Hello

November 19, 2009

how do you find out about all day seminars?To: Breathe-Support Sent: Thu, November 19, 2009 11:48:40 AMSubject: Re: Re: hello

Beth was diagnosed at a center in New York

Mt Sinai is a center that i went to when the the coalition for pulmonary fibrosis had an all day seminar

for all of the newbies

signature frequently includes diagnosis with date, where you live and anything else you want to share

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: DyaneB <dyane.billings@ ball-mcgraw. com>Subject: Re: helloTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 19, 2009, 11:36 AM

Hi ,My name is Dyane and I was new to the group back in February even though I was diagnosed (somewhat) in 2002. I know you are scared because the first thing anybody does is search the internet and you see 2-5 years. Stop right there. Many on the board have had this longer, some much longer. Get to a center of Excellence if you can. Many local pulmo-dudes do not understand PF. I just came back from National Jewish in Denver and I found out a lot of of new things even after almost 8 years. One of the most important things is how everyone here "gets" it. We understand unlike a lot of people who can't 'see' your disease. Beth was a nurse, Bruce is an encyclopedia of information, Mama Sher, Peggy, , Geeta, Joyce and Pink Joyce, Stefani, Barbara, Cees and all the others whose names have run out the hole in my head, will love

you,

listen to your woes, and give the best advice they can. WelcomeDyane Phoenix ipf 02>> Hi my name is and I just found out that I have uip. I have been reading all your messages and they are words of encouragement. Any insight in how to move from shock to acceptance would help right now. I am so scared inside.> >

November 19, 2009

Hi ,

My name is nne. I was diagnsosed in July with ILD Interstitial Lung

Disease, but only after I was evaluated at NY Presbyterian did I have a more

specific diagnosis- I have fibrotic NSIP caused by autoimmune diseases called

Sjogrens, polimyelitis and Raynaud's syndrome. I was tested for this autoimmune

before but blood work always came back negative. Lucky for me (?) I was in the

middle of a major flare up at NY Pres. so their bloodwork came up positive. Like

Beth said it's a little comforting to know what you have. I still work, an

office job, lots of sitting. I need O2 for exertion and sleeping.

I just started Pulmonary Rehab at Hackensack University Hospital in New Jersey

where I live. Are you going into the city for Rehab? I am completing my third

week and I have found it so helpful. The respiratory technicians are wonderful

and they have lectures dealing with so many topics, from the types of diseases

there are, nutrition, breathing techniques, exercising etc. It took about 2

weeks for me to get the call to start- they have to check insurance and get

records from the referring doctor.

Welcome to the group- I would be lost without the expertise of the members here.

In fact when I was talking to the pulmonary dr. at NY Pres, she asked me if I

had a medical background because of how knowledgable I was about lung disease!

Basically I learned everything from this site. So learn all you can- it helps

you feel in control.- nne

>

> Hi everyone,

> My name is , like I said, and am 57 years old. I have a fantastic husband

whose name is Phil. We have been married 34 years and have 2 children. Our

daughter and son have also blessed us with 3 beautiful grandchildren, Kayla,

iel( my daughter's) and Addison ( my son's little girl).

> I live in New York, a couple of hours from the city in a small town.

> I am very shocked about this disease because except for the breathing problem

I don't feel ill. Just mentally ill at this stage. I have been going for tests

because I had broken out with a bad rash two years ago. Finally after a bad case

of Bronchitiis I changed dr's and the road started to travel in the direction I

am on now. I am on oxygen 24/7 because my oxygen level goes down when I move

around. Sitting still it is good (high 90's). I have been to alot of dr's and

they have always told me my lungs are clear. My oxygen level was fine too so no

one ever requested a xray. I am suppose to start pulmonary rehab soon but

haven't heard from them yet. How long should it take to set up an appointment?

> I hope to find solace here as I have read that many of you have.

>

> ________________________________

>

> To: Breathe-Support

> Sent: Thu, November 19, 2009 10:54:53 AM

> Subject: Re: hello

>

> -

> Tell us a little about yourself, if you don't mind. Like what state (or

country) you live in, how old you are, do you have family, etc. How did you

discover you had a lung disease? Are you on oxygen, or taking any treatment?

>

> B

>

> Barbara McD

> PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

> Beautiful Western NC

>

> Attitude is everything.

>

> ________________________________

> From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 19, 2009 10:19:58 AM

> Subject: Re: hello

>

> thanks Barb. I read every message and am trying to look up that I am not

along in this.

>

> ________________________________

> From: Barbara McD <bamny (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 19, 2009 9:33:08 AM

> Subject: Re: hello

>

> -

> Just stick with this group. We will help you get there. Lots of

knowledge, lots of personal experience, and a whole lot of caring. Welcome to

the group, although I am sorry you need to be here. Life is far from over -

it's just changing in an unexpected way.

>

> B

>

> Barbara McD

> PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

> Beautiful Western NC

>

> Attitude is everything.

>

> ________________________________

> From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 19, 2009 9:05:18 AM

> Subject: Re: hello

>

> thanks Beth... It is so hard right now.

>

> ________________________________

> From: Beth <mbmurtha (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 19, 2009 8:34:58 AM

> Subject: Re: hello

>

> Good morning and welcome. I'm sorry that you have been diagnosed with

this disease. Everyone's experience in learning to cope with the diagnosis is a

little different. By the time I was diagnosed I was so ill and my daily

functioning was already so compromised that in some very real way the actual

diagnosis was a relief. I mean that in the sense that I was finally able to put

a name on it. The process is different for everyone.

>

> Moving towards understanding and acceptance is a process. It won't happen all

at once and you will have good days and bad days. What I would encourage you to

do is be really really patient with yourself. Get as much rest as you need, eat

well and allow those close to you to share your journey. Don't try to cope all

by yourself.

>

> Stick close, we all understand!

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> ________________________________

> From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 19, 2009 8:01:25 AM

> Subject: hello

>

> Hi my name is and I just found out that I have uip. I have been reading

all your messages and they are words of encouragement. Any insight in how to

move from shock to acceptance would help right now. I am so scared inside.

>

November 19, 2009

thanks nne. One of my best friends name Anne.Keep in touch.To: Breathe-Support Sent: Thu, November 19, 2009 12:37:24 PMSubject: Re: hello

Hi ,

My name is nne. I was diagnsosed in July with ILD Interstitial Lung Disease, but only after I was evaluated at NY Presbyterian did I have a more specific diagnosis- I have fibrotic NSIP caused by autoimmune diseases called Sjogrens, polimyelitis and Raynaud's syndrome. I was tested for this autoimmune before but blood work always came back negative. Lucky for me (?) I was in the middle of a major flare up at NY Pres. so their bloodwork came up positive. Like Beth said it's a little comforting to know what you have. I still work, an office job, lots of sitting. I need O2 for exertion and sleeping.

I just started Pulmonary Rehab at Hackensack University Hospital in New Jersey where I live.. Are you going into the city for Rehab? I am completing my third week and I have found it so helpful. The respiratory technicians are wonderful and they have lectures dealing with so many topics, from the types of diseases there are, nutrition, breathing techniques, exercising etc. It took about 2 weeks for me to get the call to start- they have to check insurance and get records from the referring doctor.

Welcome to the group- I would be lost without the expertise of the members here. In fact when I was talking to the pulmonary dr. at NY Pres, she asked me if I had a medical background because of how knowledgable I was about lung disease! Basically I learned everything from this site. So learn all you can- it helps you feel in control.- nne

>

> Hi everyone,

> My name is , like I said, and am 57 years old. I have a fantastic husband whose name is Phil. We have been married 34 years and have 2 children. Our daughter and son have also blessed us with 3 beautiful grandchildren, Kayla, iel( my daughter's) and Addison ( my son's little girl).

> I live in New York, a couple of hours from the city in a small town.

> I am very shocked about this disease because except for the breathing problem I don't feel ill. Just mentally ill at this stage.. I have been going for tests because I had broken out with a bad rash two years ago. Finally after a bad case of Bronchitiis I changed dr's and the road started to travel in the direction I am on now. I am on oxygen 24/7 because my oxygen level goes down when I move around. Sitting still it is good (high 90's). I have been to alot of dr's and they have always told me my lungs are clear. My oxygen level was fine too so no one ever requested a xray. I am suppose to start pulmonary rehab soon but haven't heard from them yet. How long should it take to set up an appointment?

> I hope to find solace here as I have read that many of you have.

>

> ____________ _________ _________ __

>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 19, 2009 10:54:53 AM

> Subject: Re: hello

>

> -

> Tell us a little about yourself, if you don't mind. Like what state (or country) you live in, how old you are, do you have family, etc. How did you discover you had a lung disease? Are you on oxygen, or taking any treatment?

>

> B

>

> Barbara McD

> PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

> Beautiful Western NC

>

> Attitude is everything.

>

> ____________ _________ _________ __

> From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 19, 2009 10:19:58 AM

> Subject: Re: hello

>

> thanks Barb. I read every message and am trying to look up that I am not along in this.

>

> ____________ _________ _________ __

> From: Barbara McD <bamny (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 19, 2009 9:33:08 AM

> Subject: Re: hello

>

> -

> Just stick with this group. We will help you get there. Lots of knowledge, lots of personal experience, and a whole lot of caring. Welcome to the group, although I am sorry you need to be here. Life is far from over - it's just changing in an unexpected way.

>

> B

>

> Barbara McD

> PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

> Beautiful Western NC

>

> Attitude is everything.

>

> ____________ _________ _________ __

> From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 19, 2009 9:05:18 AM

> Subject: Re: hello

>

> thanks Beth... It is so hard right now.

>

> ____________ _________ _________ __

> From: Beth <mbmurtha (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 19, 2009 8:34:58 AM

> Subject: Re: hello

>

> Good morning and welcome. I'm sorry that you have been diagnosed with this disease. Everyone's experience in learning to cope with the diagnosis is a little different. By the time I was diagnosed I was so ill and my daily functioning was already so compromised that in some very real way the actual diagnosis was a relief. I mean that in the sense that I was finally able to put a name on it. The process is different for everyone.

>

> Moving towards understanding and acceptance is a process. It won't happen all at once and you will have good days and bad days. What I would encourage you to do is be really really patient with yourself. Get as much rest as you need, eat well and allow those close to you to share your journey. Don't try to cope all by yourself.

>

> Stick close, we all understand!

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> ____________ _________ _________ __

> From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 19, 2009 8:01:25 AM

> Subject: hello

>

> Hi my name is and I just found out that I have uip. I have been reading all your messages and they are words of encouragement. Any insight in how to move from shock to acceptance would help right now. I am so scared inside.

>

November 19, 2009

Cornell is excellent in New York.

> >

> > Hi my name is and I just found out that I have uip. I have been

reading all your messages and they are words of encouragement. Any

insight in how to move from shock to acceptance would help right now. I

am so scared inside.

> >

>

November 19, 2009

-

Welcome to the group. We have all learned there is no expiration date. The

good doctors get it. The ones that are still learning, well, we have to teach

them. Quality of life is everything. Hence the rehab. You will learn a lot of

things that will help you with this disease. You will learn how to maintain an

exercise program in the event you opt for a lung transplant somewhere in the

future. It helps to take good care of yourself. You will learn how to pace

yourself for different activities. You will learn how to do the things you love

with slight modification. I think this group is proactive and that with good

care and habits we can all write a new chapter in the study of pulmonary

fibrosis.

We are all writing our congressmen to get the HR1079 moving, but it may be too

late this year. We are hoping for research monies and a national database for

study. There are several studies in the works and I think there is a reference

in the files section of this website.

You will learn how to be your own best advocate for health care and health care

equipment. There are many facets to this disease that may or may not be in your

future. Whatever you encounter, you can come to this group and probably get

some sage (yes, many of us have outlived the prognosis) advice.

Welcome, we care,

Stefani 61 year old Utahn

ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

> >

> > Hi my name is and I just found out that I have uip. I have been

reading all your messages and they are words of encouragement. Any insight in

how to move from shock to acceptance would help right now. I am so scared

inside.

> >

>

November 19, 2009

Stefani,

thank you for your advice. I have learned alot just today about trying to be strong through this.

My daughter's name is Stefanie also. Nice spelling.

To: Breathe-Support Sent: Thu, November 19, 2009 1:34:38 PMSubject: Re: hello

-Welcome to the group. We have all learned there is no expiration date. The good doctors get it. The ones that are still learning, well, we have to teach them. Quality of life is everything. Hence the rehab. You will learn a lot of things that will help you with this disease. You will learn how to maintain an exercise program in the event you opt for a lung transplant somewhere in the future. It helps to take good care of yourself. You will learn how to pace yourself for different activities. You will learn how to do the things you love with slight modification. I think this group is proactive and that with good care and habits we can all write a new chapter in the study of pulmonary fibrosis. We are all writing our congressmen to get the HR1079 moving, but it may be too late this year. We are hoping for research monies and a national database for study. There are several studies in the works and I think there is a reference in

the files section of this website.You will learn how to be your own best advocate for health care and health care equipment. There are many facets to this disease that may or may not be in your future. Whatever you encounter, you can come to this group and probably get some sage (yes, many of us have outlived the prognosis) advice. Welcome, we care,Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009> >> > Hi my name is and I just found out that I have uip. I have been reading all your messages and they are words of encouragement. Any insight in how to move from shock to acceptance would help right now. I am so scared inside.> > > >>

November 19, 2009

mary

my doctor at Penn gave me a prescription for pulmonary rehab

and i called the local hospital my self to set it up

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: helloTo: Breathe-Support Date: Thursday, November 19, 2009, 11:50 AM

thanks Joyce. I had been wondering why I hadn't heard from anyone yet. My dr. is suppose to set it up. I plan on calling on Monday if I don't hear by then.

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 11:42:10 AMSubject: Re: hello

2 things that we usually recommend are getting an oximeter -- the thing you put on your finger to measure the oxygen SAT -- and going to a teaching hospital that has a department that specializes in Interstitial lung diseases

living near New York City you have a choice of programs

glad you already contacted pulmonary rehab

wait sometimes depends on when the next class begins

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

Donate Life Listed 1/09 Inactive 4/09

www..transplantfund . org

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>Subject: Re: helloTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 19, 2009, 11:18 AM

Hi everyone,My name is , like I said, and am 57 years old. I have a fantastic husband whose name is Phil. We have been married 34 years and have 2 children. Our daughter and son have also blessed us with 3 beautiful grandchildren, Kayla, iel( my daughter's) and Addison ( my son's little girl).I live in New York, a couple of hours from the city in a small town. I am very shocked about this disease because except for the breathing problem I don't feel ill. Just mentally ill at this stage. I have been going for tests because I had broken out with a bad rash two years ago. Finally after a bad case of Bronchitiis I changed dr's and the road started to travel in the direction I am on now. I am on oxygen 24/7 because my oxygen level goes down when I move around. Sitting still it is good (high 90's). I have been to alot of dr's and they have always told me my lungs are

clear. My oxygen level was fine too so no one ever requested a xray.. I am suppose to start pulmonary rehab soon but haven't heard from them yet. How long should it take to set up an appointment?I hope to find solace here as I have read that many of you have.

From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 10:54:53 AMSubject: Re: hello

-

Tell us a little about yourself, if you don't mind. Like what state (or country) you live in, how old you are, do you have family, etc. How did you discover you had a lung disease? Are you on oxygen, or taking any treatment?

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 10:19:58 AMSubject: Re: hello

thanks Barb. I read every message and am trying to look up that I am not along in this..

From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 9:33:08 AMSubject: Re: hello

-

Just stick with this group. We will help you get there. Lots of knowledge, lots of personal experience, and a whole lot of caring. Welcome to the group, although I am sorry you need to be here. Life is far from over - it's just changing in an unexpected way.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 9:05:18 AMSubject: Re: hello

thanks Beth... It is so hard right now.

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 8:34:58 AMSubject: Re: hello

Good morning and welcome. I'm sorry that you have been diagnosed with this disease. Everyone's experience in learning to cope with the diagnosis is a little different. By the time I was diagnosed I was so ill and my daily functioning was already so compromised that in some very real way the actual diagnosis was a relief. I mean that in the sense that I was finally able to put a name on it. The process is different for everyone.

Moving towards understanding and acceptance is a process. It won't happen all at once and you will have good days and bad days. What I would encourage you to do is be really really patient with yourself. Get as much rest as you need, eat well and allow those close to you to share your journey. Don't try to cope all by yourself.

Stick close, we all understand!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 8:01:25 AMSubject: hello

Hi my name is and I just found out that I have uip. I have been reading all your messages and they are words of encouragement. Any insight in how to move from shock to acceptance would help right now. I am so scared inside.

November 19, 2009

> >

> > Hi everyone,

> > My name is , like I said, and am 57 years old. I have a fantastic

husband whose name is Phil. We have been married 34 years and have 2 children.

Our daughter and son have also blessed us with 3 beautiful grandchildren, Kayla,

iel( my daughter's) and Addison ( my son's little girl).

> > I live in New York, a couple of hours from the city in a small town.

> > I am very shocked about this disease because except for the breathing

problem I don't feel ill. Just mentally ill at this stage. I have been going

for tests because I had broken out with a bad rash two years ago. Finally after

a bad case of Bronchitiis I changed dr's and the road started to travel in the

direction I am on now. I am on oxygen 24/7 because my oxygen level goes down

when I move around. Sitting still it is good (high 90's). I have been to alot

of dr's and they have always told me my lungs are clear. My oxygen level was

fine too so no one ever requested a xray. I am suppose to start pulmonary rehab

soon but haven't heard from them yet. How long should it take to set up an

appointment?

> > I hope to find solace here as I have read that many of you have.

> >

> > ________________________________

> > From: Barbara McD <bamny@>

> > To: Breathe-Support

> > Sent: Thu, November 19, 2009 10:54:53 AM

> > Subject: Re: hello

> >

> > -

> > Tell us a little about yourself, if you don't mind. Like what state (or

country) you live in, how old you are, do you have family, etc. How did you

discover you had a lung disease? Are you on oxygen, or taking any treatment?

> >

> > B

> >

> > Barbara McD

> > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

> > Beautiful Western NC

> >

> > Attitude is everything.

> >

> > ________________________________

> > From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 19, 2009 10:19:58 AM

> > Subject: Re: hello

> >

> > thanks Barb. I read every message and am trying to look up that I am not

along in this.

> >

> > ________________________________

> > From: Barbara McD <bamny (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 19, 2009 9:33:08 AM

> > Subject: Re: hello

> >

> > -

> > Just stick with this group. We will help you get there. Lots of

knowledge, lots of personal experience, and a whole lot of caring. Welcome to

the group, although I am sorry you need to be here. Life is far from over -

it's just changing in an unexpected way.

> >

> > B

> >

> > Barbara McD

> > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

> > Beautiful Western NC

> >

> > Attitude is everything.

> >

> > ________________________________

> > From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 19, 2009 9:05:18 AM

> > Subject: Re: hello

> >

> > thanks Beth... It is so hard right now.

> >

> > ________________________________

> > From: Beth <mbmurtha (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 19, 2009 8:34:58 AM

> > Subject: Re: hello

> >

> > Good morning and welcome. I'm sorry that you have been diagnosed with

this disease. Everyone's experience in learning to cope with the diagnosis is a

little different. By the time I was diagnosed I was so ill and my daily

functioning was already so compromised that in some very real way the actual

diagnosis was a relief. I mean that in the sense that I was finally able to put

a name on it. The process is different for everyone.

> >

> > Moving towards understanding and acceptance is a process. It won't happen

all at once and you will have good days and bad days. What I would encourage you

to do is be really really patient with yourself. Get as much rest as you need,

eat well and allow those close to you to share your journey. Don't try to cope

all by yourself.

> >

> > Stick close, we all understand!

> >

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> > Hi

My name is Eileen and I also have UIP. I know how scared you feel that was

exactly how I felt when I found out in May 07. I did not have to go on oxygen

till Dec 08 but I am on it 24/7 now. The people on this site are amazing and

will help you get through it all. Don't be too scared to ask anything because

someone else on the site has gone thru the same thing.

I am orginally from NY myself. I was born and raised in the city but lived for

awhile up by Oneonta. What town are you in?

Eileen 58 IPF/UIP May 07

Boca Raton FL

> >

> > ________________________________

> > From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 19, 2009 8:01:25 AM

> > Subject: hello

> >

> > Hi my name is and I just found out that I have uip. I have been

reading all your messages and they are words of encouragement. Any insight in

how to move from shock to acceptance would help right now. I am so scared

inside.

> >

>

November 19, 2009

Hi Eileen,I live in a little hamlet called Leeds. No stop light just a small one street main street. Thanks for your advice. To: Breathe-Support Sent: Thu, November 19, 2009 5:57:54 PMSubject: Re: hello

> >

> > Hi everyone,

> > My name is , like I said, and am 57 years old. I have a fantastic husband whose name is Phil. We have been married 34 years and have 2 children. Our daughter and son have also blessed us with 3 beautiful grandchildren, Kayla, iel( my daughter's) and Addison ( my son's little girl).

> > I live in New York, a couple of hours from the city in a small town.

> > I am very shocked about this disease because except for the breathing problem I don't feel ill. Just mentally ill at this stage.. I have been going for tests because I had broken out with a bad rash two years ago. Finally after a bad case of Bronchitiis I changed dr's and the road started to travel in the direction I am on now. I am on oxygen 24/7 because my oxygen level goes down when I move around. Sitting still it is good (high 90's). I have been to alot of dr's and they have always told me my lungs are clear. My oxygen level was fine too so no one ever requested a xray. I am suppose to start pulmonary rehab soon but haven't heard from them yet. How long should it take to set up an appointment?

> > I hope to find solace here as I have read that many of you have.

> >

> > ____________ _________ _________ __

> > From: Barbara McD <bamny@>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 19, 2009 10:54:53 AM

> > Subject: Re: hello

> >

> > -

> > Tell us a little about yourself, if you don't mind. Like what state (or country) you live in, how old you are, do you have family, etc. How did you discover you had a lung disease? Are you on oxygen, or taking any treatment?

> >

> > B

> >

> > Barbara McD

> > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

> > Beautiful Western NC

> >

> > Attitude is everything.

> >

> > ____________ _________ _________ __

> > From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 19, 2009 10:19:58 AM

> > Subject: Re: hello

> >

> > thanks Barb. I read every message and am trying to look up that I am not along in this.

> >

> > ____________ _________ _________ __

> > From: Barbara McD <bamny (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 19, 2009 9:33:08 AM

> > Subject: Re: hello

> >

> > -

> > Just stick with this group. We will help you get there. Lots of knowledge, lots of personal experience, and a whole lot of caring. Welcome to the group, although I am sorry you need to be here. Life is far from over - it's just changing in an unexpected way.

> >

> > B

> >

> > Barbara McD

> > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

> > Beautiful Western NC

> >

> > Attitude is everything.

> >

> > ____________ _________ _________ __

> > From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 19, 2009 9:05:18 AM

> > Subject: Re: hello

> >

> > thanks Beth... It is so hard right now.

> >

> > ____________ _________ _________ __

> > From: Beth <mbmurtha (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 19, 2009 8:34:58 AM

> > Subject: Re: hello

> >

> > Good morning and welcome. I'm sorry that you have been diagnosed with this disease. Everyone's experience in learning to cope with the diagnosis is a little different. By the time I was diagnosed I was so ill and my daily functioning was already so compromised that in some very real way the actual diagnosis was a relief. I mean that in the sense that I was finally able to put a name on it. The process is different for everyone.

> >

> > Moving towards understanding and acceptance is a process. It won't happen all at once and you will have good days and bad days. What I would encourage you to do is be really really patient with yourself. Get as much rest as you need, eat well and allow those close to you to share your journey. Don't try to cope all by yourself.

> >

> > Stick close, we all understand!

> >

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> > Hi

My name is Eileen and I also have UIP. I know how scared you feel that was exactly how I felt when I found out in May 07. I did not have to go on oxygen till Dec 08 but I am on it 24/7 now. The people on this site are amazing and will help you get through it all. Don't be too scared to ask anything because someone else on the site has gone thru the same thing.

I am orginally from NY myself. I was born and raised in the city but lived for awhile up by Oneonta. What town are you in?

Eileen 58 IPF/UIP May 07

Boca Raton FL

> >

> > ____________ _________ _________ __

> > From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 19, 2009 8:01:25 AM

> > Subject: hello

> >

> > Hi my name is and I just found out that I have uip. I have been reading all your messages and they are words of encouragement. Any insight in how to move from shock to acceptance would help right now. I am so scared inside.

> >

>

November 19, 2009

- I lived in NY most of my life. Born and raised in NYC (Queens), worked/lived in Manhattan many years, moved to Rockland County for the last few years I was up there. Now I am a North Carolinian - and proud of it! There are other NYers on here, too.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

To: Breathe-Support Sent: Thu, November 19, 2009 6:11:38 PMSubject: Re: Re: hello

Hi Eileen,I live in a little hamlet called Leeds. No stop light just a small one street main street. Thanks for your advice.

From: Eileen <nivlag1 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 5:57:54 PMSubject: Re: hello

> >> > Hi everyone,> > My name is , like I said, and am 57 years old. I have a fantastic husband whose name is Phil. We have been married 34 years and have 2 children. Our daughter and son have also blessed us with 3 beautiful grandchildren, Kayla, iel( my daughter's) and Addison ( my son's little girl).> > I live in New York, a couple of hours from the city in a small town. > > I am very shocked about this disease because except for the breathing problem I don't feel ill. Just mentally ill at this stage.. I have been going for tests because I had broken out with a bad rash two years ago. Finally after a bad case of Bronchitiis I changed dr's and the road started to travel in the direction I am on now. I am on oxygen 24/7 because my oxygen level goes down when I move around. Sitting still it is good (high 90's). I have been to alot

of dr's and they have always told me my lungs are clear. My oxygen level was fine too so no one ever requested a xray. I am suppose to start pulmonary rehab soon but haven't heard from them yet. How long should it take to set up an appointment?> > I hope to find solace here as I have read that many of you have. > > > > > > > > > > > > ____________ _________ _________ __> > From: Barbara McD <bamny@>> > To: Breathe-Support@ yahoogroups. com> > Sent: Thu, November 19, 2009 10:54:53 AM> > Subject: Re: hello> > > > > > -> > Tell us a little about yourself, if you don't mind. Like what state (or country) you live in, how old you are, do you have

family, etc. How did you discover you had a lung disease? Are you on oxygen, or taking any treatment?> > > > B> > > > Barbara McD> > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever> > Beautiful Western NC> > > > > > > > Attitude is everything.> > > > > > > > > > > > ____________ _________ _________ __> > From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Thu, November 19, 2009 10:19:58 AM> > Subject: Re: hello> > > > > > thanks Barb. I read every message and am trying to look up that I am not along in this. > > > > > > > > > > ____________ _________ _________ __> > From: Barbara McD

<bamny (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Thu, November 19, 2009 9:33:08 AM> > Subject: Re: hello> > > > > > -> > Just stick with this group. We will help you get there. Lots of knowledge, lots of personal experience, and a whole lot of caring. Welcome to the group, although I am sorry you need to be here. Life is far from over - it's just changing in an unexpected way. > > > > B> > > > Barbara McD> > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever> > Beautiful Western NC> > > > > > > > Attitude is everything.> > > > > > > > > > > > ____________ _________ _________ __> > From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>> > To:

Breathe-Support@ yahoogroups. com> > Sent: Thu, November 19, 2009 9:05:18 AM> > Subject: Re: hello> > > > > > thanks Beth... It is so hard right now.> > > > > > > > > > ____________ _________ _________ __> > From: Beth <mbmurtha (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Thu, November 19, 2009 8:34:58 AM> > Subject: Re: hello> > > > > > Good morning and welcome. I'm sorry that you have been diagnosed with this disease. Everyone's experience in learning to cope with the diagnosis is a little different. By the time I was diagnosed I was so ill and my daily functioning was already so compromised that in some very real way the actual diagnosis was a relief. I mean that in the sense that I was finally able to put a

name on it. The process is different for everyone.> > > > Moving towards understanding and acceptance is a process. It won't happen all at once and you will have good days and bad days. What I would encourage you to do is be really really patient with yourself. Get as much rest as you need, eat well and allow those close to you to share your journey. Don't try to cope all by yourself.> > > > Stick close, we all understand!> > > > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > Hi My name is Eileen and I also have UIP. I know how scared you feel that was exactly how I felt when I found out in May 07. I did not have to go on oxygen till Dec 08 but I am on it 24/7 now. The people on this site are amazing and will help you get through it all. Don't be too scared to ask anything because someone else on the site

has gone thru the same thing.I am orginally from NY myself. I was born and raised in the city but lived for awhile up by Oneonta. What town are you in?Eileen 58 IPF/UIP May 07Boca Raton FL> > > > > > > > ____________ _________ _________ __> > From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Thu, November 19, 2009 8:01:25 AM> > Subject: hello> > > > > > Hi my name is and I just found out that I have uip. I have been reading all your messages and they are words of encouragement. Any insight in how to move from shock to acceptance would help right now. I am so scared inside.> > > >>

November 19, 2009

I know where Leeds is! One of the girls in my dorm when I was in college was from Leeds. I went to Mt St College in Newburgh. The connections you can find to people when you start talking always amaze me.

I lived in Rockland County most of my life until 2007 when I moved to NC. (Except for 8 years when I was married when my ex-husband my son and I lived on Cape Cod in Massachusetts. I live in Durham NC now about 10 minutes from Duke where I get my care.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, November 19, 2009 6:21:27 PMSubject: Re: Re: hello

- I lived in NY most of my life. Born and raised in NYC (Queens), worked/lived in Manhattan many years, moved to Rockland County for the last few years I was up there. Now I am a North Carolinian - and proud of it! There are other NYers on here, too.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 6:11:38 PMSubject: Re: Re: hello