Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 , That is really good news. I also go to New Orleans or my PF treatments, however I am going to Tulane. I chose Tulane 4 & 1/2 years ago after being doagnosed. It is one of the 22 centers of excellence involved in research through the National Institute of health. Although I did try to take part in one trial, my lung function at the time was too low to be icluded. Since that time I have improved somewhat. I live in Coffeeville MS, so New Orleans is a long trip, but Iwant to stay near where the realesearch is being done. I wrote this because I had noiced you said you wern't exactly happy with your pumonologist. Since I live so far from Tulane, I havethought about finding a pulmonologist closern who could wor with Dr. Lsky. I hope you and yor son and famiy have a woerful Thanksgiving. Recenly I have found so many more thingse thankful for. Jerry/Missisppi/4/IPF/dx April 05Who believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 , How are you now?How does it feel when one ear is giving you these problems , i think these thing sare sometimes worse tha 'pain'You make light of everything and so it sounds ok Your brave attitude and sense of humour help to go through these things but I am sure one cannot remain in that mode all the time. I hope your problem gets resolved soon, take care, All the best and Love Geeta > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Another round of pft's and a visit to my pulmo....I'm stable! > My > > > diffusion is back where it had been (last time's lousy result > > was > > > a fluke) and I remain stable. My next appointment isn't till > > March > > > so I've got a few months to chill. > > > > > > I am very happy this afternoon. > > > > > > Thankfully yours! > > > > > > >  > > > > > > Beth > > > > > > Moderator > > > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > >  > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 Hi Gita, I wouoldn't say I was 'brave'..... more that I've always used humour to get me through the 'tough stuff'.... Having a hearing loss plus Tinnitus in one ear is pretty weird but I reckon it'd be worse to have both ears 'out'. Basically I can't hear in stereo any more which is particualrly frustrating 'cos I'm missing the deep, full sonorous tones of orchestral music. That's the worst bit.....my dud ear just loops in 'feedback' & an echo which spoils things. I get around it by only using one earplug from my MP3 player ..it gives me 'Mono' sound but cuts out the nast echo. The very worst is when the noise in my ear suddenly changes pitch from being the sound of the ocean to becoming a blinkin SIREN. Early one morning I awoke wondering what had happened in the Street to cause a Siren to be going off...it was my rotten EAR! luckily that has only happened a couple of times. I am worried that I'll get stuck with an awful sound. Oddly the sounds are worse AFTER I have MRI's. The pitch also cahnges when I yawn...really Weird! By comparision with that my Ocean noise is quite bearable except when I'm tired & irritable. I'm not as easily irritated these days as I was i the early months..I must be adjusting . As for the hearing loss..it's hard to cook & yak on the phone now that I have to use my Right ear for chatting....hard to write messages & hold the phone up at the same time too....unfortunately my Hubby has a really soft, very deep low voice (Right in the low tone range where my hearing loss is worst). He's getting pretty sick of the need to repeat himself or come around to my 'good' ear. We're a comedy of Erors these days! Other than that the reality is that I can't stand noisy restaurants, movie theatres are too loud & cause too much loop back, parties etc..soooooo it means a pretty quiet life. Just as well that doesn't bother me in the slightest....give me a good book any day! Now e-mails cause no hassles at all...typing away comes naturally to me...isn't THAT just as well...no nasty loop-back sounds from keyboards..... Cheers to you Gita...hope you are travellin' well at the moment. Tell me some more about your daily life in Mumbai...I want to picture you more clearly. Do you cook...how do you spend your day??????? I'm still doing a Tai Chi Class every Monday...I can't remember the intricate moves well enough to do it solo at home yet. I really love it..it causes me to slow down & really control my body movements. It gives me great pleasure. Love, > > > > > > > > Â> > > > > > > >> > > > > > >> > > > > > > >> > > > > > >> > > > > > > Another round of pft's and a visit to my pulmo....I'm stable!> > My> > > > diffusion is back where it had been (last time's lousy resultÂ> > > was> > > > a fluke) and I remain stable. My next appointment isn't till> > > March> > > > so I've got a few months to chill.Â> > > > > > > I am very happy this afternoon.> > > > > > > Thankfully yours!> > > > > > > > Â> > > > > > > Beth> > > > > > > Moderator> > > > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > Â> > > > > > > Â> > > > > > >> > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > > >> > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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