Thoughts on surviving

[Guest guest]

Hi everyone,

The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us.

Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people.

Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke.

I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.... Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.

I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over.

One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

Beth

WOW!!!!

Very well put. It's like you were reading my thoughts. It's weird but this group is the only place I can say that I have "lived" more since diagnose. I have tried to express that to friends and family and I get the nod or the smile and I know that they don’t have a clue of what I am talking about. I have prayed that my kids could look and experience life like this with out the baggage of this disease.

Obviously I don’t want to be sick but I have to say I feel I have missed so much of life before I realized how much is out there and what is really important to and for me. Thank you Beth for reminding me that I am here for a reason and need to “LIVE†everyday

Walt DX 06 PF,NSIP,UIP

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€

Subject: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 6:49 AM

Hi everyone,

The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us.

Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people.

Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke.

I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.

I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over.

One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

Beth

WOW!!!!

Very well put. It's like you were reading my thoughts. It's weird but this group is the only place I can say that I have "lived" more since diagnose. I have tried to express that to friends and family and I get the nod or the smile and I know that they don’t have a clue of what I am talking about. I have prayed that my kids could look and experience life like this with out the baggage of this disease.

Obviously I don’t want to be sick but I have to say I feel I have missed so much of life before I realized how much is out there and what is really important to and for me. Thank you Beth for reminding me that I am here for a reason and need to “LIVE†everyday

Walt DX 06 PF,NSIP,UIP

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€

Subject: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 6:49 AM

Hi everyone,

The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us.

Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people.

Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke.

I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.

I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over.

One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

Hi MB, So happy you are home and happy and WAY COOL.. I know you got enough lovin, hugs and kisses to last for a few months.You know your story makes me cry... All the young ones here are so close to me heart. Well, I won't go there cause I cannot deal with anymore moisture in my head.. You would think by now I would be able to accept newbies with a hello and sorry you had need of us.... NO I am just a softie the older I get..LOL must be all the moisture softening my head. Anyhooo Take it easy this week and do nothing but resttttt. How was your Dr. visit?? Tell all. Love you much..Oh yes my thoughts on surviving--- This disease is so horrible but I have always thought and said it is what it is. BUT Iam learning the hard truth of progression.. This is not going to be easy for a woman that wants to do lunch and shop, go visit girlfriends and SHOP.. God alone knows when I'll be going home and I know I am ready in my soul. This stuff about not being able to get a good breathis for the birds. It gets down right scary at times. So my thoughts on surviving.... I want a better way to do it..  Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Hi everyone,The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us.Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people.Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke.I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.... Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head.  Life is far too short and fragile to live for anyone else's expectations. I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy.  Life is not over, it's different and maybe in some ways diminished but it's not over.One of my teenage nieces told me this weekend, "You're so cool, you get it."  I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool".  It doesn't get any better than that.  BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

MB... I really enjoyed reading your post!

I found the board the next day after my dx...March 6, 2006, so I had a good support network right away.

I went from dr to x-ray to the internet and there found information about and the fatality of PF!

I thought my coughing and mucus and sob was due to being out of shape and overweight.

I've been very lucky, I've remained fairly stable in these three years, so even tho' I've been on the board awhile I haven't had the progression most experience.

Some came to the board having been dx more years than I.

I did not want nor did I qualify for a transplant so I haven't been much help to those who do. I don't have the complex med issues that many here have or experience with the meds they take. I personally do not take prednisone. I learned from the board that it doesn't do any good anyway (some exceptions) and I don't want the side effects.

Rich and I still live in the same place, an upstairs apt. in a nice little complex for seniors. My life has stayed pretty much the same since dx.

First it was hard to go out because of the sob and then it was hard to go out when O2 was added. Having severe arthritis, the little cyl. is heavy for me and hurts my shoulder so I gradually went out less and less.

Going to the coast (close-about 1.5 hr) became harder and harder when a cpap was added and a concentrator and of course the usual cyl. for activities. And luggage. Our car looked like we were leaving for a month! lol. Lugging all that stuff became less appealing and we go less.

I have discovered that my life is actually not even much different...I've always been a stay-at-home and dealing with arthritis/fibromyalgia and a couple other chronic/severe med problems kept me home more and more anyway.

Life in general got harder and I'm sure much of that is my age...I'm 70 and Rich is 78. We don't have the get-go we used to have but life is good. If I'm tired, I rest. I no longer have the job I HAD to get up for. If we don't want to cook, we bring something in. I resumed handiwork after many years absence.

The board has given me a chance to sometimes be of help to others which is my passion. I am a counselor who no longer works..not retired...and when I feel the 'nudge' I try to help. God has been good to me to still use me. I can still bloom where I am planted.

I'm not afraid of death now....I was!

I take life one day at a time...

I am calmer now... there has been much to accept these past three years and the board is always here for me.

I love this board and all you folks here as well and I've gone on too long.....

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Thoughts on surviving

Hi everyone,

The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us.

Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people.

Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke.

I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.... Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.

I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over.

One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

Thank you, Beth, for this lovely summation of your life with PF.

I feel much as you do after nearly five years since my diagnosis. And I join you in continuing a life of happiness, pleasure and love - love from my family and friends and the love we all get from this wonderful group. It is extraordinary, to say the least. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Wednesday, May 20, 2009 9:49:52 AMSubject: Thoughts on surviving

Hi everyone,

The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us.

Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people.

Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke.

I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.

I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over.

One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

Peggy,

I want a better way for you to survive also. I despise this disease and what it does to people I care about. And I know that though you are one of the most joyful people I know, I realize that in many ways this disease has broken your heart. It has stolen so much from you. Believe me I'm not making light of that.

I pray all the time that your breathing is eased. You and all our other members who are further along than I am. Not being able to catch a decent (never mind deep) breath is horrible. I felt it before I was diagnosed, the day my sister called 911 because she thought I was dying. (In truth I was and wouldn't have lasted another week without intervention)

You are going to a place that we will all eventually go. I admire your strength, courage and the grace with which you accept everything that gets thrown at you. God willing you'll be around to be our friend for a long time to come.

I love you more than I can possibly tell you. I'd give you a huge hug if you were here.

MB

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, May 20, 2009 11:15:39 AMSubject: Re: Thoughts on survivingHi MB, So happy you are home and happy and WAY COOL.. I know you got enough lovin, hugs and kisses to last for a few months.

You know your story makes me cry... All the young ones here are so close to me heart. Well, I won't go there cause I can

not deal with anymore moisture in my head.. You would think by now I would be able to accept newbies with a hello and sorry you had need of us.... NO I am just a softie the older I get..LOL must be all the moisture softening my head.

Anyhooo Take it easy this week and do nothing but resttttt. How was your Dr. visit?? Tell all.

Love you much..

Oh yes my thoughts on surviving--- This disease is so horrible but I have always thought and said it is what it is. BUT I

am learning the hard truth of progression.. This is not going to be easy for a woman that wants to do lunch and shop, go visit girlfriends and SHOP..

God alone knows when I'll be going home and I know I am ready in my soul. This stuff about not being able to get a good breath

is for the birds. It gets down right scary at times. So my thoughts on surviving.... I want a better way to do it..

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Hi everyone,

The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us.

Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people.

Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke.

I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.

I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over.

One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

Peggy,

I want a better way for you to survive also. I despise this disease and what it does to people I care about. And I know that though you are one of the most joyful people I know, I realize that in many ways this disease has broken your heart. It has stolen so much from you. Believe me I'm not making light of that.

I pray all the time that your breathing is eased. You and all our other members who are further along than I am. Not being able to catch a decent (never mind deep) breath is horrible. I felt it before I was diagnosed, the day my sister called 911 because she thought I was dying. (In truth I was and wouldn't have lasted another week without intervention)

You are going to a place that we will all eventually go. I admire your strength, courage and the grace with which you accept everything that gets thrown at you. God willing you'll be around to be our friend for a long time to come.

I love you more than I can possibly tell you. I'd give you a huge hug if you were here.

MB

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, May 20, 2009 11:15:39 AMSubject: Re: Thoughts on survivingHi MB, So happy you are home and happy and WAY COOL.. I know you got enough lovin, hugs and kisses to last for a few months.

You know your story makes me cry... All the young ones here are so close to me heart. Well, I won't go there cause I can

not deal with anymore moisture in my head.. You would think by now I would be able to accept newbies with a hello and sorry you had need of us.... NO I am just a softie the older I get..LOL must be all the moisture softening my head.

Anyhooo Take it easy this week and do nothing but resttttt. How was your Dr. visit?? Tell all.

Love you much..

Oh yes my thoughts on surviving--- This disease is so horrible but I have always thought and said it is what it is. BUT I

am learning the hard truth of progression.. This is not going to be easy for a woman that wants to do lunch and shop, go visit girlfriends and SHOP..

God alone knows when I'll be going home and I know I am ready in my soul. This stuff about not being able to get a good breath

is for the birds. It gets down right scary at times. So my thoughts on surviving.... I want a better way to do it..

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Hi everyone,

The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us.

Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people.

Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke.

I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.

I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over.

One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

MB...when I was dx I thought my life would never be the same again...but it is, other than something changing in my lungs, by life is very much the same.

Where I used to be afraid of dying, I'm not anymore....everyone of us face dying but we do it together and those who go before us show it can be done and doesn't have to be painful.

You know, I think those of us who cope with this disease receive a special blessing from God. We learn deep inner truths that others do not have opportunity to learn.

And we all understand each other, although different. I'm glad I'm here.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Thoughts on surviving

Hi everyone,

The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us.

Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people.

Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke.

I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.

I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over.

One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

Dyane, I wish I were with you I would give you a warm big ol' hug. I am 5 years now and can well remember each drop in activities.. WOW this is NOT any fun BUT life is good God is Good so don't let this monster take your fun from you.  Be sure to spend as much quality time as you can with your children.. make memories of every day. It is so hard after a while to find your joy but it is still there buried under fear and apprehension about the future. The best advise I can give is live each day to it's fullest and love with everything you've got. There will always be some oldies but goodies here to help you.  Much love to you. Hang on. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Beth & Peggy,I am sitting here at work crying my eyes out because you all 'get' itand said so eloquently what we all feel. I went to the movies thisweekend with 2 of my daughters and we did lunch and had a wonderful timeand I tried so hard not to be angry because I got so tired walking justthe little bit that I did. It frightens me because I watched my motherdie of this damn disease and I want to spare my children and of course Ican't. My faith is strong but that doesn't mean it doesn't hurt to seefright on their faces. I will do everything I can and keep going aslong as I can but at the same time I've learned to ask for help and thathas been the hardest of all. I read all these posts and it helps somuch. Bruce is amazing with all his knowledge, keeps me laughing(and as she can tell ALL Americans think Aussies are just too cool) Waltand Sunny and everyone whos name is stuck in my head (if cancer patientsget chemo brain do we get predenisone brain or loss of o2 brain - weneed a cool term ) make me realize that we all have more courage thanpeople know. I think all us newbies thank you so much for being therefor us. Thank youDyane Phoenix IPF 02>>>>> Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with> pulmonary fibrosis. At that time in spite of my educational> background and the fact that I am a nurse, I was baffled by this> diagnosis. I had never seen it while I worked in a hospital setting> and I knew no one who had it. Three weeks later at home I went to> work on the internet. It took time but gradually things became> clearer. My biopsy results came in and I educated myself. In July of> 06 I found this group. Suddenly I was surrounded by people who 'got> it'. People who understood what it was like to be hopped up on 100mg> of prednisone at 3am, whose ribs hurt from coughing, who struggled to> understand what was happening to them and make their way through the> maze set before us.> Little by little I fought my way through to find a 'new normal'.> There are two reasons I was able to do this, the first was my family.> My son, my parents and my siblings loved and encouraged me. The> second reason was just as important as the first. This group. It's> difficult to overstate how key this group has been for me. The daily> encouragement, the sharing of knowledge, and ideas and joy and> sorrow, it's all wrapped up right here in this amazing group ofpeople.> Lots of things have changed for me in the last 3 years. I was> approved for SSDI and began collecting in November of 06, Medicare> finally kicked in in November of 08. I relocated from NY to NC in> December of 07 and began seeing doctors at Duke.> I've been able to 'work' part time. (loose definition of work LOL)> I've learned how to travel by car and make it work for me. I've gone> back to hobbies and activities that had fallen by the wayside when I> was working 60 or 70 hours a week. I spend time differently than I> used to. I choose to be with people that I love and do things that> make me happy. I don't have the time or the inclination to do things> just because other people expect that I should. I have some "friends"> and family members that do not understand my diagnosis, nor do they> care to understand.... Shrug....I don't worry about it anymore. I've> learned you can't shove understanding into anyones head. Life is far> too short and fragile to live for anyone else's expectations.>> I just felt like sharing this today. We've got many members who have> joined in the last couple of months. We can all feel the fear and> grief in some of the posts. We all get it, we've all been there and> understand. There is a wide variety of specific diagnosis. There is a> range of life expectancy. It's easy to get caught up in the specifics> and there is a place for all of that. But the one thing I would> suggest is not to let all that consume your life. Remember to make> time to be happy. Keep it as simple as you need to but do something> every single day that brings you some joy. Life is not over, it's> different and maybe in some ways diminished but it's not over.> One of my teenage nieces told me this weekend, "You're so cool, you> get it." I don't remember what we were talking about but I loved> that she could look at her nearly 50 year old aunt, overweight and> with oxygen tubing up her nose and see someone who's "Cool". It> doesn't get any better than that.>> Beth>> Moderator>> Fibrotic NSIP 06/06 Dermatomyositis 11/08>

[Guest guest]

Hey Air Fambly...I just had a Scilly 'Brainwave'..THIS thread is a 'Gem'..would it be possible to pull it aside & stick it in the 'Files' so that it can easily be re-read...there have been many other such exceptional threads but I never thought of suggesting this.

Maybe even folks could keep adding to the file as time goes on.....it'd end up being a bit of a 'Journal' for us. So much of the wisdom disappears 'cos we can't remeber the name of the thread to go back n' search. (well I can't...)

MB, Sher, Peggy...precious words ALL!

Love,

in Oz

>> MB...when I was dx I thought my life would never be the same again...but it is, other than something changing in my lungs, by life is very much the same.> Where I used to be afraid of dying, I'm not anymore....everyone of us face dying but we do it together and those who go before us show it can be done and doesn't have to be painful.> You know, I think those of us who cope with this disease receive a special blessing from God. We learn deep inner truths that others do not have opportunity to learn.> And we all understand each other, although different. I'm glad I'm here.> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Thoughts on surviving> > > > Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. > Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. > Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. > I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.> > I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. > One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08>

[Guest guest]

SGIO

Hello Ms. Scilly Brainwave

How are you doing? Oh no problem that you can't remember who wrote it.

We can't remember what we wrote.

Have the puppies figured out which hand is best for petting at the

moment?

You could teach many yourself about humor and living where the treatment

is a bit different, to put it mildly. Those here who struggle to get to

doctors and get information have no idea what it's like there. Yet, few

of us have an idea what a beautiful life intertwined with so much nature

and pleasures you have is like. You're another great example of one who

makes the best of it all. At the same time, you're able to cheer people

around the world up and we're blessed to have your zaniness. We each

deal with the disease and life differently so can learn from each other

and we learn a lot from you.

> >

> > MB...when I was dx I thought my life would never be the same

> again...but it is, other than something changing in my lungs, by life

is

> very much the same.

> > Where I used to be afraid of dying, I'm not anymore....everyone of

us

> face dying but we do it together and those who go before us show it

can

> be done and doesn't have to be painful.

> > You know, I think those of us who cope with this disease receive a

> special blessing from God. We learn deep inner truths that others do

not

> have opportunity to learn.

> > And we all understand each other, although different. I'm glad I'm

> here.

> > MamaSher; 70, IPF 3-06, OR.

> > Nasturtiums

> > Don't fret about tomorrow, God is already there!

> >

> > Thoughts on surviving

> >

> >

> >

> > Hi everyone,

> > The 29th of this month will mark 3 years since my diagnosis with

> pulmonary fibrosis. At that time in spite of my educational background

> and the fact that I am a nurse, I was baffled by this diagnosis. I had

> never seen it while I worked in a hospital setting and I knew no one

who

> had it. Three weeks later at home I went to work on the internet. It

> took time but gradually things became clearer. My biopsy results came

in

> and I educated myself. In July of 06 I found this group. Suddenly I

was

> surrounded by people who 'got it'. People who understood what it was

> like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt

from

> coughing, who struggled to understand what was happening to them and

> make their way through the maze set before us.

> > Little by little I fought my way through to find a 'new normal'.

There

> are two reasons I was able to do this, the first was my family. My

son,

> my parents and my siblings loved and encouraged me. The second reason

> was just as important as the first. This group. It's difficult to

> overstate how key this group has been for me. The daily encouragement,

> the sharing of knowledge, and ideas and joy and sorrow, it's all

wrapped

> up right here in this amazing group of people.

> > Lots of things have changed for me in the last 3 years. I was

approved

> for SSDI and began collecting in November of 06, Medicare finally

kicked

> in in November of 08. I relocated from NY to NC in December of 07 and

> began seeing doctors at Duke.

> > I've been able to 'work' part time. (loose definition of work LOL)

> I've learned how to travel by car and make it work for me. I've gone

> back to hobbies and activities that had fallen by the wayside when I

was

> working 60 or 70 hours a week. I spend time differently than I used

to.

> I choose to be with people that I love and do things that make me

happy.

> I don't have the time or the inclination to do things just because

other

> people expect that I should. I have some " friends " and family members

> that do not understand my diagnosis, nor do they care to understand..

...

> Shrug....I don't worry about it anymore. I've learned you can't shove

> understanding into anyones head. Life is far too short and fragile to

> live for anyone else's expectations.

> >

> > I just felt like sharing this today. We've got many members who have

> joined in the last couple of months. We can all feel the fear and

grief

> in some of the posts. We all get it, we've all been there and

> understand. There is a wide variety of specific diagnosis. There is a

> range of life expectancy. It's easy to get caught up in the specifics

> and there is a place for all of that. But the one thing I would

suggest

> is not to let all that consume your life. Remember to make time to be

> happy. Keep it as simple as you need to but do something every single

> day that brings you some joy. Life is not over, it's different and

maybe

> in some ways diminished but it's not over.

> > One of my teenage nieces told me this weekend, " You're so cool, you

> get it. " I don't remember what we were talking about but I loved that

> she could look at her nearly 50 year old aunt, overweight and with

> oxygen tubing up her nose and see someone who's " Cool " . It doesn't get

> any better than that.

> >

> > Beth

> >

> > Moderator

> >

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

>

[Guest guest]

beautifully said

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 9:49 AM

Hi everyone,

The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us.

Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people.

Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke.

I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.

I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over.

One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

beautifully said

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 9:49 AM

Hi everyone,

The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us.

Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people.

Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke.

I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.

I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over.

One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

Actually today I SHOULD be about to go into Flynnn Hospital on the Gold Coast (1 1/2 hours drive) to have my PFT's done BUT.......I forgot to pay off MURPHY ( you know that perverse Irish Chappy who derails the plans of those who forget to pay him his due ahead of time!) Consequently, there's a Cyclone blowing in off the Coast... the main road is closed with power lines & trees blocking my way!

So, here I am, reading the Posts & enjoying the Coffee that was banned for this morning!

As for the Sistas... weeeell...... I'm not goin' anywhere near THEM today... they got sick of daintily sitting on the verandah, chewing on their Pork Trotters, watching the flood rains & wind ....THEY decided to play 'chasies' in the Back Yard.. found a HUMONGUS PUDDLE & are now the most bedraggled, drippy, muddy, puddly li'l pair of mischiefs you ever did see!

It's quite cold today... autumn properly set in ... the Sistas have taken themselves off to their little Wooden Kennel & are snuggled up together ..I can't do anything about 'em until help arrives....my left hand has absolutely no picking up power & I can't let the bandages get filthy..they'll just have to keep each other warm.. I'll go check & see if they're shivering too badly. I could always go get a Hair Dryer & blow it in their direction I guess! That's if I could remember where I've GOT a Hairdryer... or even IF I've got a Hairdryer (I haven't used one of those since I was a teenager!)

HA!

SGIO

> > >> > > MB...when I was dx I thought my life would never be the same> > again...but it is, other than something changing in my lungs, by life> is> > very much the same.> > > Where I used to be afraid of dying, I'm not anymore....everyone of> us> > face dying but we do it together and those who go before us show it> can> > be done and doesn't have to be painful.> > > You know, I think those of us who cope with this disease receive a> > special blessing from God. We learn deep inner truths that others do> not> > have opportunity to learn.> > > And we all understand each other, although different. I'm glad I'm> > here.> > > MamaSher; 70, IPF 3-06, OR.> > > Nasturtiums> > > Don't fret about tomorrow, God is already there!> > >> > > Thoughts on surviving> > >> > >> > >> > > Hi everyone,> > > The 29th of this month will mark 3 years since my diagnosis with> > pulmonary fibrosis. At that time in spite of my educational background> > and the fact that I am a nurse, I was baffled by this diagnosis. I had> > never seen it while I worked in a hospital setting and I knew no one> who> > had it. Three weeks later at home I went to work on the internet. It> > took time but gradually things became clearer. My biopsy results came> in> > and I educated myself. In July of 06 I found this group. Suddenly I> was> > surrounded by people who 'got it'. People who understood what it was> > like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt> from> > coughing, who struggled to understand what was happening to them and> > make their way through the maze set before us.> > > Little by little I fought my way through to find a 'new normal'.> There> > are two reasons I was able to do this, the first was my family. My> son,> > my parents and my siblings loved and encouraged me. The second reason> > was just as important as the first. This group. It's difficult to> > overstate how key this group has been for me. The daily encouragement,> > the sharing of knowledge, and ideas and joy and sorrow, it's all> wrapped> > up right here in this amazing group of people.> > > Lots of things have changed for me in the last 3 years. I was> approved> > for SSDI and began collecting in November of 06, Medicare finally> kicked> > in in November of 08. I relocated from NY to NC in December of 07 and> > began seeing doctors at Duke.> > > I've been able to 'work' part time. (loose definition of work LOL)> > I've learned how to travel by car and make it work for me. I've gone> > back to hobbies and activities that had fallen by the wayside when I> was> > working 60 or 70 hours a week. I spend time differently than I used> to.> > I choose to be with people that I love and do things that make me> happy.> > I don't have the time or the inclination to do things just because> other> > people expect that I should. I have some "friends" and family members> > that do not understand my diagnosis, nor do they care to understand..> ..> > Shrug....I don't worry about it anymore. I've learned you can't shove> > understanding into anyones head. Life is far too short and fragile to> > live for anyone else's expectations.> > >> > > I just felt like sharing this today. We've got many members who have> > joined in the last couple of months. We can all feel the fear and> grief> > in some of the posts. We all get it, we've all been there and> > understand. There is a wide variety of specific diagnosis. There is a> > range of life expectancy. It's easy to get caught up in the specifics> > and there is a place for all of that. But the one thing I would> suggest> > is not to let all that consume your life. Remember to make time to be> > happy. Keep it as simple as you need to but do something every single> > day that brings you some joy. Life is not over, it's different and> maybe> > in some ways diminished but it's not over.> > > One of my teenage nieces told me this weekend, "You're so cool, you> > get it." I don't remember what we were talking about but I loved that> > she could look at her nearly 50 year old aunt, overweight and with> > oxygen tubing up her nose and see someone who's "Cool". It doesn't get> > any better than that.> > >> > > Beth> > >> > > Moderator> > >> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >> >>

[Guest guest]

Actually today I SHOULD be about to go into Flynnn Hospital on the Gold Coast (1 1/2 hours drive) to have my PFT's done BUT.......I forgot to pay off MURPHY ( you know that perverse Irish Chappy who derails the plans of those who forget to pay him his due ahead of time!) Consequently, there's a Cyclone blowing in off the Coast... the main road is closed with power lines & trees blocking my way!

So, here I am, reading the Posts & enjoying the Coffee that was banned for this morning!

As for the Sistas... weeeell...... I'm not goin' anywhere near THEM today... they got sick of daintily sitting on the verandah, chewing on their Pork Trotters, watching the flood rains & wind ....THEY decided to play 'chasies' in the Back Yard.. found a HUMONGUS PUDDLE & are now the most bedraggled, drippy, muddy, puddly li'l pair of mischiefs you ever did see!

It's quite cold today... autumn properly set in ... the Sistas have taken themselves off to their little Wooden Kennel & are snuggled up together ..I can't do anything about 'em until help arrives....my left hand has absolutely no picking up power & I can't let the bandages get filthy..they'll just have to keep each other warm.. I'll go check & see if they're shivering too badly. I could always go get a Hair Dryer & blow it in their direction I guess! That's if I could remember where I've GOT a Hairdryer... or even IF I've got a Hairdryer (I haven't used one of those since I was a teenager!)

HA!

SGIO

> > >> > > MB...when I was dx I thought my life would never be the same> > again...but it is, other than something changing in my lungs, by life> is> > very much the same.> > > Where I used to be afraid of dying, I'm not anymore....everyone of> us> > face dying but we do it together and those who go before us show it> can> > be done and doesn't have to be painful.> > > You know, I think those of us who cope with this disease receive a> > special blessing from God. We learn deep inner truths that others do> not> > have opportunity to learn.> > > And we all understand each other, although different. I'm glad I'm> > here.> > > MamaSher; 70, IPF 3-06, OR.> > > Nasturtiums> > > Don't fret about tomorrow, God is already there!> > >> > > Thoughts on surviving> > >> > >> > >> > > Hi everyone,> > > The 29th of this month will mark 3 years since my diagnosis with> > pulmonary fibrosis. At that time in spite of my educational background> > and the fact that I am a nurse, I was baffled by this diagnosis. I had> > never seen it while I worked in a hospital setting and I knew no one> who> > had it. Three weeks later at home I went to work on the internet. It> > took time but gradually things became clearer. My biopsy results came> in> > and I educated myself. In July of 06 I found this group. Suddenly I> was> > surrounded by people who 'got it'. People who understood what it was> > like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt> from> > coughing, who struggled to understand what was happening to them and> > make their way through the maze set before us.> > > Little by little I fought my way through to find a 'new normal'.> There> > are two reasons I was able to do this, the first was my family. My> son,> > my parents and my siblings loved and encouraged me. The second reason> > was just as important as the first. This group. It's difficult to> > overstate how key this group has been for me. The daily encouragement,> > the sharing of knowledge, and ideas and joy and sorrow, it's all> wrapped> > up right here in this amazing group of people.> > > Lots of things have changed for me in the last 3 years. I was> approved> > for SSDI and began collecting in November of 06, Medicare finally> kicked> > in in November of 08. I relocated from NY to NC in December of 07 and> > began seeing doctors at Duke.> > > I've been able to 'work' part time. (loose definition of work LOL)> > I've learned how to travel by car and make it work for me. I've gone> > back to hobbies and activities that had fallen by the wayside when I> was> > working 60 or 70 hours a week. I spend time differently than I used> to.> > I choose to be with people that I love and do things that make me> happy.> > I don't have the time or the inclination to do things just because> other> > people expect that I should. I have some "friends" and family members> > that do not understand my diagnosis, nor do they care to understand..> ..> > Shrug....I don't worry about it anymore. I've learned you can't shove> > understanding into anyones head. Life is far too short and fragile to> > live for anyone else's expectations.> > >> > > I just felt like sharing this today. We've got many members who have> > joined in the last couple of months. We can all feel the fear and> grief> > in some of the posts. We all get it, we've all been there and> > understand. There is a wide variety of specific diagnosis. There is a> > range of life expectancy. It's easy to get caught up in the specifics> > and there is a place for all of that. But the one thing I would> suggest> > is not to let all that consume your life. Remember to make time to be> > happy. Keep it as simple as you need to but do something every single> > day that brings you some joy. Life is not over, it's different and> maybe> > in some ways diminished but it's not over.> > > One of my teenage nieces told me this weekend, "You're so cool, you> > get it." I don't remember what we were talking about but I loved that> > she could look at her nearly 50 year old aunt, overweight and with> > oxygen tubing up her nose and see someone who's "Cool". It doesn't get> > any better than that.> > >> > > Beth> > >> > > Moderator> > >> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >> >>

[Guest guest]

You are our favorite scilly Aussie. Always here with kind words or a scilly to shape us up..LOL love ya Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Hey Air Fambly...I just had a Scilly 'Brainwave'..THIS thread is a 'Gem'..would it be possible to pull it aside & stick it in the 'Files' so that it can easily be re-read...there have been many other such exceptional threads but I never thought of suggesting this.Maybe even folks could keep adding to the file as time goes on.....it'd end up being a bit of a 'Journal' for us. So much of the wisdom disappears 'cos we can't remeber the name of the thread to go back n' search. (well I can't...) MB, Sher, Peggy...precious words ALL!Love, in Oz>> MB...when I was dx I thought my life would never be the same again...but it is, other than something changing in my lungs, by life is very much the same.> Where I used to be afraid of dying, I'm not anymore....everyone of us face dying but we do it together and those who go before us show it can be done and doesn't have to be painful.> You know, I think those of us who cope with this disease receive a special blessing from God. We learn deep inner truths that others do not have opportunity to learn.> And we all understand each other, although different. I'm glad I'm here.> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Thoughts on surviving> > > > Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. > Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. > Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. > I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.> > I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. > One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08>

[Guest guest]

You are our favorite scilly Aussie. Always here with kind words or a scilly to shape us up..LOL love ya Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Hey Air Fambly...I just had a Scilly 'Brainwave'..THIS thread is a 'Gem'..would it be possible to pull it aside & stick it in the 'Files' so that it can easily be re-read...there have been many other such exceptional threads but I never thought of suggesting this.Maybe even folks could keep adding to the file as time goes on.....it'd end up being a bit of a 'Journal' for us. So much of the wisdom disappears 'cos we can't remeber the name of the thread to go back n' search. (well I can't...) MB, Sher, Peggy...precious words ALL!Love, in Oz>> MB...when I was dx I thought my life would never be the same again...but it is, other than something changing in my lungs, by life is very much the same.> Where I used to be afraid of dying, I'm not anymore....everyone of us face dying but we do it together and those who go before us show it can be done and doesn't have to be painful.> You know, I think those of us who cope with this disease receive a special blessing from God. We learn deep inner truths that others do not have opportunity to learn.> And we all understand each other, although different. I'm glad I'm here.> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Thoughts on surviving> > > > Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. > Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. > Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. > I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.> > I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. > One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08>

[Guest guest]

...I had to start a new folder in my Inbox to keep what I think are 'Gems'...

You're right, we have Wisdom here that touches the heart and is never forgotten...but hard to recall too.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Thoughts on surviving> > > > Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. > Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. > Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. > I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.> > I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. > One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08>

[Guest guest]

...I had to start a new folder in my Inbox to keep what I think are 'Gems'...

You're right, we have Wisdom here that touches the heart and is never forgotten...but hard to recall too.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Thoughts on surviving> > > > Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. > Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. > Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. > I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations.> > I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. > One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08>

[Guest guest]

...here's a good one for you...My 17 y/o grdtr asked me if I had a blow-dryer...I dug around and came up with one.

My daughter, Lysa, (visiting) gasped in delight and disbelief...it was the one SHE used when she was in high school! Had her initials on it!

I've had it stuck away, never used it.

Of course Hannah had to take it home and it works just fine!

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Thoughts on surviving> > >> > >> > >> > > Hi everyone,> > > The 29th of this month will mark 3 years since my diagnosis with> > pulmonary fibrosis. At that time in spite of my educational background> > and the fact that I am a nurse, I was baffled by this diagnosis. I had> > never seen it while I worked in a hospital setting and I knew no one> who> > had it. Three weeks later at home I went to work on the internet. It> > took time but gradually things became clearer. My biopsy results came> in> > and I educated myself. In July of 06 I found this group. Suddenly I> was> > surrounded by people who 'got it'. People who understood what it was> > like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt> from> > coughing, who struggled to understand what was happening to them and> > make their way through the maze set before us.> > > Little by little I fought my way through to find a 'new normal'.> There> > are two reasons I was able to do this, the first was my family. My> son,> > my parents and my siblings loved and encouraged me. The second reason> > was just as important as the first. This group. It's difficult to> > overstate how key this group has been for me. The daily encouragement,> > the sharing of knowledge, and ideas and joy and sorrow, it's all> wrapped> > up right here in this amazing group of people.> > > Lots of things have changed for me in the last 3 years. I was> approved> > for SSDI and began collecting in November of 06, Medicare finally> kicked> > in in November of 08. I relocated from NY to NC in December of 07 and> > began seeing doctors at Duke.> > > I've been able to 'work' part time. (loose definition of work LOL)> > I've learned how to travel by car and make it work for me. I've gone> > back to hobbies and activities that had fallen by the wayside when I> was> > working 60 or 70 hours a week. I spend time differently than I used> to.> > I choose to be with people that I love and do things that make me> happy.> > I don't have the time or the inclination to do things just because> other> > people expect that I should. I have some "friends" and family members> > that do not understand my diagnosis, nor do they care to understand..> ..> > Shrug....I don't worry about it anymore. I've learned you can't shove> > understanding into anyones head. Life is far too short and fragile to> > live for anyone else's expectations.> > >> > > I just felt like sharing this today. We've got many members who have> > joined in the last couple of months. We can all feel the fear and> grief> > in some of the posts. We all get it, we've all been there and> > understand. There is a wide variety of specific diagnosis. There is a> > range of life expectancy. It's easy to get caught up in the specifics> > and there is a place for all of that. But the one thing I would> suggest> > is not to let all that consume your life. Remember to make time to be> > happy. Keep it as simple as you need to but do something every single> > day that brings you some joy. Life is not over, it's different and> maybe> > in some ways diminished but it's not over.> > > One of my teenage nieces told me this weekend, "You're so cool, you> > get it." I don't remember what we were talking about but I loved that> > she could look at her nearly 50 year old aunt, overweight and with> > oxygen tubing up her nose and see someone who's "Cool". It doesn't get> > any better than that.> > >> > > Beth> > >> > > Moderator> > >> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >> >>

[Guest guest]

...here's a good one for you...My 17 y/o grdtr asked me if I had a blow-dryer...I dug around and came up with one.

My daughter, Lysa, (visiting) gasped in delight and disbelief...it was the one SHE used when she was in high school! Had her initials on it!

I've had it stuck away, never used it.

Of course Hannah had to take it home and it works just fine!

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Thoughts on surviving> > >> > >> > >> > > Hi everyone,> > > The 29th of this month will mark 3 years since my diagnosis with> > pulmonary fibrosis. At that time in spite of my educational background> > and the fact that I am a nurse, I was baffled by this diagnosis. I had> > never seen it while I worked in a hospital setting and I knew no one> who> > had it. Three weeks later at home I went to work on the internet. It> > took time but gradually things became clearer. My biopsy results came> in> > and I educated myself. In July of 06 I found this group. Suddenly I> was> > surrounded by people who 'got it'. People who understood what it was> > like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt> from> > coughing, who struggled to understand what was happening to them and> > make their way through the maze set before us.> > > Little by little I fought my way through to find a 'new normal'.> There> > are two reasons I was able to do this, the first was my family. My> son,> > my parents and my siblings loved and encouraged me. The second reason> > was just as important as the first. This group. It's difficult to> > overstate how key this group has been for me. The daily encouragement,> > the sharing of knowledge, and ideas and joy and sorrow, it's all> wrapped> > up right here in this amazing group of people.> > > Lots of things have changed for me in the last 3 years. I was> approved> > for SSDI and began collecting in November of 06, Medicare finally> kicked> > in in November of 08. I relocated from NY to NC in December of 07 and> > began seeing doctors at Duke.> > > I've been able to 'work' part time. (loose definition of work LOL)> > I've learned how to travel by car and make it work for me. I've gone> > back to hobbies and activities that had fallen by the wayside when I> was> > working 60 or 70 hours a week. I spend time differently than I used> to.> > I choose to be with people that I love and do things that make me> happy.> > I don't have the time or the inclination to do things just because> other> > people expect that I should. I have some "friends" and family members> > that do not understand my diagnosis, nor do they care to understand..> ..> > Shrug....I don't worry about it anymore. I've learned you can't shove> > understanding into anyones head. Life is far too short and fragile to> > live for anyone else's expectations.> > >> > > I just felt like sharing this today. We've got many members who have> > joined in the last couple of months. We can all feel the fear and> grief> > in some of the posts. We all get it, we've all been there and> > understand. There is a wide variety of specific diagnosis. There is a> > range of life expectancy. It's easy to get caught up in the specifics> > and there is a place for all of that. But the one thing I would> suggest> > is not to let all that consume your life. Remember to make time to be> > happy. Keep it as simple as you need to but do something every single> > day that brings you some joy. Life is not over, it's different and> maybe> > in some ways diminished but it's not over.> > > One of my teenage nieces told me this weekend, "You're so cool, you> > get it." I don't remember what we were talking about but I loved that> > she could look at her nearly 50 year old aunt, overweight and with> > oxygen tubing up her nose and see someone who's "Cool". It doesn't get> > any better than that.> > >> > > Beth> > >> > > Moderator> > >> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >> >>

[Guest guest]

Sher/

Never had one or used one. A couple of times they've tried in beauty

salons, but I quickly said no. I just have this thing about protecting

my hair from such. I do admit to one permanent wave in my life but it

wasn't curly or anything. It was when I was young and hair styles

changed from short (flat tops and such) to long. Thanks to the Beatles.

My mother helped mine convert by giving me that permanent as cowlicks

were standing in the way. I've kept long hair ever since and will till

the day I die. Were I to lose my hair, let me assure you I'd get a wig.

> > > >

> > > > MB...when I was dx I thought my life would never be the same

> > > again...but it is, other than something changing in my lungs, by

life

> > is

> > > very much the same.

> > > > Where I used to be afraid of dying, I'm not

anymore....everyone of

> > us

> > > face dying but we do it together and those who go before us show

it

> > can

> > > be done and doesn't have to be painful.

> > > > You know, I think those of us who cope with this disease

receive a

> > > special blessing from God. We learn deep inner truths that

others do

> > not

> > > have opportunity to learn.

> > > > And we all understand each other, although different. I'm glad

I'm

> > > here.

> > > > MamaSher; 70, IPF 3-06, OR.

> > > > Nasturtiums

> > > > Don't fret about tomorrow, God is already there!

> > > >

> > > > Thoughts on surviving

> > > >

> > > >

> > > >

> > > > Hi everyone,

> > > > The 29th of this month will mark 3 years since my diagnosis

with

> > > pulmonary fibrosis. At that time in spite of my educational

background

> > > and the fact that I am a nurse, I was baffled by this diagnosis.

I had

> > > never seen it while I worked in a hospital setting and I knew no

one

> > who

> > > had it. Three weeks later at home I went to work on the

internet. It

> > > took time but gradually things became clearer. My biopsy results

came

> > in

> > > and I educated myself. In July of 06 I found this group.

Suddenly I

> > was

> > > surrounded by people who 'got it'. People who understood what it

was

> > > like to be hopped up on 100mg of prednisone at 3am, whose ribs

hurt

> > from

> > > coughing, who struggled to understand what was happening to them

and

> > > make their way through the maze set before us.

> > > > Little by little I fought my way through to find a 'new

normal'.

> > There

> > > are two reasons I was able to do this, the first was my family.

My

> > son,

> > > my parents and my siblings loved and encouraged me. The second

reason

> > > was just as important as the first. This group. It's difficult

to

> > > overstate how key this group has been for me. The daily

encouragement,

> > > the sharing of knowledge, and ideas and joy and sorrow, it's all

> > wrapped

> > > up right here in this amazing group of people.

> > > > Lots of things have changed for me in the last 3 years. I was

> > approved

> > > for SSDI and began collecting in November of 06, Medicare

finally

> > kicked

> > > in in November of 08. I relocated from NY to NC in December of

07 and

> > > began seeing doctors at Duke.

> > > > I've been able to 'work' part time. (loose definition of work

LOL)

> > > I've learned how to travel by car and make it work for me. I've

gone

> > > back to hobbies and activities that had fallen by the wayside

when I

> > was

> > > working 60 or 70 hours a week. I spend time differently than I

used

> > to.

> > > I choose to be with people that I love and do things that make

me

> > happy.

> > > I don't have the time or the inclination to do things just

because

> > other

> > > people expect that I should. I have some " friends " and family

members

> > > that do not understand my diagnosis, nor do they care to

understand..

> > ..

> > > Shrug....I don't worry about it anymore. I've learned you can't

shove

> > > understanding into anyones head. Life is far too short and

fragile to

> > > live for anyone else's expectations.

> > > >

> > > > I just felt like sharing this today. We've got many members

who have

> > > joined in the last couple of months. We can all feel the fear

and

> > grief

> > > in some of the posts. We all get it, we've all been there and

> > > understand. There is a wide variety of specific diagnosis. There

is a

> > > range of life expectancy. It's easy to get caught up in the

specifics

> > > and there is a place for all of that. But the one thing I would

> > suggest

> > > is not to let all that consume your life. Remember to make time

to be

> > > happy. Keep it as simple as you need to but do something every

single

> > > day that brings you some joy. Life is not over, it's different

and

> > maybe

> > > in some ways diminished but it's not over.

> > > > One of my teenage nieces told me this weekend, " You're so

cool, you

> > > get it. " I don't remember what we were talking about but I loved

that

> > > she could look at her nearly 50 year old aunt, overweight and

with

> > > oxygen tubing up her nose and see someone who's " Cool " . It

doesn't get

> > > any better than that.

> > > >

> > > > Beth

> > > >

> > > > Moderator

> > > >

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > > >

> > >

> >

>

[Guest guest]

Sher/

Never had one or used one. A couple of times they've tried in beauty

salons, but I quickly said no. I just have this thing about protecting

my hair from such. I do admit to one permanent wave in my life but it

wasn't curly or anything. It was when I was young and hair styles

changed from short (flat tops and such) to long. Thanks to the Beatles.

My mother helped mine convert by giving me that permanent as cowlicks

were standing in the way. I've kept long hair ever since and will till

the day I die. Were I to lose my hair, let me assure you I'd get a wig.

> > > >

> > > > MB...when I was dx I thought my life would never be the same

> > > again...but it is, other than something changing in my lungs, by

life

> > is

> > > very much the same.

> > > > Where I used to be afraid of dying, I'm not

anymore....everyone of

> > us

> > > face dying but we do it together and those who go before us show

it

> > can

> > > be done and doesn't have to be painful.

> > > > You know, I think those of us who cope with this disease

receive a

> > > special blessing from God. We learn deep inner truths that

others do

> > not

> > > have opportunity to learn.

> > > > And we all understand each other, although different. I'm glad

I'm

> > > here.

> > > > MamaSher; 70, IPF 3-06, OR.

> > > > Nasturtiums

> > > > Don't fret about tomorrow, God is already there!

> > > >

> > > > Thoughts on surviving

> > > >

> > > >

> > > >

> > > > Hi everyone,

> > > > The 29th of this month will mark 3 years since my diagnosis

with

> > > pulmonary fibrosis. At that time in spite of my educational

background

> > > and the fact that I am a nurse, I was baffled by this diagnosis.

I had

> > > never seen it while I worked in a hospital setting and I knew no

one

> > who

> > > had it. Three weeks later at home I went to work on the

internet. It

> > > took time but gradually things became clearer. My biopsy results

came

> > in

> > > and I educated myself. In July of 06 I found this group.

Suddenly I

> > was

> > > surrounded by people who 'got it'. People who understood what it

was

> > > like to be hopped up on 100mg of prednisone at 3am, whose ribs

hurt

> > from

> > > coughing, who struggled to understand what was happening to them

and

> > > make their way through the maze set before us.

> > > > Little by little I fought my way through to find a 'new

normal'.

> > There

> > > are two reasons I was able to do this, the first was my family.

My

> > son,

> > > my parents and my siblings loved and encouraged me. The second

reason

> > > was just as important as the first. This group. It's difficult

to

> > > overstate how key this group has been for me. The daily

encouragement,

> > > the sharing of knowledge, and ideas and joy and sorrow, it's all

> > wrapped

> > > up right here in this amazing group of people.

> > > > Lots of things have changed for me in the last 3 years. I was

> > approved

> > > for SSDI and began collecting in November of 06, Medicare

finally

> > kicked

> > > in in November of 08. I relocated from NY to NC in December of

07 and

> > > began seeing doctors at Duke.

> > > > I've been able to 'work' part time. (loose definition of work

LOL)

> > > I've learned how to travel by car and make it work for me. I've

gone

> > > back to hobbies and activities that had fallen by the wayside

when I

> > was

> > > working 60 or 70 hours a week. I spend time differently than I

used

> > to.

> > > I choose to be with people that I love and do things that make

me

> > happy.

> > > I don't have the time or the inclination to do things just

because

> > other

> > > people expect that I should. I have some " friends " and family

members

> > > that do not understand my diagnosis, nor do they care to

understand..

> > ..

> > > Shrug....I don't worry about it anymore. I've learned you can't

shove

> > > understanding into anyones head. Life is far too short and

fragile to

> > > live for anyone else's expectations.

> > > >

> > > > I just felt like sharing this today. We've got many members

who have

> > > joined in the last couple of months. We can all feel the fear

and

> > grief

> > > in some of the posts. We all get it, we've all been there and

> > > understand. There is a wide variety of specific diagnosis. There

is a

> > > range of life expectancy. It's easy to get caught up in the

specifics

> > > and there is a place for all of that. But the one thing I would

> > suggest

> > > is not to let all that consume your life. Remember to make time

to be

> > > happy. Keep it as simple as you need to but do something every

single

> > > day that brings you some joy. Life is not over, it's different

and

> > maybe

> > > in some ways diminished but it's not over.

> > > > One of my teenage nieces told me this weekend, " You're so

cool, you

> > > get it. " I don't remember what we were talking about but I loved

that

> > > she could look at her nearly 50 year old aunt, overweight and

with

> > > oxygen tubing up her nose and see someone who's " Cool " . It

doesn't get

> > > any better than that.

> > > >

> > > > Beth

> > > >

> > > > Moderator

> > > >

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > > >

> > >

> >

>

[Guest guest]

to all of the newbies

we have OD -- Oxygen Deprivation -- not sure who came up with the expression, but whenever we goof, etc, we blame it on OD

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 6:42 PM

Beth & Peggy,I am sitting here at work crying my eyes out because you all 'get' itand said so eloquently what we all feel. I went to the movies thisweekend with 2 of my daughters and we did lunch and had a wonderful timeand I tried so hard not to be angry because I got so tired walking justthe little bit that I did. It frightens me because I watched my motherdie of this damn disease and I want to spare my children and of course Ican't. My faith is strong but that doesn't mean it doesn't hurt to seefright on their faces. I will do everything I can and keep going aslong as I can but at the same time I've learned to ask for help and thathas been the hardest of all. I read all these posts and it helps somuch. Bruce is amazing with all his knowledge, keeps me laughing(and as she can tell ALL Americans think Aussies are just too cool) Waltand Sunny and everyone whos name is stuck in my

head (if cancer patientsget chemo brain do we get predenisone brain or loss of o2 brain - weneed a cool term ) make me realize that we all have more courage thanpeople know. I think all us newbies thank you so much for being therefor us. Thank youDyane Phoenix IPF 02>>>>> Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with> pulmonary fibrosis. At that time in spite of my educational> background and the fact that I am a nurse, I was baffled by this> diagnosis. I had never seen it while I worked in a hospital setting> and I knew no one who had it. Three weeks later at home I went to> work on the internet. It took time but gradually things became> clearer. My biopsy results came in and I educated myself. In July of> 06 I found this group. Suddenly I was surrounded by people who 'got> it'. People who understood

what it was like to be hopped up on 100mg> of prednisone at 3am, whose ribs hurt from coughing, who struggled to> understand what was happening to them and make their way through the> maze set before us.> Little by little I fought my way through to find a 'new normal'.> There are two reasons I was able to do this, the first was my family.> My son, my parents and my siblings loved and encouraged me. The> second reason was just as important as the first. This group. It's> difficult to overstate how key this group has been for me. The daily> encouragement, the sharing of knowledge, and ideas and joy and> sorrow, it's all wrapped up right here in this amazing group ofpeople.> Lots of things have changed for me in the last 3 years. I was> approved for SSDI and began collecting in November of 06, Medicare> finally kicked in in November of 08. I relocated from NY to

NC in> December of 07 and began seeing doctors at Duke.> I've been able to 'work' part time. (loose definition of work LOL)> I've learned how to travel by car and make it work for me. I've gone> back to hobbies and activities that had fallen by the wayside when I> was working 60 or 70 hours a week. I spend time differently than I> used to. I choose to be with people that I love and do things that> make me happy. I don't have the time or the inclination to do things> just because other people expect that I should. I have some "friends"> and family members that do not understand my diagnosis, nor do they> care to understand.. .. Shrug....I don't worry about it anymore. I've> learned you can't shove understanding into anyones head. Life is far> too short and fragile to live for anyone else's expectations.>> I just felt like sharing this today. We've got many

members who have> joined in the last couple of months. We can all feel the fear and> grief in some of the posts. We all get it, we've all been there and> understand. There is a wide variety of specific diagnosis. There is a> range of life expectancy. It's easy to get caught up in the specifics> and there is a place for all of that. But the one thing I would> suggest is not to let all that consume your life. Remember to make> time to be happy. Keep it as simple as you need to but do something> every single day that brings you some joy. Life is not over, it's> different and maybe in some ways diminished but it's not over.> One of my teenage nieces told me this weekend, "You're so cool, you> get it." I don't remember what we were talking about but I loved> that she could look at her nearly 50 year old aunt, overweight and> with oxygen tubing up her nose and see

someone who's "Cool". It> doesn't get any better than that.>> Beth>> Moderator>> Fibrotic NSIP 06/06 Dermatomyositis 11/08>