Guest guest Posted May 20, 2008 Report Share Posted May 20, 2008 Sher, Our is back to her self 100%...she was told by her therapist that she was good-to -go and that she didn't need 2 X weekly seeions anymore!!! She's completely back to being the strong, caring and giving girl again!!!! And you should see the delight in her eyes when she's with Sara. Thanks for thinking about her. I know that such thoughts do work in such positive ways. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Sher Bauman wrote: Oh the new pictures are so adorable. Those two girls are just about as cute as my granddaughters! Darah and Sara are especially pretty girls. They could be pictures out of a magazine. Indeed beautiful. How is doing? I think about her.... Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.23.21/1456 - Release Date: 5/20/2008 6:45 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2008 Report Share Posted May 21, 2008 Z....I just knew that 's moods would improve! So glad to know it has happened. A blessing to the whole family. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Z Sher, Our is back to her self 100%...she was told by her therapist that she was good-to -go and that she didn't need 2 X weekly seeions anymore!!! She's completelyback to being the strong, caring and giving girl again!!!! And you should see the delight in her eyes when she's with Sara.Thanks for thinking about her. I know that such thoughts do work in such positiveways. Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]-->Sher Bauman wrote: Oh the new pictures are so adorable. Those two girls are just about as cute as my granddaughters! Darah and Sara are especially pretty girls. They could be pictures out of a magazine. Indeed beautiful. How is doing? I think about her.... Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.23.21/1456 - Release Date: 5/20/2008 6:45 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 So Z is potting what you did after you retired? I took the last box from school today and have a feeling of dread after I took the last look at my room. Am I being melodramatic? K Illinois Zion wrote: Elissa, I can give you some information about ways to protect yourself from the dust, etc.I am a potter and have not stopped messiing with the clay because of my diagnosis. I just usevery protect gear.One website ....www.ICanBreathe.com...has many different types of goodprotective masks. I use the ones with the removable activated carbon filters.They filter out the dust and the smells too.I don't think I officially welcomed you to the "air family".So...WELCOME! Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]-->Elissa Casper wrote: Joyce, Thanks so much for your insight. I feel really positive today. Just got back from the Pulmonologist and he says they seem to have caught it early. I got bronchitis and pneumonia repeatedly over seven months and could not get better. After they exhausted every antibiotic, steroid and Asthma treatment, I was sent for a CT scan. Meanwhile, I had been seeing an Asthma specialist thinking that was causing the shortness of breath. They ruled out everything else before concluding it was PF. He has not indicated another immune disorder, but I do need more testing. He is not recommending a biopsy until I get stronger. Several weeks ago he put me on Prednisone and Azathioprine and they seem to have helped. I have been on Prednisone on and off for months due to pneumonia etc. Many years of experience on this particular drug and I always gain weight despite the fact that I don't eat. However, I feel better than I have in months. I will need O2 for exertion (most everything is an effort) but I am still awaiting insurance. I miss being more active and playing with my son, so I'm sure that will help. We have been planning some construction for some time and I'm wondering if anyone had any experience with the effects of dust etc. or any environmental issues that seem to worsen the condition. The Doctor encouraged me to carry on as normal with some precautions, but I don't want to worsen things unknowingly. I notice chemicals, smells, and that type of thing do bother me. I appreciate the input. I din't mean to give the impression I was counting my days. I just need to prepare in order to cope. Infomation and planning help me to feel in control. I'm sure I have lots of years for that, but again no one knows. If anything, I feel this diagnosis gives me more opportunity to enjoy life and loved ones. It puts things in perspective and I probably needed that more than most. Again I really appreciate you sharing with me. I am off to get my son and watch my little left handed fast ball thrower wow em on the baseball field. There's nothing that makes me happier. The weather is beautiful and all is good in the world!!! From: Joyce <janne5303>Subject: Re: Newly DiagnosedTo: Breathe-Support Date: Friday, May 30, 2008, 6:35 PM Elissa, So glad you decided to land here. We welcome you. I am so sorry that at 41 you find yourself with such a diagnosis. Have you had consults, evaluations, biopsy, etc. to confirm the diagnosis? Have you been diagnosed with PF secondary to an autoimmune disorder or IPF. Either way, I always say a duck is a duck. But, you can't number your days nor ask God to do so for you. Each day is a gift. There is nothing cuter in this world than a 9 year old boy. Until I had grandsons, I didn't know that. So enjoy him, use up every day! Your friend's death is so tragic. When I was in the hospital recovering from my biopsy, my husband's coworker's wife died. I had known she was sick, but we weren't friends, so I didn't know of what. She died of Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the same diagnosis. Had not even heard the name of it before. But, it scared me to death. I came home from the hospital to wait to die. I was 52. A couple of different friends came to yell at me and get me moving again. That was 11 years ago. No need to try and guestimate or wait. Just live, trust God, love that boy. Other things will work themselves out. If it is an option for you, go to rehab. A real eye opener. Again, welcome. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Hello Everyone!> > My name is Elissa (like no M). I have recenly been diagnosed > with PF. I guess I am still in the shock and comprehend stage. I am > 41 years old with a 9 year old son. I have been reading through the > messages and gained strength from all of you. However, I must > confess that I still am mourning the life I thought I would have and > preparing for this new course. I guess that's the main reason I'm > here. To find out what that course is going to be and how to prepare > for it. Awhile after I found out I have this disease, a friend the > same age died unexpectedly. Today I went to her funeral and watched > her nine year old play with mine. It put things in perspective a > bit. I have to feel some appreciation that I get the time to prepare > my family for the inevitable. On the other hand nobody knows how > much time they have and there is no truer statement than to live > everyday as if it's your last. The funny thing is, I finally > realized that about 7 months ago and decided to change my life. > After years of trying to get ahead and building 2 businesses with my > husband, I decided it's time to enjoy my son and family. Almost > immediately I got sick and never recovered. I kept telling everyone, > this is the year I get my life back. I hope this doesn't ring too > much of negativity, but I just find it ironic. I do feel there will > be many positive things to come from this situation. My family and > friends have really shown their support and love. That is such an > amazing feeling. But I must admit handling people has been a > challenge for me. I am a realist and when people say, "Oh, you'll be > fine." it is annoying to me. If anybody has any suggestions on how > to convey the situation it would be helpful. Oh, and I don't have > medical insurance. I've been paying cash to all these appointments, > x-rays, tests and the CT scan. Honestly, I still paid less than > many people pay in monthly insurance payments. My Doctor warned me > that is about to change and am scrambling to obtain insurance. I've > had Asthma since I was a child and numerous bouts with pneumonia and > bronchitis. I always joked with everyone that my lungs would kill > me. Well I hope my ramblings are not inappropriate and I do feel > better to get it off my chest. I was recently asked if I was angry > about the situation. Definately not. I believe the Lord has a plan > for me and I am scrambling to figure it out. I just want to get > through this with dignity and grace. Be a good example of a life > well lived. I know many of you are just that and I look forward to > getting to know you better. I have many questions, but another > time. Thanks for the space.> > Elissa> Age 41, PF 5/08> No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 K. , My illness caused my retirement too. My pottery is a passion that even NSIP will not stop. I told the doctors that no matter what I'd still work with the clay. The pulmonologist said that we'd figure out a way if the clay in any way caused this mess. Well the OLB showed "No" for the clay...hurray! So, I use masks, stay away from the oil painting class rooms, and I don't spray any glazes. I wear protective gear, mask or big respirator mask. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Kennelly wrote: So Z is potting what you did after you retired? I took the last box from school today and have a feeling of dread after I took the last look at my room. Am I being melodramatic? K Illinois Zion <ljz741verizon (DOT) net> wrote: Elissa, I can give you some information about ways to protect yourself from the dust, etc. I am a potter and have not stopped messiing with the clay because of my diagnosis. I just use very protect gear. One website ...www.ICanBreathe.com...has many different types of good protective masks. I use the ones with the removable activated carbon filters. They filter out the dust and the smells too. I don't think I officially welcomed you to the "air family". So...WELCOME! Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Elissa Casper wrote: Joyce, Thanks so much for your insight. I feel really positive today. Just got back from the Pulmonologist and he says they seem to have caught it early. I got bronchitis and pneumonia repeatedly over seven months and could not get better. After they exhausted every antibiotic, steroid and Asthma treatment, I was sent for a CT scan. Meanwhile, I had been seeing an Asthma specialist thinking that was causing the shortness of breath. They ruled out everything else before concluding it was PF. He has not indicated another immune disorder, but I do need more testing. He is not recommending a biopsy until I get stronger. Several weeks ago he put me on Prednisone and Azathioprine and they seem to have helped. I have been on Prednisone on and off for months due to pneumonia etc. Many years of experience on this particular drug and I always gain weight despite the fact that I don't eat. However, I feel better than I have in months. I will need O2 for exertion (most everything is an effort) but I am still awaiting insurance. I miss being more active and playing with my son, so I'm sure that will help. We have been planning some construction for some time and I'm wondering if anyone had any experience with the effects of dust etc. or any environmental issues that seem to worsen the condition. The Doctor encouraged me to carry on as normal with some precautions, but I don't want to worsen things unknowingly. I notice chemicals, smells, and that type of thing do bother me. I appreciate the input. I din't mean to give the impression I was counting my days. I just need to prepare in order to cope. Infomation and planning help me to feel in control. I'm sure I have lots of years for that, but again no one knows. If anything, I feel this diagnosis gives me more opportunity to enjoy life and loved ones. It puts things in perspective and I probably needed that more than most. Again I really appreciate you sharing with me. I am off to get my son and watch my little left handed fast ball thrower wow em on the baseball field. There's nothing that makes me happier. The weather is beautiful and all is good in the world!!! From: Joyce <janne5303> Subject: Re: Newly Diagnosed To: Breathe-Support Date: Friday, May 30, 2008, 6:35 PM Elissa, So glad you decided to land here. We welcome you. I am so sorry that at 41 you find yourself with such a diagnosis. Have you had consults, evaluations, biopsy, etc. to confirm the diagnosis? Have you been diagnosed with PF secondary to an autoimmune disorder or IPF. Either way, I always say a duck is a duck. But, you can't number your days nor ask God to do so for you. Each day is a gift. There is nothing cuter in this world than a 9 year old boy. Until I had grandsons, I didn't know that. So enjoy him, use up every day! Your friend's death is so tragic. When I was in the hospital recovering from my biopsy, my husband's coworker's wife died. I had known she was sick, but we weren't friends, so I didn't know of what. She died of Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the same diagnosis. Had not even heard the name of it before. But, it scared me to death. I came home from the hospital to wait to die. I was 52. A couple of different friends came to yell at me and get me moving again. That was 11 years ago. No need to try and guestimate or wait. Just live, trust God, love that boy. Other things will work themselves out. If it is an option for you, go to rehab. A real eye opener. Again, welcome. Hugs, Joyce D. Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 ......I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > > Hello Everyone! > > My name is Elissa (like no M). I have recenly been diagnosed > with PF. I guess I am still in the shock and comprehend stage. I am > 41 years old with a 9 year old son. I have been reading through the > messages and gained strength from all of you. However, I must > confess that I still am mourning the life I thought I would have and > preparing for this new course. I guess that's the main reason I'm > here. To find out what that course is going to be and how to prepare > for it. Awhile after I found out I have this disease, a friend the > same age died unexpectedly. Today I went to her funeral and watched > her nine year old play with mine. It put things in perspective a > bit. I have to feel some appreciation that I get the time to prepare > my family for the inevitable. On the other hand nobody knows how > much time they have and there is no truer statement than to live > everyday as if it's your last. The funny thing is, I finally > realized that about 7 months ago and decided to change my life. > After years of trying to get ahead and building 2 businesses with my > husband, I decided it's time to enjoy my son and family. Almost > immediately I got sick and never recovered. I kept telling everyone, > this is the year I get my life back. I hope this doesn't ring too > much of negativity, but I just find it ironic. I do feel there will > be many positive things to come from this situation. My family and > friends have really shown their support and love. That is such an > amazing feeling. But I must admit handling people has been a > challenge for me. I am a realist and when people say, "Oh, you'll be > fine." it is annoying to me. If anybody has any suggestions on how > to convey the situation it would be helpful. Oh, and I don't have > medical insurance. I've been paying cash to all these appointments, > x-rays, tests and the CT scan. Honestly, I still paid less than > many people pay in monthly insurance payments. My Doctor warned me > that is about to change and am scrambling to obtain insurance. I've > had Asthma since I was a child and numerous bouts with pneumonia and > bronchitis. I always joked with everyone that my lungs would kill > me. Well I hope my ramblings are not inappropriate and I do feel > better to get it off my chest. I was recently asked if I was angry > about the situation. Definately not. I believe the Lord has a plan > for me and I am scrambling to figure it out. I just want to get > through this with dignity and grace. Be a good example of a life > well lived. I know many of you are just that and I look forward to > getting to know you better. I have many questions, but another > time. Thanks for the space. > > Elissa > Age 41, PF 5/08 > No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 Good for you. I need a passion. I like to scrapbook but need to get started back with it. It just takes doing it. Don has no passion and what he used to like (TV) he cares nothing about. K Zion wrote: K. , My illness caused my retirement too. My pottery is a passion that even NSIP will not stop.I told the doctors that no matter what I'd still work with the clay. The pulmonologist said that we'd figure out a way if the clay in any way caused this mess. Well the OLB showed "No" for the clay...hurray!So, I use masks, stay away from the oil painting class rooms, and I don't spray any glazes.I wear protective gear, mask or big respirator mask. Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Kennelly wrote: So Z is potting what you did after you retired? I took the last box from school today and have a feeling of dread after I took the last look at my room. Am I being melodramatic? K Illinois Zion <ljz741verizon (DOT) net> wrote: Elissa, I can give you some information about ways to protect yourself from the dust, etc.I am a potter and have not stopped messiing with the clay because of my diagnosis. I just usevery protect gear.One website ...www.ICanBreathe.com...has many different types of goodprotective masks. I use the ones with the removable activated carbon filters.They filter out the dust and the smells too.I don't think I officially welcomed you to the "air family".So...WELCOME! Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]-->Elissa Casper wrote: Joyce, Thanks so much for your insight. I feel really positive today. Just got back from the Pulmonologist and he says they seem to have caught it early. I got bronchitis and pneumonia repeatedly over seven months and could not get better. After they exhausted every antibiotic, steroid and Asthma treatment, I was sent for a CT scan. Meanwhile, I had been seeing an Asthma specialist thinking that was causing the shortness of breath. They ruled out everything else before concluding it was PF. He has not indicated another immune disorder, but I do need more testing. He is not recommending a biopsy until I get stronger. Several weeks ago he put me on Prednisone and Azathioprine and they seem to have helped. I have been on Prednisone on and off for months due to pneumonia etc. Many years of experience on this particular drug and I always gain weight despite the fact that I don't eat. However, I feel better than I have in months. I will need O2 for exertion (most everything is an effort) but I am still awaiting insurance. I miss being more active and playing with my son, so I'm sure that will help. We have been planning some construction for some time and I'm wondering if anyone had any experience with the effects of dust etc. or any environmental issues that seem to worsen the condition. The Doctor encouraged me to carry on as normal with some precautions, but I don't want to worsen things unknowingly. I notice chemicals, smells, and that type of thing do bother me. I appreciate the input. I din't mean to give the impression I was counting my days. I just need to prepare in order to cope. Infomation and planning help me to feel in control. I'm sure I have lots of years for that, but again no one knows. If anything, I feel this diagnosis gives me more opportunity to enjoy life and loved ones. It puts things in perspective and I probably needed that more than most. Again I really appreciate you sharing with me. I am off to get my son and watch my little left handed fast ball thrower wow em on the baseball field. There's nothing that makes me happier. The weather is beautiful and all is good in the world!!! From: Joyce <janne5303>Subject: Re: Newly DiagnosedTo: Breathe-Support Date: Friday, May 30, 2008, 6:35 PM Elissa, So glad you decided to land here. We welcome you. I am so sorry that at 41 you find yourself with such a diagnosis. Have you had consults, evaluations, biopsy, etc. to confirm the diagnosis? Have you been diagnosed with PF secondary to an autoimmune disorder or IPF. Either way, I always say a duck is a duck. But, you can't number your days nor ask God to do so for you. Each day is a gift. There is nothing cuter in this world than a 9 year old boy. Until I had grandsons, I didn't know that. So enjoy him, use up every day! Your friend's death is so tragic. When I was in the hospital recovering from my biopsy, my husband's coworker's wife died. I had known she was sick, but we weren't friends, so I didn't know of what. She died of Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the same diagnosis. Had not even heard the name of it before. But, it scared me to death. I came home from the hospital to wait to die. I was 52. A couple of different friends came to yell at me and get me moving again. That was 11 years ago. No need to try and guestimate or wait. Just live, trust God, love that boy. Other things will work themselves out. If it is an option for you, go to rehab. A real eye opener. Again, welcome. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Hello Everyone!> > My name is Elissa (like no M). I have recenly been diagnosed > with PF. I guess I am still in the shock and comprehend stage. I am > 41 years old with a 9 year old son. I have been reading through the > messages and gained strength from all of you. However, I must > confess that I still am mourning the life I thought I would have and > preparing for this new course. I guess that's the main reason I'm > here. To find out what that course is going to be and how to prepare > for it. Awhile after I found out I have this disease, a friend the > same age died unexpectedly. Today I went to her funeral and watched > her nine year old play with mine. It put things in perspective a > bit. I have to feel some appreciation that I get the time to prepare > my family for the inevitable. On the other hand nobody knows how > much time they have and there is no truer statement than to live > everyday as if it's your last. The funny thing is, I finally > realized that about 7 months ago and decided to change my life. > After years of trying to get ahead and building 2 businesses with my > husband, I decided it's time to enjoy my son and family. Almost > immediately I got sick and never recovered. I kept telling everyone, > this is the year I get my life back. I hope this doesn't ring too > much of negativity, but I just find it ironic. I do feel there will > be many positive things to come from this situation. My family and > friends have really shown their support and love. That is such an > amazing feeling. But I must admit handling people has been a > challenge for me. I am a realist and when people say, "Oh, you'll be > fine." it is annoying to me. If anybody has any suggestions on how > to convey the situation it would be helpful. Oh, and I don't have > medical insurance. I've been paying cash to all these appointments, > x-rays, tests and the CT scan. Honestly, I still paid less than > many people pay in monthly insurance payments. My Doctor warned me > that is about to change and am scrambling to obtain insurance. I've > had Asthma since I was a child and numerous bouts with pneumonia and > bronchitis. I always joked with everyone that my lungs would kill > me. Well I hope my ramblings are not inappropriate and I do feel > better to get it off my chest. I was recently asked if I was angry > about the situation. Definately not. I believe the Lord has a plan > for me and I am scrambling to figure it out. I just want to get > through this with dignity and grace. Be a good example of a life > well lived. I know many of you are just that and I look forward to > getting to know you better. I have many questions, but another > time. Thanks for the space.> > Elissa> Age 41, PF 5/08> No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 , Scrap booking is so much fun. I love to listen to music. My mom when I was younger, she tried to teach me knitting, it didn't work.... Irene ---- Original Message ---- To: Breathe-Support Sent: Fri, 30 May 2008 7:25 pm Subject: Re: Re: Z Good for you. I need a passion. I like to scrapbook but need to get started back with it. It just takes doing it. Don has no passion and what he used to like (TV) he cares nothing about. K Zion <ljz741verizon (DOT) net> wrote: K. , My illness caused my retirement too. My pottery is a passion that even NSIP will not stop. I told the doctors that no matter what I'd still work with the clay. The pulmonologist said that we'd figure out a way if the clay in any way caused this mess. Well the OLB showed "No" for the clay...hurray! So, I use masks, stay away from the oil painting class rooms, and I don't spray any glazes. I wear protective gear, mask or big respirator mask. Z 64, fibriotic NSIP/o5/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Kennelly wrote: So Z is potting what you did after you retired? I took the last box from school today and have a feeling of dread after I took the last look at my room. Am I being melodramatic? K Illinois Zion <ljz741verizon (DOT) net> wrote: Elissa, I can give you some information about ways to protect yourself from the dust, etc. I am a potter and have not stopped messiing with the clay because of my diagnosis. I just use very protect gear. One website ...www.ICanBreathe.com...has many different types of good protective masks. I use the ones with the removable activated carbon filters. They filter out the dust and the smells too. I don't think I officially welcomed you to the "air family". So...WELCOME! Z 64, fibriotic NSIP/o5/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Elissa Casper wrote: Joyce, Thanks so much for your insight. I feel really positive today. Just got back from the Pulmonologist and he says they seem to have caught it early. I got bronchitis and pneumonia repeatedly over seven months and could not get better. After they exhausted every antibiotic, steroid and Asthma treatment, I was sent for a CT scan. Meanwhile, I had been seeing an Asthma specialist thinking that was causing the shortness of breath. They ruled out everything else before concluding it was PF. He has not indicated another immune disorder, but I do need more testing. He is not recommending a biopsy until I get stronger. Several weeks ago he put me on Prednisone and Azathioprine and they seem to have helped. I have been on Prednisone on and off for months due to pneumonia etc. Many years of experience on this particular drug and I always gain weight despite the fact that I don't eat. However, I feel better than I have in months. I will need O2 for exertion (most everything is an effort) but I am still awaiting insurance. I miss being more active and playing with my son, so I'm sure that will help. We have been planning some construction for some time and I'm wondering if anyone had any experience with the effects of dust etc. or any environmental issues that seem to worsen the condition. The Doctor encouraged me to carry on as normal with some precautions, but I don't want to worsen things unknowingly. I notice chemicals, smells, and that type of thing do bother me. I appreciate the input. I din't mean to give the impression I was counting my days. I just need to prepare in order to cope. Infomation and planning help me to feel in control. I'm sure I have lots of years for that, but again no one knows. If anything, I feel this diagnosis gives me more opportunity to enjoy life and loved ones. It puts things in perspective and I probably needed that more than most. Again I really appreciate you sharing with me. I am off to get my son and watch my little left handed fast ball thrower wow em on the baseball field. There's nothing that makes me happier. The weather is beautiful and all is good in the world!!! From: Joyce <janne5303> Subject: Re: Newly Diagnosed To: Breathe-Support Date: Friday, May 30, 2008, 6:35 PM Elissa, So glad you decided to land here. We welcome you. I am so sorry that at 41 you find yourself with such a diagnosis. Have you had consults, evaluations, biopsy, etc. to confirm the diagnosis? Have you been diagnosed with PF secondary to an autoimmune disorder or IPF. Either way, I always say a duck is a duck. But, you can't number your days nor ask God to do so for you. Each day is a gift. There is nothing cuter in this world than a 9 year old boy. Until I had grandsons, I didn't know that. So enjoy him, use up every day! Your friend's death is so tragic. When I was in the hospital recovering from my biopsy, my husband's coworker's wife died. I had known she was sick, but we weren't friends, so I didn't know of what. She died of Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the same diagnosis. Had not even heard the name of it before. But, it scared me to death. I came home from the hospital to wait to die. I was 52. A couple of different friends came to yell at me and get me moving again. That was 11 years ago. No need to try and guestimate or wait. Just live, trust God, love that boy. Other things will work themselves out. If it is an option for you, go to rehab. A real eye opener. Again, welcome. Hugs, Joyce D. Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 ......I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > > Hello Everyone! > > My name is Elissa (like no M). I have recenly been diagnosed > with PF. I guess I am still in the shock and comprehend stage. I am > 41 years old with a 9 year old son. I have been reading through the > messages and gained strength from all of you. However, I must > confess that I still am mourning the life I thought I would have and > preparing for this new course. I guess that's the main reason I'm > here. To find out what that course is going to be and how to prepare > for it. Awhile after I found out I have this disease, a friend the > same age died unexpectedly. Today I went to her funeral and watched > her nine year old play with mine. It put things in perspective a > bit. I have to feel some appreciation that I get the time to prepare > my family for the inevitable. On the other hand nobody knows how > much time they have and there is no truer statement than to live > everyday as if it's your last. The funny thing is, I finally > realized that about 7 months ago and decided to change my life. > After years of trying to get ahead and building 2 businesses with my > husband, I decided it's time to enjoy my son and family. Almost > immediately I got sick and never recovered. I kept telling everyone, > this is the year I get my life back. I hope this doesn't ring too > much of negativity, but I just find it ironic. I do feel there will > be many positive things to come from this situation. My family and > friends have really shown their support and love. That is such an > amazing feeling. But I must admit handling people has been a > challenge for me. I am a realist and when people say, "Oh, you'll be > fine." it is annoying to me. If anybody has any suggestions on how > to convey the situation it would be helpful. Oh, and I don't have > medical insurance. I've been paying cash to all these appointments, > x-rays, tests and the CT scan. Honestly, I still paid less than > many people pay in monthly insurance payments. My Doctor warned me > that is about to change and am scrambling to obtain insurance. I've > had Asthma since I was a child and numerous bouts with pneumonia and > bronchitis. I always joked with everyone that my lungs would kill > me. Well I hope my ramblings are not inappropriate and I do feel > better to get it off my chest. I was recently asked if I was angry > about the situation. Definately not. I believe the Lord has a plan > for me and I am scrambling to figure it out. I just want to get > through this with dignity and grace. Be a good example of a life > well lived. I know many of you are just that and I look forward to > getting to know you better. I have many questions, but another > time. Thanks for the space. > > Elissa > Age 41, PF 5/08 > No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 My mother tried to teach me crocheting. It didn't work either. Funny! I too like music but Don hates music, and because he doesn't hear well, it sounds like terrible noises in the background. So I can't listen to it when he is near. K Illinois Irene wrote: ,Scrap booking is so much fun. I love to listen to music. My mom when I was younger, she tried to teach me knitting, it didn't work....Irene---- Original Message ----From: Kennelly <l_kennelly>To: Breathe-Support Sent: Fri, 30 May 2008 7:25 pmSubject: Re: Re: Z Good for you. I need a passion. I like to scrapbook but need to get started back with it. It just takes doing it. Don has no passion and what he used to like (TV) he cares nothing about. K Zion <ljz741verizon (DOT) net> wrote: K. , My illness caused my retirement too. My pottery is a passion that even NSIP will not stop.I told the doctors that no matter what I'd still work with the clay. The pulmonologist said that we'd figure out a way if the clay in any way caused this mess. Well the OLB showed "No" for the clay...hurray!So, I use masks, stay away from the oil painting class rooms, and I don't spray any glazes.I wear protective gear, mask or big respirator mask. Z 64, fibriotic NSIP/o5/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Kennelly wrote: So Z is potting what you did after you retired? I took the last box from school today and have a feeling of dread after I took the last look at my room. Am I being melodramatic? K Illinois Zion <ljz741verizon (DOT) net> wrote: Elissa, I can give you some information about ways to protect yourself from the dust, etc.I am a potter and have not stopped messiing with the clay because of my diagnosis. I just usevery protect gear.One website ...www.ICanBreathe.com...has many different types of goodprotective masks. I use the ones with the removable activated carbon filters.They filter out the dust and the smells too.I don't think I officially welcomed you to the "air family".So...WELCOME! Z 64, fibriotic NSIP/o5/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]-->Elissa Casper wrote: Joyce, Thanks so much for your insight. I feel really positive today. Just got back from the Pulmonologist and he says they seem to have caught it early. I got bronchitis and pneumonia repeatedly over seven months and could not get better. After they exhausted every antibiotic, steroid and Asthma treatment, I was sent for a CT scan. Meanwhile, I had been seeing an Asthma specialist thinking that was causing the shortness of breath. They ruled out everything else before concluding it was PF. He has not indicated another immune disorder, but I do need more testing. He is not recommending a biopsy until I get stronger. Several weeks ago he put me on Prednisone and Azathioprine and they seem to have helped. I have been on Prednisone on and off for months due to pneumonia etc. Many years of experience on this particular drug and I always gain weight despite the fact that I don't eat. However, I feel better than I have in months. I will need O2 for exertion (most everything is an effort) but I am still awaiting insurance. I miss being more active and playing with my son, so I'm sure that will help. We have been planning some construction for some time and I'm wondering if anyone had any experience with the effects of dust etc. or any environmental issues that seem to worsen the condition. The Doctor encouraged me to carry on as normal with some precautions, but I don't want to worsen things unknowingly. I notice chemicals, smells, and that type of thing do bother me. I appreciate the input. I din't mean to give the impression I was counting my days. I just need to prepare in order to cope. Infomation and planning help me to feel in control. I'm sure I have lots of years for that, but again no one knows. If anything, I feel this diagnosis gives me more opportunity to enjoy life and loved ones. It puts things in perspective and I probably needed that more than most. Again I really appreciate you sharing with me. I am off to get my son and watch my little left handed fast ball thrower wow em on the baseball field. There's nothing that makes me happier. The weather is beautiful and all is good in the world!!! From: Joyce <janne5303>Subject: Re: Newly DiagnosedTo: Breathe-Support Date: Friday, May 30, 2008, 6:35 PM Elissa, So glad you decided to land here. We welcome you. I am so sorry that at 41 you find yourself with such a diagnosis. Have you had consults, evaluations, biopsy, etc. to confirm the diagnosis? Have you been diagnosed with PF secondary to an autoimmune disorder or IPF. Either way, I always say a duck is a duck. But, you can't number your days nor ask God to do so for you. Each day is a gift. There is nothing cuter in this world than a 9 year old boy. Until I had grandsons, I didn't know that. So enjoy him, use up every day! Your friend's death is so tragic. When I was in the hospital recovering from my biopsy, my husband's coworker's wife died. I had known she was sick, but we weren't friends, so I didn't know of what. She died of Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the same diagnosis. Had not even heard the name of it before. But, it scared me to death. I came home from the hospital to wait to die. I was 52. A couple of different friends came to yell at me and get me moving again. That was 11 years ago. No need to try and guestimate or wait. Just live, trust God, love that boy. Other things will work themselves out. If it is an option for you, go to rehab. A real eye opener. Again, welcome. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Hello Everyone!> > My name is Elissa (like no M). I have recenly been diagnosed > with PF. I guess I am still in the shock and comprehend stage. I am > 41 years old with a 9 year old son. I have been reading through the > messages and gained strength from all of you. However, I must > confess that I still am mourning the life I thought I would have and > preparing for this new course. I guess that's the main reason I'm > here. To find out what that course is going to be and how to prepare > for it. Awhile after I found out I have this disease, a friend the > same age died unexpectedly. Today I went to her funeral and watched > her nine year old play with mine. It put things in perspective a > bit. I have to feel some appreciation that I get the time to prepare > my family for the inevitable. On the other hand nobody knows how > much time they have and there is no truer statement than to live > everyday as if it's your last. The funny thing is, I finally > realized that about 7 months ago and decided to change my life. > After years of trying to get ahead and building 2 businesses with my > husband, I decided it's time to enjoy my son and family. Almost > immediately I got sick and never recovered. I kept telling everyone, > this is the year I get my life back. I hope this doesn't ring too > much of negativity, but I just find it ironic. I do feel there will > be many positive things to come from this situation. My family and > friends have really shown their support and love. That is such an > amazing feeling. But I must admit handling people has been a > challenge for me. I am a realist and when people say, "Oh, you'll be > fine." it is annoying to me. If anybody has any suggestions on how > to convey the situation it would be helpful. Oh, and I don't have > medical insurance. I've been paying cash to all these appointments, > x-rays, tests and the CT scan. Honestly, I still paid less than > many people pay in monthly insurance payments. My Doctor warned me > that is about to change and am scrambling to obtain insurance. I've > had Asthma since I was a child and numerous bouts with pneumonia and > bronchitis. I always joked with everyone that my lungs would kill > me. Well I hope my ramblings are not inappropriate and I do feel > better to get it off my chest. I was recently asked if I was angry > about the situation. Definately not. I believe the Lord has a plan > for me and I am scrambling to figure it out. I just want to get > through this with dignity and grace. Be a good example of a life > well lived. I know many of you are just that and I look forward to > getting to know you better. I have many questions, but another > time. Thanks for the space.> > Elissa> Age 41, PF 5/08> No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 Sometimes, I play music from my favourite singer and sing to his music...and my mom says to me You put that idiot again......lol! Irene ---- Original Message ---- To: Breathe-Support Sent: Fri, 30 May 2008 7:37 pm Subject: Re: Re: Z My mother tried to teach me crocheting. It didn't work either. Funny! I too like music but Don hates music, and because he doesn't hear well, it sounds like terrible noises in the background. So I can't listen to it when he is near. K Illinois Irene <Irn3183aim> wrote: , Scrap booking is so much fun. I love to listen to music. My mom when I was younger, she tried to teach me knitting, it didn't work.... Irene ---- Original Message ---- From: Kennelly <l_kennelly> To: Breathe-Support Sent: Fri, 30 May 2008 7:25 pm Subject: Re: Re: Z Good for you. I need a passion. I like to scrapbook but need to get started back with it. It just takes doing it. Don has no passion and what he used to like (TV) he cares nothing about. K Zion <ljz741verizon (DOT) net> wrote: K. , My illness caused my retirement too. My pottery is a passion that even NSIP will not stop. I told the doctors that no matter what I'd still work with the clay. The pulmonologist said that we'd figure out a way if the clay in any way caused this mess. Well the OLB showed "No" for the clay...hurray! So, I use masks, stay away from the oil painting class rooms, and I don't spray any glazes. I wear protective gear, mask or big respirator mask. Z 64, fibriotic NSIP/o5/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Kennelly wrote: So Z is potting what you did after you retired? I took the last box from school today and have a feeling of dread after I took the last look at my room. Am I being melodramatic? K Illinois Zion <ljz741verizon (DOT) net> wrote: Elissa, I can give you some information about ways to protect yourself from the dust, etc. I am a potter and have not stopped messiing with the clay because of my diagnosis. I just use very protect gear. One website ...www.ICanBreathe.com...has many different types of good protective masks. I use the ones with the removable activated carbon filters. They filter out the dust and the smells too. I don't think I officially welcomed you to the "air family". So...WELCOME! Z 64, fibriotic NSIP/o5/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Elissa Casper wrote: Joyce, Thanks so much for your insight. I feel really positive today. Just got back from the Pulmonologist and he says they seem to have caught it early. I got bronchitis and pneumonia repeatedly over seven months and could not get better. After they exhausted every antibiotic, steroid and Asthma treatment, I was sent for a CT scan. Meanwhile, I had been seeing an Asthma specialist thinking that was causing the shortness of breath. They ruled out everything else before concluding it was PF. He has not indicated another immune disorder, but I do need more testing. He is not recommending a biopsy until I get stronger. Several weeks ago he put me on Prednisone and Azathioprine and they seem to have helped. I have been on Prednisone on and off for months due to pneumonia etc. Many years of experience on this particular drug and I always gain weight despite the fact that I don't eat. However, I feel better than I have in months. I will need O2 for exertion (most everything is an effort) but I am still awaiting insurance. I miss being more active and playing with my son, so I'm sure that will help. We have been planning some construction for some time and I'm wondering if anyone had any experience with the effects of dust etc. or any environmental issues that seem to worsen the condition. The Doctor encouraged me to carry on as normal with some precautions, but I don't want to worsen things unknowingly. I notice chemicals, smells, and that type of thing do bother me. I appreciate the input. I din't mean to give the impression I was counting my days. I just need to prepare in order to cope. Infomation and planning help me to feel in control. I'm sure I have lots of years for that, but again no one knows. If anything, I feel this diagnosis gives me more opportunity to enjoy life and loved ones. It puts things in perspective and I probably needed that more than most. Again I really appreciate you sharing with me. I am off to get my son and watch my little left handed fast ball thrower wow em on the baseball field. There's nothing that makes me happier. The weather is beautiful and all is good in the world!!! From: Joyce <janne5303> Subject: Re: Newly Diagnosed To: Breathe-Support Date: Friday, May 30, 2008, 6:35 PM Elissa, So glad you decided to land here. We welcome you. I am so sorry that at 41 you find yourself with such a diagnosis. Have you had consults, evaluations, biopsy, etc. to confirm the diagnosis? Have you been diagnosed with PF secondary to an autoimmune disorder or IPF. Either way, I always say a duck is a duck. But, you can't number your days nor ask God to do so for you. Each day is a gift. There is nothing cuter in this world than a 9 year old boy. Until I had grandsons, I didn't know that. So enjoy him, use up every day! Your friend's death is so tragic. When I was in the hospital recovering from my biopsy, my husband's coworker's wife died. I had known she was sick, but we weren't friends, so I didn't know of what. She died of Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the same diagnosis. Had not even heard the name of it before. But, it scared me to death. I came home from the hospital to wait to die. I was 52. A couple of different friends came to yell at me and get me moving again. That was 11 years ago. No need to try and guestimate or wait. Just live, trust God, love that boy. Other things will work themselves out. If it is an option for you, go to rehab. A real eye opener. Again, welcome. Hugs, Joyce D. Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 ......I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > > Hello Everyone! > > My name is Elissa (like no M). I have recenly been diagnosed > with PF. I guess I am still in the shock and comprehend stage. I am > 41 years old with a 9 year old son. I have been reading through the > messages and gained strength from all of you. However, I must > confess that I still am mourning the life I thought I would have and > preparing for this new course. I guess that's the main reason I'm > here. To find out what that course is going to be and how to prepare > for it. Awhile after I found out I have this disease, a friend the > same age died unexpectedly. Today I went to her funeral and watched > her nine year old play with mine. It put things in perspective a > bit. I have to feel some appreciation that I get the time to prepare > my family for the inevitable. On the other hand nobody knows how > much time they have and there is no truer statement than to live > everyday as if it's your last. The funny thing is, I finally > realized that about 7 months ago and decided to change my life. > After years of trying to get ahead and building 2 businesses with my > husband, I decided it's time to enjoy my son and family. Almost > immediately I got sick and never recovered. I kept telling everyone, > this is the year I get my life back. I hope this doesn't ring too > much of negativity, but I just find it ironic. I do feel there will > be many positive things to come from this situation. My family and > friends have really shown their support and love. That is such an > amazing feeling. But I must admit handling people has been a > challenge for me. I am a realist and when people say, "Oh, you'll be > fine." it is annoying to me. If anybody has any suggestions on how > to convey the situation it would be helpful. Oh, and I don't have > medical insurance. I've been paying cash to all these appointments, > x-rays, tests and the CT scan. Honestly, I still paid less than > many people pay in monthly insurance payments. My Doctor warned me > that is about to change and am scrambling to obtain insurance. I've > had Asthma since I was a child and numerous bouts with pneumonia and > bronchitis. I always joked with everyone that my lungs would kill > me. Well I hope my ramblings are not inappropriate and I do feel > better to get it off my chest. I was recently asked if I was angry > about the situation. Definately not. I believe the Lord has a plan > for me and I am scrambling to figure it out. I just want to get > through this with dignity and grace. Be a good example of a life > well lived. I know many of you are just that and I look forward to > getting to know you better. I have many questions, but another > time. Thanks for the space. > > Elissa > Age 41, PF 5/08 > No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 K. Don might hate music,--but he has to like ROY ORBISON--- doesn't he???? He has to smile when you say Roys name----right?? G. UIP/IPF 5-07 AZ. From: Joyce <janne5303yahoo (DOT) com>Subject: Re: Newly DiagnosedTo: Breathe-Support@ yahoogroups. comDate: Friday, May 30, 2008, 6:35 PM Elissa, So glad you decided to land here. We welcome you. I am so sorry that at 41 you find yourself with such a diagnosis. Have you had consults, evaluations, biopsy, etc. to confirm the diagnosis? Have you been diagnosed with PF secondary to an autoimmune disorder or IPF. Either way, I always say a duck is a duck. But, you can't number your days nor ask God to do so for you. Each day is a gift. There is nothing cuter in this world than a 9 year old boy. Until I had grandsons, I didn't know that. So enjoy him, use up every day! Your friend's death is so tragic. When I was in the hospital recovering from my biopsy, my husband's coworker's wife died. I had known she was sick, but we weren't friends, so I didn't know of what. She died of Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the same diagnosis. Had not even heard the name of it before. But, it scared me to death. I came home from the hospital to wait to die. I was 52. A couple of different friends came to yell at me and get me moving again. That was 11 years ago. No need to try and guestimate or wait. Just live, trust God, love that boy. Other things will work themselves out. If it is an option for you, go to rehab. A real eye opener. Again, welcome. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Hello Everyone!> > My name is Elissa (like no M). I have recenly been diagnosed > with PF. I guess I am still in the shock and comprehend stage. I am > 41 years old with a 9 year old son. I have been reading through the > messages and gained strength from all of you. However, I must > confess that I still am mourning the life I thought I would have and > preparing for this new course. I guess that's the main reason I'm > here. To find out what that course is going to be and how to prepare > for it. Awhile after I found out I have this disease, a friend the > same age died unexpectedly. Today I went to her funeral and watched > her nine year old play with mine. It put things in perspective a > bit. I have to feel some appreciation that I get the time to prepare > my family for the inevitable. On the other hand nobody knows how > much time they have and there is no truer statement than to live > everyday as if it's your last. The funny thing is, I finally > realized that about 7 months ago and decided to change my life. > After years of trying to get ahead and building 2 businesses with my > husband, I decided it's time to enjoy my son and family. Almost > immediately I got sick and never recovered. I kept telling everyone, > this is the year I get my life back. I hope this doesn't ring too > much of negativity, but I just find it ironic. I do feel there will > be many positive things to come from this situation. My family and > friends have really shown their support and love. That is such an > amazing feeling. But I must admit handling people has been a > challenge for me. I am a realist and when people say, "Oh, you'll be > fine." it is annoying to me. If anybody has any suggestions on how > to convey the situation it would be helpful. Oh, and I don't have > medical insurance. I've been paying cash to all these appointments, > x-rays, tests and the CT scan. Honestly, I still paid less than > many people pay in monthly insurance payments. My Doctor warned me > that is about to change and am scrambling to obtain insurance. I've > had Asthma since I was a child and numerous bouts with pneumonia and > bronchitis. I always joked with everyone that my lungs would kill > me. Well I hope my ramblings are not inappropriate and I do feel > better to get it off my chest. I was recently asked if I was angry > about the situation. Definately not. I believe the Lord has a plan > for me and I am scrambling to figure it out. I just want to get > through this with dignity and grace. Be a good example of a life > well lived. I know many of you are just that and I look forward to > getting to know you better. I have many questions, but another > time. Thanks for the space.> > Elissa> Age 41, PF 5/08> No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 K. Get yourself a good set of earphones!!!! The sound cancelling ones...you deserve to have your music!!!! Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Kennelly wrote: My mother tried to teach me crocheting. It didn't work either. Funny! I too like music but Don hates music, and because he doesn't hear well, it sounds like terrible noises in the background. So I can't listen to it when he is near. K Illinois Irene <Irn3183aim> wrote: , Scrap booking is so much fun. I love to listen to music. My mom when I was younger, she tried to teach me knitting, it didn't work.... Irene ---- Original Message ---- From: Kennelly <l_kennelly> To: Breathe-Support Sent: Fri, 30 May 2008 7:25 pm Subject: Re: Re: Z Good for you. I need a passion. I like to scrapbook but need to get started back with it. It just takes doing it. Don has no passion and what he used to like (TV) he cares nothing about. K Zion <ljz741verizon (DOT) net> wrote: K. , My illness caused my retirement too. My pottery is a passion that even NSIP will not stop. I told the doctors that no matter what I'd still work with the clay. The pulmonologist said that we'd figure out a way if the clay in any way caused this mess. Well the OLB showed "No" for the clay...hurray! So, I use masks, stay away from the oil painting class rooms, and I don't spray any glazes. I wear protective gear, mask or big respirator mask. Z 64, fibriotic NSIP/o5/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Kennelly wrote: So Z is potting what you did after you retired? I took the last box from school today and have a feeling of dread after I took the last look at my room. Am I being melodramatic? K Illinois Zion <ljz741verizon (DOT) net> wrote: Elissa, I can give you some information about ways to protect yourself from the dust, etc. I am a potter and have not stopped messiing with the clay because of my diagnosis. I just use very protect gear. One website ...www.ICanBreathe.com...has many different types of good protective masks. I use the ones with the removable activated carbon filters. They filter out the dust and the smells too. I don't think I officially welcomed you to the "air family". So...WELCOME! Z 64, fibriotic NSIP/o5/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Elissa Casper wrote: Joyce, Thanks so much for your insight. I feel really positive today. Just got back from the Pulmonologist and he says they seem to have caught it early. I got bronchitis and pneumonia repeatedly over seven months and could not get better. After they exhausted every antibiotic, steroid and Asthma treatment, I was sent for a CT scan. Meanwhile, I had been seeing an Asthma specialist thinking that was causing the shortness of breath. They ruled out everything else before concluding it was PF. He has not indicated another immune disorder, but I do need more testing. He is not recommending a biopsy until I get stronger. Several weeks ago he put me on Prednisone and Azathioprine and they seem to have helped. I have been on Prednisone on and off for months due to pneumonia etc. Many years of experience on this particular drug and I always gain weight despite the fact that I don't eat. However, I feel better than I have in months. I will need O2 for exertion (most everything is an effort) but I am still awaiting insurance. I miss being more active and playing with my son, so I'm sure that will help. We have been planning some construction for some time and I'm wondering if anyone had any experience with the effects of dust etc. or any environmental issues that seem to worsen the condition. The Doctor encouraged me to carry on as normal with some precautions, but I don't want to worsen things unknowingly. I notice chemicals, smells, and that type of thing do bother me. I appreciate the input. I din't mean to give the impression I was counting my days. I just need to prepare in order to cope. Infomation and planning help me to feel in control. I'm sure I have lots of years for that, but again no one knows. If anything, I feel this diagnosis gives me more opportunity to enjoy life and loved ones. It puts things in perspective and I probably needed that more than most. Again I really appreciate you sharing with me. I am off to get my son and watch my little left handed fast ball thrower wow em on the baseball field. There's nothing that makes me happier. The weather is beautiful and all is good in the world!!! From: Joyce <janne5303> Subject: Re: Newly Diagnosed To: Breathe-Support Date: Friday, May 30, 2008, 6:35 PM Elissa, So glad you decided to land here. We welcome you. I am so sorry that at 41 you find yourself with such a diagnosis. Have you had consults, evaluations, biopsy, etc. to confirm the diagnosis? Have you been diagnosed with PF secondary to an autoimmune disorder or IPF. Either way, I always say a duck is a duck. But, you can't number your days nor ask God to do so for you. Each day is a gift. There is nothing cuter in this world than a 9 year old boy. Until I had grandsons, I didn't know that. So enjoy him, use up every day! Your friend's death is so tragic. When I was in the hospital recovering from my biopsy, my husband's coworker's wife died. I had known she was sick, but we weren't friends, so I didn't know of what. She died of Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the same diagnosis. Had not even heard the name of it before. But, it scared me to death. I came home from the hospital to wait to die. I was 52. A couple of different friends came to yell at me and get me moving again. That was 11 years ago. No need to try and guestimate or wait. Just live, trust God, love that boy. Other things will work themselves out. If it is an option for you, go to rehab. A real eye opener. Again, welcome. Hugs, Joyce D. Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 ......I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > > Hello Everyone! > > My name is Elissa (like no M). I have recenly been diagnosed > with PF. I guess I am still in the shock and comprehend stage. I am > 41 years old with a 9 year old son. I have been reading through the > messages and gained strength from all of you. However, I must > confess that I still am mourning the life I thought I would have and > preparing for this new course. I guess that's the main reason I'm > here. To find out what that course is going to be and how to prepare > for it. Awhile after I found out I have this disease, a friend the > same age died unexpectedly. Today I went to her funeral and watched > her nine year old play with mine. It put things in perspective a > bit. I have to feel some appreciation that I get the time to prepare > my family for the inevitable. On the other hand nobody knows how > much time they have and there is no truer statement than to live > everyday as if it's your last. The funny thing is, I finally > realized that about 7 months ago and decided to change my life. > After years of trying to get ahead and building 2 businesses with my > husband, I decided it's time to enjoy my son and family. Almost > immediately I got sick and never recovered. I kept telling everyone, > this is the year I get my life back. I hope this doesn't ring too > much of negativity, but I just find it ironic. I do feel there will > be many positive things to come from this situation. My family and > friends have really shown their support and love. That is such an > amazing feeling. But I must admit handling people has been a > challenge for me. I am a realist and when people say, "Oh, you'll be > fine." it is annoying to me. If anybody has any suggestions on how > to convey the situation it would be helpful. Oh, and I don't have > medical insurance. I've been paying cash to all these appointments, > x-rays, tests and the CT scan. Honestly, I still paid less than > many people pay in monthly insurance payments. My Doctor warned me > that is about to change and am scrambling to obtain insurance. I've > had Asthma since I was a child and numerous bouts with pneumonia and > bronchitis. I always joked with everyone that my lungs would kill > me. Well I hope my ramblings are not inappropriate and I do feel > better to get it off my chest. I was recently asked if I was angry > about the situation. Definately not. I believe the Lord has a plan > for me and I am scrambling to figure it out. I just want to get > through this with dignity and grace. Be a good example of a life > well lived. I know many of you are just that and I look forward to > getting to know you better. I have many questions, but another > time. Thanks for the space. > > Elissa > Age 41, PF 5/08 > No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 , Oh, we loved Roy Orbison. What a talented genius he was. Wow! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> & gt;> & gt; Hello Everyone!> & gt; > & gt; My name is Elissa (like no M). I have recenly been diagnosed > & gt; with PF. I guess I am still in the shock and comprehend stage. I am > & gt; 41 years old with a 9 year old son. I have been reading through the > & gt; messages and gained strength from all of you. However, I must > & gt; confess that I still am mourning the life I thought I would have and > & gt; preparing for this new course. I guess that's the main reason I'm > & gt; here. To find out what that course is going to be and how to prepare > & gt; for it. Awhile after I found out I have this disease, a friend the > & gt; same age died unexpectedly. Today I went to her funeral and watched > & gt; her nine year old play with mine. It put things in perspective a > & gt; bit. I have to feel some appreciation that I get the time to prepare > & gt; my family for the inevitable. On the other hand nobody knows how > & gt; much time they have and there is no truer statement than to live > & gt; everyday as if it's your last. The funny thing is, I finally > & gt; realized that about 7 months ago and decided to change my life. > & gt; After years of trying to get ahead and building 2 businesses with my > & gt; husband, I decided it's time to enjoy my son and family. Almost > & gt; immediately I got sick and never recovered. I kept telling everyone, > & gt; this is the year I get my life back. I hope this doesn't ring too > & gt; much of negativity, but I just find it ironic. I do feel there will > & gt; be many positive things to come from this situation. My family and > & gt; friends have really shown their support and love. That is such an > & gt; amazing feeling. But I must admit handling people has been a > & gt; challenge for me. I am a realist and when people say, "Oh, you'll be > & gt; fine." it is annoying to me. If anybody has any suggestions on how > & gt; to convey the situation it would be helpful. Oh, and I don't have > & gt; medical insurance. I've been paying cash to all these appointments, > & gt; x-rays, tests and the CT scan. Honestly, I still paid less than > & gt; many people pay in monthly insurance payments. My Doctor warned me > & gt; that is about to change and am scrambling to obtain insurance. I've > & gt; had Asthma since I was a child and numerous bouts with pneumonia and > & gt; bronchitis. I always joked with everyone that my lungs would kill > & gt; me. Well I hope my ramblings are not inappropriate and I do feel > & gt; better to get it off my chest. I was recently asked if I was angry > & gt; about the situation. Definately not. I believe the Lord has a plan > & gt; for me and I am scrambling to figure it out. I just want to get > & gt; through this with dignity and grace. Be a good example of a life > & gt; well lived. I know many of you are just that and I look forward to > & gt; getting to know you better. I have many questions, but another > & gt; time. Thanks for the space.> & gt; > & gt; Elissa> & gt; Age 41, PF 5/08> & gt;> > No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> > > > Meet the new AOL.ca. Free radio, music, videos, news & amp; entertainment – with a Canadian perspective.> > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> > > > Meet the new AOL.ca. Free radio, music, videos, news & amp; entertainment – with a Canadian perspective.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 I love Roy Orbison, but he doesn't even know the name. LOL He is just going to have to be "Only the Lonely" on the this one. K IllinoisJoyce wrote: , Oh, we loved Roy Orbison. What a talented genius he was. Wow! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> & gt;> & gt; Hello Everyone!> & gt; > & gt; My name is Elissa (like no M). I have recenly been diagnosed > & gt; with PF. I guess I am still in the shock and comprehend stage. I am > & gt; 41 years old with a 9 year old son. I have been reading through the > & gt; messages and gained strength from all of you. However, I must > & gt; confess that I still am mourning the life I thought I would have and > & gt; preparing for this new course. I guess that's the main reason I'm > & gt; here. To find out what that course is going to be and how to prepare > & gt; for it. Awhile after I found out I have this disease, a friend the > & gt; same age died unexpectedly. Today I went to her funeral and watched > & gt; her nine year old play with mine. It put things in perspective a > & gt; bit. I have to feel some appreciation that I get the time to prepare > & gt; my family for the inevitable. On the other hand nobody knows how > & gt; much time they have and there is no truer statement than to live > & gt; everyday as if it's your last. The funny thing is, I finally > & gt; realized that about 7 months ago and decided to change my life. > & gt; After years of trying to get ahead and building 2 businesses with my > & gt; husband, I decided it's time to enjoy my son and family. Almost > & gt; immediately I got sick and never recovered. I kept telling everyone, > & gt; this is the year I get my life back. I hope this doesn't ring too > & gt; much of negativity, but I just find it ironic. I do feel there will > & gt; be many positive things to come from this situation. My family and > & gt; friends have really shown their support and love. That is such an > & gt; amazing feeling. But I must admit handling people has been a > & gt; challenge for me. I am a realist and when people say, "Oh, you'll be > & gt; fine." it is annoying to me. If anybody has any suggestions on how > & gt; to convey the situation it would be helpful. Oh, and I don't have > & gt; medical insurance. I've been paying cash to all these appointments, > & gt; x-rays, tests and the CT scan. Honestly, I still paid less than > & gt; many people pay in monthly insurance payments. My Doctor warned me > & gt; that is about to change and am scrambling to obtain insurance. I've > & gt; had Asthma since I was a child and numerous bouts with pneumonia and > & gt; bronchitis. I always joked with everyone that my lungs would kill > & gt; me. Well I hope my ramblings are not inappropriate and I do feel > & gt; better to get it off my chest. I was recently asked if I was angry > & gt; about the situation. Definately not. I believe the Lord has a plan > & gt; for me and I am scrambling to figure it out. I just want to get > & gt; through this with dignity and grace. Be a good example of a life > & gt; well lived. I know many of you are just that and I look forward to > & gt; getting to know you better. I have many questions, but another > & gt; time. Thanks for the space.> & gt; > & gt; Elissa> & gt; Age 41, PF 5/08> & gt;> > No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> > > > Meet the new AOL.ca. Free radio, music, videos, news & amp; entertainment – with a Canadian perspective.> > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> > > > Meet the new AOL.ca. Free radio, music, videos, news & amp; entertainment – with a Canadian perspective.> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 I never thought of earphones!!!!Duh!!!!! Thanks. K Ill Zion wrote: K. Get yourself a good set of earphones!!!!The sound cancelling ones...you deserve to have your music!!!! Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Kennelly wrote: My mother tried to teach me crocheting. It didn't work either. Funny! I too like music but Don hates music, and because he doesn't hear well, it sounds like terrible noises in the background. So I can't listen to it when he is near. K Illinois Irene <Irn3183aim> wrote: ,Scrap booking is so much fun. I love to listen to music. My mom when I was younger, she tried to teach me knitting, it didn't work....Irene---- Original Message ----From: Kennelly <l_kennelly>To: Breathe-Support Sent: Fri, 30 May 2008 7:25 pmSubject: Re: Re: Z Good for you. I need a passion. I like to scrapbook but need to get started back with it. It just takes doing it. Don has no passion and what he used to like (TV) he cares nothing about. K Zion <ljz741verizon (DOT) net> wrote: K. , My illness caused my retirement too. My pottery is a passion that even NSIP will not stop.I told the doctors that no matter what I'd still work with the clay. The pulmonologist said that we'd figure out a way if the clay in any way caused this mess. Well the OLB showed "No" for the clay...hurray!So, I use masks, stay away from the oil painting class rooms, and I don't spray any glazes.I wear protective gear, mask or big respirator mask. Z 64, fibriotic NSIP/o5/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Kennelly wrote: So Z is potting what you did after you retired? I took the last box from school today and have a feeling of dread after I took the last look at my room. Am I being melodramatic? K Illinois Zion <ljz741verizon (DOT) net> wrote: Elissa, I can give you some information about ways to protect yourself from the dust, etc.I am a potter and have not stopped messiing with the clay because of my diagnosis. I just usevery protect gear.One website ...www.ICanBreathe.com...has many different types of goodprotective masks. I use the ones with the removable activated carbon filters.They filter out the dust and the smells too.I don't think I officially welcomed you to the "air family".So...WELCOME! Z 64, fibriotic NSIP/o5/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]-->Elissa Casper wrote: Joyce, Thanks so much for your insight. I feel really positive today. Just got back from the Pulmonologist and he says they seem to have caught it early. I got bronchitis and pneumonia repeatedly over seven months and could not get better. After they exhausted every antibiotic, steroid and Asthma treatment, I was sent for a CT scan. Meanwhile, I had been seeing an Asthma specialist thinking that was causing the shortness of breath. They ruled out everything else before concluding it was PF. He has not indicated another immune disorder, but I do need more testing. He is not recommending a biopsy until I get stronger. Several weeks ago he put me on Prednisone and Azathioprine and they seem to have helped. I have been on Prednisone on and off for months due to pneumonia etc. Many years of experience on this particular drug and I always gain weight despite the fact that I don't eat. However, I feel better than I have in months. I will need O2 for exertion (most everything is an effort) but I am still awaiting insurance. I miss being more active and playing with my son, so I'm sure that will help. We have been planning some construction for some time and I'm wondering if anyone had any experience with the effects of dust etc. or any environmental issues that seem to worsen the condition. The Doctor encouraged me to carry on as normal with some precautions, but I don't want to worsen things unknowingly. I notice chemicals, smells, and that type of thing do bother me. I appreciate the input. I din't mean to give the impression I was counting my days. I just need to prepare in order to cope. Infomation and planning help me to feel in control. I'm sure I have lots of years for that, but again no one knows. If anything, I feel this diagnosis gives me more opportunity to enjoy life and loved ones. It puts things in perspective and I probably needed that more than most. Again I really appreciate you sharing with me. I am off to get my son and watch my little left handed fast ball thrower wow em on the baseball field. There's nothing that makes me happier. The weather is beautiful and all is good in the world!!! From: Joyce <janne5303>Subject: Re: Newly DiagnosedTo: Breathe-Support Date: Friday, May 30, 2008, 6:35 PM Elissa, So glad you decided to land here. We welcome you. I am so sorry that at 41 you find yourself with such a diagnosis. Have you had consults, evaluations, biopsy, etc. to confirm the diagnosis? Have you been diagnosed with PF secondary to an autoimmune disorder or IPF. Either way, I always say a duck is a duck. But, you can't number your days nor ask God to do so for you. Each day is a gift. There is nothing cuter in this world than a 9 year old boy. Until I had grandsons, I didn't know that. So enjoy him, use up every day! Your friend's death is so tragic. When I was in the hospital recovering from my biopsy, my husband's coworker's wife died. I had known she was sick, but we weren't friends, so I didn't know of what. She died of Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the same diagnosis. Had not even heard the name of it before. But, it scared me to death. I came home from the hospital to wait to die. I was 52. A couple of different friends came to yell at me and get me moving again. That was 11 years ago. No need to try and guestimate or wait. Just live, trust God, love that boy. Other things will work themselves out. If it is an option for you, go to rehab. A real eye opener. Again, welcome. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Hello Everyone!> > My name is Elissa (like no M). I have recenly been diagnosed > with PF. I guess I am still in the shock and comprehend stage. I am > 41 years old with a 9 year old son. I have been reading through the > messages and gained strength from all of you. However, I must > confess that I still am mourning the life I thought I would have and > preparing for this new course. I guess that's the main reason I'm > here. To find out what that course is going to be and how to prepare > for it. Awhile after I found out I have this disease, a friend the > same age died unexpectedly. Today I went to her funeral and watched > her nine year old play with mine. It put things in perspective a > bit. I have to feel some appreciation that I get the time to prepare > my family for the inevitable. On the other hand nobody knows how > much time they have and there is no truer statement than to live > everyday as if it's your last. The funny thing is, I finally > realized that about 7 months ago and decided to change my life. > After years of trying to get ahead and building 2 businesses with my > husband, I decided it's time to enjoy my son and family. Almost > immediately I got sick and never recovered. I kept telling everyone, > this is the year I get my life back. I hope this doesn't ring too > much of negativity, but I just find it ironic. I do feel there will > be many positive things to come from this situation. My family and > friends have really shown their support and love. That is such an > amazing feeling. But I must admit handling people has been a > challenge for me. I am a realist and when people say, "Oh, you'll be > fine." it is annoying to me. If anybody has any suggestions on how > to convey the situation it would be helpful. Oh, and I don't have > medical insurance. I've been paying cash to all these appointments, > x-rays, tests and the CT scan. Honestly, I still paid less than > many people pay in monthly insurance payments. My Doctor warned me > that is about to change and am scrambling to obtain insurance. I've > had Asthma since I was a child and numerous bouts with pneumonia and > bronchitis. I always joked with everyone that my lungs would kill > me. Well I hope my ramblings are not inappropriate and I do feel > better to get it off my chest. I was recently asked if I was angry > about the situation. Definately not. I believe the Lord has a plan > for me and I am scrambling to figure it out. I just want to get > through this with dignity and grace. Be a good example of a life > well lived. I know many of you are just that and I look forward to > getting to know you better. I have many questions, but another > time. Thanks for the space.> > Elissa> Age 41, PF 5/08> No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.4/1474 - Release Date: 5/30/2008 7:44 AM K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
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