Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 MB, I am so so so happy you are still living with the horses.. if ya can just get the caca off your hands you'll be as good as new.. Good news about the PFTs too. Stay warm and well. This sick stuff will kill ya.. lol not funny..... Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 MB, I am so so so happy you are still living with the horses.. if ya can just get the caca off your hands you'll be as good as new.. Good news about the PFTs too. Stay warm and well. This sick stuff will kill ya.. lol not funny..... Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 MB, I am so so so happy you are still living with the horses.. if ya can just get the caca off your hands you'll be as good as new.. Good news about the PFTs too. Stay warm and well. This sick stuff will kill ya.. lol not funny..... Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 MB I know you're glad today is over. I'm use to the pointy heads trying to figure it all our and it seems they may be getting real close on you. I think people expect us to be on pins and needles waiting but I love the last sentence you wrote. I keep saying " I am as I feel, not as a pile of papers read. " So until I'm told something and told to do something, I refuse to worry. I think you are determined enough you can do that. Just enjoy the holidays. I'm glad you were able to show them the worst. Its much better than saying " last week they looked like " . And STABLE is always our favorite word. You add holidays with family and the best medical care available and it all works out well. > > Just got home from Duke and a visit with Dr. on along with a pulmonary function torture.....oops sorry I mean pulmonary function test. That flippin thing just wears me out, hate it hate it hate it. My results are very similar to the results I got in June. The spirometry portion is slightly lower but not enough to get excited about. My volumes were slightly improved over last time and my DLCO is about the same. All in all it puts my right where I like to spend my time...in the stables! > > So now the not so fun part. I have to have biopsy of the " mechanic hand " rash I have on both my hands to confirm the dermatomyositis. It was in full bloom today and Dr. on finally got a chance to see it at it's worst. I had explained to him how my hands blister when they are in water for any length of time. So today I sat with my hands in a basin of water for 10 minutes so he could see what I was talking about. He whistled in amazement when I took my hands out and had about 2 dozen tiny blisters on the palms of my hands. I also had yet more bloodwork done today. Dracula lives! > > So now all the pointy headed doctors will put their pointy little heads together and decide what to do with weird old me. I let Dr. on know that whatever they want me to do, I'm not starting till after Christmas. > > So that's my story and I'm stickin to it. I'm glad it's over and I refuse to worry about it for a single second. > > Beth in North Carolina > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > " Maybe Christmas, " he thought, " doesn't come from a store. Maybe Christmas... perhaps... means a little bit more. " > Dr. Seuss > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 MB I know you're glad today is over. I'm use to the pointy heads trying to figure it all our and it seems they may be getting real close on you. I think people expect us to be on pins and needles waiting but I love the last sentence you wrote. I keep saying " I am as I feel, not as a pile of papers read. " So until I'm told something and told to do something, I refuse to worry. I think you are determined enough you can do that. Just enjoy the holidays. I'm glad you were able to show them the worst. Its much better than saying " last week they looked like " . And STABLE is always our favorite word. You add holidays with family and the best medical care available and it all works out well. > > Just got home from Duke and a visit with Dr. on along with a pulmonary function torture.....oops sorry I mean pulmonary function test. That flippin thing just wears me out, hate it hate it hate it. My results are very similar to the results I got in June. The spirometry portion is slightly lower but not enough to get excited about. My volumes were slightly improved over last time and my DLCO is about the same. All in all it puts my right where I like to spend my time...in the stables! > > So now the not so fun part. I have to have biopsy of the " mechanic hand " rash I have on both my hands to confirm the dermatomyositis. It was in full bloom today and Dr. on finally got a chance to see it at it's worst. I had explained to him how my hands blister when they are in water for any length of time. So today I sat with my hands in a basin of water for 10 minutes so he could see what I was talking about. He whistled in amazement when I took my hands out and had about 2 dozen tiny blisters on the palms of my hands. I also had yet more bloodwork done today. Dracula lives! > > So now all the pointy headed doctors will put their pointy little heads together and decide what to do with weird old me. I let Dr. on know that whatever they want me to do, I'm not starting till after Christmas. > > So that's my story and I'm stickin to it. I'm glad it's over and I refuse to worry about it for a single second. > > Beth in North Carolina > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > " Maybe Christmas, " he thought, " doesn't come from a store. Maybe Christmas... perhaps... means a little bit more. " > Dr. Seuss > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 MB I know you're glad today is over. I'm use to the pointy heads trying to figure it all our and it seems they may be getting real close on you. I think people expect us to be on pins and needles waiting but I love the last sentence you wrote. I keep saying " I am as I feel, not as a pile of papers read. " So until I'm told something and told to do something, I refuse to worry. I think you are determined enough you can do that. Just enjoy the holidays. I'm glad you were able to show them the worst. Its much better than saying " last week they looked like " . And STABLE is always our favorite word. You add holidays with family and the best medical care available and it all works out well. > > Just got home from Duke and a visit with Dr. on along with a pulmonary function torture.....oops sorry I mean pulmonary function test. That flippin thing just wears me out, hate it hate it hate it. My results are very similar to the results I got in June. The spirometry portion is slightly lower but not enough to get excited about. My volumes were slightly improved over last time and my DLCO is about the same. All in all it puts my right where I like to spend my time...in the stables! > > So now the not so fun part. I have to have biopsy of the " mechanic hand " rash I have on both my hands to confirm the dermatomyositis. It was in full bloom today and Dr. on finally got a chance to see it at it's worst. I had explained to him how my hands blister when they are in water for any length of time. So today I sat with my hands in a basin of water for 10 minutes so he could see what I was talking about. He whistled in amazement when I took my hands out and had about 2 dozen tiny blisters on the palms of my hands. I also had yet more bloodwork done today. Dracula lives! > > So now all the pointy headed doctors will put their pointy little heads together and decide what to do with weird old me. I let Dr. on know that whatever they want me to do, I'm not starting till after Christmas. > > So that's my story and I'm stickin to it. I'm glad it's over and I refuse to worry about it for a single second. > > Beth in North Carolina > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > " Maybe Christmas, " he thought, " doesn't come from a store. Maybe Christmas... perhaps... means a little bit more. " > Dr. Seuss > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008  MB ... You just keep on keepin' on girl and enjoy the holidays as I know you will. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: PFT & Doctor visit MB, I am so so so happy you are still living with the horses.. if ya can just get the caca off your hands you'll� be as good as new..� Good news about the PFTs too.� Stay warm and well. This sick stuff will kill ya.. �lol �not funny..... Love & Prayers, Peggy Florida, �IPF/UIP 2004 "I believe that friends are quiet angels�who lift us to our feet,� when our wings�have trouble remembering how to fly."� Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Peggy, Thanks! I'll stay here in the stable with the horses! Come to think of it, December is a good time of year to be in a stable isn't it? LOL No fever again today huh? Hopefully the worst of this is over for you. Just keep resting ok? Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Tuesday, December 2, 2008 4:16:45 PMSubject: Re: PFT & Doctor visitMB, I am so so so happy you are still living with the horses.. if ya can just get the caca off your hands you'll be as good as new.. Good news about the PFTs too. Stay warm and well. This sick stuff will kill ya.. lol not funny..... Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Peggy, Thanks! I'll stay here in the stable with the horses! Come to think of it, December is a good time of year to be in a stable isn't it? LOL No fever again today huh? Hopefully the worst of this is over for you. Just keep resting ok? Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Tuesday, December 2, 2008 4:16:45 PMSubject: Re: PFT & Doctor visitMB, I am so so so happy you are still living with the horses.. if ya can just get the caca off your hands you'll be as good as new.. Good news about the PFTs too. Stay warm and well. This sick stuff will kill ya.. lol not funny..... Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Peggy, Thanks! I'll stay here in the stable with the horses! Come to think of it, December is a good time of year to be in a stable isn't it? LOL No fever again today huh? Hopefully the worst of this is over for you. Just keep resting ok? Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Tuesday, December 2, 2008 4:16:45 PMSubject: Re: PFT & Doctor visitMB, I am so so so happy you are still living with the horses.. if ya can just get the caca off your hands you'll be as good as new.. Good news about the PFTs too. Stay warm and well. This sick stuff will kill ya.. lol not funny..... Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Bruce, I consider myself very very blessed and fortunate. Things worked out relatively well today and hopefully the doctors will get what they need to be able to come up with a plan. Dr. on does seem to feel that the disease process is becoming a bit more active again (my spirometry is about 6% lower than it was in June) and he wants to nip it in the bud if possible. Found out today that I've got enough hotel points to get two free nights at the chain that I use. I'm thinking of a trip to Boone sometime before Christmas to spend a few days, see my son, visit a cherished friend and maybe do a little bit of Christmas shopping. If I spend more than 24 hours, I adjust to the altitude and can enjoy myself. I love those mountains so much! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Tuesday, December 2, 2008 4:36:04 PMSubject: Re: PFT & Doctor visit MBI know you're glad today is over. I'm use to the pointy heads trying tofigure it all our and it seems they may be getting real close on you. Ithink people expect us to be on pins and needles waiting but I love thelast sentence you wrote. I keep saying "I am as I feel, not as a pile ofpapers read." So until I'm told something and told to do something, Irefuse to worry. I think you are determined enough you can do that. Justenjoy the holidays. I'm glad you were able to show them the worst. Itsmuch better than saying "last week they looked like". And STABLE isalways our favorite word. You add holidays with family and the bestmedical care available and it all works out well.>> Just got home from Duke and a visit with Dr. on along with apulmonary function torture..... oops sorry I mean pulmonary functiontest. That flippin thing just wears me out, hate it hate it hate it. Myresults are very similar to the results I got in June. The spirometryportion is slightly lower but not enough to get excited about. Myvolumes were slightly improved over last time and my DLCO is about thesame. All in all it puts my right where I like to spend my time...inthe stables!>> So now the not so fun part. I have to have biopsy of the "mechanichand" rash I have on both my hands to confirm the dermatomyositis. Itwas in full bloom today and Dr. on finally got a chance to see itat it's worst. I had explained to him how my hands blister when they arein water for any length of time. So today I sat with my hands in a basinof water for 10 minutes so he could see what I was talking about. Hewhistled in amazement when I took my hands out and had about 2 dozentiny blisters on the palms of my hands. I also had yet more bloodworkdone today. Dracula lives!>> So now all the pointy headed doctors will put their pointy littleheads together and decide what to do with weird old me. I let Dr.on know that whatever they want me to do, I'm not starting tillafter Christmas.>> So that's my story and I'm stickin to it. I'm glad it's over and Irefuse to worry about it for a single second.>> Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>> "Maybe Christmas," he thought, "doesn't come from a store. MaybeChristmas... perhaps... means a little bit more."> Dr. Seuss> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Bruce, I consider myself very very blessed and fortunate. Things worked out relatively well today and hopefully the doctors will get what they need to be able to come up with a plan. Dr. on does seem to feel that the disease process is becoming a bit more active again (my spirometry is about 6% lower than it was in June) and he wants to nip it in the bud if possible. Found out today that I've got enough hotel points to get two free nights at the chain that I use. I'm thinking of a trip to Boone sometime before Christmas to spend a few days, see my son, visit a cherished friend and maybe do a little bit of Christmas shopping. If I spend more than 24 hours, I adjust to the altitude and can enjoy myself. I love those mountains so much! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Tuesday, December 2, 2008 4:36:04 PMSubject: Re: PFT & Doctor visit MBI know you're glad today is over. I'm use to the pointy heads trying tofigure it all our and it seems they may be getting real close on you. Ithink people expect us to be on pins and needles waiting but I love thelast sentence you wrote. I keep saying "I am as I feel, not as a pile ofpapers read." So until I'm told something and told to do something, Irefuse to worry. I think you are determined enough you can do that. Justenjoy the holidays. I'm glad you were able to show them the worst. Itsmuch better than saying "last week they looked like". And STABLE isalways our favorite word. You add holidays with family and the bestmedical care available and it all works out well.>> Just got home from Duke and a visit with Dr. on along with apulmonary function torture..... oops sorry I mean pulmonary functiontest. That flippin thing just wears me out, hate it hate it hate it. Myresults are very similar to the results I got in June. The spirometryportion is slightly lower but not enough to get excited about. Myvolumes were slightly improved over last time and my DLCO is about thesame. All in all it puts my right where I like to spend my time...inthe stables!>> So now the not so fun part. I have to have biopsy of the "mechanichand" rash I have on both my hands to confirm the dermatomyositis. Itwas in full bloom today and Dr. on finally got a chance to see itat it's worst. I had explained to him how my hands blister when they arein water for any length of time. So today I sat with my hands in a basinof water for 10 minutes so he could see what I was talking about. Hewhistled in amazement when I took my hands out and had about 2 dozentiny blisters on the palms of my hands. I also had yet more bloodworkdone today. Dracula lives!>> So now all the pointy headed doctors will put their pointy littleheads together and decide what to do with weird old me. I let Dr.on know that whatever they want me to do, I'm not starting tillafter Christmas.>> So that's my story and I'm stickin to it. I'm glad it's over and Irefuse to worry about it for a single second.>> Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>> "Maybe Christmas," he thought, "doesn't come from a store. MaybeChristmas... perhaps... means a little bit more."> Dr. Seuss> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Way to GO MB... OH & make sure someone ELSE sticks their hands in the water over Christmas won't you!!!!! Lotsa, SGIO>> Just got home from Duke and a visit with Dr. on along with a pulmonary function torture.....oops sorry I mean pulmonary function test. That flippin thing just wears me out, hate it hate it hate it. My results are very similar to the results I got in June. The spirometry portion is slightly lower but not enough to get excited about. My volumes were slightly improved over last time and my DLCO is about the same. All in all it puts my right where I like to spend my time...in the stables!> > So now the not so fun part. I have to have biopsy of the "mechanic hand" rash I have on both my hands to confirm the dermatomyositis. It was in full bloom today and Dr. on finally got a chance to see it at it's worst. I had explained to him how my hands blister when they are in water for any length of time. So today I sat with my hands in a basin of water for 10 minutes so he could see what I was talking about. He whistled in amazement when I took my hands out and had about 2 dozen tiny blisters on the palms of my hands. I also had yet more bloodwork done today. Dracula lives!> > So now all the pointy headed doctors will put their pointy little heads together and decide what to do with weird old me. I let Dr. on know that whatever they want me to do, I'm not starting till after Christmas. > > So that's my story and I'm stickin to it. I'm glad it's over and I refuse to worry about it for a single second. > > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." > Dr. Seuss> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Way to GO MB... OH & make sure someone ELSE sticks their hands in the water over Christmas won't you!!!!! Lotsa, SGIO>> Just got home from Duke and a visit with Dr. on along with a pulmonary function torture.....oops sorry I mean pulmonary function test. That flippin thing just wears me out, hate it hate it hate it. My results are very similar to the results I got in June. The spirometry portion is slightly lower but not enough to get excited about. My volumes were slightly improved over last time and my DLCO is about the same. All in all it puts my right where I like to spend my time...in the stables!> > So now the not so fun part. I have to have biopsy of the "mechanic hand" rash I have on both my hands to confirm the dermatomyositis. It was in full bloom today and Dr. on finally got a chance to see it at it's worst. I had explained to him how my hands blister when they are in water for any length of time. So today I sat with my hands in a basin of water for 10 minutes so he could see what I was talking about. He whistled in amazement when I took my hands out and had about 2 dozen tiny blisters on the palms of my hands. I also had yet more bloodwork done today. Dracula lives!> > So now all the pointy headed doctors will put their pointy little heads together and decide what to do with weird old me. I let Dr. on know that whatever they want me to do, I'm not starting till after Christmas. > > So that's my story and I'm stickin to it. I'm glad it's over and I refuse to worry about it for a single second. > > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." > Dr. Seuss> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Way to GO MB... OH & make sure someone ELSE sticks their hands in the water over Christmas won't you!!!!! Lotsa, SGIO>> Just got home from Duke and a visit with Dr. on along with a pulmonary function torture.....oops sorry I mean pulmonary function test. That flippin thing just wears me out, hate it hate it hate it. My results are very similar to the results I got in June. The spirometry portion is slightly lower but not enough to get excited about. My volumes were slightly improved over last time and my DLCO is about the same. All in all it puts my right where I like to spend my time...in the stables!> > So now the not so fun part. I have to have biopsy of the "mechanic hand" rash I have on both my hands to confirm the dermatomyositis. It was in full bloom today and Dr. on finally got a chance to see it at it's worst. I had explained to him how my hands blister when they are in water for any length of time. So today I sat with my hands in a basin of water for 10 minutes so he could see what I was talking about. He whistled in amazement when I took my hands out and had about 2 dozen tiny blisters on the palms of my hands. I also had yet more bloodwork done today. Dracula lives!> > So now all the pointy headed doctors will put their pointy little heads together and decide what to do with weird old me. I let Dr. on know that whatever they want me to do, I'm not starting till after Christmas. > > So that's my story and I'm stickin to it. I'm glad it's over and I refuse to worry about it for a single second. > > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." > Dr. Seuss> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 MB i have to agree with bruce glad they got to see it first hand.. and this is amazing.. So sorry yet you will find answers and it sounds like you have some great plans to get your mind in the right place. I agree i hate the PFTs also, and that is a kind word..is there a harsher description for hate.lol Praying my pulmo doesn't do them next week or have me walk in the office.. ugh.. anyway you take care and have fun. prayers your way.. patti,nj > > > > Just got home from Duke and a visit with Dr. on along with a > pulmonary function torture.....oops sorry I mean pulmonary function > test. That flippin thing just wears me out, hate it hate it hate it. My > results are very similar to the results I got in June. The spirometry > portion is slightly lower but not enough to get excited about. My > volumes were slightly improved over last time and my DLCO is about the > same. All in all it puts my right where I like to spend my time...in > the stables! > > > > So now the not so fun part. I have to have biopsy of the " mechanic > hand " rash I have on both my hands to confirm the dermatomyositis. It > was in full bloom today and Dr. on finally got a chance to see it > at it's worst. I had explained to him how my hands blister when they are > in water for any length of time. So today I sat with my hands in a basin > of water for 10 minutes so he could see what I was talking about. He > whistled in amazement when I took my hands out and had about 2 dozen > tiny blisters on the palms of my hands. I also had yet more bloodwork > done today. Dracula lives! > > > > So now all the pointy headed doctors will put their pointy little > heads together and decide what to do with weird old me. I let Dr. > on know that whatever they want me to do, I'm not starting till > after Christmas. > > > > So that's my story and I'm stickin to it. I'm glad it's over and I > refuse to worry about it for a single second. > > > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > " Maybe Christmas, " he thought, " doesn't come from a store. Maybe > Christmas... perhaps... means a little bit more. " > > Dr. Seuss > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 MB i have to agree with bruce glad they got to see it first hand.. and this is amazing.. So sorry yet you will find answers and it sounds like you have some great plans to get your mind in the right place. I agree i hate the PFTs also, and that is a kind word..is there a harsher description for hate.lol Praying my pulmo doesn't do them next week or have me walk in the office.. ugh.. anyway you take care and have fun. prayers your way.. patti,nj > > > > Just got home from Duke and a visit with Dr. on along with a > pulmonary function torture.....oops sorry I mean pulmonary function > test. That flippin thing just wears me out, hate it hate it hate it. My > results are very similar to the results I got in June. The spirometry > portion is slightly lower but not enough to get excited about. My > volumes were slightly improved over last time and my DLCO is about the > same. All in all it puts my right where I like to spend my time...in > the stables! > > > > So now the not so fun part. I have to have biopsy of the " mechanic > hand " rash I have on both my hands to confirm the dermatomyositis. It > was in full bloom today and Dr. on finally got a chance to see it > at it's worst. I had explained to him how my hands blister when they are > in water for any length of time. So today I sat with my hands in a basin > of water for 10 minutes so he could see what I was talking about. He > whistled in amazement when I took my hands out and had about 2 dozen > tiny blisters on the palms of my hands. I also had yet more bloodwork > done today. Dracula lives! > > > > So now all the pointy headed doctors will put their pointy little > heads together and decide what to do with weird old me. I let Dr. > on know that whatever they want me to do, I'm not starting till > after Christmas. > > > > So that's my story and I'm stickin to it. I'm glad it's over and I > refuse to worry about it for a single second. > > > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > " Maybe Christmas, " he thought, " doesn't come from a store. Maybe > Christmas... perhaps... means a little bit more. " > > Dr. Seuss > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 MB i have to agree with bruce glad they got to see it first hand.. and this is amazing.. So sorry yet you will find answers and it sounds like you have some great plans to get your mind in the right place. I agree i hate the PFTs also, and that is a kind word..is there a harsher description for hate.lol Praying my pulmo doesn't do them next week or have me walk in the office.. ugh.. anyway you take care and have fun. prayers your way.. patti,nj > > > > Just got home from Duke and a visit with Dr. on along with a > pulmonary function torture.....oops sorry I mean pulmonary function > test. That flippin thing just wears me out, hate it hate it hate it. My > results are very similar to the results I got in June. The spirometry > portion is slightly lower but not enough to get excited about. My > volumes were slightly improved over last time and my DLCO is about the > same. All in all it puts my right where I like to spend my time...in > the stables! > > > > So now the not so fun part. I have to have biopsy of the " mechanic > hand " rash I have on both my hands to confirm the dermatomyositis. It > was in full bloom today and Dr. on finally got a chance to see it > at it's worst. I had explained to him how my hands blister when they are > in water for any length of time. So today I sat with my hands in a basin > of water for 10 minutes so he could see what I was talking about. He > whistled in amazement when I took my hands out and had about 2 dozen > tiny blisters on the palms of my hands. I also had yet more bloodwork > done today. Dracula lives! > > > > So now all the pointy headed doctors will put their pointy little > heads together and decide what to do with weird old me. I let Dr. > on know that whatever they want me to do, I'm not starting till > after Christmas. > > > > So that's my story and I'm stickin to it. I'm glad it's over and I > refuse to worry about it for a single second. > > > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > " Maybe Christmas, " he thought, " doesn't come from a store. Maybe > Christmas... perhaps... means a little bit more. " > > Dr. Seuss > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Does this mean that not everyone gets the wonderful PFT's and 6 min walk before each pulmo visit? Mine never sees a patient without them being done first. I had 3 of them in 5 weeks because he saw me 3 times during that 5 weeks - or it was more like 5 weaks. I think I am going to tell my dr I do not want to feel so special and see if he cuts me a break. Jean > > > > > > Just got home from Duke and a visit with Dr. on along with > a > > pulmonary function torture.....oops sorry I mean pulmonary function > > test. That flippin thing just wears me out, hate it hate it hate > it. My > > results are very similar to the results I got in June. The > spirometry > > portion is slightly lower but not enough to get excited about. My > > volumes were slightly improved over last time and my DLCO is about > the > > same. All in all it puts my right where I like to spend my > time...in > > the stables! > > > > > > So now the not so fun part. I have to have biopsy of > the " mechanic > > hand " rash I have on both my hands to confirm the dermatomyositis. > It > > was in full bloom today and Dr. on finally got a chance to > see it > > at it's worst. I had explained to him how my hands blister when > they are > > in water for any length of time. So today I sat with my hands in a > basin > > of water for 10 minutes so he could see what I was talking about. > He > > whistled in amazement when I took my hands out and had about 2 > dozen > > tiny blisters on the palms of my hands. I also had yet more > bloodwork > > done today. Dracula lives! > > > > > > So now all the pointy headed doctors will put their pointy little > > heads together and decide what to do with weird old me. I let Dr. > > on know that whatever they want me to do, I'm not starting > till > > after Christmas. > > > > > > So that's my story and I'm stickin to it. I'm glad it's over and > I > > refuse to worry about it for a single second. > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > " Maybe Christmas, " he thought, " doesn't come from a store. Maybe > > Christmas... perhaps... means a little bit more. " > > > Dr. Seuss > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Does this mean that not everyone gets the wonderful PFT's and 6 min walk before each pulmo visit? Mine never sees a patient without them being done first. I had 3 of them in 5 weeks because he saw me 3 times during that 5 weeks - or it was more like 5 weaks. I think I am going to tell my dr I do not want to feel so special and see if he cuts me a break. Jean > > > > > > Just got home from Duke and a visit with Dr. on along with > a > > pulmonary function torture.....oops sorry I mean pulmonary function > > test. That flippin thing just wears me out, hate it hate it hate > it. My > > results are very similar to the results I got in June. The > spirometry > > portion is slightly lower but not enough to get excited about. My > > volumes were slightly improved over last time and my DLCO is about > the > > same. All in all it puts my right where I like to spend my > time...in > > the stables! > > > > > > So now the not so fun part. I have to have biopsy of > the " mechanic > > hand " rash I have on both my hands to confirm the dermatomyositis. > It > > was in full bloom today and Dr. on finally got a chance to > see it > > at it's worst. I had explained to him how my hands blister when > they are > > in water for any length of time. So today I sat with my hands in a > basin > > of water for 10 minutes so he could see what I was talking about. > He > > whistled in amazement when I took my hands out and had about 2 > dozen > > tiny blisters on the palms of my hands. I also had yet more > bloodwork > > done today. Dracula lives! > > > > > > So now all the pointy headed doctors will put their pointy little > > heads together and decide what to do with weird old me. I let Dr. > > on know that whatever they want me to do, I'm not starting > till > > after Christmas. > > > > > > So that's my story and I'm stickin to it. I'm glad it's over and > I > > refuse to worry about it for a single second. > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > " Maybe Christmas, " he thought, " doesn't come from a store. Maybe > > Christmas... perhaps... means a little bit more. " > > > Dr. Seuss > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Does this mean that not everyone gets the wonderful PFT's and 6 min walk before each pulmo visit? Mine never sees a patient without them being done first. I had 3 of them in 5 weeks because he saw me 3 times during that 5 weeks - or it was more like 5 weaks. I think I am going to tell my dr I do not want to feel so special and see if he cuts me a break. Jean > > > > > > Just got home from Duke and a visit with Dr. on along with > a > > pulmonary function torture.....oops sorry I mean pulmonary function > > test. That flippin thing just wears me out, hate it hate it hate > it. My > > results are very similar to the results I got in June. The > spirometry > > portion is slightly lower but not enough to get excited about. My > > volumes were slightly improved over last time and my DLCO is about > the > > same. All in all it puts my right where I like to spend my > time...in > > the stables! > > > > > > So now the not so fun part. I have to have biopsy of > the " mechanic > > hand " rash I have on both my hands to confirm the dermatomyositis. > It > > was in full bloom today and Dr. on finally got a chance to > see it > > at it's worst. I had explained to him how my hands blister when > they are > > in water for any length of time. So today I sat with my hands in a > basin > > of water for 10 minutes so he could see what I was talking about. > He > > whistled in amazement when I took my hands out and had about 2 > dozen > > tiny blisters on the palms of my hands. I also had yet more > bloodwork > > done today. Dracula lives! > > > > > > So now all the pointy headed doctors will put their pointy little > > heads together and decide what to do with weird old me. I let Dr. > > on know that whatever they want me to do, I'm not starting > till > > after Christmas. > > > > > > So that's my story and I'm stickin to it. I'm glad it's over and > I > > refuse to worry about it for a single second. > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > " Maybe Christmas, " he thought, " doesn't come from a store. Maybe > > Christmas... perhaps... means a little bit more. " > > > Dr. Seuss > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 I have a PFT every six months and have had one 6 min walk in the last 4 1/2 years. He does check my O2 every time. drops into low 80's walking to the exam room. I bring my own pulse Ox or he charges me $40 to use his and insurance fights me on the payment P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60Subject: Re: PFT & Doctor visitTo: Breathe-Support Date: Wednesday, December 3, 2008, 10:51 AM Does this mean that not everyone gets the wonderful PFT's and 6 min walk before each pulmo visit? Mine never sees a patient without them being done first. I had 3 of them in 5 weeks because he saw me 3 times during that 5 weeks - or it was more like 5 weaks. I think I am going to tell my dr I do not want to feel so special and see if he cuts me a break. Jean > > > > > > Just got home from Duke and a visit with Dr. on along with > a > > pulmonary function torture..... oops sorry I mean pulmonary function > > test. That flippin thing just wears me out, hate it hate it hate > it. My > > results are very similar to the results I got in June. The > spirometry > > portion is slightly lower but not enough to get excited about. My > > volumes were slightly improved over last time and my DLCO is about > the > > same. All in all it puts my right where I like to spend my > time...in > > the stables! > > > > > > So now the not so fun part. I have to have biopsy of > the "mechanic > > hand" rash I have on both my hands to confirm the dermatomyositis. > It > > was in full bloom today and Dr. on finally got a chance to > see it > > at it's worst. I had explained to him how my hands blister when > they are > > in water for any length of time. So today I sat with my hands in a > basin > > of water for 10 minutes so he could see what I was talking about. > He > > whistled in amazement when I took my hands out and had about 2 > dozen > > tiny blisters on the palms of my hands. I also had yet more > bloodwork > > done today. Dracula lives! > > > > > > So now all the pointy headed doctors will put their pointy little > > heads together and decide what to do with weird old me. I let Dr. > > on know that whatever they want me to do, I'm not starting > till > > after Christmas. > > > > > > So that's my story and I'm stickin to it. I'm glad it's over and > I > > refuse to worry about it for a single second. > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > "Maybe Christmas," he thought, "doesn't come from a store. Maybe > > Christmas... perhaps... means a little bit more." > > > Dr. Seuss > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 I have a PFT every six months and have had one 6 min walk in the last 4 1/2 years. He does check my O2 every time. drops into low 80's walking to the exam room. I bring my own pulse Ox or he charges me $40 to use his and insurance fights me on the payment P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60Subject: Re: PFT & Doctor visitTo: Breathe-Support Date: Wednesday, December 3, 2008, 10:51 AM Does this mean that not everyone gets the wonderful PFT's and 6 min walk before each pulmo visit? Mine never sees a patient without them being done first. I had 3 of them in 5 weeks because he saw me 3 times during that 5 weeks - or it was more like 5 weaks. I think I am going to tell my dr I do not want to feel so special and see if he cuts me a break. Jean > > > > > > Just got home from Duke and a visit with Dr. on along with > a > > pulmonary function torture..... oops sorry I mean pulmonary function > > test. That flippin thing just wears me out, hate it hate it hate > it. My > > results are very similar to the results I got in June. The > spirometry > > portion is slightly lower but not enough to get excited about. My > > volumes were slightly improved over last time and my DLCO is about > the > > same. All in all it puts my right where I like to spend my > time...in > > the stables! > > > > > > So now the not so fun part. I have to have biopsy of > the "mechanic > > hand" rash I have on both my hands to confirm the dermatomyositis. > It > > was in full bloom today and Dr. on finally got a chance to > see it > > at it's worst. I had explained to him how my hands blister when > they are > > in water for any length of time. So today I sat with my hands in a > basin > > of water for 10 minutes so he could see what I was talking about. > He > > whistled in amazement when I took my hands out and had about 2 > dozen > > tiny blisters on the palms of my hands. I also had yet more > bloodwork > > done today. Dracula lives! > > > > > > So now all the pointy headed doctors will put their pointy little > > heads together and decide what to do with weird old me. I let Dr. > > on know that whatever they want me to do, I'm not starting > till > > after Christmas. > > > > > > So that's my story and I'm stickin to it. I'm glad it's over and > I > > refuse to worry about it for a single second. > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > "Maybe Christmas," he thought, "doesn't come from a store. Maybe > > Christmas... perhaps... means a little bit more." > > > Dr. Seuss > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 I have a PFT every six months and have had one 6 min walk in the last 4 1/2 years. He does check my O2 every time. drops into low 80's walking to the exam room. I bring my own pulse Ox or he charges me $40 to use his and insurance fights me on the payment P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60Subject: Re: PFT & Doctor visitTo: Breathe-Support Date: Wednesday, December 3, 2008, 10:51 AM Does this mean that not everyone gets the wonderful PFT's and 6 min walk before each pulmo visit? Mine never sees a patient without them being done first. I had 3 of them in 5 weeks because he saw me 3 times during that 5 weeks - or it was more like 5 weaks. I think I am going to tell my dr I do not want to feel so special and see if he cuts me a break. Jean > > > > > > Just got home from Duke and a visit with Dr. on along with > a > > pulmonary function torture..... oops sorry I mean pulmonary function > > test. That flippin thing just wears me out, hate it hate it hate > it. My > > results are very similar to the results I got in June. The > spirometry > > portion is slightly lower but not enough to get excited about. My > > volumes were slightly improved over last time and my DLCO is about > the > > same. All in all it puts my right where I like to spend my > time...in > > the stables! > > > > > > So now the not so fun part. I have to have biopsy of > the "mechanic > > hand" rash I have on both my hands to confirm the dermatomyositis. > It > > was in full bloom today and Dr. on finally got a chance to > see it > > at it's worst. I had explained to him how my hands blister when > they are > > in water for any length of time. So today I sat with my hands in a > basin > > of water for 10 minutes so he could see what I was talking about. > He > > whistled in amazement when I took my hands out and had about 2 > dozen > > tiny blisters on the palms of my hands. I also had yet more > bloodwork > > done today. Dracula lives! > > > > > > So now all the pointy headed doctors will put their pointy little > > heads together and decide what to do with weird old me. I let Dr. > > on know that whatever they want me to do, I'm not starting > till > > after Christmas. > > > > > > So that's my story and I'm stickin to it. I'm glad it's over and > I > > refuse to worry about it for a single second. > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > "Maybe Christmas," he thought, "doesn't come from a store. Maybe > > Christmas... perhaps... means a little bit more." > > > Dr. Seuss > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 i can't believe the doc charges you to use the oximeter that is a disgrace in my opinionPink Joyce IPF 3/06 Pennsylvania From: jeane7160 <jeane7160 (AT) yahoo (DOT) com>Subject: Re: PFT & Doctor visitTo: Breathe-Support@ yahoogroups. comDate: Wednesday, December 3, 2008, 10:51 AM Does this mean that not everyone gets the wonderful PFT's and 6 min walk before each pulmo visit? Mine never sees a patient without them being done first. I had 3 of them in 5 weeks because he saw me 3 times during that 5 weeks - or it was more like 5 weaks. I think I am going to tell my dr I do not want to feel so special and see if he cuts me a break. Jean > > >> > > Just got home from Duke and a visit with Dr. on along with > a> > pulmonary function torture..... oops sorry I mean pulmonary function> > test. That flippin thing just wears me out, hate it hate it hate > it. My> > results are very similar to the results I got in June. The > spirometry> > portion is slightly lower but not enough to get excited about. My> > volumes were slightly improved over last time and my DLCO is about > the> > same. All in all it puts my right where I like to spend my > time...in> > the stables!> > >> > > So now the not so fun part. I have to have biopsy of > the "mechanic> > hand" rash I have on both my hands to confirm the dermatomyositis. > It> > was in full bloom today and Dr. on finally got a chance to > see it> > at it's worst. I had explained to him how my hands blister when > they are> > in water for any length of time. So today I sat with my hands in a > basin> > of water for 10 minutes so he could see what I was talking about. > He> > whistled in amazement when I took my hands out and had about 2 > dozen> > tiny blisters on the palms of my hands. I also had yet more > bloodwork> > done today. Dracula lives!> > >> > > So now all the pointy headed doctors will put their pointy little> > heads together and decide what to do with weird old me. I let Dr.> > on know that whatever they want me to do, I'm not starting > till> > after Christmas.> > >> > > So that's my story and I'm stickin to it. I'm glad it's over and > I> > refuse to worry about it for a single second.> > >> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >> > > "Maybe Christmas," he thought, "doesn't come from a store. Maybe> > Christmas... perhaps... means a little bit more."> > > Dr. Seuss> > >> >> Quote Link to comment Share on other sites More sharing options...
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