Re: Previous polls and surveys point further out how confusing and frustrating

[Guest guest]

Absolutely or maybe or maybe not. I'm not sure. Darn, its confusing.

> >

> > 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.

> >

>