Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Welcome to Breathe Support. I'm glad you've joined us here though I am sorry you had reason to. I'm very interested to hear more about your experience with the Thalidomide trial. Please share as much information as you feel comfortable with. You are correct when you say there is a lot of 'chit chat' in this group. This is a very active support group for those who have been diagnosed with one of the many types of pulmonary fibrosis. Not everyone here has IPF but we all have some type of interstitial lung disease which has adversely affected our health and ability to function in the world. You can search the message archives for specific topics. http://health.groups.yahoo.com/group/Breathe-Support/messages Though the Yahoo search function does not always work the way we would like it to. You can also ask any questions that you may have in mind. Chances are there is someone else (or more than one someone) who has grappled with the question. Once again, welcome we are glad you are here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sat, January 30, 2010 2:13:11 PMSubject: Re: Beth/snow As a newcomer, I read a lot of chit chat that has nothing to do with IPF. Is there a way to find specific topics of discussion re the disease?I took part in a drug study thru s-Hopkins using the drug Thalidomide. It controls the cough in many of us. Will be happy to share info.Have specific questions of my own.spec> >> > Hey Barb,> > It's currently sleeting here and we've got about 7 or 8 inches of> snow on the ground. It's pretty, just don't make me go out in it. (Let's> not even discuss my dog walking adventure this morning. It wasn't> pretty)> > The show was really great. Abba was HUGE when I was in high school> so it brought back tons of memories for the three of us. (I hadn't seen> the movie) We've had the tickets for over a month so short of the> show being cancelled we were going. The theater is downtown in> Durham, maybe 5 or 6 miles away. We were home before the roads got too> bad.> >> > Stay warm and snug. I don't anticipate being able to go much of> anywhere till later tomorrow at the earliest.Â> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > Â> > Â> >> >> >> >> > ____________ _________ _________ __> > From: Barbara McD bamny@> > To: Breathe-Support@ yahoogroups. com> > Sent: Sat, January 30, 2010 9:51:39 AM> > Subject: Re: Beth/snow> >> > Â> > MB -> >> > Wow - that was brave of you. Once I hear "snow", I get inside> and stay there. But I'm sure you did not want to miss "Mama Mia" -> that would be a tough choice to make.> >> > Here we now have 8 inches of snow on the ground and air temp is 32> degrees. A light rain is falling, forming a crust on the snow. > Sigh. It ain't over yet!> >> > B> > Â> > Barbara McD> > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever> > Beautiful Western NC> > Â> >> >  Â> > Counting my blessings: #35 - Dogs playing in the snow.> > Consider what a great forest is set ablaze by a small spark. (> 3:5)> > Â> >> >> >> >> > ____________ _________ _________ __> > From: Beth mbmurtha (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Fri, January 29, 2010 11:59:36 PM> > Subject: Re: Beth/snow> >> > Â> > Hi Barb,> > I actually just got home. My sister and I along with a friend went out> for dinner and then to see Mama Mia at the Durham Performing Arts> Center. It was a wonderful fun evening, though the snow added an> element of anxiety we managed to get home fine.> >> > It is snowing now with about 3 inches or so on the ground. They are> saying we'll get 8-12 inches....we' ll see. It's still snowing up in> Boone, I think they're supposed to get 14 or 15 inches. Yikes. This> winter just won't quit.> >> > Stay warm and safe and lets just hope the power stays on!> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > Â> > Â> >> >> >> >> > ____________ _________ _________ __> > From: Barbara McD bamny (AT) yahoo (DOT) com>> > To: breathe-support@ yahoogroups. com> > Sent: Fri, January 29, 2010 6:06:55 PM> > Subject: Beth/snow> >> >> >> > Hey Beth - are you getting snow? We gotten 4 1/2 inches> in the last couple of hours, with no stopping in sight. And> it's wet, so I'm sure lots of people around here are going to have power> outages.  They are still trying to clean up after the last> storm. Are you getting snowed on? How about your son in Boone?> >> > B> > Â> > Barbara McD> > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever> > Beautiful Western NC> > Â> >> >  Â> > Counting my blessings: #34 - Hot chocolate> > Consider what a great forest is set ablaze by a small spark. (> 3:5)> > Â> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Spec I'd also say as you get further in you'll find the chit-chat is very very much directly related to the disease, to the issue of living with it. The talk about the snow and how it affects us is relevant as is in some ways my trip to NC as a reminder that three years in I'm still able to make thousand mile trips in my van with my oxygen, alone. That not only am I going to Duke for some additional opinion but I'll see relatives and others. Read about Peggy's hijinks with her Hoveround too. They are so beautiful as a reminder of how a woman who is further advance can utilize hospice and everything else available and still find quality in life. Knowing that Peggy is smiling gives me so much comfort in looking ahead to my future. I know you weren't being critical, but just searching for more specific information. At the same time, I just want to let you know up front, after your diagnosis, that there's still a lot of joy and pleasure to be had. > > > > > > Hey Barb, > > > It's currently sleeting here and we've got about 7 or 8 inches of > > snow on the ground. It's pretty, just don't make me go out in it. (Let's > > not even discuss my dog walking adventure this morning. It wasn't > > pretty) > > > The show was really great. Abba was HUGE when I was in high school > > so it brought back tons of memories for the three of us. (I hadn't seen > > the movie) We've had the tickets for over a month so short of the > > show being cancelled we were going. The theater is downtown in > > Durham, maybe 5 or 6 miles away. We were home before the roads got too > > bad. > > > > > > Stay warm and snug. I don't anticipate being able to go much of > > anywhere till later tomorrow at the earliest. > > >  > > > Beth > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > >  > > >  > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Barbara McD bamny@ > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Sat, January 30, 2010 9:51:39 AM > > > Subject: Re: Beth/snow > > > > > >  > > > MB - > > > > > > Wow - that was brave of you. Once I hear " snow " , I get inside > > and stay there. But I'm sure you did not want to miss " Mama Mia " - > > that would be a tough choice to make. > > > > > > Here we now have 8 inches of snow on the ground and air temp is 32 > > degrees. A light rain is falling, forming a crust on the snow. > > Sigh. It ain't over yet! > > > > > > B > > >  > > > Barbara McD > > > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever > > > Beautiful Western NC > > >  > > > > > >   > > > Counting my blessings: #35 - Dogs playing in the snow. > > > Consider what a great forest is set ablaze by a small spark. ( > > 3:5) > > >  > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Fri, January 29, 2010 11:59:36 PM > > > Subject: Re: Beth/snow > > > > > >  > > > Hi Barb, > > > I actually just got home. My sister and I along with a friend went out > > for dinner and then to see Mama Mia at the Durham Performing Arts > > Center. It was a wonderful fun evening, though the snow added an > > element of anxiety we managed to get home fine. > > > > > > It is snowing now with about 3 inches or so on the ground. They are > > saying we'll get 8-12 inches....we' ll see. It's still snowing up in > > Boone, I think they're supposed to get 14 or 15 inches. Yikes. This > > winter just won't quit. > > > > > > Stay warm and safe and lets just hope the power stays on! > > >  > > > Beth > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > >  > > >  > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Barbara McD bamny (AT) yahoo (DOT) com> > > > To: breathe-support@ yahoogroups. com > > > Sent: Fri, January 29, 2010 6:06:55 PM > > > Subject: Beth/snow > > > > > > > > > > > > Hey Beth - are you getting snow? We gotten 4 1/2 inches > > in the last couple of hours, with no stopping in sight. And > > it's wet, so I'm sure lots of people around here are going to have power > > outages.  They are still trying to clean up after the last > > storm. Are you getting snowed on? How about your son in Boone? > > > > > > B > > >  > > > Barbara McD > > > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever > > > Beautiful Western NC > > >  > > > > > >   > > > Counting my blessings: #34 - Hot chocolate > > > Consider what a great forest is set ablaze by a small spark. ( > > 3:5) > > >  > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Bruce, I for one would go crazy (more than I already am) without a post now and then that does nothing more than make me smile or laugh. We get to know each other so well even through this virtual world and I welcome the chit chat. Spec...... I hope you will come to enjoy it too.....welcome! Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 spec re: the chit chat with this disease we need lots of chit chat to lighten our load Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: SpecTo: Breathe-Support Date: Saturday, January 30, 2010, 4:08 PM SpecI'd also say as you get further in you'll find the chit-chat is veryvery much directly related to the disease, to the issue of living withit. The talk about the snow and how it affects us is relevant as is insome ways my trip to NC as a reminder that three years in I'm still ableto make thousand mile trips in my van with my oxygen, alone. That notonly am I going to Duke for some additional opinion but I'll seerelatives and others. Read about Peggy's hijinks with her Hoveround too.They are so beautiful as a reminder of how a woman who is furtheradvance can utilize hospice and everything else available and still findquality in life. Knowing that Peggy is smiling gives me so much comfortin looking ahead to my future.I know you weren't being critical, but just searching for more specificinformation. At the same time, I just want to let you know up front,after your diagnosis, that there's still a lot of joy and pleasure to behad.> > >> > > Hey Barb,> > > It's currently sleeting here and we've got about 7 or 8Âinches of> > snow on the ground. It's pretty, just don't make me go out in it.(Let's> > not even discuss my dog walking adventure this morning. Itwasn't> > pretty)> > > The show was really great. Abba was HUGE when I was in highschool> > so it brought back tons of memories for the three of us. (I hadn'tseen> > the movie) We've had the tickets for over a month so short ofthe> > show being cancelled we were going. The theater isÂdowntown in> > Durham, maybe 5 or 6 miles away. We were home before the roads gottoo> > bad.> > >> > > Stay warm and snug. I don't anticipate being able to go much of> > anywhere till later tomorrow at the earliest.Â> > > Â> > > Beth> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > Â> > > Â> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Barbara McD bamny@> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Sat, January 30, 2010 9:51:39 AM> > > Subject: Re: Beth/snow> > >> > > Â> > > MB -> > >> > > Wow - that was brave of you. Once I hear "snow", I getinside> > and stay there. But I'm sure you did not want to miss "MamaMia" -> > that would be a tough choice to make.> > >> > > Here we now have 8 inches of snow on the ground and air temp is 32> > degrees. A light rain is falling, forming a crust on thesnow.Â> > Sigh. It ain't over yet!> > >> > > B> > > Â> > > Barbara McD> > > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever> > > Beautiful Western NC> > > Â> > >> > >  Â> > > Counting my blessings: #35 - Dogs playing in the snow.> > > Consider what a great forest is set ablaze by a small spark.(> > 3:5)> > > Â> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Fri, January 29, 2010 11:59:36 PM> > > Subject: Re: Beth/snow> > >> > > Â> > > Hi Barb,> > > I actually just got home. My sister and I along with a friend wentout> > for dinner and then to see Mama Mia at the Durham Performing Arts> > Center. It was a wonderful fun evening, though the snow addedan> > element of anxiety we managed to get home fine.> > >> > > It is snowing now with about 3 inches or so on the ground. Theyare> > saying we'll get 8-12 inches....we' ll see. It's still snowingup in> > Boone, I think they're supposed to get 14 or 15 inches. Yikes. This> > winter just won't quit.> > >> > > Stay warm and safe and lets just hope the power stays on!> > > Â> > > Beth> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > Â> > > Â> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Barbara McD bamny (AT) yahoo (DOT) com>> > > To: breathe-support@ yahoogroups. com> > > Sent: Fri, January 29, 2010 6:06:55 PM> > > Subject: Beth/snow> > >> > >> > >> > > Hey Beth - are you getting snow? We gotten 4 1/2 inches> > in the last couple of hours, with no stopping in sight.ÂAnd> > it's wet, so I'm sure lots of people around here are going to havepower> > outages.  They are still trying to clean up after thelast> > storm. Are you getting snowed on? How about your son inBoone?> > >> > > B> > > Â> > > Barbara McD> > > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever> > > Beautiful Western NC> > > Â> > >> > >  Â> > > Counting my blessings: #34 - Hot chocolate> > > Consider what a great forest is set ablaze by a small spark.(> > 3:5)> > > Â> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 I couldn't agree more that for those of us who have limited amount of time and a desire to learn more about our disease and ways to live with it the chit chat is just too time consuming. I know I've missed info that's been buried in messages with a misleading subject. I suggest that when a new topic is introduced it should be in a separate post with a new subject title. This post is a good example of what I see as a problem...it includes weather and travel info that is not related to ohe subject topic. Peace, Ted, 78, IL, IPF March 09 > > > > > > > > Hey Barb, > > > > It's currently sleeting here and we've got about 7 or 8 > inches of > > > snow on the ground. It's pretty, just don't make me go out in it. > (Let's > > > not even discuss my dog walking adventure this morning. It > wasn't > > > pretty) > > > > The show was really great. Abba was HUGE when I was in high > school > > > so it brought back tons of memories for the three of us. (I hadn't > seen > > > the movie) We've had the tickets for over a month so short of > the > > > show being cancelled we were going. The theater is > downtown in > > > Durham, maybe 5 or 6 miles away. We were home before the roads got > too > > > bad. > > > > > > > > Stay warm and snug. I don't anticipate being able to go much of > > > anywhere till later tomorrow at the earliest. > > > >  > > > > Beth > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > >  > > > >  > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > From: Barbara McD bamny@ > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Sat, January 30, 2010 9:51:39 AM > > > > Subject: Re: Beth/snow > > > > > > > >  > > > > MB - > > > > > > > > Wow - that was brave of you. Once I hear " snow " , I get > inside > > > and stay there. But I'm sure you did not want to miss " Mama > Mia " - > > > that would be a tough choice to make. > > > > > > > > Here we now have 8 inches of snow on the ground and air temp is 32 > > > degrees. A light rain is falling, forming a crust on the > snow. > > > Sigh. It ain't over yet! > > > > > > > > B > > > >  > > > > Barbara McD > > > > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever > > > > Beautiful Western NC > > > >  > > > > > > > >   > > > > Counting my blessings: #35 - Dogs playing in the snow. > > > > Consider what a great forest is set ablaze by a small spark. > ( > > > 3:5) > > > >  > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Fri, January 29, 2010 11:59:36 PM > > > > Subject: Re: Beth/snow > > > > > > > >  > > > > Hi Barb, > > > > I actually just got home. My sister and I along with a friend went > out > > > for dinner and then to see Mama Mia at the Durham Performing Arts > > > Center. It was a wonderful fun evening, though the snow added > an > > > element of anxiety we managed to get home fine. > > > > > > > > It is snowing now with about 3 inches or so on the ground. They > are > > > saying we'll get 8-12 inches....we' ll see. It's still snowing > up in > > > Boone, I think they're supposed to get 14 or 15 inches. Yikes. This > > > winter just won't quit. > > > > > > > > Stay warm and safe and lets just hope the power stays on! > > > >  > > > > Beth > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > >  > > > >  > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > From: Barbara McD bamny (AT) yahoo (DOT) com> > > > > To: breathe-support@ yahoogroups. com > > > > Sent: Fri, January 29, 2010 6:06:55 PM > > > > Subject: Beth/snow > > > > > > > > > > > > > > > > Hey Beth - are you getting snow? We gotten 4 1/2 inches > > > in the last couple of hours, with no stopping in sight. > And > > > it's wet, so I'm sure lots of people around here are going to have > power > > > outages.  They are still trying to clean up after the > last > > > storm. Are you getting snowed on? How about your son in > Boone? > > > > > > > > B > > > >  > > > > Barbara McD > > > > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever > > > > Beautiful Western NC > > > >  > > > > > > > >   > > > > Counting my blessings: #34 - Hot chocolate > > > > Consider what a great forest is set ablaze by a small spark. > ( > > > 3:5) > > > >  > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 Oh Gosh, the problems of being Human & needing the comfort of Chit Chat..I for one use Google to great advantage when I'm in a Hurry to educate myself about any aspect of my health concerns. I certanily don't think of looking in this Forum for expert Medical Opinion & Research although I've often been interested in discussions that come our way. I appreciate the many links & new perspectives that send me off hitting on Mr Google yet again...... People on this Forum are Patients NOT Medical Experts BUT they do know a heck of a lot about getting through the journey & for most of us that means Reaching out to each other in the Form of Chit Chat! From tinte to time we Have all tried to get more 'switched on' with our Subject Headings but it only stretches so far & we revert to what we all find most comfortable. We just tend to get into Conversations with each other...come what may! Sorry Ted, we'll try, but I bet we won't last long with a more respectable Scientific Approach... I LOVE it! Learning Chaotically! Love you Air Family! in Oz > > > > >> > > > > Hey Barb,> > > > > It's currently sleeting here and we've got about 7 or 8Â> > inches of> > > > snow on the ground. It's pretty, just don't make me go out in it.> > (Let's> > > > not even discuss my dog walking adventure this morning. It> > wasn't> > > > pretty)> > > > > The show was really great. Abba was HUGE when I was in high> > school> > > > so it brought back tons of memories for the three of us. (I hadn't> > seen> > > > the movie) We've had the tickets for over a month so short of> > the> > > > show being cancelled we were going. The theater isÂ> > downtown in> > > > Durham, maybe 5 or 6 miles away. We were home before the roads got> > too> > > > bad.> > > > >> > > > > Stay warm and snug. I don't anticipate being able to go much of> > > > anywhere till later tomorrow at the earliest.Â> > > > > Â> > > > > Beth> > > > > Moderator> > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > Â> > > > > Â> > > > >> > > > >> > > > >> > > > >> > > > > ____________ _________ _________ __> > > > > From: Barbara McD bamny@> > > > > To: Breathe-Support@ yahoogroups. com> > > > > Sent: Sat, January 30, 2010 9:51:39 AM> > > > > Subject: Re: Beth/snow> > > > >> > > > > Â> > > > > MB -> > > > >> > > > > Wow - that was brave of you. Once I hear "snow", I get> > inside> > > > and stay there. But I'm sure you did not want to miss "Mama> > Mia" -> > > > that would be a tough choice to make.> > > > >> > > > > Here we now have 8 inches of snow on the ground and air temp is 32> > > > degrees. A light rain is falling, forming a crust on the> > snow.Â> > > > Sigh. It ain't over yet!> > > > >> > > > > B> > > > > Â> > > > > Barbara McD> > > > > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever> > > > > Beautiful Western NC> > > > > Â> > > > >> > > > >  Â> > > > > Counting my blessings: #35 - Dogs playing in the snow.> > > > > Consider what a great forest is set ablaze by a small spark.> > (> > > > 3:5)> > > > > Â> > > > >> > > > >> > > > >> > > > >> > > > > ____________ _________ _________ __> > > > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > > > To: Breathe-Support@ yahoogroups. com> > > > > Sent: Fri, January 29, 2010 11:59:36 PM> > > > > Subject: Re: Beth/snow> > > > >> > > > > Â> > > > > Hi Barb,> > > > > I actually just got home. My sister and I along with a friend went> > out> > > > for dinner and then to see Mama Mia at the Durham Performing Arts> > > > Center. It was a wonderful fun evening, though the snow added> > an> > > > element of anxiety we managed to get home fine.> > > > >> > > > > It is snowing now with about 3 inches or so on the ground. They> > are> > > > saying we'll get 8-12 inches....we' ll see. It's still snowing> > up in> > > > Boone, I think they're supposed to get 14 or 15 inches. Yikes. This> > > > winter just won't quit.> > > > >> > > > > Stay warm and safe and lets just hope the power stays on!> > > > > Â> > > > > Beth> > > > > Moderator> > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > Â> > > > > Â> > > > >> > > > >> > > > >> > > > >> > > > > ____________ _________ _________ __> > > > > From: Barbara McD bamny (AT) yahoo (DOT) com>> > > > > To: breathe-support@ yahoogroups. com> > > > > Sent: Fri, January 29, 2010 6:06:55 PM> > > > > Subject: Beth/snow> > > > >> > > > >> > > > >> > > > > Hey Beth - are you getting snow? We gotten 4 1/2 inches> > > > in the last couple of hours, with no stopping in sight.Â> > And> > > > it's wet, so I'm sure lots of people around here are going to have> > power> > > > outages.  They are still trying to clean up after the> > last> > > > storm. Are you getting snowed on? How about your son in> > Boone?> > > > >> > > > > B> > > > > Â> > > > > Barbara McD> > > > > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever> > > > > Beautiful Western NC> > > > > Â> > > > >> > > > >  Â> > > > > Counting my blessings: #34 - Hot chocolate> > > > > Consider what a great forest is set ablaze by a small spark.> > (> > > > 3:5)> > > > > Â> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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