Re: Pulm. Visit

[Guest guest]

Dear : No one has the right to expect you to accept this at all much less on their time line. It is a natural desire to want to live and to be healthy and each person comes to acceptance of these changes in their life in their own way and in their own time frame. Remember too, that doctors are frequently wrong about how much time a person has left. I have taken care of many hospice patients that were told they had a few weeks or months to live and lived for years. It was all in the attitude. Those that believed they would not live beyond what the doctor said, often didnt. But those that said, "Forget the doctor, I am going to show him!", often lived way beyond the predictions. It is hard to put aside a doctors prediction after all we view them as educated. However, they go by statistics and by previous experiences of a few patients. We are all different and respond differently. I know I am one

of those persons that dwells on the negative and that may shorten my life. However, I am working at finding fun things to read and do and seeking laughter for I know that a change in mood from depression to laughter can often prolong ones life and improve ones health. I have read to some degree about the affects of laughter on the body and it is amazing. Person who were dying of cancer and had been through all kinds of therapy to no avail, sought laughter and joyous pursuits to the outcome of their cancer going into remission. Their doctors were astounded and bewildered. Now if a doctor can be astounded and bewildered by such things, then how much confidence should we put in their predictions. They do not know everything and actually in the larger scheme of things, know very little. Please do not give up seeking the joyous aspects of life. At the very least even if your life did not get extended, you will have spent it in

much happier ways, which makes it worth the effort. My thoughts are with you and I continually say prayers. Hugs, Carolyn lentz wrote: To all of you... It is hard to say what I am feeling. You guys have been so good to reply to me. To understand, not judge. Sometimes I think I am just a whiny person, but in my heart I know I am not. I AM scared though..wonder everyday how I will be today. Will I be able to get dressed? Feed the dog? Things that just take too much breath. I realize I am worse each day but it is hard to hear. My Pulmo is supposed to be the best Dr. in

Phoenix. The first time he told me that there was nothing else he could do...he looked so sad. But now...he expects me to accept things. And I will...but I am not ready. Intellilectually I know but emotionally, I am not ready. I agree with the post about feeling lonely. It is hard. People do care, it is just that they have their own lives and I am sure they get tired of thinking about me. My o2 supplier is Apria and they are coming on Wed to give me another portable tank. Whatever one Cigna will pay for. My daughter is coming to visit on Thanksgiving and maybe that will help my blues. But anyway, there is no way I can tell you all how much I appreciate you guys. I wish there was something I could do for you. Hey, I am a Social Worker, maybe I could help with disability etc. IPF 01 PH 06 Re: Pulm. Visit , I am so saddened, angry and exasperated by how that dr had the audacity to talk to you. They are so clueless and cold. They just don't get it. How dare he tell you to give up, how dare he not get on that phone and fight for what ever size o2 you need instead of handing you a line of crud. That son of a bum is turning his impotence around and putting it on you. If I were a different kind of person...that guy brings some really God-less thoughts to my mind. Please don't give up , don't buy into his bull puckie. The things

he said have nothing to do with you, they were about him and his lack of humanness, his ineptness and lack of integrity. He dared speak to the things that are known by you and God alone. You are worth fighting for and if he were a real Dr, that is just what he would be doing. Pleeeeeze continue to be yourself, not that butt heads definition of a "sick" person. You have every right to be sick and tired, not him. You have every right to define who and what you are. Sick and tired may be what you feel, but that is not who you are. Peace, love and much respect, LynnA -- In Breathe-Support , "tuliparizona" wrote:>> I went to my palm. yesterday. Sats were 82,

even though I use > oxygen continuously. Am having a real difficulty now with getting > in and out of chairs, doing simple things in the house. I just get > so out of breath. The Dr. said the increased SOB is because of my > pulmonary hypertension, which is worsening. There is a new med. for > it but Cigna does not approve it and therefore I have to pay > privately. I am going to do that for a while. But I wonder what is > the use? My dr. told me yesterday that he knows of nothing else > that can be done and that I need to start accepting things. He said > that with a terminal illness, I should expect to get worse instead > of hoping. He said the time for hope is over now and that maybe I > need to se! e a therapist to help me through this. He then wanted to > write me a script for Zoloft to "help". He did say that I would > probably need to think about going into the hospital again

soon, to > drain some of the fluid out of me. I have already done that but it > just comes back. I read that with the hypertension, that your legs > can get very large and heavy. And that is what is happening. Also > having a problem with my portable oxygen. Since I am now on liquid > oxygen, the tank I have to carry is so heavy that it takes all my > energy to carry it. Evidently the office called the supplier and I > just got a call from them stating that Cigna does not authorize the > really small one. I am calling Cigna. I know I sound depressed in > this post. I know I am discouraged. Really really tired of > everything. Tired of the tube in my nose, tired of calculating what > I can do because of limi! ted breath, tired of sitting. Just tired. > Tired of being told that I have lived longer than most people with > my disease.> I dont know how to be a sick person.>

Thanks for listening.> >

[Guest guest]

Dear Beth: I would speak out about it to them. If the last person they did this too had spoken out I doubt you would have had to deal with it. There is no excuse for talking about someone in front of them. I would say, "I can hear you, if you have a question I would be happy to answer it" or "I am not deaf just because I need oxygen". Or something like that. Said with a smile it goes down better, but only if they deserve the benefit of the doubt. Those being mean deserve to be told off for thats all they understand. You could always turn it back on them by saying (to the air) "Boy some people like to talk as if the person they are talking about is deaf, how weird". LOL Carolyn Beth wrote: Lynn This made me chuckle 'cause I know how hard I work to get people to look me in the eye. It's been a few months now that I'm out and about locally with the O2 and alot of the people I see regularly have gradually become more comfortable and will now look me in the eye, greet me, ask how I'm doing etc. But there are others, God help me they really tick me off sometimes. Standing 2 feet away from me and talking about me as though I'm not there, as though using O2 makes me deaf. That's what gets my irish up.... so I smile and correct whatever nonsensical crap they're dishing out. I try to do it nicely of course but I refuse to just let it go. I feel like if I hear something that's just plain ignorant and wrong I have a

responsibility to point it out. It may or may not do any good but I won't let it go or just walk away and pretend I didn't hear. God bless us!! Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good. Re: Pulm. Visit> > , I am so saddened, angry and exasperated by how that dr had the audacity to talk to you. They are so clueless and cold. They just don't get it. How dare he tell you to give up, how dare he not get on that phone and fight for what ever size o2 you need instead of handing you a line of crud. > That son of a bum is

turning his impotence around and putting it on you. If I were a different kind of person...that guy brings some really God-less thoughts to my mind. Please don't give up , don't buy into his bull puckie. The things he said have nothing to do with you, they were about him and his lack of humanness, his ineptness and lack of integrity. He dared speak to the things that are known by you and God alone. You are worth fighting for and if he were a real Dr, that is just what he would be doing.> Pleeeeeze continue to be yourself, not that butt heads definition of a "sick" person. You have every right to be sick and tired, not him. You have every right to define who and what you are. Sick and tired may be what you feel, but that is not who you are. > Peace, love and much respect, LynnA > -- In Breathe-Support@ yahoogroups. com, "tuliparizona" nctulip@ wrote:> >> > I went to my palm. yesterday. Sats were 82, even though I use >

> oxygen continuously. Am having a real difficulty now with getting > > in and out of chairs, doing simple things in the house. I just get > > so out of breath. The Dr. said the increased SOB is because of my > > pulmonary hypertension, which is worsening. There is a new med. for > > it but Cigna does not approve it and therefore I have to pay > > privately. I am going to do that for a while. But I wonder what is > > the use? My dr. told me yesterday that he knows of nothing else > > that can be done and that I need to start accepting things. He said > > that with a terminal illness, I should expect to get worse instead > > of hoping. He said the time for hope is over now and that maybe I > > need to see a therapist to help me through this. He then wanted to > > write me a script for Zoloft to "help". He did say that I would > > probably need to think

about going into the hospital again soon, to > > drain some of the fluid out of me. I have already done that but it > > just comes back. I read that with the hypertension, that your legs > > can get very large and heavy. And that is what is happening. Also > > having a problem with my portable oxygen. Since I am now on liquid > > oxygen, the tank I have to carry is so heavy that it takes all my > > energy to carry it. Evidently the office called the supplier and I > > just got a call from them stating that Cigna does not authorize the > > really small one. I am calling Cigna. I know I sound depressed in > > this post. I know I am discouraged. Really really tired of > > everything. Tired of the tube in my nose, tired of calculating what > > I can do because of limited breath, tired of sitting. Just tired. > > Tired of being told that I have lived longer

than most people with > > my disease.> > I dont know how to be a sick person.> > Thanks for listening.> > > >>

[Guest guest]

Beth

very well said, thanks

Joyce ipf 3/06

> >

> > I went to my palm. yesterday. Sats were 82, even though I use

> > oxygen continuously. Am having a real difficulty now with getting

> > in and out of chairs, doing simple things in the house. I just

get

> > so out of breath. The Dr. said the increased SOB is because of my

> > pulmonary hypertension, which is worsening. There is a new med.

for

> > it but Cigna does not approve it and therefore I have to pay

> > privately. I am going to do that for a while. But I wonder what

is

> > the use? My dr. told me yesterday that he knows of nothing else

> > that can be done and that I need to start accepting things. He

said

> > that with a terminal illness, I should expect to get worse

instead

> > of hoping. He said the time for hope is over now and that maybe I

> > need to se! e a therapist to help me through this. He then wanted

to

> > write me a script for Zoloft to " help " . He did say that I would

> > probably need to think about going into the hospital again soon,

to

> > drain some of the fluid out of me. I have already done that but

it

> > just comes back. I read that with the hypertension, that your

legs

> > can get very large and heavy. And that is what is happening. Also

> > having a problem with my portable oxygen. Since I am now on

liquid

> > oxygen, the tank I have to carry is so heavy that it takes all my

> > energy to carry it. Evidently the office called the supplier and

I

> > just got a call from them stating that Cigna does not authorize

the

> > really small one. I am calling Cigna. I know I sound depressed in

> > this post. I know I am discouraged. Really really tired of

> > everything. Tired of the tube in my nose, tired of calculating

what

> > I can do because of limi! ted breath, tired of sitting. Just

tired.

> > Tired of being told that I have lived longer than most people

with

> > my disease.

> > I dont know how to be a sick person.

> > Thanks for listening.

> >

> >

>

[Guest guest]

Beth said; Standing 2 feet away from me and talking about me as though I'm not there, as though using O2 makes me deaf.

LOL! That is so true. Good for you Beth, keep educating!!! I sometimes amazes me - the things people say that could have just stayed in their brain. Things they do, say that I could have gone a lifetime with out being party to!!! A few weeks ago a woman joined me ( in full o2 regalia) in the dining room of a friends home, she sat down, pulled out a cig, lite it and procceded to ask me if I'm "making sure to meditate in order to get well"? Now if thats not a candidate for the "Darwin" awards - I do not know who is.

> > >> > > I went to my palm. yesterday. Sats were 82, even though I use > > > oxygen continuously. Am having a real difficulty now with getting > > > in and out of chairs, doing simple things in the house. I just get > > > so out of breath. The Dr. said the increased SOB is because of my > > > pulmonary hypertension, which is worsening. There is a new med. for > > > it but Cigna does not approve it and therefore I have to pay > > > privately. I am going to do that for a while. But I wonder what is > > > the use? My dr. told me yesterday that he knows of nothing else > > > that can be done and that I need to start accepting things. He said > > > that with a terminal illness, I should expect to get worse instead > > > of hoping. He said the time for hope is over now and that maybe I > > > need to see a therapist to help me through this. He then wanted to > > > write me a script for Zoloft to "help". He did say that I would > > > probably need to think about going into the hospital again soon, to > > > drain some of the fluid out of me. I have already done that but it > > > just comes back. I read that with the hypertension, that your legs > > > can get very large and heavy. And that is what is happening. Also > > > having a problem with my portable oxygen. Since I am now on liquid > > > oxygen, the tank I have to carry is so heavy that it takes all my > > > energy to carry it. Evidently the office called the supplier and I > > > just got a call from them stating that Cigna does not authorize the > > > really small one. I am calling Cigna. I know I sound depressed in > > > this post. I know I am discouraged. Really really tired of > > > everything. Tired of the tube in my nose, tired of calculating what > > > I can do because of limited breath, tired of sitting. Just tired. > > > Tired of being told that I have lived longer than most people with > > > my disease.> > > I dont know how to be a sick person.> > > Thanks for listening.> > > > > >> >>

[Guest guest]

A few weeks ago a woman joined me ( in full> o2 regalia) in the dining room of a friends home, she sat down, pulled > out a cig, lite it and procceded to ask me if I'm "making sure to> meditate in order to get well"? Now if thats not a candidate for the> "Darwin" awards - I do not know who is. [=;] > > > >> > > > I went to my palm. yesterday. Sats were 82, even though I use> > > > oxygen continuously. Am having a real difficulty now with getting> > > > in and out of chairs, doing simple things in the house. I just get> > > > so out of breath. The Dr. said the increased SOB is because of my> > > > pulmonary hypertension, which is worsening. There is a new med.> for> > > > it but Cigna does not approve it and therefore I have to pay> > > > privately. I am going to do that for a while. But I wonder what is> > > > the use? My dr. told me yesterday that he knows of nothing else> > > > that can be done and that I need to start accepting things. He> said> > > > that with a terminal illness, I should expect to get worse instead> > > > of hoping. He said the time for hope is over now and that maybe I> > > > need to see a therapist to help me through this. He then wanted to> > > > write me a script for Zoloft to "help". He did say that I would> > > > probably need to think about going into the hospital again soon,> to> > > > drain some of the fluid out of me. I have already done that but it> > > > just comes back. I read that with the hypertension, that your legs> > > > can get very large and heavy. And that is what is happening. Also> > > > having a problem with my portable oxygen. Since I am now on liquid> > > > oxygen, the tank I have to carry is so heavy that it takes all my> > > > energy to carry it. Evidently the office called the supplier and I> > > > just got a call from them stating that Cigna does not authorize> the> > > > really small one. I am calling Cigna. I know I sound depressed in> > > > this post. I know I am discouraged. Really really tired of> > > > everything. Tired of the tube in my nose, tired of calculating> what> > > > I can do because of limited breath, tired of sitting. Just tired.> > > > Tired of being told that I have lived longer than most people with> > > > my disease.> > > > I dont know how to be a sick person.> > > > Thanks for listening.> > > > > > > >> > >> >>

[Guest guest]

Don't ya just love it when people do stuff like that? I know some one just like that. On O2 and still puffin every chance she gets and wants to tell the rest of us on it how to behave.> > > > >> > > > > I went to my palm. yesterday. Sats were 82, even though I use> > > > > oxygen continuously. Am having a real difficulty now with> getting> > > > > in and out of chairs, doing simple things in the house. I just> get> > > > > so out of breath. The Dr. said the increased SOB is because of> my> > > > > pulmonary hypertension, which is worsening. There is a new med.> > for> > > > > it but Cigna does not approve it and therefore I have to pay> > > > > privately. I am going to do that for a while. But I wonder what> is> > > > > the use? My dr. told me yesterday that he knows of nothing else> > > > > that can be done and that I need to start accepting things. He> > said> > > > > that with a terminal illness, I should expect to get worse> instead> > > > > of hoping. He said the time for hope is over now and that maybe> I> > > > > need to see a therapist to help me through this. He then wanted> to> > > > > write me a script for Zoloft to "help". He did say that I would> > > > > probably need to think about going into the hospital again soon,> > to> > > > > drain some of the fluid out of me. I have already done that but> it> > > > > just comes back. I read that with the hypertension, that your> legs> > > > > can get very large and heavy. And that is what is happening.> Also> > > > > having a problem with my portable oxygen. Since I am now on> liquid> > > > > oxygen, the tank I have to carry is so heavy that it takes all> my> > > > > energy to carry it. Evidently the office called the supplier and> I> > > > > just got a call from them stating that Cigna does not authorize> > the> > > > > really small one. I am calling Cigna. I know I sound depressed> in> > > > > this post. I know I am discouraged. Really really tired of> > > > > everything. Tired of the tube in my nose, tired of calculating> > what> > > > > I can do because of limited breath, tired of sitting. Just> tired.> > > > > Tired of being told that I have lived longer than most people> with> > > > > my disease.> > > > > I dont know how to be a sick person.> > > > > Thanks for listening.> > > > > > > > > >> > > >> > >> >> > > > > > > > <http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb114_Z\> SXXXXXX37 & utm_id=7922>>

[Guest guest]

Lordy, I hope y'all don't get blown up around smokers..LOL---not funny

Love and Prayers, Peggy 9/04 ipf

Don't ya just love it when people do stuff like that? I know some one just like that. On O2 and still puffin every chance she gets and wants to tell the rest of us on it how to behave.

> >

> >

> > Beth said; Standing 2 feet away from me and talking about me as