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KyleesNan 
11:40pm, August 6, 2009
Probably won't get the results for about a week. I told a friend here that I was worried about feeling to good because of my disability claim. She reminded me how important it was to remain on my regular meds for the integrity of the test so I did. Shouldn't have worried about it. This whole last week my neighbors on both side have been barbequing. I try not to go out when they do because the smoke blows right to where I would have to walk to and from my car. The smoke would be out there when I got home from work. Some of it gets in the house somehow and really affects me badly. Today I could tell I didn't do well at all, was definately a bad breathing day. I'll be glad when the barbarques are put away for the season. I can't handle smoke at all. I guess I need to get a mask for barbeque days. What an irony, smoke was my life for 40 years.
Comments
Oh I'm with you on that one, sister! Smoke from grills and fireplaces almost does me in. I'm so glad we got a gas grill a few years ago. Makes a big difference. But I have been known to carry one of those ear-loop masks in the glove box of the car, so that if we are driving through heavy smoke from grills or leaf fires, I can put it on. It does help. And yes, It does find a way to seep into the house. I can never open my windows in the summertime.
Otherwise, I hope you are doing ok. Your disability claim will consider much more that just how good you are feeling at the moment, so enjoy!
Love you,
Sue
Sue825
good morning KyleesNan I understand what you are saying the smoke also bothers me as I have copd among the other cancer, but I'm so far dealing with it this summer. have a great day.
jenive
Hope your PFT went as expected. I found the one I had a few weeks ago for the study, the most extensive and difficult one that I have ever had. The research nurse told me one of their study patients actually passed out while doing the test. I didn't feel so bad that I just cried in frustration because it was impossible to do some of the things the tech asked.
But my lungs got a good workout.
I would think that your disability would not be affected either way because the damage to your lungs is permanent and the trial (dependent on the outcome) is just that, a trial. I am praying for good things to come out of the trials but I will settle for any advance in research that comes from it.
I carry one of those loop over the ear masks, that Sue mentioned, in my small purse that I carry everytime I leave the house.
Shirley, thanks for your effort in this study. It will definitely help people in the long run.
Hugs,
Anna
PearlB
Hi, We don't have anyone that is bbqing so not a problem. I have IPF. The test for me wasn't so bad but I too had difficulty completing some of the instructions but I guess that's how they measure where you are. I have had a lung biopsy which was not anything I would want to do again. I have been diagnosed since a year ago last Fed. I am on oxygen 4 ltrs 24/7. Still groc shop and cook and do some cleaning and laundry. Spend quite a bit of time quilting. Live is good actually. Breathing is hard sometimes so just become a couch potato on those days. My husband does all the driving. I have a used scooter we got for $180 and a second hand store that I use for shopping when the store does not have one. Seems to be working well.
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Hop you are doing as well as possible. There is another site for folks with pf and it is accessable through yahoo groups.
Have a great day Jo
thelethins
good luck on the bbq's. it s summer and people seem to love to use them. our neighbors like to use old newspaper to start theirs! it smells soooo bad it's sick.
i hope the tests come out the way you want them too. let me know when yiou hear about the valves! when do they tell you if you ahve them or not? i want to know1
as for disability...i had no problem. they asked why i didnt' apply when i was first diagnosed. so, i'm hoping your's will be as simple as mine was.
good luck and stay cool!
margaret
MamaMarg