Re:Burcie, Brucie, Brucie... CHANGE TO CONSTITUTION

[Guest guest]

Just trying to correct the millions who thought I actually had the

power to change the requirements to become a pulmonologist. Next, I'm

going to change the constitution....in fact right now, I think.

I propose a change to the US Constitution (sorry Zena, , May)

giving total authority for running the country to the current active

members of this board. This is effective immediately.

I find it

> > > > interesting to get a picture of our group and various

> > > > > issues we've faced. The polls or surveys show as we all

know

> that

> > > > > there are no right answers and no absolutes or

consistencies.

> > > > >

> > > > > Sleep Apnea

> > > > >

> > > > > Leanne ran a poll asking if we'd been tested for sleep

> apnea. 52%

> > > > > said yes and 48% no. Right down the middle. Does that mean

> the

> > > > other

> > > > > 48% have no problems or just they haven't been tested. Of

> those

> > > > > tested, how many are on CPAPS or just taking oxygen for

> sleep.

> > > > >

> > > > > Advil

> > > > >

> > > > > There was a poll as to what percent had used Advil for

> > coughing or

> > > > > shortness of breath. The results were odd as all four who

> said

> > they

> > > > > had tried it said it had been successful in helping. No one

> said

> > > > they

> > > > > had tried it unsuccessfully. The vast majority (15) hadn't

> > tried it

> > > > > for those symptoms.

> > > > >

> > > > > Coke/Pepsi

> > > > >

> > > > > Ok, we knew going in this wouldn't be close....lol

> > > > >

> > > > > Prednisone

> > > > >

> > > > > 37% said they were on it and had seen a benefit. 11% on it

> > with no

> > > > > benefit. 28% have come off it or were coming off at the

> time. 20%

> > > > > chose to not try it. Very mixed as we would have expected.

> I

> > think

> > > > it

> > > > > shows why people need to learn and make their own decisions

> as it

> > > > > clearly shows whats right for one isn't for others. Still

> with

> > all

> > > > > the negatives (and I'm among the haven't and won't group),

> 37%

> > are

> > > > on

> > > > > it and feel its benefitting them.

> > > > >

> > > > > Diagnosis

> > > > >

> > > > > 52% here feel totally confident in their diagnosis as to

> > > > specifically

> > > > > which form of ILD they have. 31% have some confidence but

> not so

> > > > > sure. 17% are completely in the land of confusion and

> > frustration.

> > > > > Tell me any other disease in which only half would feel

> confident

> > > > of

> > > > > their diagnosis. And this doesn't even account for what the

> > > > confident

> > > > > 52% had to go through to get there. Most diseases, you

have a

> > > > simple

> > > > > test or two and have your answer. Here's the disease,

here's

> the

> > > > > treatment. Come back in a year. A good percentage of those

> of us

> > > > > totally confident had to go through a very invasive

surgery.

> > > > >

> > > > > When its easier to get a concensus on Coke versus Pepsi

than

> > > > anything

> > > > > related to our disease, that tells you something. It just

> shows

> > > > that

> > > > > for everything we know about this disease there are

hundreds

> of

> > > > > things we don't know. All the more reason we need each

other.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ---------------------------------

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> > > >

> > >

> >

>