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

[Guest guest]

Since I've been on here the main thing that I've learned about PF is that the only thing that's typical is that no one is typical

Love Ze xx>> 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.>