Re: FW: [CFSupport] CFer on MTV's Real World (premiere tonight)

[Guest guest]

I saw the show and she was a disgrace. It's good that CF was mention but the

way she acted it was horrible. She smokes and drinks. She got drunk and went

to bed and had a cough episode and she threw up all over, Her roommates mention

that they didn't know too much about the disease but they knew it was fatal

because ie's brother was 6 when he died of CF. It's good to be mention CF

but if she is trying to commit suicide on national TV because of cf. Then we

don't need that kind of publicity.The show is on MTV called Real world .Tues at

9.00 central 10 eastern.

Debbie I. 's mom 4 w/cf

[Guest guest]

More reason to not watch TV everybody. The way that this sounds - like

all reality TV - is that it was meant to shock and to even upset

people. I hate that about TV.

My opinion about smoking in general is clear. And I have stayed away

from saying anything on this list since I cannot be nice about it.

Smoking makes me sick. I think that there is something terribly wrong

with people that do it. Especially once aware of CF and the suffering

that people with it go through, and is disrespectful to anyone ill that

has to go through life limited. I believe in carema, and smoking is

opening yourself for a lot of distress. It will come back at you twice

fold. i lead my life (or at least I try to) in a manner that allows me

to open up to others pain. So when I am doing something not that good

either for me or someone else, I think about my right to do that. I

have no right to screw up my life, while there are people in this world

every second going through agony. I simply don't have that right. I

believe people don't have a moral right to smoke.

As for this girl on TV. God, what a case. I feel so sorry for her.

She must be in so much pain to put herself in a position like that.

That she looked stupid, and pathetic, and sad is not only her fault.

How can MTV use a sick person who is confused like that. It's like

taking a camera into a burning house and taping a girl trying to get

out. Watching her bump into walls and get burned, and finally perhaps

getting out, perhaps not. And all of us saying, god she should have

had a plan how to get out. She should be smarter. I know how stupid I

was in university (not always, but I had my moments) and thank god no

one taped me abusing my body.

Sometimes the expectations on us CF people is to be super human. All

the other girls and guys on that show were probably doing the same

thing, getting drunk and smoking. But her we expect to be perfect. To

not have to cope with being a teen/young adult. No one takes into

account being sick is also traumatic and sometimes the wrong decisions

are made out of grief and loss of your own self.

It's so sad, I'm happy that I did not see it. I would want to reach

out to her. I wish this girl knew how many people she touched by her

CF.

Natalia

On Wednesday, January 7, 2004, at 08:10 AM, redsdennys@... wrote:

> I saw the show and she was a disgrace. It's good that CF was mention

> but the

> way she acted it was horrible. She smokes and drinks. She got drunk

> and went

> to bed and had a cough episode and she threw up all over, Her

> roommates mention

> that they didn't know too much about the disease but they knew it was

> fatal

> because ie's brother was 6 when he died of CF. It's good to be

> mention CF

> but if she is trying to commit suicide on national TV because of cf.

> Then we

> don't need that kind of publicity.The show is on MTV called Real world

> .Tues at

> 9.00 central 10 eastern.

> Debbie I. 's mom 4 w/cf

>

>

>

[Guest guest]

I meant CARMA, not camera......ahh typing

On Wednesday, January 7, 2004, at 10:38 AM, Natalia Boguslawska wrote:

> More reason to not watch TV everybody. The way that this sounds - like

> all reality TV - is that it was meant to shock and to even upset

> people. I hate that about TV.

> My opinion about smoking in general is clear. And I have stayed away

> from saying anything on this list since I cannot be nice about it.

> Smoking makes me sick. I think that there is something terribly wrong

> with people that do it. Especially once aware of CF and the suffering

> that people with it go through, and is disrespectful to anyone ill that

> has to go through life limited. I believe in carema, and smoking is

> opening yourself for a lot of distress. It will come back at you twice

> fold. i lead my life (or at least I try to) in a manner that allows me

> to open up to others pain. So when I am doing something not that good

> either for me or someone else, I think about my right to do that. I

> have no right to screw up my life, while there are people in this world

> every second going through agony. I simply don't have that right. I

> believe people don't have a moral right to smoke.

> As for this girl on TV. God, what a case. I feel so sorry for her.

> She must be in so much pain to put herself in a position like that.

> That she looked stupid, and pathetic, and sad is not only her fault.

> How can MTV use a sick person who is confused like that. It's like

> taking a camera into a burning house and taping a girl trying to get

> out. Watching her bump into walls and get burned, and finally perhaps

> getting out, perhaps not. And all of us saying, god she should have

> had a plan how to get out. She should be smarter. I know how stupid I

> was in university (not always, but I had my moments) and thank god no

> one taped me abusing my body.

> Sometimes the expectations on us CF people is to be super human. All

> the other girls and guys on that show were probably doing the same

> thing, getting drunk and smoking. But her we expect to be perfect. To

> not have to cope with being a teen/young adult. No one takes into

> account being sick is also traumatic and sometimes the wrong decisions

> are made out of grief and loss of your own self.

> It's so sad, I'm happy that I did not see it. I would want to reach

> out to her. I wish this girl knew how many people she touched by her

> CF.

>

> Natalia

> On Wednesday, January 7, 2004, at 08:10 AM, redsdennys@... wrote:

>

>> I saw the show and she was a disgrace. It's good that CF was mention

>> but the

>> way she acted it was horrible. She smokes and drinks. She got drunk

>> and went

>> to bed and had a cough episode and she threw up all over, Her

>> roommates mention

>> that they didn't know too much about the disease but they knew it was

>> fatal

>> because ie's brother was 6 when he died of CF. It's good to be

>> mention CF

>> but if she is trying to commit suicide on national TV because of cf.

>> Then we

>> don't need that kind of publicity.The show is on MTV called Real world

>> .Tues at

>> 9.00 central 10 eastern.

>> Debbie I. 's mom 4 w/cf

>>

>>

>>

[Guest guest]

Hey gal ,

You are so very right. I don’t know why they smoke with CF. Golleeee

Anyway, what is your mailing address ? How much longer time do you have

to do in the big house(club) ??

I do hope your doing better. You sound like maybe you do. You have a

great sense of humor & a lot of caring for others. It shows in your

posts-Thanks . Bless you. I have you on all my special thoughts too

LOVE & HUGS, GrandmomBEV

Re: FW: [CFSupport] CFer on MTV's Real World

(premiere tonight)

I meant CARMA, not camera......ahh typing

On Wednesday, January 7, 2004, at 10:38 AM, Natalia Boguslawska wrote:

> More reason to not watch TV everybody. The way that this sounds -

> like all reality TV - is that it was meant to shock and to even upset

> people. I hate that about TV. My opinion about smoking in general is

> clear. And I have stayed away from saying anything on this list since

> I cannot be nice about it. Smoking makes me sick. I think that there

> is something terribly wrong with people that do it. Especially once

> aware of CF and the suffering that people with it go through, and is

> disrespectful to anyone ill that has to go through life limited. I

> believe in carema, and smoking is opening yourself for a lot of

> distress. It will come back at you twice fold. i lead my life (or at

> least I try to) in a manner that allows me to open up to others pain.

> So when I am doing something not that good either for me or someone

> else, I think about my right to do that. I have no right to screw up

> my life, while there are people in this world every second going

> through agony. I simply don't have that right. I believe people

> don't have a moral right to smoke. As for this girl on TV. God, what

> a case. I feel so sorry for her. She must be in so much pain to put

> herself in a position like that. That she looked stupid, and pathetic,

> and sad is not only her fault. How can MTV use a sick person who is

> confused like that. It's like taking a camera into a burning house

> and taping a girl trying to get out. Watching her bump into walls and

> get burned, and finally perhaps getting out, perhaps not. And all of

> us saying, god she should have had a plan how to get out. She should

> be smarter. I know how stupid I was in university (not always, but I

> had my moments) and thank god no one taped me abusing my body.

> Sometimes the expectations on us CF people is to be super human. All

> the other girls and guys on that show were probably doing the same

> thing, getting drunk and smoking. But her we expect to be perfect.

To

> not have to cope with being a teen/young adult. No one takes into

> account being sick is also traumatic and sometimes the wrong decisions

> are made out of grief and loss of your own self.

> It's so sad, I'm happy that I did not see it. I would want to reach

> out to her. I wish this girl knew how many people she touched by her

> CF.

>

> Natalia

> On Wednesday, January 7, 2004, at 08:10 AM, redsdennys@... wrote:

>

>> I saw the show and she was a disgrace. It's good that CF was mention

>> but the way she acted it was horrible. She smokes and drinks. She got

>> drunk and went

>> to bed and had a cough episode and she threw up all over, Her

>> roommates mention

>> that they didn't know too much about the disease but they knew it was

>> fatal

>> because ie's brother was 6 when he died of CF. It's good to be

>> mention CF

>> but if she is trying to commit suicide on national TV because of cf.

>> Then we

>> don't need that kind of publicity.The show is on MTV called Real

world

>> .Tues at

>> 9.00 central 10 eastern.

>> Debbie I. 's mom 4 w/cf

>>

>>

>>

[Guest guest]

This is my address. My parents pick up my mail all the time, so it;s

better than the hospital address, I rather just give out mine.

__________________________________________________

Natalia Boguslawska for Jane Speed

717 Eglinton Ave W. Apt. 507

Toronto, Ontario

M5N 1C9

Canada

I am going to be in here for awhile. I need to get so much more

better. Back to some sort of base line. And the doctors don't know

either. It will take time. I just have to get used to it a little

more. But it really really sucks!!!!

[Guest guest]

Thanks-that was very quick AND a good idea.

I sure hope they do a quickie fix-er up-er soon for you.

Aren't the computers wonderful, how they bring so very many of us ,

from various places

around the world together.???

BUT, that's because , we have our own special world-Our CF community is

a world wide

based one. It is nice as we have met folks like you & that is

especially pleasant for each

of us..

You take care, & start to get better real soon. If you ever get way

down here in Florida,

(Orlando) , I'll keep my light on for you:)) hehe

LOVE & HUGS,

grandmomBEV

Re: FW: [CFSupport] CFer on MTV's Real World

(premiere tonight)

This is my address. My parents pick up my mail all the time, so it;s

better than the hospital address, I rather just give out mine.

__________________________________________________

Natalia Boguslawska for Jane Speed

717 Eglinton Ave W. Apt. 507

Toronto, Ontario

M5N 1C9

Canada

I am going to be in here for awhile. I need to get so much more

better. Back to some sort of base line. And the doctors don't know

either. It will take time. I just have to get used to it a little

more. But it really really sucks!!!!

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

------------------------------------

[Guest guest]

Natalia,

This is very well written. My son has to do a speach (10th grade

speach class). He has to talk about " What rights should smokers

have? " He is using a big picture of Abby (2 yo niece wcf) as his

visual aid. I think that he should read part of your post in his

speach. Would you mind?

ALSO... We should send your post to MTV!!!

Thanks,

Gale

>

> > I saw the show and she was a disgrace. It's good that CF was

mention

> > but the

> > way she acted it was horrible. She smokes and drinks. She got

drunk

> > and went

> > to bed and had a cough episode and she threw up all over, Her

> > roommates mention

> > that they didn't know too much about the disease but they knew it

was

> > fatal

> > because ie's brother was 6 when he died of CF. It's good to

be

> > mention CF

> > but if she is trying to commit suicide on national TV because of

cf.

> > Then we

> > don't need that kind of publicity.The show is on MTV called Real

world

> > .Tues at

> > 9.00 central 10 eastern.

> > Debbie I. 's mom 4 w/cf

> >

> >

> >

[Guest guest]

Natalia,

Why does your address include " for Jane Speed " ? Is that the name of

the hospital?

I'm glad that you are having a good day. Knowing that, makes my day

better too. I looked to see how far you are from me. I think that

you are about 7 hours from central Ohio.

I visit customers in Rochester, NY. It looks like you are pretty

close to Buffalo, NY. I saw Niagra Falls (the Canada side) for the

first time last year. Talk about awesome! It's almost scarey to

look at it. The water moves so fast and with such force.

Thinking of you,

Gale

> This is my address. My parents pick up my mail all the time, so

it;s

> better than the hospital address, I rather just give out mine.

>

> __________________________________________________

> Natalia Boguslawska for Jane Speed

> 717 Eglinton Ave W. Apt. 507

> Toronto, Ontario

> M5N 1C9

> Canada

>

> I am going to be in here for awhile. I need to get so much more

> better. Back to some sort of base line. And the doctors don't

know

> either. It will take time. I just have to get used to it a little

> more. But it really really sucks!!!!

[Guest guest]

For sure have him read it!!

Tell him to speak from his heart as well as all that science stuff.

When you speak from your heart you can't be wrong and people cannot

argue heart.

MTV makes me sick on so many levels. From the way women and shown to

african american people, to the total destruction of eduction and

innocence in kids.

On Wednesday, January 7, 2004, at 01:41 PM, danieleverettharris wrote:

> Natalia,

> This is very well written.  My son has to do a speach (10th grade

> speach class).  He has to talk about " What rights should smokers

> have? "   He is using a big picture of Abby (2 yo niece wcf) as his

> visual aid.  I think that he should read part of your post in his

> speach.  Would you mind?

>

> ALSO... We should send your post to MTV!!!

>

> Thanks,

> Gale

>

>

> >

> > > I saw the show and she was a disgrace. It's good that CF was

> mention

> > > but the

> > > way she acted it was horrible. She smokes and drinks. She got

> drunk

> > > and went

> > > to bed and had a cough episode and she threw up all over, Her

> > > roommates mention

> > > that they didn't know too much about the disease but they knew it

> was

> > > fatal

> > > because ie's brother was 6 when he died of CF. It's good to

> be

> > > mention CF

> > > but if she is trying to commit suicide on national TV because of

> cf.

> > > Then we

> > > don't need that kind of publicity.The show is on MTV called Real

> world

> > > .Tues at

> > > 9.00 central 10 eastern.

> > > Debbie I. 's mom 4 w/cf

> > >

> > >

> > >

[Guest guest]

Gale,

this is is address. It's my home address, that makes it easier for me,

rather than sending it to the hospital. My parents or pick it up

for me.

Natalia Boguslawska

717 Eglinton Ave W. Apt. 507

Toronto, Ontario

M5N 1C9

Canada