Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Tanairi.... I'm so sorry to read you are already 3 years into PF at 23!! You are in the best place you can be now as we fight our common disease. There is always someone here to answer a question or give extra support. Tell us in what State you live and do you have family to support you? Are you on o2 yet? Welcome! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 i live in nyc i been on o2 since i 06 my family realy does not get me you know they think it like a cold that would go away with a pill thanks for taking in to this family i no longer feel alone i just 19 when i was getting sick and no dr had an ansewer for my and my hubby thank all for your support To: Breathe-Support Sent: Sunday, June 14, 2009 2:42:19 PMSubject: Re: HI TO ALL Tanairi.... I'm so sorry to read you are already 3 years into PF at 23!! You are in the best place you can be now as we fight our common disease. There is always someone here to answer a question or give extra support. Tell us in what State you live and do you have family to support you? Are you on o2 yet? Welcome! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Hi Elba,I have heard that same theme recurrent from a number of people in this group and experience it myself. People just don't understand the disease, there isn't good public awareness of it. People always say to me, "you look healthy to me" and I am in my own way. I am so grateful to have found this group so I can talk about what is concerning to me with people who 'get it' and who have experienced what I am going through. The comrade and support are wonderful.Are you working with someone at your University Health System in NYC? I would encourage you to. God bless you,Peggy Ellis (ILD 2007, probably oncoming for at least a decade maybe longer when I really think back about different experiences and how I was 'different' from others, Mom, wife, etc.)Subject: Re: HI TO ALLTo: Breathe-Support Date: Sunday, June 14, 2009, 12:15 PM i live in nyc i been on o2 since i 06 my family realy does not get me you know they think it like a cold that would go away with a pill thanks for taking in to this family i no longer feel alone i just 19 when i was getting sick and no dr had an ansewer for my and my hubby thank all for your support From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 2:42:19 PMSubject: Re: HI TO ALL Tanairi.... I'm so sorry to read you are already 3 years into PF at 23!! You are in the best place you can be now as we fight our common disease. There is always someone here to answer a question or give extra support. Tell us in what State you live and do you have family to support you? Are you on o2 yet? Welcome! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 how do i go about to work with them hear in nyc To: Breathe-Support Sent: Sunday, June 14, 2009 5:27:18 PMSubject: Re: HI TO ALL Hi Elba,I have heard that same theme recurrent from a number of people in this group and experience it myself. People just don't understand the disease, there isn't good public awareness of it. People always say to me, "you look healthy to me" and I am in my own way. I am so grateful to have found this group so I can talk about what is concerning to me with people who 'get it' and who have experienced what I am going through. The comrade and support are wonderful.Are you working with someone at your University Health System in NYC? I would encourage you to. God bless you,Peggy Ellis (ILD 2007, probably oncoming for at least a decade maybe longer when I really think back about different experiences and how I was 'different' from others, Mom, wife, etc.)From: Elba <babynita86 (AT) yahoo (DOT) com>Subject: Re: HI TO ALLTo: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 12:15 PM i live in nyc i been on o2 since i 06 my family realy does not get me you know they think it like a cold that would go away with a pill thanks for taking in to this family i no longer feel alone i just 19 when i was getting sick and no dr had an ansewer for my and my hubby thank all for your support From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 2:42:19 PMSubject: Re: HI TO ALL Tanairi.... I'm so sorry to read you are already 3 years into PF at 23!! You are in the best place you can be now as we fight our common disease. There is always someone here to answer a question or give extra support. Tell us in what State you live and do you have family to support you? Are you on o2 yet? Welcome! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Elba, I'm wondering where you are getting your care in NY. I used to live in the suburbs up in Rockland County but I was born in the Bronx. When I lived in NY I saw Dr. Simonelli at Columbia Presbyterian in Manhattan. He's extremely knowledgable and kind. I don't know what kind of insurance you have or what your situation is but if you haven't been seen by a specialist in this type of lung disease it would be worthwhile finding out if your insurance would cover an evaluation by someone like Dr. Simonelli. You are so young, your situation just breaks my heart. God bless you! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, June 14, 2009 5:35:00 PMSubject: Re: HI TO ALL how do i go about to work with them hear in nyc From: Peggy Ellis <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 5:27:18 PMSubject: Re: HI TO ALL Hi Elba,I have heard that same theme recurrent from a number of people in this group and experience it myself. People just don't understand the disease, there isn't good public awareness of it. People always say to me, "you look healthy to me" and I am in my own way. I am so grateful to have found this group so I can talk about what is concerning to me with people who 'get it' and who have experienced what I am going through. The comrade and support are wonderful.Are you working with someone at your University Health System in NYC? I would encourage you to. God bless you,Peggy Ellis (ILD 2007, probably oncoming for at least a decade maybe longer when I really think back about different experiences and how I was 'different' from others, Mom, wife, etc.) From: Elba <babynita86 (AT) yahoo (DOT) com>Subject: Re: HI TO ALLTo: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 12:15 PM i live in nyc i been on o2 since i 06 my family realy does not get me you know they think it like a cold that would go away with a pill thanks for taking in to this family i no longer feel alone i just 19 when i was getting sick and no dr had an ansewer for my and my hubby thank all for your support From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 2:42:19 PMSubject: Re: HI TO ALL Tanairi.... I'm so sorry to read you are already 3 years into PF at 23!! You are in the best place you can be now as we fight our common disease. There is always someone here to answer a question or give extra support. Tell us in what State you live and do you have family to support you? Are you on o2 yet? Welcome! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 i go to now beth israel hospital i have medicare i used to mount sinia but that is a long story from: Beth To: Breathe-Support Sent: Sunday, June 14, 2009 5:48:54 PMSubject: Re: HI TO ALL Elba, I'm wondering where you are getting your care in NY. I used to live in the suburbs up in Rockland County but I was born in the Bronx. When I lived in NY I saw Dr. Simonelli at Columbia Presbyterian in Manhattan. He's extremely knowledgable and kind. I don't know what kind of insurance you have or what your situation is but if you haven't been seen by a specialist in this type of lung disease it would be worthwhile finding out if your insurance would cover an evaluation by someone like Dr. Simonelli. You are so young, your situation just breaks my heart. God bless you! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Elba <babynita86 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 5:35:00 PMSubject: Re: HI TO ALL how do i go about to work with them hear in nyc From: Peggy Ellis <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 5:27:18 PMSubject: Re: HI TO ALL Hi Elba,I have heard that same theme recurrent from a number of people in this group and experience it myself. People just don't understand the disease, there isn't good public awareness of it. People always say to me, "you look healthy to me" and I am in my own way. I am so grateful to have found this group so I can talk about what is concerning to me with people who 'get it' and who have experienced what I am going through. The comrade and support are wonderful.Are you working with someone at your University Health System in NYC? I would encourage you to. God bless you,Peggy Ellis (ILD 2007, probably oncoming for at least a decade maybe longer when I really think back about different experiences and how I was 'different' from others, Mom, wife, etc.) From: Elba <babynita86 (AT) yahoo (DOT) com>Subject: Re: HI TO ALLTo: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 12:15 PM i live in nyc i been on o2 since i 06 my family realy does not get me you know they think it like a cold that would go away with a pill thanks for taking in to this family i no longer feel alone i just 19 when i was getting sick and no dr had an ansewer for my and my hubby thank all for your support From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 2:42:19 PMSubject: Re: HI TO ALL Tanairi.... I'm so sorry to read you are already 3 years into PF at 23!! You are in the best place you can be now as we fight our common disease. There is always someone here to answer a question or give extra support. Tell us in what State you live and do you have family to support you? Are you on o2 yet? Welcome! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 You are being worked up at Beth Israel Hospital right? Are you in a program specializing in pulmonary fibrosis? Hopefully you are being treated by the brightest minds in NYC in pulmonary medicine. Let us know who you are seeing and what treatments they have you on. Beth is an RN and is very knowledgeable and probably can give you some suggestions of things to ask about. Enjoy that baby! They grow up so quickly. My son is 27 and I can remember the days when he was your baby's age. Peggy Ellis > > > >From: Elba <babynita86 (AT) yahoo (DOT) com> > >Subject: Re: HI TO ALL > >To: Breathe-Support@ yahoogroups. com > >Date: Sunday, June 14, 2009, 12:15 PM > > > > > >i live in nyc i been on o2 since i 06 my family realy does not get me you know they think it like a cold that would go away with a pill thanks for taking in to this family i no longer feel alone i just 19 when i was getting sick and no dr had an ansewer for my and my hubby thank all for your support > > > > > > > ________________________________ > From: Sher Bauman <bofus (AT) wbcable (DOT) net> > >To: Breathe-Support@ yahoogroups. com > >Sent: Sunday, June 14, 2009 2:42:19 PM > >Subject: Re: HI TO ALL > > > > > >Tanairi.... I'm so sorry to read you are already 3 years into PF at > >23!! > >You are in the > >best place you can be now as we fight our common disease. > >There is > >always someone here to answer a question or give extra > >support. > >Tell us in > >what State you live and do you have family to support you? > >Are you on o2 > >yet? > >Welcome! > >MamaSher; 70, IPF 3-06, OR. > > > >Nasturtiums > >Don't fret about tomorrow, God is already > >there! > > > > HI TO > >>ALL > >> > >> > >>THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH > >> PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND > >> JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 you know i an not sure if i am a program specializing in pf but i will ask tomorrow as if now i am on o2 as need which is most of the time i take immunosuppressant therapy and there has been talk about getting a transplant in which i will hear more about tomorrow they are so much better then last place i used to go to before thank god as for my son he turns 2 in oct To: Breathe-Support Sent: Sunday, June 14, 2009 7:14:22 PMSubject: Re: HI TO ALL You are being worked up at Beth Israel Hospital right? Are you in a program specializing in pulmonary fibrosis? Hopefully you are being treated by the brightest minds in NYC in pulmonary medicine. Let us know who you are seeing and what treatments they have you on. Beth is an RN and is very knowledgeable and probably can give you some suggestions of things to ask about. Enjoy that baby! They grow up so quickly. My son is 27 and I can remember the days when he was your baby's age. Peggy Ellis > > > >From: Elba <babynita86@ yahoo. com> > >Subject: Re: HI TO ALL > >To: Breathe-Support@ yahoogroups. com > >Date: Sunday, June 14, 2009, 12:15 PM > > > > > >i live in nyc i been on o2 since i 06 my family realy does not get me you know they think it like a cold that would go away with a pill thanks for taking in to this family i no longer feel alone i just 19 when i was getting sick and no dr had an ansewer for my and my hubby thank all for your support > > > > > > > ____________ _________ _________ __ > From: Sher Bauman <bofus (AT) wbcable (DOT) net> > >To: Breathe-Support@ yahoogroups. com > >Sent: Sunday, June 14, 2009 2:42:19 PM > >Subject: Re: HI TO ALL > > > > > >Tanairi.... I'm so sorry to read you are already 3 years into PF at > >23!! > >You are in the > >best place you can be now as we fight our common disease. > >There is > >always someone here to answer a question or give extra > >support. > >Tell us in > >what State you live and do you have family to support you? > >Are you on o2 > >yet? > >Welcome! > >MamaSher; 70, IPF 3-06, OR. > > > >Nasturtiums > >Don't fret about tomorrow, God is already > >there! > > > > HI TO > >>ALL > >> > >> > >>THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH > >> PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND > >> JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.