Re: Not totally cf related/just talkingPATTI-Rosemary

[Guest guest]

Rosemary,

I absolutely love how you are able to just say what you think!! I am getting

there again, I used to be able to do it without a problem. I feel the same way

you do too!! My MIL is one of those people who uses other peoples misfortune to

her advantage, a way to turn it around to where it affects her. When Piper was

in the hospital right after she was diagnosed, we were there for a month and she

only came to visit 4 times, and it was never by herself, only when she had an

" audience " to perform too. She always uses the excuse that she is so stressed,

that she doesn't think that she can take anymore. When I ask her what it is

that is stressing her out so bad, this is her response, " My granddaughter has

this horrible disease, I am working 3 jobs, my son broke his leg, blah, blah,

blah........... " Well all I had to say to her was thats life, and I really

didn't understand why Piper having CF stressed her out so bad, its not like she

has been active in ANY part of her care. Hell,

they won't even babysit her for an hour or two. Well even if they would I

don't think that I would let them, you see my MIL is also a functioning

alcoholic. Meaning that she can't function unless she is pretty lit. She goes

through a box of wine a week, good god that's 5 liters!!!!!!! By

herself!!!!!!!! Anyway we had a big blow up before Thanksgiving and we haven't

spoken since, and the funny thing is, she or anyone else from that side of the

family, haven't bothered to call and see how the kids are doing. They don't

even know that Piper cultured PA or anything!!! I HATE selfish people, and it

seems that I married into the family that wrote the book on being selfish lol!!!

Well, I have rambled enough, sorry!!!

Hang in there Patty, it will get better, I wish I knew when, but it will get

better. I have my bad days too, a lot more of them here recently : )

Katy

mom to Austin 4 no CF & Piper 18 months w/CF

ROSEMARY3FOR3wCF@... wrote:

Patty - you are not alone!!! Being strong is talking about it. We all have

those days and it gets tiring to " pick up yourself and know tom. is another

day " ...the chronicity is what runs us down. You are strong. Cause being

strong is being able to articulate how you feel and why. I agree that the

diagnosis of CF has had a domino effect on my life and all

relationships.......than I

try - God, its stretching it sometimes - to find the positve - the wonderful

people, strangers who have shown me so much kindness and support when friends

have walked away cause they " can't deal with it " . You know what, screw them,

we didn't ask for this or want this but this is life...BUCK UP...........they

can't deal with it.......too bad for them...then they tell me " your so strong "

--- hello, I got this strong cause I HAD NOT CHOICE - I had to DEAL WITH

IT........

When my mother was dying we were all mad cause her younger brother, in his

early 40's - she was in her early 50's never came to visit. My mother said

" don't be angry with him - he can't bear to see me like this " ...to me that was

amazing. To be so compassionate and understanding....I look to memories of her

to help me from judging . She was right that he loved her and it broke his

heart to see her and it was probably better because she would have been sadder

see that " look " in his eyes...In the end he came around and was with her the

night before she died singing Irish songs with her...

Gosh, I ramble.............hang in there........you will be fine......you are

NORMAL.............

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

my new favorite quote is

Any idiot can face a crisis -

it's day to day living that wears you out.

Anton Chekhov

[Guest guest]

I forgot to add that the 3 jobs my MIL has are, she is a school teacher, she

works one Sunday a week at our church as the children's' choir director, and she

give private piano lessons. Now, she only give two lessons a week and they are

for an hour. If she was so stressed it seems to me like she could give

something up. But she HAS to make herself too busy for her family, I just don't

get it. Its not like they need the money, they are very well off. Its just one

more thing for her to gripe about, and to try to get any sympathy from anyone,

pathetic!!!!!!!! Get this, when Piper was in the hospital, she made it so much

about her that people were cooking them meals, did we get any? NO!

Katy

Mom to Austin 4 no CF & Piper 18 months w/CF

[Guest guest]

That is so frustrating! I have a sister-in-law also does VOLUNTEER

work.......I feel like " Hello, I could use a little help. " Ignorance is bliss.

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

my new favorite quote is

Any idiot can face a crisis -

it's day to day living that wears you out.

Anton Chekhov

[Guest guest]

Kate - are they stupid or selfish? Some people just don't want to know

anything related to CF. The best way for me to hang up the phone or have some

one

walk away is to start talking about the childrens health! LOL......

Now I mail them articles. The article in February Good Housekeeping is great

for that. The author writes about family..........briefly but acknowledges

the ignorance of people(i.e. they look so healthy " ...........ARRRRRRRRRRRR).

If you or anyone needs a copy I can send it to you.

Part of my job is sending information out so I can make a lot of copies and

mail them!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

my new favorite quote is

Any idiot can face a crisis -

it's day to day living that wears you out.

Anton Chekhov

[Guest guest]

Actually I think that they are both. She thinks that she is an expert on CF

because she read parts of the Orenstein book, and because she looked it up

on the internet. Amazing, she thinks that she knows more about CF and

treatments, etc... than Piper's CF doc

If you could mail me a copy that would be great, I'll send my address privately.

Thanks,

Katy

ROSEMARY3FOR3wCF@... wrote:

Kate - are they stupid or selfish? Some people just don't want to know

anything related to CF. The best way for me to hang up the phone or have some

one

walk away is to start talking about the childrens health! LOL......

Now I mail them articles. The article in February Good Housekeeping is great

for that. The author writes about family..........briefly but acknowledges

the ignorance of people(i.e. they look so healthy " ...........ARRRRRRRRRRRR).

If you or anyone needs a copy I can send it to you.

Part of my job is sending information out so I can make a lot of copies and

mail them!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

my new favorite quote is

Any idiot can face a crisis -

it's day to day living that wears you out.

Anton Chekhov