New Member

[Guest guest]

Hi . Glad to meet you. I think you'll find this a great place

to be a parent. It's saved my sanity. Literally.

We have five kids from fifteen to two. So far it looks like three

are spectrum and two have other issues.

[Guest guest]

hi tracy,

i was away this weekend and didn't see your original post (i'll dig

for it though) i am michelle, my husband paul and i live in northern

ontario with our two boys sebastian (11) and rowan (6). rowan was

diagnosed with autism in feb 1999. i hope you enjoy yourself on this

list - it's the greatest!

michelle

> Hi . Glad to meet you. I think you'll find this a great

place

> to be a parent. It's saved my sanity. Literally.

>

> We have five kids from fifteen to two. So far it looks like three

> are spectrum and two have other issues.

>

>

[Guest guest]

Welcome . My name is Debbie. I'm also a sahm to 28 month old

boy/girl twins. My daughter is NT. My son Jordan was diagnosed

with autism this past July. This is a great, supportive group. They've

really done a lot for my outlook on things.

Debbie

[Guest guest]

-

Welcome to the list!

This is a great place to just be a mom!!!

You'll love it here!

Penny

Mom to Jacqui, 7 3/4, HFA

Jeff, 20

[Guest guest]

Hi !

Welcome aboard. This is a wonderful place to just be a mom! I'm sure

you'll like it here as long as our volume doesn't overwhelm you.....we

sometimes tend to get a bit gabby, but then that's half the appeal of being

here!

Sue in MI

Mom to: 12 1/2, HFA

9, AS/ADD

IM smgaska1

[Guest guest]

Dear Marcella,

Hi my name is and I'm a 23 yr-old female from Halifax, NS.

I'm new to Lupus and this group as well, and when I saw that you

live " next door " , I just had to respond! I've found this group to

be really informative and supportive since I joined 2 days ago and

have already shared some chuckles and shed some tears -- just from

reading others' messages. It seems that everybody in this group

knows exactly what it's like to bounce back and forth from one

health problem to another, so however bad you feel, just remember

that we're all going thru many of the same things too.

What kind of specialist are you seeing in 5 weeks, a

rheumatologist? I hope to hear back from you soon.

Take care of yourself,

.

" Hi my name is Marcella and I just join in yesterday...don't really

know how this work but I'm gonna give it a try.

I'm 48 years old female from N.B. Canada. I have 2 children and a

grandson and 2 more on the way and I'm waiting for being diagnose

for lupus. Been seeing the doctor for years telling him I was always

tired and couldn't sleep well and that I ached all over. I felt he

didn't listen to me and that it was all in my head... "

[Guest guest]

Hi, As a newly diagnosed IPF member, I find it impossible to read all these e-mails. I do have a question, hope I can find the answer! Is it the norm to have difficulty breathing walking through the house on 5 liters? Small house, I might add. Thanks for the help, Terry

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[Guest guest]

First, you can go to " My Groups " at top of page and change from

individual emails to digests or to reading online only. I could never

handle it all as emails myself.

Now, as to your question. There is no normal as we're all different

and at different stages. However, sob and oxygen saturation are

different things and you need to know both. If your oxygen is

dropping below 90 at 5 liters then you need more than 5 liters. If it

isn't, then there are plenty of other reasons to be short of breath

such as general physical condition, exercise or activity, allergies

or asthma, congestion, pulmonary hypertension. So the first question

is what happens to your sats when you walk around the house.

>

> Hi,

> As a newly diagnosed IPF member, I find it impossible to read all

these e-mails. I do have a question, hope I can find the answer!

> Is it the norm to have difficulty breathing walking through the

house on 5 liters? Small house, I might add.

> Thanks for the help,

> Terry

>

>

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

> Looking for last minute shopping deals? Find them fast with Yahoo!

Search.

>

[Guest guest]

Terry,

You don't know how my heart sings at the sight of all these e-mails. We are only 2 years old and we have grown in leaps and bounds. The need was here. I know for me this site has been a blessing. So, the more posts, the better.

I don't get the postings on e-mail, but on the board. So, I can pull up the messages and if I am too sick or busy to read them all, I can skip to the ones that interest me. However, I almost always read every one. This comes from 8 years of feeling totally alone with this disease!

Try reading from the messages instead of e-mail. May hasten your journey to find the answer that you are looking for.

No, it is not the norm to walk through the house at 5L and be short of breath. Call your doctor to report this. Do you have an oximeter? Don't do damage to the healthy parts of your body depriving it of adequate oxygen.

Stick around. We need each other.

Hugs, Joyce D.

Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006

I will not forget you...Behold, I have engraved you on the palms of my hands. Isaiah 49:15-16 >> Hi,> As a newly diagnosed IPF member, I find it impossible to read all these e-mails. I do have a question, hope I can find the answer!> Is it the norm to have difficulty breathing walking through the house on 5 liters? Small house, I might add.> Thanks for the help,> Terry> > > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.>

[Guest guest]

Hi ,

Glad you posted. I am one of the "prednisone people" and I don't think my head is athletic enough to be a basketball (lol)- I am calling mine a pumpkin! So glad you have a supportive family. Aren't grandkids wonderful?

Sarcoid/PF 3/2006 California

new member

I have been reading some of the post on this support group for about two weeks. I was not sure if I wanted to post anything or not but I find myself going to the sight and reading more often. Maybe it is because I am reading and relating to some of the problems. I found out that I had IPF March 26, 2007. I had a bronchoscopy in April it was inculusive and a lung biopsy in May confirming the IPF. I can relate to everyone when I read the problems with the predizone: WEIGHT gain, mood swings and insomia and I can't remember who posted it but the basketball head sums it up. I am under the treatment of doctor Mark Steele at Duke Medical. I have a wonderful family and freinds they are really good with support. My wife (Kathy)and I will be married 29 years on the 16th. I have two children DeWayne 28 and 26 and 6 grandkids. I spent 27 years in the Army and Army National Guard. I am a

vet of operation desert sheild/storm I was wondering if there are any members out there that are also Vets of this war that have been dignosed with IPF? and Kathy

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[Guest guest]

Hi ,

My name is Joe Lamenskie and I just joined for the same reasons. I am 59 (60 in April) and jut wanted to be part of this elite group. I am, probably like all, scared to death at times to take my next breath afraid I won't be able to inhale. Lets try to beat this monster with synergy. So far I have been impressed with all of the insight, knowledge and overall willingness to give supportive comments by this group. I WANT to be part of such great people.

I was drafted in May 1968 during the TET offensive and was actually drafted (I hate LBJ) without being given a physical. I had very bad vision and was told by my optometrist I would not be drafted. Yea right. This is much scarier than that.by the way my Uncle called our Congressman and I got a physical in my 3rd week of basic. Needless to say I DID NOT go to the jungle even though they tried several times after including LOSING my complete medical records allowing them to send me because they had no evidence of my bad eyes. Our Congressman got a second call and I did my 2 years at Ft. Carson Colo.

Enough about me lets talk about you. Do you feel this may be from sandstorms, or something acquired in the sandbox? I am sure others from the military in the same theater have this monster. I can't be of much help other than when I see you I want to give you a MAN hug and say welcome home. I know when in battle you want people you can depend on and stay with these veterans in the group and we will fight harder than ever.

I can Say from my heart I love this group from being in for just a few days,

Joe Lamenskie

-- new member

I have been reading some of the post on this support group for about two weeks. I was not sure if I wanted to post anything or not but I find myself going to the sight and reading more often. Maybe it is because I am reading and relating to some of the problems. I found out that I had IPF March 26, 2007. I had a bronchoscopy in April it was inculusive and a lung biopsy in May confirming the IPF. I can relate to everyone when I read the problems with the predizone: WEIGHT gain, mood swings and insomia and I can't remember who posted it but the basketball head sums it up. I am under the treatment of doctor Mark Steele at Duke Medical. I have a wonderful family and freinds they are really good with support. My wife (Kathy)and I will be married 29 years on the 16th. I have two children DeWayne 28 and 26 and 6 grandkids. I spent 27 years in the Army and Army National Guard. I am a vet of operation desert sheild/storm I was wondering if there are any members out there that are also Vets of this war that have been dignosed with IPF? and Kathy

[Guest guest]

Welcome .... to you and your wife. These times are hard on the families too.

Newbies are always welcome. Mainly because this is such a good place to land and there are answers here for you. My regrets that you deal with our common disease.

I was Dx (diagnosed) with IPF about 2 years ago and remained stable until just a couple of weeks ago and all of a sudden, "something" changed. I'm having testing done now.

Thanks for doing your part in Desert Storm. I loved Gen. Schwartzkoph (sp) and thought he was so good in his position. Do you think he was?

Do you think the sand caused your IPF?

Take it easy, gather info. about this disease and don't rush into anything w/o checking it all out first.

Regards.

Mama-Sher, age 69. UIP-IPF 3-06, OR. Don't fret about tomorrow, God is already there!

new member

I have been reading some of the post on this support group for about two weeks. I was not sure if I wanted to post anything or not but I find myself going to the sight and reading more often. Maybe it is because I am reading and relating to some of the problems. I found out that I had IPF March 26, 2007. I had a bronchoscopy in April it was inculusive and a lung biopsy in May confirming the IPF. I can relate to everyone when I read the problems with the predizone: WEIGHT gain, mood swings and insomia and I can't remember who posted it but the basketball head sums it up. I am under the treatment of doctor Mark Steele at Duke Medical. I have a wonderful family and freinds they are really good with support. My wife (Kathy)and I will be married 29 years on the 16th. I have two children DeWayne 28 and 26 and 6 grandkids. I spent 27 years in the Army and Army National Guard. I am a vet of operation desert sheild/storm I was wondering if there are any members out there that are also Vets of this war that have been dignosed with IPF? and Kathy

[Guest guest]

,

When my last slippery slide began the pulmonologist began raising my pred until it is now on 20. That is the magic number for me. This when I get emotional and fat. I have already gained 10 pounds. I feel like I am just weeks from giving birth. My face is changing. Again. I have been off and on so many times. As we look through pictures, we can tell the prednisone days vs. reg days. It is not pretty!

My new doc wants me off the pred, but is afraid to change anything right now when they are in the process of introducting this new treatment.

, you are such a pretty woman and I know the punkin head is not attractive. But, if it keeps you ticking, do it. Maybe soon, you can cut back and get back to normal.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Hi ,> Glad you posted. I am one of the "prednisone people" and I don't think my head is athletic enough to be a basketball (lol)- I am calling mine a pumpkin! So glad you have a supportive family. Aren't grandkids wonderful? > > Sarcoid/PF 3/2006 California> > > > > new member> > I have been reading some of the post on this support group for about > two weeks. I was not sure if I wanted to post anything or not but I > find myself going to the sight and reading more often. Maybe it is > because I am reading and relating to some of the problems. > > I found out that I had IPF March 26, 2007. I had a bronchoscopy in > April it was inculusive and a lung biopsy in May confirming the IPF. > I can relate to everyone when I read the problems with the predizone: > WEIGHT gain, mood swings and insomia and I can't remember who posted > it but the basketball head sums it up. I am under the treatment of > doctor Mark Steele at Duke Medical. > > I have a wonderful family and freinds they are really good with > support. My wife (Kathy)and I will be married 29 years on the 16th. I > have two children DeWayne 28 and 26 and 6 grandkids. I spent > 27 years in the Army and Army National Guard. > > I am a vet of operation desert sheild/storm I was wondering if there > are any members out there that are also Vets of this war that have > been dignosed with IPF? > > and Kathy > > > > > > ____________________________________________________________________________________> Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs>

[Guest guest]

... I want to personally thank you for the time you spent overseas and here, (for Joe too!) (Whenever you came home.) doing your military time!

I'm damn sorry this disease is the payback.

Hello to you too Kathy. This is so hard on families. I truly wish I could gather each family under my wings and just protect you all!

Yes, we'll "git-'er-done" together!

Mama-Sher, age 69. UIP-IPF 3-06, OR. Don't fret about tomorrow, God is already there!

new member

I have been reading some of the post on this support group for about two weeks. I was not sure if I wanted to post anything or not but I find myself going to the sight and reading more often. Maybe it is because I am reading and relating to some of the problems. I found out that I had IPF March 26, 2007. I had a bronchoscopy in April it was inculusive and a lung biopsy in May confirming the IPF. I can relate to everyone when I read the problems with the predizone: WEIGHT gain, mood swings and insomia and I can't remember who posted it but the basketball head sums it up. I am under the treatment of doctor Mark Steele at Duke Medical. I have a wonderful family and freinds they are really good with support. My wife (Kathy)and I will be married 29 years on the 16th. I have two children DeWayne 28 and 26 and 6 grandkids. I spent 27 years in the Army and Army National Guard. I am a vet of operation desert sheild/storm I was wondering if there are any members out there that are also Vets of this war that have been dignosed with IPF? and Kathy

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[Guest guest]

Hey Joe...be careful about putting cell/home phone/personal info on the board....remember we are "out there" to the world.

Go to the database on homepage, click on email at the top of the page and anyone you want to give info too you can send to them direct.

I've had a lot of spam since joining here but it may just be coincidental.

Mama-Sher, age 69. UIP-IPF 3-06, OR. Don't fret about tomorrow, God is already there!

new member

I have been reading some of the post on this support group for about two weeks. I was not sure if I wanted to post anything or not but I find myself going to the sight and reading more often. Maybe it is because I am reading and relating to some of the problems. I found out that I had IPF March 26, 2007. I had a bronchoscopy in April it was inculusive and a lung biopsy in May confirming the IPF. I can relate to everyone when I read the problems with the predizone: WEIGHT gain, mood swings and insomia and I can't remember who posted it but the basketball head sums it up. I am under the treatment of doctor Mark Steele at Duke Medical. I have a wonderful family and freinds they are really good with support. My wife (Kathy)and I will be married 29 years on the 16th. I have two children DeWayne 28 and 26 and 6 grandkids. I spent 27 years in the Army and Army National Guard. I am a vet of operation desert sheild/storm I was wondering if there are any members out there that are also Vets of this war that have been dignosed with IPF? and Kathy

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

...you are most certainly welcome! Peggy dubbed us the "air-family"....and so we are.

Mama-Sher, age 69. UIP-IPF 3-06, OR. Don't fret about tomorrow, God is already there!

new member

I have been reading some of the post on this support group for about two weeks. I was not sure if I wanted to post anything or not but I find myself going to the sight and reading more often. Maybe it is because I am reading and relating to some of the problems. I found out that I had IPF March 26, 2007. I had a bronchoscopy in April it was inculusive and a lung biopsy in May confirming the IPF. I can relate to everyone when I read the problems with the predizone: WEIGHT gain, mood swings and insomia and I can't remember who posted it but the basketball head sums it up. I am under the treatment of doctor Mark Steele at Duke Medical. I have a wonderful family and freinds they are really good with support. My wife (Kathy)and I will be married 29 years on the 16th. I have two children DeWayne 28 and 26 and 6 grandkids. I spent 27 years in the Army and Army National Guard. I am a vet of operation desert sheild/storm I was wondering if there are any members out there that are also Vets of this war that have been dignosed with IPF? and Kathy

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Joe ,

I do remember that song. There were a lot of those very coloful cadances that haunt alot of us old soldiers from way back when. It's a good day today the sun is out and shinning. My daughter just called me, they live in Fayetteville ( Ft. Bragg) Both She and her husband are soldiers there. We are going to see them next week end. Man i'm just rattling on here . You all have a great day, and Kathy

new member

I have been reading some of the post on this support group for about two weeks. I was not sure if I wanted to post anything or not but I find myself going to the sight and reading more often. Maybe it is because I am reading and relating to some of the problems. I found out that I had IPF March 26, 2007. I had a bronchoscopy in April it was inculusive and a lung biopsy in May confirming the IPF. I can relate to everyone when I read the problems with the predizone: WEIGHT gain, mood swings and insomia and I can't remember who posted it but the basketball head sums it up. I am under the treatment of doctor Mark Steele at Duke Medical. I have a wonderful family and freinds they are really good with support. My wife (Kathy)and I will be married 29 years on the 16th. I have two children DeWayne 28 and 26 and 6 grandkids. I spent 27 years in the Army and Army National Guard. I am a

vet of operation desert sheild/storm I was wondering if there are any members out there that are also Vets of this war that have been dignosed with IPF? and Kathy

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

, my name is Babs and I live in Texas. Whenever I see or meet

someone who is serving our Country or who has served in the past, I

always thank them for their time and for their sacrifices.

So, may I say Thank You to you? Without folks like you our Country

would not be the best Country in the world. And after reading more of

your posts it seems like you may have PF from doing your tours of

duty,and for that I'm very sorry.

My Dad was WWII, Navy, Frogman, Underwater Demolitions, or what became

the Navy Seals.

My older brother was career Army, 4 tours of Vietnam, time in Germany,

England and a career DI at Fort Sill. He is my personal hero.

My brother who passed from Wegners Granulamatosis was also career

Army, a medical doctor who became a pathologist.

As you can imagine, we are very proud of our Country and the military

service our family provided.

I am sorry you had to find this site, but very glad that you found

such a wonderful place to learn and make supportive friends. Welcome!

Babs in Texas

>

> I have been reading some of the post on this support group for about

> two weeks. I was not sure if I wanted to post anything or not but I

> find myself going to the sight and reading more often. Maybe it is

> because I am reading and relating to some of the problems.

>

> I found out that I had IPF March 26, 2007. I had a bronchoscopy in

> April it was inculusive and a lung biopsy in May confirming the IPF.

> I can relate to everyone when I read the problems with the predizone:

> WEIGHT gain, mood swings and insomia and I can't remember who posted

> it but the basketball head sums it up. I am under the treatment of

> doctor Mark Steele at Duke Medical.

>

> I have a wonderful family and freinds they are really good with

> support. My wife (Kathy)and I will be married 29 years on the 16th. I

> have two children DeWayne 28 and 26 and 6 grandkids. I spent

> 27 years in the Army and Army National Guard.

>

> I am a vet of operation desert sheild/storm I was wondering if there

> are any members out there that are also Vets of this war that have

> been dignosed with IPF?

>

> and Kathy

>

[Guest guest]

Joyce,

Despite all my complaining about the prednisone I really do think it saved me and I am so grateful you encouraged me to take it. I was sliding downhill so fast in the beginning and since the prednisone I have been pretty stable. I don't like my new "look" but I love being able to travel and spend so much fun time with friends and family. I too start changing quickly at 20 but right now I am down to 10 and it's not too bad. I don't gain weight on the 10 but I don't lose it either. I just have to accept the new fluffy me! Love,

Sarcoid/PF 3/2006 California

new member> > I have been reading some of the post on this support group for about > two weeks. I was not sure if I wanted to post anything or not but I > find myself going to the sight and reading more often. Maybe it is > because I am reading and relating to some of the problems. > > I found out that I had IPF March 26, 2007. I had a bronchoscopy in > April it was inculusive and a lung biopsy in May confirming the IPF. > I can relate to everyone when I read the problems with the predizone: > WEIGHT gain, mood swings and insomia and I can't remember who posted > it but the basketball head sums it up. I am under the treatment of > doctor Mark Steele at Duke Medical. > > I have a wonderful family and freinds they are really good with > support. My wife (Kathy)and I will be

married 29 years on the 16th. I > have two children DeWayne 28 and 26 and 6 grandkids. I spent > 27 years in the Army and Army National Guard. > > I am a vet of operation desert sheild/storm I was wondering if there > are any members out there that are also Vets of this war that have > been dignosed with IPF? > > and Kathy > > > > > > ____________ _________ _________ _________ _________ _________ _________ _________ _________> Never miss a thing. Make Yahoo your home page. > http://www.yahoo. com/r/hs>

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