Re: The importance of hope

[Guest guest]

Peggy. I don't know why but I didn't get your post. I didn't mean to be negative. I was just talking about the doctor's making you feel like you are getting a death sentence. I don't like mall's at all but my grandson wanted to show me. I will print out your post and send you a personal one about the house. My farther died of emphysema too. So did my sister. I am hoping to get moved and do some of the things that I want to do before I leave this life. I am just getting negative because my house isn't selling and I can't get back to civilization. If you want to sail do it now. That is one of the things that I did. Bob, the friend who has the boat, has talked to my oxygen provider and they figured out a way that I can go out for a few days but I used to go for a few weeks. I am going out over the 4th. I will still go out as often as

I can. Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, IdahoSubject: The importance of hopeTo: Breathe-Support Date: Thursday, June 11, 2009, 6:16 AM

Peggy,

I so agree with what you wrote in this message about hope. It is downright cruel to take someones hope away. We all need reasons to get up in the morning and keep fighting. No one has the right to take that away from anyone.

We had a member of this board who has since passed away. Joyce Dalton fought long and fought hard to LIVE. She always said she wasn't ready to die because, "I'm just so curious about what will happen next". She was and still is my hero. She had pulmonary fibrosis, pulmonary hypertension and multiple auto immune diseases and yet she got up every single morning and fought the battle. She and her husband traveled to one of our get togethers by car when she was on oxygen at the rate of 8 liters continuously. She was one of the most determined women I've ever had the privilege of knowing.

There are people like her on our board now who just keep getting up every day and LIVING THEIR LIVES in spite of the crap that keeps getting thrown at us. We draw strength from each other. I'm so thankful for every person here.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: artquilterpeg <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 1:28:10 AMSubject: Re: introduction

Hi Beverly,I don't think you'd like walking in the Bellevue Mall unless you like expensive stores. It is pretty crowded with self absorbed people and walking there would be tough for exercise. I know of another place that is unique and fun and you can play chess for exercise. It has a huge chess board where you move the pieces physically from one spot to another (they are light weight). It's very diverse and has a great reasonable priced food court - maybe we can go there once you get this way.I sold two homes in down markets. If you want to e-mail me at my e-mail address I can send you my phone # and we can chat about my approach to it. Both sold within 45 days and the price was good on both too. Obviously you can't sell above market but there are things that help a home show nicer than others in the same price range. I'd love to chat about that next week if you want. I have nation wide long distance and can call you or I can e-mail

you my # and you can call me if you feel more comfortable with that. I think you should show your doctor that he is wrong. I don't know where doctors get off telling people things like that. At any point you could stabilize right? Maybe next week they'll come up with a cure. We all need hope and to take someone's hope away is a crime if you ask me. I think all human beings know when it is time and they are not willing to fight any longer. For my Dad who died of emphysema (self induced huge smoker - not me though) he was totally ready and had enough of it by the end. He enjoyed the last days and still had everyone laughing and lived to be 83 inspite of 40 years of smoking 4 packs a day. E-mail me at artquilterpeg@ yahoo.com if you want to talk. I've thought about starting a business to do this but will give you

my secrets

for free because I want to help others who are helping me with their support.Love,Peggy Ellis (wife, mother, quilter, tennis player, amateur comedienne and ILD 2007, 53 yo) I want to be defined by more than my disease and age! > > > > > > > > > > > > > > > > > > > > > From: artquilterpeg <artquilterpeg@ ...>> > > > > > > Subject: introduction> > > > > > > To: Breathe-Support@ yahoogroups. com> > > > > > > Date: Tuesday, June 9, 2009, 7:26 PM> > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am

doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time> > > > > > > between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> > > > > > >> >

>>

[Guest guest]

Peggy,

I think you're thinking of Beverly Joy. She is the one who is having difficulty getting her house sold.

Thanks anyway!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, June 12, 2009 4:31:29 PMSubject: Re: The importance of hope

Hi ,I hope I can be one of those people you speak so highly of. There are days when I think I won't be and will only be a whining pile of crap and days when I envision myself with the highest of 'examples of how to persevere' - I'll probably end up somewhere in the middle I imagine. Let me know if you'd like some suggestions on the house sale thing. Our realtor in Denver always said that 'even in slow markets or slow times of years there are houses selling' so that was always my inspiration. You just have to make yours more appealing than others and what might be appealing to you may not be the most appealing to the 'maximum' number of people so sometimes 'less is more' when it comes to selling the house. I survived the tests - results next week and I'll post some info about my experiences through that.Enjoy the beautiful long days,Peggy

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: The importance of hopeTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 6:16 AM

Peggy,

I so agree with what you wrote in this message about hope. It is downright cruel to take someones hope away. We all need reasons to get up in the morning and keep fighting. No one has the right to take that away from anyone.

We had a member of this board who has since passed away. Joyce Dalton fought long and fought hard to LIVE. She always said she wasn't ready to die because, "I'm just so curious about what will happen next". She was and still is my hero. She had pulmonary fibrosis, pulmonary hypertension and multiple auto immune diseases and yet she got up every single morning and fought the battle. She and her husband traveled to one of our get togethers by car when she was on oxygen at the rate of 8 liters continuously. She was one of the most determined women I've ever had the privilege of knowing.

There are people like her on our board now who just keep getting up every day and LIVING THEIR LIVES in spite of the crap that keeps getting thrown at us. We draw strength from each other. I'm so thankful for every person here.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: artquilterpeg <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 1:28:10 AMSubject: Re: introduction

Hi Beverly,I don't think you'd like walking in the Bellevue Mall unless you like expensive stores. It is pretty crowded with self absorbed people and walking there would be tough for exercise. I know of another place that is unique and fun and you can play chess for exercise. It has a huge chess board where you move the pieces physically from one spot to another (they are light weight). It's very diverse and has a great reasonable priced food court - maybe we can go there once you get this way.I sold two homes in down markets. If you want to e-mail me at my e-mail address I can send you my phone # and we can chat about my approach to it. Both sold within 45 days and the price was good on both too. Obviously you can't sell above market but there are things that help a home show nicer than others in the same price range. I'd love to chat about that next week if you want. I have nation wide long distance and can call you or I can e-mail

you my # and you can call me if you feel more comfortable with that. I think you should show your doctor that he is wrong. I don't know where doctors get off telling people things like that. At any point you could stabilize right? Maybe next week they'll come up with a cure. We all need hope and to take someone's hope away is a crime if you ask me. I think all human beings know when it is time and they are not willing to fight any longer. For my Dad who died of emphysema (self induced huge smoker - not me though) he was totally ready and had enough of it by the end. He enjoyed the last days and still had everyone laughing and lived to be 83 inspite of 40 years of smoking 4 packs a day. E-mail me at artquilterpeg@ yahoo.com if you want to talk. I've thought about starting a business to do this but will give you my secrets for free because I want to help others who are helping me with their

support.Love,Peggy Ellis (wife, mother, quilter, tennis player, amateur comedienne and ILD 2007, 53 yo) I want to be defined by more than my disease and age! > > > > > > > > > > > > > > > > > > > > > From: artquilterpeg <artquilterpeg@ ...>> > > > > > > Subject: introduction> > > > > > > To: Breathe-Support@ yahoogroups. com> > > > > > > Date: Tuesday, June 9, 2009, 7:26 PM> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

> > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding

of how important it is for me to take my time> > > > > > > between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> > > > > > >> > >>

[Guest guest]

Yes, sorry. I thought it was the person I had actually responded to. My bad.

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: The importance of hopeTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 6:16 AM

Peggy,

I so agree with what you wrote in this message about hope. It is downright cruel to take someones hope away. We all need reasons to get up in the morning and keep fighting. No one has the right to take that away from anyone.

We had a member of this board who has since passed away. Joyce Dalton fought long and fought hard to LIVE. She always said she wasn't ready to die because, "I'm just so curious about what will happen next". She was and still is my hero. She had pulmonary fibrosis, pulmonary hypertension and multiple auto immune diseases and yet she got up every single morning and fought the battle. She and her husband traveled to one of our get togethers by car when she was on oxygen at the rate of 8 liters continuously. She was one of the most determined women I've ever had the privilege of knowing.

There are people like her on our board now who just keep getting up every day and LIVING THEIR LIVES in spite of the crap that keeps getting thrown at us. We draw strength from each other. I'm so thankful for every person here.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: artquilterpeg <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 1:28:10 AMSubject: Re: introduction

Hi Beverly,I don't think you'd like walking in the Bellevue Mall unless you like expensive stores. It is pretty crowded with self absorbed people and walking there would be tough for exercise. I know of another place that is unique and fun and you can play chess for exercise. It has a huge chess board where you move the pieces physically from one spot to another (they are light weight). It's very diverse and has a great reasonable priced food court - maybe we can go there once you get this way.I sold two homes in down markets. If you want to e-mail me at my e-mail address I can send you my phone # and we can chat about my approach to it. Both sold within 45 days and the price was good on both too. Obviously you can't sell above market but there are things that help a home show nicer than others in the same price range. I'd love to chat about that next week if you want. I have nation wide long distance and can call you or I can e-mail

you my # and you can call me if you feel more comfortable with that. I think you should show your doctor that he is wrong. I don't know where doctors get off telling people things like that. At any point you could stabilize right? Maybe next week they'll come up with a cure. We all need hope and to take someone's hope away is a crime if you ask me. I think all human beings know when it is time and they are not willing to fight any longer. For my Dad who died of emphysema (self induced huge smoker - not me though) he was totally ready and had enough of it by the end. He enjoyed the last days and still had everyone laughing and lived to be 83 inspite of 40 years of smoking 4 packs a day. E-mail me at artquilterpeg@ yahoo.com if you want to talk. I've thought about starting a business to do this but will give you my secrets for free because I want to help others who are helping me with their

support.Love,Peggy Ellis (wife, mother, quilter, tennis player, amateur comedienne and ILD 2007, 53 yo) I want to be defined by more than my disease and age! > > > > > > > > > > > > > > > > > > > > > From: artquilterpeg <artquilterpeg@ ...>> > > > > > > Subject: introduction> > > > > > > To: Breathe-Support@ yahoogroups. com> > > > > > > Date: Tuesday, June 9, 2009, 7:26 PM> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

> > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding

of how important it is for me to take my time> > > > > > > between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> > > > > > >> > >>