Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 I was told to go home sit on the couch and die......no support nada. I found this group and praise god. I have been in 12 step programs for 36 years and learnd a great deal a bout living. <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Tue, December 15, 2009 10:51:41 PMSubject: Re: Peggy and Bruce DyaneI struggled through the mental and emotional challenges before beingdiagnosed with PF. I've experienced the downs and the anger and thedesperation. It's one thing that makes the disease easier for me becauseI can honestly say I've been through worse. The thing I do know is thatno physical illness can rival mental illness and no physical sufferingwill ever equal the depression or anxiety or hopelessness we can feel.Thats why I'm so firm when I talk about managing the mental andemotional aspects of this disease. Ultimately, if we do that, we liveand find happiness within it all.I'm also fortunate that as soon as I was diagnosed I hit the internetand I found support groups here. I visited and I read and I absorbed andlearned. I saw people so much further advanced than I was but stillliving life to its fullest. When you're on 2 to 3 lpm but a friend getsup, dresses, drives and meets you for lunch and is beautiful andcharming even though she's on 10 lpm or even 15 lpm ultimately whenwalking, it makes an impression. When you know she's going home in timefor her physical rehab (therapist to here home) then its hard to makeexcuses for why I can't exercise or can't get out and walk.I've gotten so much practical advice here. Yes, I came here before myVATS and I've read about diagnoses and prednisone and all the otheroptions. But, I've also learned far more about life and living with adisease like this. Yes, friends have been lost but I do rejoice far morein their lives than any mourning. I smile when I think of them, evenlaugh sometimes. Ultimately, the ones I feel sorry for are all those whohaven't found an online or local support group and are wading around ina deep pool of confusion and ignorance, not understanding the disease orthe life they can have with it. I have an uncle who got COPD and spentthe last 30 years of his life in his recliner or in bed. No one told himhe had a choice. I know there are so many diagnosed with PF every dayand being told basically to go home and sit on the sofa and wait to die.Those are the ones I hurt for. We're a very small percentage of thosewith PF. We're the lucky ones.>> Peggy/Bruce>> Between the two of you, you've managed to make me cry and laugh at the> same time>> Peggy - you continue to be an example to us all on being gracious and> loving. I wish so much I could make it to Florida to meet you.>> Bruce - I will print and post your post in large letters on my> refrigerator and at work. You continue to astound me with yourability> to put what we want to express in such clear and rich language. Your> peace is palpable even through a computer.> Dyane, 54, Phoenix, IIP 02 now UIP? 09, Breast Cancer, Psoriasis,> Lipodermatosclerosi s, Diabetes, and now a RA like autoimmunecomponent,> yadda yadda yadda.>>> "Life is not a journey to the grave with intentions of arriving is a> pretty, well-preserved body, but rather to skid in broadside,thoroughly> used up, totally worn out, chocolate in one hand, Margaritas in the> other, loudly proclaiming "Holy **** What a ride!"."> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 the pulmonary [Moss} who made the diagnosis said there was nothing he could do for me and discharged me on my way out, he said that penn and temple have depts specializing in ILD's if i want to i can call them so i went home, called Penn, and took the first available appointment Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Peggy and BruceTo: Breathe-Support Date: Tuesday, December 15, 2009, 10:51 PM DyaneI struggled through the mental and emotional challenges before beingdiagnosed with PF. I've experienced the downs and the anger and thedesperation. It's one thing that makes the disease easier for me becauseI can honestly say I've been through worse. The thing I do know is thatno physical illness can rival mental illness and no physical sufferingwill ever equal the depression or anxiety or hopelessness we can feel.Thats why I'm so firm when I talk about managing the mental andemotional aspects of this disease. Ultimately, if we do that, we liveand find happiness within it all.I'm also fortunate that as soon as I was diagnosed I hit the internetand I found support groups here. I visited and I read and I absorbed andlearned. I saw people so much further advanced than I was but stillliving life to its fullest. When you're on 2 to 3 lpm but a friend getsup, dresses, drives and meets you for lunch and is beautiful andcharming even though she's on 10 lpm or even 15 lpm ultimately whenwalking, it makes an impression. When you know she's going home in timefor her physical rehab (therapist to here home) then its hard to makeexcuses for why I can't exercise or can't get out and walk.I've gotten so much practical advice here. Yes, I came here before myVATS and I've read about diagnoses and prednisone and all the otheroptions. But, I've also learned far more about life and living with adisease like this. Yes, friends have been lost but I do rejoice far morein their lives than any mourning. I smile when I think of them, evenlaugh sometimes. Ultimately, the ones I feel sorry for are all those whohaven't found an online or local support group and are wading around ina deep pool of confusion and ignorance, not understanding the disease orthe life they can have with it. I have an uncle who got COPD and spentthe last 30 years of his life in his recliner or in bed. No one told himhe had a choice. I know there are so many diagnosed with PF every dayand being told basically to go home and sit on the sofa and wait to die.Those are the ones I hurt for. We're a very small percentage of thosewith PF. We're the lucky ones.>> Peggy/Bruce>> Between the two of you, you've managed to make me cry and laugh at the> same time>> Peggy - you continue to be an example to us all on being gracious and> loving. I wish so much I could make it to Florida to meet you.>> Bruce - I will print and post your post in large letters on my> refrigerator and at work. You continue to astound me with yourability> to put what we want to express in such clear and rich language. Your> peace is palpable even through a computer.> Dyane, 54, Phoenix, IIP 02 now UIP? 09, Breast Cancer, Psoriasis,> Lipodermatosclerosi s, Diabetes, and now a RA like autoimmunecomponent,> yadda yadda yadda.>>> "Life is not a journey to the grave with intentions of arriving is a> pretty, well-preserved body, but rather to skid in broadside,thoroughly> used up, totally worn out, chocolate in one hand, Margaritas in the> other, loudly proclaiming "Holy **** What a ride!"."> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 Ye Gads Pink! I hope 'that' Dr. chokes on "....first we do no harm" or something close enough that you know what I'm talking about. I continue to be amazed at some of the Drs we hear about across the board. MamaSher; IPF 2006, NSIP, PH 2009, OR.Don't fret about tomorrow, God is already there! From: Joyce T Rosenberg Sent: Wednesday, December 16, 2009 4:30 PM To: Breathe-Support Subject: Re: Re: Peggy and Bruce the pulmonary [Moss} who made the diagnosis said there was nothing he could do for me and discharged me on my way out, he said that penn and temple have depts specializing in ILD's if i want to i can call them so i went home, called Penn, and took the first available appointment Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- On Tue, 12/15/09, Bruce <brucemoreland (AT) gmail (DOT) com> wrote: From: Bruce <brucemoreland (AT) gmail (DOT) com>Subject: Re: Peggy and BruceTo: Breathe-Support Date: Tuesday, December 15, 2009, 10:51 PM DyaneI struggled through the mental and emotional challenges before beingdiagnosed with PF. I've experienced the downs and the anger and thedesperation. It's one thing that makes the disease easier for me becauseI can honestly say I've been through worse. The thing I do know is thatno physical illness can rival mental illness and no physical sufferingwill ever equal the depression or anxiety or hopelessness we can feel.Thats why I'm so firm when I talk about managing the mental andemotional aspects of this disease. Ultimately, if we do that, we liveand find happiness within it all.I'm also fortunate that as soon as I was diagnosed I hit the internetand I found support groups here. I visited and I read and I absorbed andlearned. I saw people so much further advanced than I was but stillliving life to its fullest. When you're on 2 to 3 lpm but a friend getsup, dresses, drives and meets you for lunch and is beautiful andcharming even though she's on 10 lpm or even 15 lpm ultimately whenwalking, it makes an impression. When you know she's going home in timefor her physical rehab (therapist to here home) then its hard to makeexcuses for why I can't exercise or can't get out and walk.I've gotten so much practical advice here. Yes, I came here before myVATS and I've read about diagnoses and prednisone and all the otheroptions. But, I've also learned far more about life and living with adisease like this. Yes, friends have been lost but I do rejoice far morein their lives than any mourning. I smile when I think of them, evenlaugh sometimes. Ultimately, the ones I feel sorry for are all those whohaven't found an online or local support group and are wading around ina deep pool of confusion and ignorance, not understanding the disease orthe life they can have with it. I have an uncle who got COPD and spentthe last 30 years of his life in his recliner or in bed. No one told himhe had a choice. I know there are so many diagnosed with PF every dayand being told basically to go home and sit on the sofa and wait to die.Those are the ones I hurt for. We're a very small percentage of thosewith PF. We're the lucky ones.>> Peggy/Bruce>> Between the two of you, you've managed to make me cry and laugh at the> same time>> Peggy - you continue to be an example to us all on being gracious and> loving. I wish so much I could make it to Florida to meet you.>> Bruce - I will print and post your post in large letters on my> refrigerator and at work. You continue to astound me with yourability> to put what we want to express in such clear and rich language. Your> peace is palpable even through a computer.> Dyane, 54, Phoenix, IIP 02 now UIP? 09, Breast Cancer, Psoriasis,> Lipodermatosclerosi s, Diabetes, and now a RA like autoimmunecomponent,> yadda yadda yadda.>>> "Life is not a journey to the grave with intentions of arriving is a> pretty, well-preserved body, but rather to skid in broadside,thoroughly> used up, totally worn out, chocolate in one hand, Margaritas in the> other, loudly proclaiming "Holy **** What a ride!"."> No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.716 / Virus Database: 270.14.110/2568 - Release Date: 12/16/09 00:02:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 needless to say i was devastated that day glad i went someplace else Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Peggy and BruceTo: Breathe-Support Date: Thursday, December 17, 2009, 1:13 PM Ye Gads Pink! I hope 'that' Dr. chokes on "....first we do no harm" or something close enough that you know what I'm talking about. I continue to be amazed at some of the Drs we hear about across the board. MamaSher; IPF 2006, NSIP, PH 2009, OR.Don't fret about tomorrow, God is already there! From: Joyce T Rosenberg Sent: Wednesday, December 16, 2009 4:30 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Re: Peggy and Bruce the pulmonary [Moss} who made the diagnosis said there was nothing he could do for me and discharged me on my way out, he said that penn and temple have depts specializing in ILD's if i want to i can call them so i went home, called Penn, and took the first available appointment Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Bruce <brucemoreland@ gmail.com>Subject: Re: Peggy and BruceTo: Breathe-Support@ yahoogroups. comDate: Tuesday, December 15, 2009, 10:51 PM DyaneI struggled through the mental and emotional challenges before beingdiagnosed with PF. I've experienced the downs and the anger and thedesperation. It's one thing that makes the disease easier for me becauseI can honestly say I've been through worse. The thing I do know is thatno physical illness can rival mental illness and no physical sufferingwill ever equal the depression or anxiety or hopelessness we can feel.Thats why I'm so firm when I talk about managing the mental andemotional aspects of this disease. Ultimately, if we do that, we liveand find happiness within it all.I'm also fortunate that as soon as I was diagnosed I hit the internetand I found support groups here. I visited and I read and I absorbed andlearned. I saw people so much further advanced than I was but stillliving life to its fullest. When you're on 2 to 3 lpm but a friend getsup, dresses, drives and meets you for lunch and is beautiful andcharming even though she's on 10 lpm or even 15 lpm ultimately whenwalking, it makes an impression. When you know she's going home in timefor her physical rehab (therapist to here home) then its hard to makeexcuses for why I can't exercise or can't get out and walk.I've gotten so much practical advice here. Yes, I came here before myVATS and I've read about diagnoses and prednisone and all the otheroptions. But, I've also learned far more about life and living with adisease like this. Yes, friends have been lost but I do rejoice far morein their lives than any mourning. I smile when I think of them, evenlaugh sometimes. Ultimately, the ones I feel sorry for are all those whohaven't found an online or local support group and are wading around ina deep pool of confusion and ignorance, not understanding the disease orthe life they can have with it. I have an uncle who got COPD and spentthe last 30 years of his life in his recliner or in bed. No one told himhe had a choice. I know there are so many diagnosed with PF every dayand being told basically to go home and sit on the sofa and wait to die.Those are the ones I hurt for. We're a very small percentage of thosewith PF. We're the lucky ones.>> Peggy/Bruce>> Between the two of you, you've managed to make me cry and laugh at the> same time>> Peggy - you continue to be an example to us all on being gracious and> loving. I wish so much I could make it to Florida to meet you.>> Bruce - I will print and post your post in large letters on my> refrigerator and at work. You continue to astound me with yourability> to put what we want to express in such clear and rich language. Your> peace is palpable even through a computer.> Dyane, 54, Phoenix, IIP 02 now UIP? 09, Breast Cancer, Psoriasis,> Lipodermatosclerosi s, Diabetes, and now a RA like autoimmunecomponent,> yadda yadda yadda.>>> "Life is not a journey to the grave with intentions of arriving is a> pretty, well-preserved body, but rather to skid in broadside,thoroughly> used up, totally worn out, chocolate in one hand, Margaritas in the> other, loudly proclaiming "Holy **** What a ride!"."> No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.716 / Virus Database: 270.14.110/2568 - Release Date: 12/16/09 00:02:00 Quote Link to comment Share on other sites More sharing options...
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