Hi All

[Guest guest]

Joyce, I have been having discomfort in my chest neck ears also after being on my feet. It happens when I sit down.I just hold up one finger and tell them wait until I catch up with myself. I ask Dr. Antony about this and she said Pulmonary Hypertension. I promptly told her "NO I am not going to have that." I may have to check into it further later.. not now.I was just talking to . She ask about you and I told her you were having a rough time, she is on the way to church and said she will have special prayer for you and the group.  Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Gwynne,You mentioned your saturation dropping fast.  When yours does that does it hurt?  My chest hurts and I have pain up my neck and into my ears.  My face gets really hot.  I went to a Christmas lunch yesturday with a big group of friends and I had 3 episodes.  I just have to stop, sit and wait for the numbers to come back up. Have you ever fainted?  So far, I have not.  It makes me nervous about going out. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997    BRONCHIECTASIS 2004   INDIANA 2 COR. 12:10   ....when I am weak, then I am strong.>> Peggy,> No need to worry, but thanks for your concern, sweet> friend. I've just been involved in too many things at once,> and sometimes it just takes more time than I've got to> stay current with the board. My dad is out of town & I've> been trying to be there more for my mom while he's away.> Yesterday I spent the day in bed without a drop of energy,> but am feeling stronger today. Hope your eye is doing better.> > My sincere sympathy goes out to the wife and family of> Heidler, a valued member of this forum.> > ,> The negligence on the part of that doc is staggering!!> and Jim,> I'm truly sorry about the loss of your friends. My friends> are deeply cherished treasures, so I feel your loss.> Jim, I'm on CellCept, a powerful immunosuppresant. I> am a pre-transplant patient, and it's used as an anti-> rejection drug later. But I believe I'm getting it now> because of the presence of antibodies that I have that> they're hoping to reduce in number. I've been on it> for nearly two years and haven't had any side effects.> > Jon and Teri,> That's great news about Jaydn. I know you're relieved!!> > Jim Moye,> I'm sorry for your IPF diagnosis, but glad you found such> a genuinely caring group as this. Welcome, fellow Texan.> > Which Jim is Jimbo?> > Zena,> We're here for you, although I'm sorry you have the> need for a support group such as this. This is a safe place> to vent, laugh, cry, learn, and inform, among very caring> individuals. Please keep us posted on your status.> > ,> I'm thinking of you and wondering if you've had the procedure.> Prayers are going up for you, dear lady.> > Vicky,> I'm glad to see your post and delighted with your test results!!!> > Joyce,> I'm sorry about your bubble head fiasco. Not funny, I'm> sure. Glad we don't have to write to you in the slammer!> I haven't been around much lately, and I think I> failed to respond to you about masks and my> glasses. Well, I've never used a mask of any kind.> Supposedly, my glasses are good up to 5L, but they're> all I use except when I'm hooked up directly to my> reservoirs. My sats indicate that I'm getting what I> need - not that mine don't fall often and hard, but> I'm convinced they would anyway whenever I move> around.> > ,> You ARE pretty! Thank you SO much for the lovely> travel photos. They are breathtaking!> > Lou,> I love leftovers. We had nice paper plates at> Thanksgiving and it was great to have the extra time> to spend together instead of cleaning up! Enjoy!!> > Sher,> Congratulations on the new great-grand babe. Lucky duck!> > Sandie,> I hate being in limbo, but it is dangerous to read reports> by ourselves and guess. I'd say you need a pulmonologist> right away. You'll get some answers there, no matter what> type of lung ailment you've got. Hang in there and keep us> posted!> > Hugs and blessings,> Gwynne IPF 7/04 listed for transplant 3/07 Texas>

[Guest guest]

Joyce, I Hope you had a Enjoyable time at the XMAS lunch! but sorry to hear your Sat

A question below on your post you said "My face gets really hot". I get that most of the time and it feels I'm being cooked as a chicken (lol), I check for fever but there is no fever at all.

I have fainted once but it was related to having eaten a doughtnut, drank a Coke in the morning and had not eaten until supper. I dropped on the floor like a fly and couldn't rememeber what had happenned.

Irene Raynaud's Disease 09/07 PF 03/07 Canada

---- Original Message ----

To: Breathe-Support

Sent: Wed, 5 Dec 2007 6:07 pm

Subject: Re: Hi All

Gwynne,

You mentioned your saturation dropping fast. When yours does that does it hurt? My chest hurts and I have pain up my neck and into my ears. My face gets really hot. I went to a Christmas lunch yesturday with a big group of friends and I had 3 episodes. I just have to stop, sit and wait for the numbers to come back up.

Have you ever fainted? So far, I have not. It makes me nervous about going out.

Hugs, Joyce D.

PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

2 COR. 12:10 ....when I am weak, then I am strong.

>

> Peggy,

> No need to worry, but thanks for your concern, sweet

> friend. I've just been involved in too many things at once,

> and sometimes it just takes more time than I've got to

> stay current with the board. My dad is out of town & I've

> been trying to be there more for my mom while he's away.

> Yesterday I spent the day in bed without a drop of energy,

> but am feeling stronger today. Hope your eye is doing better.

>

> My sincere sympathy goes out to the wife and family of

> Heidler, a valued member of this forum.

>

> ,

> The negligence on the part of that doc is staggering!!

> and Jim,

> I'm truly sorry about the loss of your friends. My friends

> are deeply cherished treasures, so I feel your loss.

> Jim, I'm on CellCept, a powerful immunosuppresant. I

> am a pre-transplant patient, and it's used as an anti-

> rejection drug later. But I believe I'm getting it now

> because of the presence of antibodies that I have that

> they're hoping to reduce in number. I've been on it

> for nearly two years and haven't had any side effects.

>

> Jon and Teri,

> That's great news about Jaydn. I know you're relieved!!

>

> Jim Moye,

> I'm sorry for your IPF diagnosis, but glad you found such

> a genuinely caring group as this. Welcome, fellow Texan.

>

> Which Jim is Jimbo?

>

> Zena,

> We're here for you, although I'm sorry y ou have the

> need for a support group such as this. This is a safe place

> to vent, laugh, cry, learn, and inform, among very caring

> individuals. Please keep us posted on your status.

>

> ,

> I'm thinking of you and wondering if you've had the procedure.

> Prayers are going up for you, dear lady.

>

> Vicky,

> I'm glad to see your post and delighted with your test results!!!

>

> Joyce,

> I'm sorry about your bubble head fiasco. Not funny, I'm

> sure. Glad we don't have to write to you in the slammer!

> I haven't been around much lately, and I think I

> failed to respond to you about masks and my

> glasses. Well, I've never used a mask of any kind.

> Supposedly, my glasses are good up to 5L, but they're

> all I use except when I'm hooked up directly to my

> reservoirs. My sats indicate that I'm getting what I

> need - not that mine don't fall often and hard, but

> I'm convinced they would anyway whenever I move

> around.

>

> ,

> You ARE pretty! Thank you SO much for the lovely

> travel photos. They are breathtaking!

>

> Lou,

> I love leftovers. We had nice paper plates at

> Thanksgiving and it was great to have the extra time

> to spend together instead of cleaning up! Enjoy!!

>

> Sher,

> Congratulations on the new great-grand babe. Lucky duck!

>

> Sandie,

> I hate being in limbo, but it is dangerous to read reports

> by ourselves and guess. I'd say you need a pulmonologist

> right away. You'll get some answers there, no matter what

> type of lung ailment you've got. Hang in there and keep us

> posted!

>

> Hugs and blessings,

> Gwynne IPF 7/04 listed for transplant 3/07 Texas

>

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

[Guest guest]

Peggy...what is this "Pulmonary Hypertension"? I can go search it but tell me in easy words.

Saw my Dr. today. Briefly...he does not think I have IPF because I'm not sick enough after 2 years. There have been no significant changes since 3-06.

He doesn't think it necessary to do a VATS right now, thinking it won't give him any more info. than we have right now with PFTS and C-scans. So it's a watch and wait right now. As I said, there is no doubt I have ILD but what kind or if it's something else we don't know.

I think I feel Bruce's "need to know" rising in my brain. No news is good news but I'm not sure I like just waiting for progression to happen!

He ordered rehab for me again. Couldn't do it for a long time because of the pain and sob, but that's under control now. While I was doing rehab before, a heart problem surfaced so now I guess I'll have to trace that down.

I keep track of mileage and we already have nearly 3000 miles just for medical travel!

Oh well.

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

[Guest guest]

One more thing Sher, Are you dancing in the street yet???????? I would be. Let a Dr. tell me I don't have this monster and I am doing the BOOGIE in the street..LOL.  I am thrilled for you. Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Peggy...what is this "Pulmonary Hypertension"? I can go search it but tell me in easy words.Saw my Dr. today. Briefly...he does not think I have IPF because I'm not sick enough after 2 years. There have been no significant changes since 3-06.He doesn't think it necessary to do a VATS right now, thinking it won't give him any more info. than we have right now with PFTS and C-scans. So it's a watch and wait right now. As I said, there is no doubt I have ILD but what kind or if it's something else we don't know.I think I feel Bruce's "need to know" rising in my brain. No news is good news but I'm not sure I like just waiting for progression to happen!He ordered rehab for me again. Couldn't do it for a long time because of the pain and sob, but that's under control now. While I was doing rehab before, a heart problem surfaced so now I guess I'll have to trace that down.I keep track of mileage and we already have nearly 3000 miles just for medical travel!Oh well. Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

Peggy,

A little over a year ago when they did my heart cath, they said no PF. Perhaps, it has developed since then. I do PFTs in a couple of weeks. The thought of it makes me panic!

Thanks for sharing your symptom with me. I hadn't heard anyone else mention that kind of pain. It happens every time my 02 drops. Then when I sit down, it goes lower before starting back up.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > Peggy,> > > No need to worry, but thanks for your concern, sweet> > > friend. I've just been involved in too many things at once,> > > and sometimes it just takes more time than I've got to> > > stay current with the board. My dad is out of town & I've> > > been trying to be there more for my mom while he's away.> > > Yesterday I spent the day in bed without a drop of energy,> > > but am feeling stronger today. Hope your eye is doing better.> > >> > > My sincere sympathy goes out to the wife and family of> > > Heidler, a valued member of this forum.> > >> > > ,> > > The negligence on the part of that doc is staggering!!> > > and Jim,> > > I'm truly sorry about the loss of your friends. My friends> > > are deeply cherished treasures, so I feel your loss.> > > Jim, I'm on CellCept, a powerful immunosuppresant. I> > > am a pre-transplant patient, and it's used as an anti-> > > rejection drug later. But I believe I'm getting it now> > > because of the presence of antibodies that I have that> > > they're hoping to reduce in number. I've been on it> > > for nearly two years and haven't had any side effects.> > >> > > Jon and Teri,> > > That's great news about Jaydn. I know you're relieved!!> > >> > > Jim Moye,> > > I'm sorry for your IPF diagnosis, but glad you found such> > > a genuinely caring group as this. Welcome, fellow Texan.> > >> > > Which Jim is Jimbo?> > >> > > Zena,> > > We're here for you, although I'm sorry you have the> > > need for a support group such as this. This is a safe place> > > to vent, laugh, cry, learn, and inform, among very caring> > > individuals. Please keep us posted on your status.> > >> > > ,> > > I'm thinking of you and wondering if you've had the procedure.> > > Prayers are going up for you, dear lady.> > >> > > Vicky,> > > I'm glad to see your post and delighted with your test results!!!> > >> > > Joyce,> > > I'm sorry about your bubble head fiasco. Not funny, I'm> > > sure. Glad we don't have to write to you in the slammer!> > > I haven't been around much lately, and I think I> > > failed to respond to you about masks and my> > > glasses. Well, I've never used a mask of any kind.> > > Supposedly, my glasses are good up to 5L, but they're> > > all I use except when I'm hooked up directly to my> > > reservoirs. My sats indicate that I'm getting what I> > > need - not that mine don't fall often and hard, but> > > I'm convinced they would anyway whenever I move> > > around.> > >> > > ,> > > You ARE pretty! Thank you SO much for the lovely> > > travel photos. They are breathtaking!> > >> > > Lou,> > > I love leftovers. We had nice paper plates at> > > Thanksgiving and it was great to have the extra time> > > to spend together instead of cleaning up! Enjoy!!> > >> > > Sher,> > > Congratulations on the new great-grand babe. Lucky duck!> > >> > > Sandie,> > > I hate being in limbo, but it is dangerous to read reports> > > by ourselves and guess. I'd say you need a pulmonologist> > > right away. You'll get some answers there, no matter what> > > type of lung ailment you've got. Hang in there and keep us> > > posted!> > >> > > Hugs and blessings,> > > Gwynne IPF 7/04 listed for transplant 3/07 Texas> > >> >> >> >>

[Guest guest]

Peggy,

Oooops, I meant to say no PH. Wish they had said no PF....no such luck.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > Peggy,> > > No need to worry, but thanks for your concern, sweet> > > friend. I've just been involved in too many things at once,> > > and sometimes it just takes more time than I've got to> > > stay current with the board. My dad is out of town & I've> > > been trying to be there more for my mom while he's away.> > > Yesterday I spent the day in bed without a drop of energy,> > > but am feeling stronger today. Hope your eye is doing better.> > >> > > My sincere sympathy goes out to the wife and family of> > > Heidler, a valued member of this forum.> > >> > > ,> > > The negligence on the part of that doc is staggering!!> > > and Jim,> > > I'm truly sorry about the loss of your friends. My friends> > > are deeply cherished treasures, so I feel your loss.> > > Jim, I'm on CellCept, a powerful immunosuppresant. I> > > am a pre-transplant patient, and it's used as an anti-> > > rejection drug later. But I believe I'm getting it now> > > because of the presence of antibodies that I have that> > > they're hoping to reduce in number. I've been on it> > > for nearly two years and haven't had any side effects.> > >> > > Jon and Teri,> > > That's great news about Jaydn. I know you're relieved!!> > >> > > Jim Moye,> > > I'm sorry for your IPF diagnosis, but glad you found such> > > a genuinely caring group as this. Welcome, fellow Texan.> > >> > > Which Jim is Jimbo?> > >> > > Zena,> > > We're here for you, although I'm sorry you have the> > > need for a support group such as this. This is a safe place> > > to vent, laugh, cry, learn, and inform, among very caring> > > individuals. Please keep us posted on your status.> > >> > > ,> > > I'm thinking of you and wondering if you've had the procedure.> > > Prayers are going up for you, dear lady.> > >> > > Vicky,> > > I'm glad to see your post and delighted with your test results!!!> > >> > > Joyce,> > > I'm sorry about your bubble head fiasco. Not funny, I'm> > > sure. Glad we don't have to write to you in the slammer!> > > I haven't been around much lately, and I think I> > > failed to respond to you about masks and my> > > glasses. Well, I've never used a mask of any kind.> > > Supposedly, my glasses are good up to 5L, but they're> > > all I use except when I'm hooked up directly to my> > > reservoirs. My sats indicate that I'm getting what I> > > need - not that mine don't fall often and hard, but> > > I'm convinced they would anyway whenever I move> > > around.> > >> > > ,> > > You ARE pretty! Thank you SO much for the lovely> > > travel photos. They are breathtaking!> > >> > > Lou,> > > I love leftovers. We had nice paper plates at> > > Thanksgiving and it was great to have the extra time> > > to spend together instead of cleaning up! Enjoy!!> > >> > > Sher,> > > Congratulations on the new great-grand babe. Lucky duck!> > >> > > Sandie,> > > I hate being in limbo, but it is dangerous to read reports> > > by ourselves and guess. I'd say you need a pulmonologist> > > right away. You'll get some answers there, no matter what> > > type of lung ailment you've got. Hang in there and keep us> > > posted!> > >> > > Hugs and blessings,> > > Gwynne IPF 7/04 listed for transplant 3/07 Texas> > >> >> >> >>

[Guest guest]

Bruce, Bruce, Bruce...when you had your VATS you said it was your "need to know" (among other reasons). I'm now feeling my own "need to know" rising up.

I've already had a second opinion. This is the third pulmonary-guy. First two said IPF for usual reasons...this Dr. said same thing. Two years down the road now I have had little progression so he is changing his Dx. (I would be much sicker and on O2 after two years if IPF is correct.)

Just sitting and waiting doesn't suit me much so I'm sitting and waiting to be inspired as to what I want to do next.

It goes without saying that I'm glad I'm stable. However, on the other hand I'm getting weary of rotating through his office without really any information beyond the Dx. of ILF, and/or treatment.

Ok now, watch for it, here it comes...I wonder if Viagra would make me a bigger hard a__ then I already am!

Sorry, sometimes I just gotta spit that stuff out or choke.

I've been monitored during sleep. Normal. I only mention PH because of Peggy's post and I don't know what it is. Thanks for your explanation.

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

[Guest guest]

Sher,

It is so hard to be cheerful when you are angry. I am angry because I have turned into someone else. I've lost my Queenship around here! I am becoming more and more helpless and I hate it. It is just something that I have to work through and you guys just have to love me and tolerate me and my grumpies. It is in the rule book. Hugs, Joyce D. (ps. I like "the grin and bearies")PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Joyce...I don't think you have the grumpies. I think you have the grin-and bearies.> I'm sure sorry you have so much on your plate. Wish I could help you carry it.> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Hi Judy...nice to hear from you and yes, you have interesting experiences.

I pray you will continue to gain strength and do enjoy the holidays.

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

[Guest guest]

Got the call back from my Drs nurse...my scans DO show I have PF. No significant changes since Dx. and now she says, "You may have misunderstood" re: the doubt he expressed at even having PF because I'm not sick enough.

Poop I say!

I'm scheduled for another PFT in Feb. so I will ask more direct questions then. I do think he is trying to be accommodating with me but I don't like the contradictions.

Poop I say.

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

[Guest guest]

Sher,

I was actually referring to my life in general ..... where I wish to be "in charge". I don't like being the weak one, the one being taken somewhere, the one being helped....I like being the doer.

I am going to have to do some pride swallowing and I choke easily.

I love you all for your understanding and support through my transition into the pityful role. Aaaargh!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Joyce...you will never lose your Queenship!That is based on who you are not what you have!> I enjoy so much the little nick names some have acquired!> I know what you mean by more and more helpless. I hate it too. I keep trying to see the lesson in all of this as I am a firm believer that all things happen for a reason.> We don't have to love ya, we want to love ya. We all have the same symptom: Grin and Bearies. The good ole' GG. Whether we like it or not!> Hugs to you Queen.> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

I get that too. I just hate this for you. Dig DEEP my friend all the strength you need is there. We will come out victorious.  I just hate it for you here at the holidays. I hate it for me here at the holidays. I hate it for everyone here that has to be "DONE FOR.."All I am leaning on is the love I know is there from my family and my air family. Hold on, "JOY COMES IN THE MORNING" Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Sher,I was actually referring to my life in general ..... where I wish to be "in charge".  I don't like being the weak one, the one being taken somewhere, the one being helped....I like being the doer. I am going to have to do some pride swallowing and I choke easily. I love you all for your understanding and support through my transition into the pityful role.  Aaaargh!Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997    BRONCHIECTASIS 2004   INDIANA 2 COR. 12:10   ....when I am weak, then I am strong.>> Joyce...you will never lose your Queenship!That is based on who you are not what you have!> I enjoy so much the little nick names some have acquired!> I know what you mean by more and more helpless. I hate it too. I keep trying to see the lesson in all of this as I am a firm believer that all things happen for a reason.> We don't have to love ya, we want to love ya. We all have the same symptom: Grin and Bearies. The good ole' GG. Whether we like it or not!> Hugs to you Queen.> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Yes Joyce, I knew what you meant. I remember when Ginger had some of these same feelings and yet she was such an example. And Vicky...and . You all are such examples of what we will all face.

I too don't like being "the weak one" or the "one being taken somewhere", the "one being helped". It happens now on a daily basis.

Accepting the things we cannot change is a humbling experience, isn't it.

I think we go through a period of mourning and grieving for who we were and are no more. That's not pitiful that's reality!

Now those who love you are given a chance to be the givers, the doers, the caretakers. I find it's harder to be on the receiving end than on the giving end.

You have a "queenly" grace about you Joyce and you will never stop "giving" yourself to others.

I'm sorry this transition is hard for you. Maybe if you stop fighting it so hard it will be an easier transition.

I love you.

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

[Guest guest]

Sher,

What an emotional wreck you must be from all this misunderstanding. Sorry that you have had to go through it all. So glad, though, that you are stabalized.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Got the call back from my Drs nurse...my scans DO show I have PF. No significant changes since Dx. and now she says, "You may have misunderstood" re: the doubt he expressed at even having PF because I'm not sick enough.> Poop I say!> I'm scheduled for another PFT in Feb. so I will ask more direct questions then. I do think he is trying to be accommodating with me but I don't like the contradictions.> Poop I say.> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Sher,

What an emotional wreck you must be from all this misunderstanding. Sorry that you have had to go through it all. So glad, though, that you are stabalized.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Got the call back from my Drs nurse...my scans DO show I have PF. No significant changes since Dx. and now she says, "You may have misunderstood" re: the doubt he expressed at even having PF because I'm not sick enough.> Poop I say!> I'm scheduled for another PFT in Feb. so I will ask more direct questions then. I do think he is trying to be accommodating with me but I don't like the contradictions.> Poop I say.> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Thanks Joyce. I'm feeling a bit out of control of my life. But the bigger picture hasn't actually changed. I DO have PF. What kind doesn't really matter. There is no cure, no treatment and prednisone is not my choice.

I'm working on accepting the things I cannot change and turning it all over to God. When I do this, I do stabilize.

I hate it that we have to work so damn hard to tolerate being so damn sick!

Poop I say.

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

[Guest guest]

Thanks Joyce. I'm feeling a bit out of control of my life. But the bigger picture hasn't actually changed. I DO have PF. What kind doesn't really matter. There is no cure, no treatment and prednisone is not my choice.

I'm working on accepting the things I cannot change and turning it all over to God. When I do this, I do stabilize.

I hate it that we have to work so damn hard to tolerate being so damn sick!

Poop I say.

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

[Guest guest]

Sher,

As an example of my new life....today I had a doctor appointment in the city, where I always have taken myself. Today a friend came to take me. My grandson loaded up all my giant tanks, etc. Then my friend had to help me get my stuff into the doc's building. I took a liquid tank, she took an E tank and a B tank in a bag. I think by the time we got home, she was as exhausted as was I. I'm still checking EBay for a pack mule. Also looking for a flatbed truck to haul all this stuff!

Ah, for the days when I could throw that BOA on my shoulder and go.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.

>> Yes Joyce, I knew what you meant. I remember when Ginger had some of these same feelings and yet she was such an example. And Vicky...and . You all are such examples of what we will all face. > I too don't like being "the weak one" or the "one being taken somewhere", the "one being helped". It happens now on a daily basis.> Accepting the things we cannot change is a humbling experience, isn't it.> I think we go through a period of mourning and grieving for who we were and are no more. That's not pitiful that's reality!> Now those who love you are given a chance to be the givers, the doers, the caretakers. I find it's harder to be on the receiving end than on the giving end.> You have a "queenly" grace about you Joyce and you will never stop "giving" yourself to others.> I'm sorry this transition is hard for you. Maybe if you stop fighting it so hard it will be an easier transition.> I love you.> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Joyce...I know hauling all the necessities is exhausting. And probably embarrassing as people do "look". Our lives are no longer private when we need to drag, carry or tote our air. Most people simply take air for granted!

My BOA is in the closet...waiting.

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

[Guest guest]

Joyce...I know hauling all the necessities is exhausting. And probably embarrassing as people do "look". Our lives are no longer private when we need to drag, carry or tote our air. Most people simply take air for granted!

My BOA is in the closet...waiting.

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

[Guest guest]

Sher: I think you are right back where you were....which is doing

pretty darn well. Yes, you have some form of PF. No, you don't know

what or care because you wouldn't change your decisions based on the

information. And yes, sometimes we do have to work hard. But its how

we recover that is important so we don't waste days. And, you're back

full steam it sounds to me and quickly. Good work.

>

> Thanks Joyce. I'm feeling a bit out of control of my life. But the

bigger picture hasn't actually changed. I DO have PF. What kind

doesn't really matter. There is no cure, no treatment and prednisone

is not my choice.

> I'm working on accepting the things I cannot change and turning it

all over to God. When I do this, I do stabilize.

> I hate it that we have to work so damn hard to tolerate being so

damn sick!

> Poop I say.

>

>

>

> Sher; ipf 3-06; OR.

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

>

[Guest guest]

Hi Sher,

One thing I have learned from dr's experiences is they don't acknowledge the fact that they might have made a mistake. Always go with your gut feeling when something is wrong!.

Irene

Raynaud's Disease 09/07

PF 03/07

Canada

---- Original Message ----

To: Breathe-Support

Sent: Fri, 7 Dec 2007 5:32 pm

Subject: Re: Re: Hi All

Got the call back from my Drs nurse...my scans DO show I have PF. No significant changes since Dx. and now she says, "You may have misunderstood" re: the doubt he expressed at even having PF because I'm not sick enough.

Poop I say!

I'm scheduled for another PFT in Feb. so I will ask more direct questions then. I do think he is trying to be accommodating with me but I don't like the contradictions.

Poop I say.

Sher; ipf 3-06; OR.

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

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

[Guest guest]



Irene...absolutely. I always say my head will lie to me but my gut? Never.

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

[Guest guest]

Welcome. We hate you have a reason to be here but love that you are

here given that reason. Feel free to say anything anytime and ask

anything. We are a group of friends with a common bond and you'll soon

find that there is nothing we won't discuss. So feel free to observe if

you're more comfortable doing that for now, but you're welcome to jump

right in. We hope to get to know you, not just about your disease and

how its affecting you but about the whole you. You will find the most

diverse group of people here who without the disease probably would

have never met even in cyberspace but you'll find more love here for

each other than anywhere you could go in the world.

Bruce Moreland 58 IPF 08/07 Dallas/Plano and Pneumonia for now but I'm

demanding it go away.

>

> New to the group. Interstitial pneumonitis w/double pneumonia 12/06.

>

[Guest guest]

> >

> > New to the group. Interstitial pneumonitis w/double pneumonia

12/06.

> >

>