her rip! This group offers

support and encouragement when quite often it can't

be found anywhere else, even from our own families.

You'll be listened to, laughed with, worried about,

prayed for, and valued for your opinions and

experiences. Welcome.

Joyce,

How'd the sleeping go last night in the new throne (by

the time you get this it'll be Tuesday)?

What a challenge, to get so many different tops on

the thing just to keep your fanny from going numb!

Wish I could come over and paint a faux finish on it

or something.

I'm sorry you had to hurry out of church just to avoid

the sob when talking. Last night I went to hear a speaker

at my church, and had the most difficult time yet in

simply getting dressed (except it isn't so simple). Almost

kept me from going. bah. But didn't. :-)

Gang, I'm going to the doc in Dallas on Friday. I won't

bore you with the reasons why, but it turns out they've

got me scheduled for a HRCT, VQ scan, and fluoroscopy

(all of which I've had before) in one day. This all needs

to happen before I go to San for an appointment

Feb. 1st. Other than being tired, is there reason for me

not to agree to it? I don't want to assume that just

because my nurse ordered it, it's okay. I'll probably call

my PCP tomorrow and run it past her.

Sandie, I'm praying that your burdens will be lessened.

I think we tend to want all the answers and we want

them NOW. Unfortunately, we're dealing with a disease

that doesn't offer concrete answers, and mostly

depressing facts. I absolutely relate to the feeling that

sometimes it all seems totally overwhelming. Just

today I could have strangled my nurse coordinator (for

the hundredth time) for some stuff she neglected to

do. Sometimes we have to step back and percolate,

vent or rage, calm down, recharge, then move ahead

one step at a time to demand and insist on what we

deserve. It's exhausting, and I wish I had a magic wand

that would make it all easier for you, for all of us.

Babs, You're living in a veritable kennel! How wonderful.

I'd have just as many furry babies as you if it were possible.

I love your sense of humor and your honesty. Both

are absolutely vital in my book. I'm so glad you're one

of the gang. How far is Driftwood from Austin (that's

where my kids live, not that I can travel right now)?

Hugs and blessings,

Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas