Re: Fwd: new to group/Questions

[Guest guest]

Thank you Peggy, All this time, I've been using vaseline around my nose. Also, I noticed others talking about the funny smell from the large concentrators. Mine used to smell like led or something, then the rep brought the famous "plastic water bottle", and told me to keep it filled with distilled water.Peggy wrote: Deon, I may be able to give you a tubing tip. trim the ends of the nose prongs just a little so they don't touch your nose inside. Also use Ocean gel or Ayr gel. KY

jelly. Just don't use petroleum products with 02. Prednisone is the best / worst of drugs. God Bless you with strength to fight. Love and Prayers, Peggy ipf 6/04 Florida "Worry looks around, Sorry looks back, Faith looks up." Note: forwarded message attached. Looking for last minute shopping deals? Find them fast with Yahoo! Search. From: Deon Barron <travett123> Date: January 18, 2008 11:19:50 AM EST To: breath-support Subject:

new to group/Questions Hello everyone, I sent an email a few days ago 37yr old wife and mother of a 16yr old daughter and 12 yr old son. Diagnosed with mixed connective tissue disease, vasculitis and raynauds in 2005, and pulmonary fibrosis in 2006. This has been a major rollercoaster for me (which I'm sure you all can relate). My question is: how do you all deal with the nose soreness from the oxygen tubing? this may sound minor, but it drives me crazy. Currently I'm on 3.5 to 4 liters of oxygen, I nebulize twice daily, 50mg of prednisone, and I use combivent twice daily. Question: I've had issues with finding a Rhumetologist who can handle the multitude of issues I have. Prednisone seems to be the answer to

everything. What's an alternative to steroids? Question: have any of you found cough syrup containing codeine effective ? my chest is killing me from the coughing Any advise will be appreciated, Deon Lithonia, Ga Looking for last minute shopping deals? Find them fast with Yahoo! Search.

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[Guest guest]

The water bottle is really a nose throat saver until you get to higher flow. well you still can't do without it.Be sure to wash the filters on the sides of your machine regularly.  Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Thank you  Peggy,All this time, I've been using vaseline around my nose.  Also, I noticed others talking about the funny smell from the large concentrators.  Mine used to smell like led or something, then the rep brought the famous "plastic water bottle", and told me to keep it filled with distilled water.Peggy <pac1773cfl (DOT) rr.com> wrote:Deon, I may be able to give you a tubing tip. trim the ends of the nose prongs just a little so they don't touch your nose inside. Also use Ocean gel or Ayr gel. KY jelly. Just don't use petroleum products with 02.Prednisone is the best / worst of drugs.God Bless you with strength to fight.Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up."Note: forwarded message attached.Looking for last minute shopping deals? Find them fast with Yahoo! Search.From: Deon Barron <travett123>Date: January 18, 2008 11:19:50 AM ESTTo: breath-support Subject: new to group/QuestionsHello everyone,I sent an email a few days ago 37yr old wife and mother of a 16yr old daughter and 12 yr old son.  Diagnosed with mixed connective tissue disease, vasculitis and raynauds in 2005, and pulmonary fibrosis in 2006. This has been a major rollercoaster for me (which I'm sure you all can relate). My question is: how do you all deal with the nose soreness  from the oxygen tubing?  this may sound minor, but it drives me crazy. Currently I'm on 3.5 to 4 liters of oxygen, I nebulize twice daily, 50mg of prednisone, and I use combivent twice daily.  Question: I've had issues with finding a Rhumetologist who can handle the multitude of issues I have.  Prednisone seems to be the answer to everything.  What's an alternative to steroids? Question: have any of you found cough syrup containing codeine effective ?  my chest is killing me from the coughing Any advise will be appreciated,DeonLithonia, GaLooking for last minute shopping deals? Find them fast with Yahoo! Search.Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Deon... I want you to know I did read your post and will defer to others who have experience with what you need to know.

My input on prednisone is that I will not take it. At least not until there is absolutely no other alternative and/or for short intervals. There is no cure and no treatment for IPF and the side effects from prednisone leave me not wanting to touch it with a ten-foot pole.

You don't say in how big an area you live in regard to finding a rheumy. Are you near a teaching hospital? That's usually a good choice.

Others will respond.

Come back.

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

Fwd: new to group/Questions

Note: forwarded message attached.

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[Guest guest]

Hi Sher, I'm about 20 minutes from downtown Atlanta, GA. I actually have a wonderful Pulmonologist, it's the problem of finding a Rhemotologist who is experienced with the Mixed Connective tissue issues. The last two I had were Emory Hospital physicians, but one moved out of state and the other left to practice with her hubby. Because I'm experiencing so many skin issues from the vasculitis, and mct disease along with the PF my dermatologist and pulmonologist and the soon to be old Rhuemi feel prednisone is the key for now. From 2005 until last month, I've been in and out of the hospital monthly, due to chest pains, fluid build up around my heart, pnuemonia, infections ect.... As always I get pumped up with a high dose of IV steriods and sent home.Sher Bauman wrote: Deon... I want you to know I did read your post and will defer to others who have experience with what you need to know. My input on prednisone is that I will not take it. At least not until there is absolutely no other alternative and/or for short intervals. There is no cure and no treatment for IPF and the side effects from prednisone leave me not wanting to touch it with a ten-foot pole. You

don't say in how big an area you live in regard to finding a rheumy. Are you near a teaching hospital? That's usually a good choice. Others will respond. Come back. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Fwd: new to group/Questions Note: forwarded message attached. Looking for last minute shopping deals? Find them fast with Yahoo! Search.

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Deon... I'm laughing at myself as I read our posts this morning. I said,"Come back" as though I am a cool c-b'er. haha. I meant for YOU to come back to the board. BTW, do people still have CBs in their cars?? I don't think so.........

I read you have 'skin issues'. So do I and I ask Drs. but no one seems to really know what it is. Allergy? meds? heat rash? It's a guessing game right now so I guess I will have to see a dermatologist. Geeze I hate to bring another Dr. into my care!!! Calgon, take me away!

Vasculitis. Hmmm. currently

My dog is being treated for the same thing. Had to take her to a dog-dermatologist. He said it is not contagious.

What is mct disease?

Thanks, and keep coming back.

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

Fwd: new to group/Questions

Note: forwarded message attached.

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Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Sher:

Maybe you should use some of your dog's medicine....no no...just

kidding.

I gave up on my skin problems as they aren't as bad as many of yours

and every attempted solution was worse than the problem.

> Deon... I want you to know I did read your post and will defer

to others who have experience with what you need to know.

> My input on prednisone is that I will not take it. At least not

until there is absolutely no other alternative and/or for short

intervals. There is no cure and no treatment for IPF and the side

effects from prednisone leave me not wanting to touch it with a ten-

foot pole.

> You don't say in how big an area you live in regard to finding

a rheumy. Are you near a teaching hospital? That's usually a good

choice.

> Others will respond.

> Come back.

>

> Mama-Sher, 69; IPF, 3-06, OR.

> Don't fret about tomorrow, God is already there!

> Fwd: new to group/Questions

>

>

>

>

> Note: forwarded message attached.

>

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

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

Yahoo! Search.

>

>

>

>

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

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> Never miss a thing. Make Yahoo your homepage.

>

[Guest guest]

I have a really odd thingie going on with my hands. RED and HOT.. It is spreading to my fingers. it started years agowith a small red place on my palm. Now it is everywhere around the edge of my hand and fingers. Burns like crazy.When I looked it up on the internet it said red hands are caused from drinking.. I don't drink. LOL  I have ask every Dr I have seen in the past 15 years. They all say thats Odd. The bottoms of my feet burn to but they are not red.I'll post a picture later. It is weird looking ipf 6/04Worry looks around.Sorry looks back,Faith looks up. Deon...  I'm laughing at myself as I read our posts this morning. I said,"Come back" as though I am a cool c-b'er. haha. I meant for YOU to come back to the board.  BTW, do people still have CBs in their cars?? I don't think so.........I read you have 'skin issues'. So do I and I ask Drs. but no one seems to really know what it is. Allergy? meds? heat rash? It's a guessing game right now so I guess I will have to see a dermatologist. Geeze I hate to bring another Dr. into my care!!! Calgon, take me away!Vasculitis. Hmmm. currentlyMy dog is being treated for the same thing. Had to take her to a dog-dermatologist. He said it is not contagious.What is mct disease?Thanks, and keep coming back.      Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!  Fwd: new to group/QuestionsNote: forwarded message attached.Looking for last minute shopping deals? Find them fast with Yahoo! Search.Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Maybe you're reverse of the norm and need to start drinking to cure

it.

It does seem like these skin issues should be simpler for us. Its not

like they have to do scans and tests and everything to see them. They

are right there.....look doctor, I have these red places.....see.

> Deon... I want you to know I did read your post and will defer to

> others who have experience with what you need to know.

> My input on prednisone is that I will not take it. At least not

until

> there is absolutely no other alternative and/or for short

intervals.

> There is no cure and no treatment for IPF and the side effects

from

> prednisone leave me not wanting to touch it with a ten-foot pole.

> You don't say in how big an area you live in regard to finding a

> rheumy. Are you near a teaching hospital? That's usually a good

choice.

> Others will respond.

> Come back.

>

> Mama-Sher, 69; IPF, 3-06, OR.

> Don't fret about tomorrow, God is already there!

> Fwd: new to group/Questions

>

>

>

> Note: forwarded message attached.

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

> Search.

>

>

> Never miss a thing. Make Yahoo your homepage.

>

[Guest guest]

I wish I had a penny for every Dr. I've shown this to. LOL It gets to the place I hold a wet rag in my hand.. Very aggravating.  Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Maybe you're reverse of the norm and need to start drinking to cure it. It does seem like these skin issues should be simpler for us. Its not like they have to do scans and tests and everything to see them. They are right there.....look doctor, I have these red places.....see.> Deon... I want you to know I did read your post and will defer to > others who have experience with what you need to know.> My input on prednisone is that I will not take it. At least not until > there is absolutely no other alternative and/or for short intervals. > There is no cure and no treatment for IPF and the side effects from > prednisone leave me not wanting to touch it with a ten-foot pole.> You don't say in how big an area you live in regard to finding a > rheumy. Are you near a teaching hospital? That's usually a good choice.> Others will respond.> Come back.> > Mama-Sher, 69; IPF, 3-06, OR.> Don't fret about tomorrow, God is already there!> Fwd: new to group/Questions> > > > Note: forwarded message attached.> Looking for last minute shopping deals? Find them fast with Yahoo! > Search.> > > Never miss a thing. Make Yahoo your homepage.>

[Guest guest]

OOPS How ya doing today?? Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Maybe you're reverse of the norm and need to start drinking to cure it. It does seem like these skin issues should be simpler for us. Its not like they have to do scans and tests and everything to see them. They are right there.....look doctor, I have these red places.....see.> Deon... I want you to know I did read your post and will defer to > others who have experience with what you need to know.> My input on prednisone is that I will not take it. At least not until > there is absolutely no other alternative and/or for short intervals. > There is no cure and no treatment for IPF and the side effects from > prednisone leave me not wanting to touch it with a ten-foot pole.> You don't say in how big an area you live in regard to finding a > rheumy. Are you near a teaching hospital? That's usually a good choice.> Others will respond.> Come back.> > Mama-Sher, 69; IPF, 3-06, OR.> Don't fret about tomorrow, God is already there!> Fwd: new to group/Questions> > > > Note: forwarded message attached.> Looking for last minute shopping deals? Find them fast with Yahoo! > Search.> > > Never miss a thing. Make Yahoo your homepage.>

[Guest guest]

Peggy... I've heard that arthritis can cause red hands/feet.

Suppose???

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

Fwd: new to group/Questions

Note: forwarded message attached.

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

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Peggy... once again I feel that familiar irritation rising up...When "every Dr." doesn't know what something that unusual could be it's like having a door slammed in my (your)face. Oh I get po.

Have you tried a dermatologist too??

Maybe it's just our body putting out toxins from meds and disease and on and on.

If you ever find out, post it. I'll bet there are others or will be.

Have a good weekend.

My Lysa is coming in the morning for a 'sleep-over' with us. No kids. She just wants to spend some time with mom. Ain't that sweet??? Bless her little pointed head.

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

Fwd: new to group/Questions> > > > Note: forwarded message attached.> Looking for last minute shopping deals? Find them fast with Yahoo! > Search.> > > Never miss a thing. Make Yahoo your homepage.>

[Guest guest]

Well, " I don't know, so let's try this " was popular. Oh, and the

other one that seems always convenient when one doesn't know

is " stress. " Cures ranged from large amounts of advil and a cream

that came with huge warnings and broke my skin out something awful to

every over the counter skin thing there is to steroids (which I ran

from that doctor fast) to psychiatric medications to keep me from

scratching.

> > Deon... I want you to know I did read your post and will defer

> to others who have experience with what you need to know.

> > My input on prednisone is that I will not take it. At least not

> until there is absolutely no other alternative and/or for short

> intervals. There is no cure and no treatment for IPF and the side

> effects from prednisone leave me not wanting to touch it with a

ten-

> foot pole.

> > You don't say in how big an area you live in regard to finding

> a rheumy. Are you near a teaching hospital? That's usually a good

> choice.

> > Others will respond.

> > Come back.

> >

> > Mama-Sher, 69; IPF, 3-06, OR.

> > Don't fret about tomorrow, God is already there!

> > Fwd: new to group/Questions

> >

> >

> >

> >

> > Note: forwarded message attached.

> >

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

> ------

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

> Yahoo! Search.

> >

> >

> >

> >

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

> ----------

> > Never miss a thing. Make Yahoo your homepage.

> >

>