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Hi Tina,

you don't have a Yahoo ID yet, so you have to register with Yahoo

first before you can use the list features.

Tammy, you are registered already, so if you go to our homepage

http://groups.yahoo.com/group/cfparents/

and click on the " Photos " button to the LEFT (don't know at which

bottom you see the word " photo " ) then you come to the photo section

and can upload the photo from Brittany there. I look forward to

seeing it.

That's great that so many have added their photos recently, it's

always nice when you can put a face to a name.

Peace

Torsten

> I feel stupid, I joined this list and don't remember my

password....did I

> have to have a password to sign up??? Help!

>

>

> Tina Mom to Christian 11 yowcf and 19 yowocf

>

>

>

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Hi Tina,

you don't have a Yahoo ID yet, so you have to register with Yahoo

first before you can use the list features.

Tammy, you are registered already, so if you go to our homepage

http://groups.yahoo.com/group/cfparents/

and click on the " Photos " button to the LEFT (don't know at which

bottom you see the word " photo " ) then you come to the photo section

and can upload the photo from Brittany there. I look forward to

seeing it.

That's great that so many have added their photos recently, it's

always nice when you can put a face to a name.

Peace

Torsten

> I feel stupid, I joined this list and don't remember my

password....did I

> have to have a password to sign up??? Help!

>

>

> Tina Mom to Christian 11 yowcf and 19 yowocf

>

>

>

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Hi Tina,

you don't have a Yahoo ID yet, so you have to register with Yahoo

first before you can use the list features.

Tammy, you are registered already, so if you go to our homepage

http://groups.yahoo.com/group/cfparents/

and click on the " Photos " button to the LEFT (don't know at which

bottom you see the word " photo " ) then you come to the photo section

and can upload the photo from Brittany there. I look forward to

seeing it.

That's great that so many have added their photos recently, it's

always nice when you can put a face to a name.

Peace

Torsten

> I feel stupid, I joined this list and don't remember my

password....did I

> have to have a password to sign up??? Help!

>

>

> Tina Mom to Christian 11 yowcf and 19 yowocf

>

>

>

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  • 1 month later...

Hi Torsten,

I am sending your letter here because I am not up to writing this twice. I hope

that was ok........

Evaluation went real well, the Dr. we went to actually has CF patient's, and for

around here in this small hic town that is something!! LOL

We have our testing at Doernbecher's on Mon. the 23rd.

They did a chest x-ray on Philip and they were really surprised to find a lot of

fluid in his lungs. He doesn't wheeze and they only heard a " little " congestion.

It turned out a lot of fluid..........

I feel like I want to puke! I have fought so hard to get someone to listen and

now that they agree with me that CF is a very good possibility I don't think I

want to know! Sounds stupid doesn't it!!!

I already can see what I am going to have to deal with....I called family to

tell them what was happening and to see if we can stay at their house in

Portland when we go down for the testing. She had a really bad cold and I said

that maybe we would find another place to stay cuz she was so sick.......Her

comment was " I only have a cold " she said it with a lot of irritation, that I

would even consider not staying with them for that......I had just told her what

we where coming for and that Philip's lungs where full of fluid.......I know it

is just ignorance, I just can not handle him sick yet. I need to get used to the

idea of CF by itself first.

The Dr. actually took a throat culture, he was not going to but said he would

for me.

I need you to tell me it will be OK if he has CF.

Tell me you are OK and your daughter is OK and that as a family you all are OK

My only thought is

God is still GOOD,

Nanci

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Hi Torsten,

I am sending your letter here because I am not up to writing this twice. I hope

that was ok........

Evaluation went real well, the Dr. we went to actually has CF patient's, and for

around here in this small hic town that is something!! LOL

We have our testing at Doernbecher's on Mon. the 23rd.

They did a chest x-ray on Philip and they were really surprised to find a lot of

fluid in his lungs. He doesn't wheeze and they only heard a " little " congestion.

It turned out a lot of fluid..........

I feel like I want to puke! I have fought so hard to get someone to listen and

now that they agree with me that CF is a very good possibility I don't think I

want to know! Sounds stupid doesn't it!!!

I already can see what I am going to have to deal with....I called family to

tell them what was happening and to see if we can stay at their house in

Portland when we go down for the testing. She had a really bad cold and I said

that maybe we would find another place to stay cuz she was so sick.......Her

comment was " I only have a cold " she said it with a lot of irritation, that I

would even consider not staying with them for that......I had just told her what

we where coming for and that Philip's lungs where full of fluid.......I know it

is just ignorance, I just can not handle him sick yet. I need to get used to the

idea of CF by itself first.

The Dr. actually took a throat culture, he was not going to but said he would

for me.

I need you to tell me it will be OK if he has CF.

Tell me you are OK and your daughter is OK and that as a family you all are OK

My only thought is

God is still GOOD,

Nanci

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  • 1 year later...
Guest guest

Hey Jen, Dr. Marsh called me in Buffalo with news of 3 more EDSers in Az.

He wanted newsletters and wants me to fly out there to see them.....are you

going to be around in a few weeks?? Contact me at my usual...Love to the furry

kids....oh and Terri also.

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  • 4 years later...
Guest guest

Bev,

Thanks for posting the picture...it's always great to kind of mentally be able to put a face with an email address!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, March 6, 2009 8:56:01 PMSubject: picture

Hello everyone, I just put a picture in the photos. Bev Joy

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Thank you, Kay. I wondered why you were Beverley and Kay, My name is Beverley with that extra e. What month were you dx? I've already found out what a great group this is. Hello to you, too. My father was born near Monticello, Indiana . Bev

Fw:

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I will work on that next. It took me forever to figure out the signature, then I found that it does not work if I start a new topic??? My picture is from a studio so I have to figure out how to scan it in. I have all of the bells and whistles but have been sort of saving them until when I can't run around as much. Now I have everything on a memory stick or CD. Technology moves faster than I do. ha ha I have all of the family pictures from both sides of my parents families to identify and organize...they go back forever and I am the last one who can do it because everyone died before my daughter could have met them much less remembered who they were.

Margaret 62 Anchorage, Alaska

Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08

I enjoy traveling, photography, gardening, sewing, home decorating,

playing with my toys & classical music

aka Grammie Goose

To: Breathe-Support Sent: Friday, March 6, 2009 6:55:20 PMSubject: Re: picture

I've been trying to put some faces to the names by looking at the albums. Bev

picture

Hello everyone, I just put a picture in the photos. Bev Joy

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Guest guest

Bev Joy, Beautiful picture. It is so nice to be able to put a face with a name. You will have to add another layer, join us on chat.voices and accents are fun too. The next chat is March 19th.  Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Thank you, Kay. I wondered why you were Beverley and Kay, My name is Beverley with that extra e. What month were you dx? I've already found out what a great group this is. Hello to you, too. My father was born near Monticello, Indiana .  Bev Fw:  

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Bev Joy, Beautiful picture. It is so nice to be able to put a face with a name. You will have to add another layer, join us on chat.voices and accents are fun too. The next chat is March 19th.  Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Thank you, Kay. I wondered why you were Beverley and Kay, My name is Beverley with that extra e. What month were you dx? I've already found out what a great group this is. Hello to you, too. My father was born near Monticello, Indiana .  Bev Fw:  

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Guest guest

we should call one of you joy beverly and the other one kay beverly

then figure out which one has the extra e

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: pictureTo: Breathe-Support Date: Friday, March 6, 2009, 10:53 PM

Thank you, Kay. I wondered why you were Beverley and Kay, My name is Beverley with that extra e. What month were you dx? I've already found out what a great group this is. Hello to you, too. My father was born near Monticello, Indiana . Bev

Fw:

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Guest guest

Just looked at your picture Bev Joy. I love it when i can put a face w/ "the person"... Thanks.

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

picture

Hello everyone, I just put a picture in the photos. Bev Joy

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Guest guest

Just looked at your picture Bev Joy. I love it when i can put a face w/ "the person"... Thanks.

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

picture

Hello everyone, I just put a picture in the photos. Bev Joy

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Guest guest

I haven't figured out the signature yet. The pictures are easy. Scan your picture to your computer then set up your album and upload the oicture to the album. I have spent the last year trying to get my pictures on CD's and and a flash drive. I have hundreds and maybe thousands to go. Beverley Joy, 70, IPF, Idaho

picture

Hello everyone, I just put a picture in the photos. Bev Joy

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Thank you. I have never even heard of that kind of chat. It might take a while for me to get up the courage to try it. I had an appointment with my dr. at the time of the last chat. I am having strange pains. Shge had no idea what the cause could be. Beverley Joy, 70,IPF, Idaho

�Fw: �

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Thank you. I have never even heard of that kind of chat. It might take a while for me to get up the courage to try it. I had an appointment with my dr. at the time of the last chat. I am having strange pains. Shge had no idea what the cause could be. Beverley Joy, 70,IPF, Idaho

�Fw: �

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Thank you. I have never even heard of that kind of chat. It might take a while for me to get up the courage to try it. I had an appointment with my dr. at the time of the last chat. I am having strange pains. Shge had no idea what the cause could be. Beverley Joy, 70,IPF, Idaho

�Fw: �

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Guest guest

If you call me Joy Beverley I will really be in trouble. Havbing two first names confuses people. They already call me Joy a lot instead of Beverley. Beverley Joy, 70, IPF, Idaho

Fw:

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Guest guest

If you call me Joy Beverley I will really be in trouble. Havbing two first names confuses people. They already call me Joy a lot instead of Beverley. Beverley Joy, 70, IPF, Idaho

Fw:

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Guest guest

If you call me Joy Beverley I will really be in trouble. Havbing two first names confuses people. They already call me Joy a lot instead of Beverley. Beverley Joy, 70, IPF, Idaho

Fw:

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