Re: I was a member two years ago and have come back for support and strength from all of you courageous members

[Guest guest]

Hi Barb,

Welcome back! I do remember you though not the details of your situation. There are a bunch of us who have been here all along so you are among friends. Peggy, Sher, Jane are among those who have been here that you might remember.

I'm sorry to hear you are having such a difficult time. I know there isn't anything I can say that will change anything or make it all go away. What I can say is that we're all in this battle together. You may remember Joyce Dalton from when you were here the first time. She has since passed away but she remains an inspiration to many of us. She regarded this as a battle to be fought every day and survived 12 years with this blasted disease.

I'm glad you made the decision to come back and hope that you find the support and friendship that will make this journey easier for you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, March 20, 2009 9:49:01 PMSubject: I was a member two years ago and have come back for support and strength from all of you courageous members

Hi. My name is Barb and I was diagnosed about three years ago with IPF. Then several months later I got diagnosed with Adult Pulmonary Langerhan's Cell Histiocytosis. So, what do I have? I don't have a clue, but whatever it is it is killing me. I am on four liters of oxygen 24/7. I have developed heart problems and am on prednisone daily. I have difficulty walking a few feet without running out of breath. I just spent two months in three different hospitals and three weeks in a nursing home. I will be returning to the nursing home this coming Tuesday, because my 49 year old sister who works third shift found out it is hard to take care of someone in my shape, May God Bless her, at least she gave it a try. After one week, she is exhausted.

I have read your posts and can relate to the post that talked about pain. Yes, I know what they are talking about. It is pain, but not pain. It is very scary trying to catch your breath and can't and it kinda hurts. Anyway, it is a daily thing for me to feel this kind of pain.

I am gaining a lot of water weight and wondering if anyone else is blowing up like a balloon. Also, I have a lot of swelling of the feet and legs. My diabetes is out of control. I am up to three shots a day. Anybody else feel like their life has spun out of control?

I joined this group to offer support to other sufferer's of this lung disease and I also joined it to get much needed support. I feel like my life is at the end and it is frightening.

May God Bless You All,

Barb

Hi. My name is Barb and I am a 51 year old female who lives in southern Kentucky. I was a member two years ago. Now, I am back. I have had two diagnoses one is IPF and the other is Adult Pulmonary Langerhan's Cell Histiocytosis. Which one do I have? I don't have a clue. All I know is it is pretty apparent I am dying. Dummy me, quit smoking New Year's Eve of this year and about two weeks ago I smoked two cigarettes and had a big set back and am still trying to recover. I would give anything had I quit smoking when I was first diagnosed.

I am on four liters of oxygen, prednisone, warfarin, heart medication and so much more. Yep, now my lungs are affecting my heart. I can't walk but a few feet and I am totally out of breath. I just spent two months in the hospital, originally admitted for my breathing or lack of, congestive heart failure, then I somehow managed to cough so much that I tore open the vessels in my lower stomach and almost died of internal bleed. I had to have several pints of blood and plasma. At least that is what they tell me. When the dr.'s found the bleed, they put me on diladah (not sure of the spelling, but it is a strong pain killer given to me in my IV). So, most of what I know about the bleed is hearsay. After being in three different hospitals (transferred from one to the other), I spent twenty days in the nursing home doing rehabilitation, because my legs became so weak from lying

on my back that I had to get the strength back in them so I could walk. Now, I am living with my 49 year old sister who works third shift and who has decided after a week with me being here, that I am just to much to care for, so I am being readmitted to the nursing home this coming Tuesday. There I will be until I die.

I read your posts and can relate to the pain thing. That is all I know to call it is pain. It is pain , but it isn't pain. It is kinda smothering with the sense of pressure on my chest.

I am having tremendous difficulty with water weight. Is anyone else blowing up like a balloon? Also, I am having memory problems. I can't even remember what my screen name was when I was in this group last. Anyone else having memory problems?

I joined this group to get encouragement to go on, I also want to provide encouragement to others. So, please feel free to ask me questions or offer me advice.

May God Bless You All,

Barb

[Guest guest]

Hi, Beth:

Thank you for responding to my post so quickly. I remember Joyce. I will miss her. I also remember Peggy. My memory has gotten so bad, I don't know what my screen name was when I was in the group last. Must be lack of oxygen to the brain. But I am the one who went out and bought a grave and a headstone not long after I was diagnosed. Maybe that will help you all to remember me a little bit better. I was from Bronston, KY.

May God Be With You,

Barb

To: Breathe-Support Sent: Friday, March 20, 2009 10:10:31 PMSubject: Re: I was a member two years ago and have come back for support and strength from all of you courageous members

Hi Barb,

Welcome back! I do remember you though not the details of your situation. There are a bunch of us who have been here all along so you are among friends. Peggy, Sher, Jane are among those who have been here that you might remember.

I'm sorry to hear you are having such a difficult time. I know there isn't anything I can say that will change anything or make it all go away. What I can say is that we're all in this battle together. You may remember Joyce Dalton from when you were here the first time. She has since passed away but she remains an inspiration to many of us. She regarded this as a battle to be fought every day and survived 12 years with this blasted disease.

I'm glad you made the decision to come back and hope that you find the support and friendship that will make this journey easier for you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Barbara Soice <barbiejo1957@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Friday, March 20, 2009 9:49:01 PMSubject: I was a member two years ago and have come back for support and strength from all of you courageous members

Hi. My name is Barb and I was diagnosed about three years ago with IPF. Then several months later I got diagnosed with Adult Pulmonary Langerhan's Cell Histiocytosis. So, what do I have? I don't have a clue, but whatever it is it is killing me. I am on four liters of oxygen 24/7. I have developed heart problems and am on prednisone daily. I have difficulty walking a few feet without running out of breath. I just spent two months in three different hospitals and three weeks in a nursing home. I will be returning to the nursing home this coming Tuesday, because my 49 year old sister who works third shift found out it is hard to take care of someone in my shape, May God Bless her, at least she gave it a try. After one week, she is exhausted.

I have read your posts and can relate to the post that talked about pain. Yes, I know what they are talking about. It is pain, but not pain. It is very scary trying to catch your breath and can't and it kinda hurts. Anyway, it is a daily thing for me to feel this kind of pain.

I am gaining a lot of water weight and wondering if anyone else is blowing up like a balloon. Also, I have a lot of swelling of the feet and legs. My diabetes is out of control. I am up to three shots a day. Anybody else feel like their life has spun out of control?

I joined this group to offer support to other sufferer's of this lung disease and I also joined it to get much needed support. I feel like my life is at the end and it is frightening.

May God Bless You All,

Barb

Hi. My name is Barb and I am a 51 year old female who lives in southern Kentucky. I was a member two years ago. Now, I am back. I have had two diagnoses one is IPF and the other is Adult Pulmonary Langerhan's Cell Histiocytosis. Which one do I have? I don't have a clue. All I know is it is pretty apparent I am dying. Dummy me, quit smoking New Year's Eve of this year and about two weeks ago I smoked two cigarettes and had a big set back and am still trying to recover. I would give anything had I quit smoking when I was first diagnosed.

I am on four liters of oxygen, prednisone, warfarin, heart medication and so much more. Yep, now my lungs are affecting my heart. I can't walk but a few feet and I am totally out of breath. I just spent two months in the hospital, originally admitted for my breathing or lack of, congestive heart failure, then I somehow managed to cough so much that I tore open the vessels in my lower stomach and almost died of internal bleed. I had to have several pints of blood and plasma. At least that is what they tell me. When the dr.'s found the bleed, they put me on diladah (not sure of the spelling, but it is a strong pain killer given to me in my IV). So, most of what I know about the bleed is hearsay. After being in three different hospitals (transferred from one to the other), I spent twenty days in the nursing home doing rehabilitation, because my legs became so weak from lying

on my back that I had to get the strength back in them so I could walk. Now, I am living with my 49 year old sister who works third shift and who has decided after a week with me being here, that I am just to much to care for, so I am being readmitted to the nursing home this coming Tuesday. There I will be until I die.

I read your posts and can relate to the pain thing. That is all I know to call it is pain. It is pain , but it isn't pain. It is kinda smothering with the sense of pressure on my chest.

I am having tremendous difficulty with water weight. Is anyone else blowing up like a balloon? Also, I am having memory problems. I can't even remember what my screen name was when I was in this group last. Anyone else having memory problems?

I joined this group to get encouragement to go on, I also want to provide encouragement to others. So, please feel free to ask me questions or offer me advice.

May God Bless You All,

Barb

[Guest guest]

Hi Barb, I do remember you. I am glad you came back for comfort and to help us. You have certainly been through the mill a few times. I am so sorry. If I remember correctly you signed off Barb from Ky. Had a really cute dog..LOL am I even close?? Anyhow welcome back and Take care of you. 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."  Hi.  My name is Barb and I was diagnosed about three years ago with IPF.  Then several months later I got diagnosed with Adult Pulmonary Langerhan's Cell Histiocytosis.  So, what do I have?  I don't have a clue, but whatever it is it is killing me.  I am on four liters of oxygen 24/7.  I have developed heart problems and am on prednisone daily.  I have difficulty walking a few feet without running out of breath.  I just spent two months in three different hospitals and three weeks in a nursing home.  I will be returning to the nursing home this coming Tuesday, because my 49 year old sister who works third shift found out it is hard to take care of someone in my shape,  May God Bless her, at least she gave it a try.  After one week, she is exhausted.  I have read your posts and can relate to the post that talked about pain.  Yes, I know what they are talking about.   It is pain, but not pain.   It is very scary trying to catch your breath and can't and it kinda hurts.  Anyway, it is a daily thing for me to feel this kind of pain.    I am gaining a lot of water weight and wondering if anyone else is blowing up like a balloon.  Also, I have a  lot of swelling of the feet and legs.   My diabetes is out of control.  I am up to three shots a day.  Anybody else feel like their life has spun out of control? I joined this group to offer support to other sufferer's of this lung disease and I also joined it to get much needed support.  I feel like my life is at the end and it is frightening. May God Bless You All, Barb                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 Hi. My name is Barb and I am a 51 year old female who lives in southern Kentucky.  I was a member two years ago.   Now, I am back.   I have had two diagnoses one is IPF and the other is Adult Pulmonary Langerhan's Cell Histiocytosis.  Which one do I have?  I don't have a clue.  All I know is it is pretty apparent I am dying.  Dummy me, quit smoking New Year's Eve of this year and about two weeks ago I smoked two cigarettes and had a big set back and am still trying to recover.  I would give anything had I quit smoking when I was first diagnosed.  I am on four liters of oxygen, prednisone, warfarin, heart medication and so much more.  Yep, now my lungs are affecting my heart.   I can't walk but a few feet and I am totally out of breath.  I just spent two months in the hospital, originally admitted for my breathing or lack of, congestive heart failure, then I somehow managed to cough so much that I tore open the vessels in my lower stomach and almost died of internal bleed.  I had to have several pints of blood and plasma.  At least that is what they tell me.  When the dr.'s found the bleed, they put me on diladah (not sure of the spelling, but it is a strong pain killer given to me in my IV).    So, most of what I know about the bleed is hearsay.   After being in three different hospitals (transferred from one to the other), I spent twenty days in the nursing home doing rehabilitation, because my legs became so weak from lying on my back that I had to get the strength back in them so I could walk.  Now, I am living with my 49 year old sister who works third shift and who has decided after a  week with me being here, that I am just to much to care for, so I am being readmitted to the nursing home this coming Tuesday.  There I will be until I die. I read your posts and can relate to the pain thing.   That is all I know to call it is pain.  It is pain , but it isn't pain.  It is kinda smothering with the sense of pressure on my chest. I am having tremendous difficulty with water weight.  Is anyone else blowing up like a balloon?  Also, I am having memory problems.  I can't even remember what my screen name was when I was in this group last.  Anyone else having memory problems?  I joined this group to get encouragement to go on, I also want to provide encouragement to others.  So, please feel free to ask me questions or offer me advice. May God Bless You All, Barb                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              

[Guest guest]

HI Peggy:

Yeah, I did sign off with Barb from KY. Thank you for jogging my memory. And your right about the dog.

How have you been? How is it going with the lung diseaase. Have you advanced or are you staying just about the same? Really don't know what to say, except I was happy to receive your post.

May God Bless You,

Barb

To: Breathe-Support Sent: Friday, March 20, 2009 10:52:13 PMSubject: Re: I was a member two years ago and have come back for support and strength from all of you courageous membersHi Barb, I do remember you. I am glad you came back for comfort and to help us.

You have certainly been through the mill a few times. I am so sorry.

If I remember correctly you signed off Barb from Ky. Had a really cute dog..

LOL am I even close??

Anyhow welcome back and Take care of you.

Love & Prayers, Peggy

Florida, 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."

Hi. My name is Barb and I was diagnosed about three years ago with IPF. Then several months later I got diagnosed with Adult Pulmonary Langerhan's Cell Histiocytosis. So, what do I have? I don't have a clue, but whatever it is it is killing me. I am on four liters of oxygen 24/7. I have developed heart problems and am on prednisone daily. I have difficulty walking a few feet without running out of breath. I just spent two months in three different hospitals and three weeks in a nursing home. I will be returning to the nursing home this coming Tuesday, because my 49 year old sister who works third shift found out it is hard to take care of someone in my shape, May God Bless her, at least she gave it a try. After one week, she is exhausted.

I have read your posts and can relate to the post that talked about pain. Yes, I know what they are talking about. It is pain, but not pain. It is very scary trying to catch your breath and can't and it kinda hurts. Anyway, it is a daily thing for me to feel this kind of pain.

I am gaining a lot of water weight and wondering if anyone else is blowing up like a balloon. Also, I have a lot of swelling of the feet and legs. My diabetes is out of control. I am up to three shots a day. Anybody else feel like their life has spun out of control?

I joined this group to offer support to other sufferer's of this lung disease and I also joined it to get much needed support. I feel like my life is at the end and it is frightening.

May God Bless You All,

Barb

Hi. My name is Barb and I am a 51 year old female who lives in southern Kentucky. I was a member two years ago. Now, I am back. I have had two diagnoses one is IPF and the other is Adult Pulmonary Langerhan's Cell Histiocytosis. Which one do I have? I don't have a clue. All I know is it is pretty apparent I am dying. Dummy me, quit smoking New Year's Eve of this year and about two weeks ago I smoked two cigarettes and had a big set back and am still trying to recover. I would give anything had I quit smoking when I was first diagnosed.

I am on four liters of oxygen, prednisone, warfarin, heart medication and so much more. Yep, now my lungs are affecting my heart. I can't walk but a few feet and I am totally out of breath. I just spent two months in the hospital, originally admitted for my breathing or lack of, congestive heart failure, then I somehow managed to cough so much that I tore open the vessels in my lower stomach and almost died of internal bleed. I had to have several pints of blood and plasma. At least that is what they tell me. When the dr.'s found the bleed, they put me on diladah (not sure of the spelling, but it is a strong pain killer given to me in my IV). So, most of what I know about the bleed is hearsay. After being in three different hospitals (transferred from one to the other), I spent twenty days in the nursing home doing rehabilitation, because my legs

became so weak from lying on my back that I had to get the strength back in them so I could walk. Now, I am living with my 49 year old sister who works third shift and who has decided after a week with me being here, that I am just to much to care for, so I am being readmitted to the nursing home this coming Tuesday. There I will be until I die.

I read your posts and can relate to the pain thing. That is all I know to call it is pain. It is pain , but it isn't pain. It is kinda smothering with the sense of pressure on my chest.

I am having tremendous difficulty with water weight. Is anyone else blowing up like a balloon? Also, I am having memory problems. I can't even remember what my screen name was when I was in this group last. Anyone else having memory problems?

I joined this group to get encouragement to go on, I also want to provide encouragement to others. So, please feel free to ask me questions or offer me advice.

May God Bless You All,

Barb

[Guest guest]

Barbara...I can only repeat all that MB wrote to you...

I too remember your name but just not the details...

I know your current situation is certainly different. I'm so sorry.

You say you're 'returning to the nursing home'. Is your sister on third shift where you will be?

Yes, God Bless her, she did try.

I'm so sorry your life is more difficult Barbara. I will add you to my .

Did you check hospice out? Could they perhaps help you stay at home?

Tell me again where you live.

Stay in touch

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

I was a member two years ago and have come back for support and strength from all of you courageous members

Hi. My name is Barb and I was diagnosed about three years ago with IPF. Then several months later I got diagnosed with Adult Pulmonary Langerhan's Cell Histiocytosis. So, what do I have? I don't have a clue, but whatever it is it is killing me. I am on four liters of oxygen 24/7. I have developed heart problems and am on prednisone daily. I have difficulty walking a few feet without running out of breath. I just spent two months in three different hospitals and three weeks in a nursing home. I will be returning to the nursing home this coming Tuesday, because my 49 year old sister who works third shift found out it is hard to take care of someone in my shape, May God Bless her, at least she gave it a try. After one week, she is exhausted.

I have read your posts and can relate to the post that talked about pain. Yes, I know what they are talking about. It is pain, but not pain. It is very scary trying to catch your breath and can't and it kinda hurts. Anyway, it is a daily thing for me to feel this kind of pain.

I am gaining a lot of water weight and wondering if anyone else is blowing up like a balloon. Also, I have a lot of swelling of the feet and legs. My diabetes is out of control. I am up to three shots a day. Anybody else feel like their life has spun out of control?

I joined this group to offer support to other sufferer's of this lung disease and I also joined it to get much needed support. I feel like my life is at the end and it is frightening.

May God Bless You All,

Barb

Hi. My name is Barb and I am a 51 year old female who lives in southern Kentucky. I was a member two years ago. Now, I am back. I have had two diagnoses one is IPF and the other is Adult Pulmonary Langerhan's Cell Histiocytosis. Which one do I have? I don't have a clue. All I know is it is pretty apparent I am dying. Dummy me, quit smoking New Year's Eve of this year and about two weeks ago I smoked two cigarettes and had a big set back and am still trying to recover. I would give anything had I quit smoking when I was first diagnosed.

I am on four liters of oxygen, prednisone, warfarin, heart medication and so much more. Yep, now my lungs are affecting my heart. I can't walk but a few feet and I am totally out of breath. I just spent two months in the hospital, originally admitted for my breathing or lack of, congestive heart failure, then I somehow managed to cough so much that I tore open the vessels in my lower stomach and almost died of internal bleed. I had to have several pints of blood and plasma. At least that is what they tell me. When the dr.'s found the bleed, they put me on diladah (not sure of the spelling, but it is a strong pain killer given to me in my IV). So, most of what I know about the bleed is hearsay. After being in three different hospitals (transferred from one to the other), I spent twenty days in the nursing home doing rehabilitation, because my legs became so weak from lying on my back that I had to get the strength back in them so I could walk. Now, I am living with my 49 year old sister who works third shift and who has decided after a week with me being here, that I am just to much to care for, so I am being readmitted to the nursing home this coming Tuesday. There I will be until I die.

I read your posts and can relate to the pain thing. That is all I know to call it is pain. It is pain , but it isn't pain. It is kinda smothering with the sense of pressure on my chest.

I am having tremendous difficulty with water weight. Is anyone else blowing up like a balloon? Also, I am having memory problems. I can't even remember what my screen name was when I was in this group last. Anyone else having memory problems?

I joined this group to get encouragement to go on, I also want to provide encouragement to others. So, please feel free to ask me questions or offer me advice.

May God Bless You All,

Barb