Hello

[Guest guest]

Celeste,

Welcome to the group, you will find a great group of caring and encouraging

people here, I know I sure have. Please don't ever be afraid to ask a

question. Someone here is bound to have experienced your question and may have

some

good advice.

Take care and have a wonderful day.

Laurette

4/23/04 open RNY

309/290/255/150

St. Charity Hospital

Cleveland, Ohio

[Guest guest]

HI!

There is a adult support group (RSS Adults I think the name is).

Anyway, I'm sure one of the adults will be getting back to you. Well,

there actually was a discussion about RSS females being born without a

uterus so I think you have company. AND, my daughter is heading for

her 3rd set of ear tubes at 8am EST tomorrow...WELCOME! Please hang

out - if I may ask, how tall are you, I'm guessing no GH because of

your age?

, mom to 5 and Emerence 2, RSS/SGA 20 lb 11oz, 31 " and

getting ear tubes tomorrow am...3rd time better be a charm!

> Hi, I just happened to stumble across this group> my name is Leah, I

> am 22 and I was born with silver russel syndrome. I've had a few

> questions that no one seems able to answer. I have a few things that

> are odd about me and i'm not sure if they're related to the SRS

> because there is so little knowledge of the disorder. I was born

> without a uterus, ribs over my heart and without one of my kidneys.

> the other thing is i used to have chronic ear infections and i have

> bell's palsey. If anyone knows anything about any of these things

> please write back and well...even if you don't : ) have a good day

>

> *leah*

[Guest guest]

Wow not fun, I had 8 sets of ear tubes (one every year from age 2-10). I've

never heard anything about missing body parts being a part of SSR so that is

really great to get some new information. I mean even UC doesn't really

have a clue, it took them 10 years to even diagnose me. I am 4'8 by the way, I

was supposed to be about 3'8 according to my pediatrican, but thankfully my mom

got me on a somewhat normal sleep schedule so my growth hormone kicked in (i was

about five at that time). I'm really praying the the third time is a charm for

your daughter, i remember crying before my last surgery, just I hated going

under more than anything. anyways thank you for getting back to me = ) we should

keep in touch.

*leah*

wrote:

HI!

There is a adult support group (RSS Adults I think the name is).

Anyway, I'm sure one of the adults will be getting back to you. Well,

there actually was a discussion about RSS females being born without a

uterus so I think you have company. AND, my daughter is heading for

her 3rd set of ear tubes at 8am EST tomorrow...WELCOME! Please hang

out - if I may ask, how tall are you, I'm guessing no GH because of

your age?

, mom to 5 and Emerence 2, RSS/SGA 20 lb 11oz, 31 " and

getting ear tubes tomorrow am...3rd time better be a charm!

> Hi, I just happened to stumble across this group> my name is Leah, I

> am 22 and I was born with silver russel syndrome. I've had a few

> questions that no one seems able to answer. I have a few things that

> are odd about me and i'm not sure if they're related to the SRS

> because there is so little knowledge of the disorder. I was born

> without a uterus, ribs over my heart and without one of my kidneys.

> the other thing is i used to have chronic ear infections and i have

> bell's palsey. If anyone knows anything about any of these things

> please write back and well...even if you don't : ) have a good day

>

> *leah*

---------------------------------

[Guest guest]

Hi Leah,

So glad to hear from you. It is so nice to be able to hear from adults

with RSS. Anyway, I don't know about the other stuff, but I do know

that chronic ear infections are a characteristic of -Silver. My

son will be 3 in a couple of weeks and he has had more than his share

of them. He just had tubes placed in his ears in January and they seem

to be helping him a lot. I think the chronic infections is due to the

smallness of the sinus passages or something like that????

I would love to hear more about your life experiences with RSS and

all! ) Please feel free to stay around. There are other adults

with RSS that post here too!

Take care,

Jodi R. (One of many Jodi's on here)

's mommy

> Hi, I just happened to stumble across this group> my name is Leah, I

> am 22 and I was born with silver russel syndrome. I've had a few

> questions that no one seems able to answer. I have a few things that

> are odd about me and i'm not sure if they're related to the SRS

> because there is so little knowledge of the disorder. I was born

> without a uterus, ribs over my heart and without one of my kidneys.

> the other thing is i used to have chronic ear infections and i have

> bell's palsey. If anyone knows anything about any of these things

> please write back and well...even if you don't : ) have a good day

>

> *leah*

[Guest guest]

Hi Leah, and welcome to the list. My name is Leah also!

I'm sure you'll get a few of your questions by the RSS adults, they

check in here regularly and are a great bunch of people. I'm proud to

say that I had the pleasure of meeting a few of the ladies at the RSS

MAGIC convention last summer in Chicago.

Can't wait to get to know you better!

Leah, mom to 10 and Olivia, 5 years, 22lbs, 35 " , RSS, OI

> Hi, I just happened to stumble across this group> my name is Leah, I

> am 22 and I was born with silver russel syndrome. I've had a few

> questions that no one seems able to answer. I have a few things that

> are odd about me and i'm not sure if they're related to the SRS

> because there is so little knowledge of the disorder. I was born

> without a uterus, ribs over my heart and without one of my kidneys.

> the other thing is i used to have chronic ear infections and i have

> bell's palsey. If anyone knows anything about any of these things

> please write back and well...even if you don't : ) have a good day

>

> *leah*

[Guest guest]

I'm out here in California = ). I think the only reason I didn't get a feeding

tube was because my mom basically kept me away from all the doctors and just

breast fed me until I was five (I was allergic to absolutly everything) I

honestly believe that's the only reason I'm alive today. I heard of a little

girl recently who has SRS, her mom works at the hospital with my mom. I'm going

to meet her, she's been put on a feeding tube and has been having a really hard

time lately. I should find my growth/height chart. i remember that when i was in

7th grade i weighed about 70 lbs. anyways sorry to ramble lol. hope all is well.

*leah*

jamie xxxx wrote:

So where are you from? It's nice to here from someone who has experience with

RSS, but I have not heard of any of the problems you are having to deal with. My

daughter is 5 she weighs 30 lbs. she has a hard time keeping in nutrients, it

seems that when she eats it just runs right through her. There are times when

she has to go to the bathroom even before she done with dinner. Any nice to here

from you.

/mom of Tori 5 RSS and 2 nonrss NY

hello

Hi, I just happened to stumble across this group> my name is Leah, I

am 22 and I was born with silver russel syndrome. I've had a few

questions that no one seems able to answer. I have a few things that

are odd about me and i'm not sure if they're related to the SRS

because there is so little knowledge of the disorder. I was born

without a uterus, ribs over my heart and without one of my kidneys.

the other thing is i used to have chronic ear infections and i have

bell's palsey. If anyone knows anything about any of these things

please write back and well...even if you don't : ) have a good day

*leah*

[Guest guest]

Hello,

yeah i woke up this morning and checked my e-mail and had 13 new ones LOL.

People seem really awesome on here and I've already had my questions sort of

answered, which is amazing = ) Can i recommend something that will sound sort of

odd for your daughter Olivia, you might want to consider breastfeeding, it's the

only thing that helped me put on weight. The first 10 years are the hardest,

beyond that it's cake. Good luck. Convention?

*leah*

Leah wrote:

Hi Leah, and welcome to the list. My name is Leah also!

I'm sure you'll get a few of your questions by the RSS adults, they

check in here regularly and are a great bunch of people. I'm proud to

say that I had the pleasure of meeting a few of the ladies at the RSS

MAGIC convention last summer in Chicago.

Can't wait to get to know you better!

Leah, mom to 10 and Olivia, 5 years, 22lbs, 35 " , RSS, OI

> Hi, I just happened to stumble across this group> my name is Leah, I

> am 22 and I was born with silver russel syndrome. I've had a few

> questions that no one seems able to answer. I have a few things that

> are odd about me and i'm not sure if they're related to the SRS

> because there is so little knowledge of the disorder. I was born

> without a uterus, ribs over my heart and without one of my kidneys.

> the other thing is i used to have chronic ear infections and i have

> bell's palsey. If anyone knows anything about any of these things

> please write back and well...even if you don't : ) have a good day

>

> *leah*

---------------------------------

[Guest guest]

Leah

Welcome aboard. Funny you should say that. My name

is and my daughter who is now 5 was

diagnosed at 3 3/4, however, when we saw Dr. H when

she was 5 she said no but that she is growth failure

and has some of the characteristics. I breastfed

exclusively until she was 9 months old and then

put her on whole milk during the day and breastfed at

night. And yes a few times in the middle of the night.

She was not one of those babies that you feed before

bed and when they wake up. Anyway at 11 months is

when I totally stopped breastfeeding her. I wish I

had known then what I know now. However, it was at 9

months old when " fell off the charts. " She was

holding on to the 5th/3rd percentile until that time.

Of course, the only other person who agrees with me

about that is my husband.

You mention that you were born without a uterus. If

you haven't been to the adult RSS group, I know there

was talk recently going around about the female RSS

adults and gynocological problems. I had mentioned

that has labia adhesions (although it is

common). I hate to say that right now it appears that

the adhesion is getting slightly bigger.

also had open heart surgery at age 3 3/4. She

was born with a large whole in her heart between upper

and lower chamber of the heart.

I believe someone asked but I don't remember seeing if

you answered, where are you from? I live in northern

NJ.

Again, welcome and thank you for sharing. As a parent

it is wonderful to hear from someone who has

experience.

B

5 and Kelli 2 3/4

--- leah strishak wrote:

> Hello,

> yeah i woke up this morning and checked my e-mail

> and had 13 new ones LOL. People seem really awesome

> on here and I've already had my questions sort of

> answered, which is amazing = ) Can i recommend

> something that will sound sort of odd for your

> daughter Olivia, you might want to consider

> breastfeeding, it's the only thing that helped me

> put on weight. The first 10 years are the hardest,

> beyond that it's cake. Good luck. Convention?

>

> *leah*

>

> Leah wrote:

> Hi Leah, and welcome to the list. My name is Leah

> also!

>

> I'm sure you'll get a few of your questions by the

> RSS adults, they

> check in here regularly and are a great bunch of

> people. I'm proud to

> say that I had the pleasure of meeting a few of the

> ladies at the RSS

> MAGIC convention last summer in Chicago.

> Can't wait to get to know you better!

>

> Leah, mom to 10 and Olivia, 5 years, 22lbs,

> 35 " , RSS, OI

>

>

>

> > Hi, I just happened to stumble across this group>

> my name is Leah, I

> > am 22 and I was born with silver russel syndrome.

> I've had a few

> > questions that no one seems able to answer. I have

> a few things that

> > are odd about me and i'm not sure if they're

> related to the SRS

> > because there is so little knowledge of the

> disorder. I was born

> > without a uterus, ribs over my heart and without

> one of my kidneys.

> > the other thing is i used to have chronic ear

> infections and i have

> > bell's palsey. If anyone knows anything about any

> of these things

> > please write back and well...even if you don't : )

> have a good day

> >

> > *leah*

>

>

>

>

> ---------------------------------

>

[Guest guest]

hi leah,

welcome to this great group!! i dont have the answere's to your

questions but i am the mom of a 4yr old boy with rss so it is always

nice to chat with an adult!! i know there are some other adults on

this list and there is also a list just for you adults and i am sure

someone will give you the site address. i hope hear more about you!!

jodie c

> Hi, I just happened to stumble across this group> my name is Leah, I

> am 22 and I was born with silver russel syndrome. I've had a few

> questions that no one seems able to answer. I have a few things that

> are odd about me and i'm not sure if they're related to the SRS

> because there is so little knowledge of the disorder. I was born

> without a uterus, ribs over my heart and without one of my kidneys.

> the other thing is i used to have chronic ear infections and i have

> bell's palsey. If anyone knows anything about any of these things

> please write back and well...even if you don't : ) have a good day

>

> *leah*

[Guest guest]

Wow nursed for 5 years, I did tori for 15 months would have went longer but she

like chocolate milk and table food. I think breastfedding helped tori out to she

hardly ever gets sick and knock on wood has not had ear trouble.

hello

Hi, I just happened to stumble across this group> my name is Leah, I

am 22 and I was born with silver russel syndrome. I've had a few

questions that no one seems able to answer. I have a few things that

are odd about me and i'm not sure if they're related to the SRS

because there is so little knowledge of the disorder. I was born

without a uterus, ribs over my heart and without one of my kidneys.

the other thing is i used to have chronic ear infections and i have

bell's palsey. If anyone knows anything about any of these things

please write back and well...even if you don't : ) have a good day

*leah*

[Guest guest]

Donna arent massages great ? glad you had a good time, you needed one ! ColleenDonna Jordon wrote: Hi everyoneSorry I haven't read a message since a week ago, just wanted to wish all well with their journey where ever they are in it. I had a wonderful time in Reno, I have never had a message and my friend paid for us both one. WOW WOW WOW How nice it was. I was a little nervous I had a young stud guy who gave me mine, and at first it felt weird when he called my name, but once the massage started it was wonderful. We didn't pick who gave the massages we just got who was ready for us at our time. My friend got a lady, she wanted to trade. I made it to support group finally Monday after missing 3 of them and NO Kerre, NO Barbara, NO

Gordy, NO , I missed you all. I am going to be going again each month, hope you all will start coming again, I miss you guys. Pam Marsh I know you're back to work and schedules are hard, I would love to come see you. I have NO weekends open, I'm off to Shingletown this weekend, and something going on until July. I can come on a Tuesday or Thursday evening but it would be late I don't get off work until 6:30 pm. Or better yet since I don't have things booked in July if you have a Sat or Sun free I'd like to come take you to lunch and meet you. Here's my email dsjordon@... if you would like this email me and give a day and time that works for you. Once it's on the books I keep my dates, if not things get so busy and changed. Every take care. Donna J.Donna JordonDSJordon@... Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice.

Colleen

[Guest guest]

Hi - My psych eval was only 30 minutes and I liked mines lol

She asked all the questions and one thing my Dr told me NOT to do was

give away answers so I told only what she asked and I SMILED alot! So

good luck be yourself :-)

Carol

>

> Hi , I just got back from appt with dietician, ot went great and she

> referred me for phsyc eval, does anyone know how long that takes,..?

> also im still pending sleep apnea test results, i guess this takes

> awhile? im also wondering, if i dont have it and my cholestrol is

> fine...i do have high blood pressure, bmi 45 and being treated for

> depression; i have urinary incontinence; asthma, plantar faciitis

and

> knee pain, chronic fatigue. would or have u heard of anyone being

> approved on that basis. My pysciatrist wrote a recommentation for

it

> as well. Any idea and how long does it take?

>

>

>

[Guest guest]

Yes, Lyrica is for nerve pain, I've been on it about a year now and it helped me so much! I hope it helps other's as much as it's helped me! Marla

Thanks for checking in. Is Lyrica for nerve pain?

Take care,

Tracie

NS co-owner/moderator

To: Neurosarcoidosis

Sent: Saturday, December 6, 2008 5:08:39 PMSubject: Hello

Hello all. sorry for not writing in a little while, but after a couple of bad days I've had some good. My dr. increased my Lyrica to 400mgs. and it seems to be working well. Gotta go but I shall write soon.

God Bless

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Hi Tracie, I guess I should check in, I'm starting to get use to the cold and know what I can do and when, it's hard at the start of winter to know. I am going on week 5 and so far so good, I get my next infusion on Friday, I have been reading posts more then responding, as my Mom is here visiting and I hate to be on the computer too much, she goes home on Sat. Hope you are all having a good Sunday! I hope you are doing well Tracie, keeping you all in my thoughts and prayers,

Marla

Yes, Lyrica is for nerve pain, I've been on it about a year now and it helped me so much! I hope it helps other's as much as it's helped me! Marla

Thanks for checking in. Is Lyrica for nerve pain?

Take care,

Tracie

NS co-owner/moderator

To: Neurosarcoidosis

Sent: Saturday, December 6, 2008 5:08:39 PMSubject: Hello

Hello all. sorry for not writing in a little while, but after a couple of bad days I've had some good. My dr. increased my Lyrica to 400mgs. and it seems to be working well. Gotta go but I shall write soon.

God Bless

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

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

To: Breathe-Support Sent: 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.

[Guest guest]

thanks Beth... It is so hard right now.To: Breathe-Support Sent: 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.

[Guest guest]

-

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.

To: Breathe-Support Sent: 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.

[Guest guest]

thanks Barb. I read every message and am trying to look up that I am not along in this. To: Breathe-Support Sent: 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.

[Guest guest]

-

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.

To: Breathe-Support Sent: 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.

[Guest guest]

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 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.

[Guest guest]

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.> >

[Guest guest]

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---

Subject: Re: helloTo: Breathe-Support Date: 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.

[Guest guest]

Thanks Dyane! I need to hear that right now.To: Breathe-Support Sent: Thu, November 19, 2009 11:36:17 AMSubject: Re: hello

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.> >

[Guest guest]

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---

Subject: Re: helloTo: Breathe-Support Date: 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.> >

[Guest guest]

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.To: Breathe-Support Sent: 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.