Re: How People Respond to Us

[Guest guest]

ok, I think that was 7 minutes too long with that jerk (I mean psychiatrist).

I get weird responses from people too. Like I had one friend tell me I was obsessing about it too much and making it into a monster. The on another day she asked how I was doing and I said my breathing was getting worse and she said, do you think that maybe it’s just in your head? I'm like, NO, I have a tool (oximeter) that measures it for me. I've decided not to share with her anymore.

Then there are those who seem to look right through you and don't know what to say, so they don't talk to you at all. Like we are the walking dead and it might be contagious if they talk to us!

Are we having fun yet? C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Sun, November 22, 2009 4:07:24 PMSubject: Re: Scared & Fatigued

Thank you, Sher! Also, People don't want you to tell them how things really are....they want you to be upbeat and talk about how good you are feeling and things like that. They don't want to know that you get tired easily and can't do what you used to do. Everything has to be masked. I have a psychiatrist I see for 7 minutes every 3 months and when I had first been diagnosed with IPF and found out that the average life span was about 3-4 years, I was a little down but not significantly but I told him what the dx was and the prognosis and he jumped all over me for being "negative".Now I wasn't complaining just stating the "facts that were given me".He told me to be POSITIVE because they could find a cure or some magnificent medicine and everything will be all right. Just stating the facts that were given me was seen as pessimism. I think he is an asshole but alas he is the only shrink around here and it took 6 months for me to get an appointment. I

timed it...he sees me for 7 minutes and gives my meds...I also have a counselor who is nothing like this jerk but everyone wants you to be so positive...it' s like they want to disregard any facts....Joyce R

In a message dated 11/22/2009 11:55:57 A.M. US Mountain Standard Tim, bofus6 (AT) verizon (DOT) net writes:

 JoyceR...... I'm certainly relieved to read you escaped what could have been a raging fire! That experience is a real eye opener isn't it.

I've written before that when I stopped working I realized my self esteem and self worth were badly damaged. I thought (then) that if I didn't 'do' anything I wasn't 'worth' anything. It took me a couple of years to work my way through all of that as I had to accept the fact that I simply cannot do what I once did. I know what you mean....

I'm sure that hurts to feel 'forgotten' by your peers after so many years working together. I would feel hurt too Joyce. However, you have a new group of folks who won't forget you!

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Scared & Fatigued

Beth that answer you gave Joyce about fatigue hit the nail on the head for me. I get so darn fustrated when I cant do things that I did 6 months or a year ago. I find myself wanting to nap in the middle of the afternoon and thats hard to do when your working. I keep getting mad at myself cause I cant do this or that and that really puts me in a bummer mood. I cant even walk my dog like I used to. My sats are in the mid to low 90,s most of the time. Any incline does me in. It is hard to accept this new "normal". Not on O2 yet and I hope not for awhile. For some reason going through a rough time right now. Well thats enough. Merf dx05 62

[Guest guest]

and i get some people who think i spend too much time in this support group learning all of the bad stuff

i tell them that we share good stuff too

and that it is important to be informed

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: How People Respond to UsTo: Breathe-Support Date: Sunday, November 22, 2009, 10:32 PM

ok, I think that was 7 minutes too long with that jerk (I mean psychiatrist) .

I get weird responses from people too. Like I had one friend tell me I was obsessing about it too much and making it into a monster. The on another day she asked how I was doing and I said my breathing was getting worse and she said, do you think that maybe it’s just in your head? I'm like, NO, I have a tool (oximeter) that measures it for me. I've decided not to share with her anymore.

Then there are those who seem to look right through you and don't know what to say, so they don't talk to you at all. Like we are the walking dead and it might be contagious if they talk to us!

Are we having fun yet? C_53_Familial IPF_5/09Washington

From: "BlueLiddy (AT) aol (DOT) com" <BlueLiddy (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, November 22, 2009 4:07:24 PMSubject: Re: Scared & Fatigued

Thank you, Sher! Also, People don't want you to tell them how things really are....they want you to be upbeat and talk about how good you are feeling and things like that. They don't want to know that you get tired easily and can't do what you used to do. Everything has to be masked. I have a psychiatrist I see for 7 minutes every 3 months and when I had first been diagnosed with IPF and found out that the average life span was about 3-4 years, I was a little down but not significantly but I told him what the dx was and the prognosis and he jumped all over me for being "negative".Now I wasn't complaining just stating the "facts that were given me".He told me to be POSITIVE because they could find a cure or some magnificent medicine and everything will be all right. Just stating the facts that were given me was seen as pessimism. I think he is an asshole but alas he is the only shrink around here and it took 6 months for me to get an appointment. I

timed it...he sees me for 7 minutes and gives my meds...I also have a counselor who is nothing like this jerk but everyone wants you to be so positive...it' s like they want to disregard any facts....Joyce R

In a message dated 11/22/2009 11:55:57 A.M. US Mountain Standard Tim, bofus6 (AT) verizon (DOT) net writes:

 JoyceR...... I'm certainly relieved to read you escaped what could have been a raging fire! That experience is a real eye opener isn't it.

I've written before that when I stopped working I realized my self esteem and self worth were badly damaged. I thought (then) that if I didn't 'do' anything I wasn't 'worth' anything. It took me a couple of years to work my way through all of that as I had to accept the fact that I simply cannot do what I once did. I know what you mean....

I'm sure that hurts to feel 'forgotten' by your peers after so many years working together. I would feel hurt too Joyce. However, you have a new group of folks who won't forget you!

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Scared & Fatigued

Beth that answer you gave Joyce about fatigue hit the nail on the head for me. I get so darn fustrated when I cant do things that I did 6 months or a year ago. I find myself wanting to nap in the middle of the afternoon and thats hard to do when your working. I keep getting mad at myself cause I cant do this or that and that really puts me in a bummer mood. I cant even walk my dog like I used to. My sats are in the mid to low 90,s most of the time. Any incline does me in. It is hard to accept this new "normal". Not on O2 yet and I hope not for awhile. For some reason going through a rough time right now. Well thats enough. Merf dx05 62

[Guest guest]

Amen! I hate going to see him...he is so insensitive. Most people think you have COPD and I said once to someone that I didn't have COPD but Pulmonary Fibrosis and didn't know if it would be considerate of me to adopt a young Greyhound because I could die and she said " Oh, people with COPD don't die from COPD? They adopt young Greyhounds!" I didn't know what to say because I know nothing about COPD. Is having COPD as bad as having PF? But, mostly people never ask me why I use oxygen and one friend said that when we were walking a long distance that I start to pant and not breathe thru my nose and she is right but she doesn't understand that the reason I start to pant is because it is so hard to walk and we are walking way too fast! How come we never get much sympathy????? Joyce R AZ birds

ok, I think that was 7 minutes too long with that jerk (I mean psychiatrist).

I get weird responses from people too. Like I had one friend tell me I was obsessing about it too much and making it into a monster. The on another day she asked how I was doing and I said my breathing was getting worse and she said, do you think that maybe it’s just in your head? I'm like, NO, I have a tool (oximeter) that measures it for me. I've decided not to share with her anymore.

Then there are those who seem to look right through you and don't know what to say, so they don't talk to you at all. Like we are the walking dead and it might be contagious if they talk to us!

Are we having fun yet? C_53_Familial IPF_5/09Washington

From: "BlueLiddy (AT) aol (DOT) com" <BlueLiddy (AT) aol (DOT) com>To: Breathe-Support Sent: Sun, November 22, 2009 4:07:24 PMSubject: Re: Scared & Fatigued

Thank you, Sher! Also, People don't want you to tell them how things really are....they want you to be upbeat and talk about how good you are feeling and things like that. They don't want to know that you get tired easily and can't do what you used to do. Everything has to be masked. I have a psychiatrist I see for 7 minutes every 3 months and when I had first been diagnosed with IPF and found out that the average life span was about 3-4 years, I was a little down but not significantly but I told him what the dx was and the prognosis and he jumped all over me for being "negative".Now I wasn't complaining just stating the "facts that were given me".He told me to be POSITIVE because they could find a cure or some magnificent medicine and everything will be all right. Just stating the facts that were given me was seen as pessimism. I think he is an asshole but alas he is the only shrink around here and it took 6 months for me to get an appointment. I timed it...he sees me for 7 minutes and gives my meds...I also have a counselor who is nothing like this jerk but everyone wants you to be so positive...it' s like they want to disregard any facts....Joyce R

In a message dated 11/22/2009 11:55:57 A.M. US Mountain Standard Tim, bofus6 (AT) verizon (DOT) net writes:

 JoyceR...... I'm certainly relieved to read you escaped what could have been a raging fire! That experience is a real eye opener isn't it.

I've written before that when I stopped working I realized my self esteem and self worth were badly damaged. I thought (then) that if I didn't 'do' anything I wasn't 'worth' anything. It took me a couple of years to work my way through all of that as I had to accept the fact that I simply cannot do what I once did. I know what you mean....

I'm sure that hurts to feel 'forgotten' by your peers after so many years working together. I would feel hurt too Joyce. However, you have a new group of folks who won't forget you!

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Scared & Fatigued

Beth that answer you gave Joyce about fatigue hit the nail on the head for me. I get so darn fustrated when I cant do things that I did 6 months or a year ago. I find myself wanting to nap in the middle of the afternoon and thats hard to do when your working. I keep getting mad at myself cause I cant do this or that and that really puts me in a bummer mood. I cant even walk my dog like I used to. My sats are in the mid to low 90,s most of the time. Any incline does me in. It is hard to accept this new "normal". Not on O2 yet and I hope not for awhile. For some reason going through a rough time right now. Well thats enough. Merf dx05 62

[Guest guest]

Pink, I am confused...what bad stuff? Do they think you should just have all these horrid things happen to you and not understand why and what to do about it? Do they think you should have no support? Information is POWER!!!! and INDEED LOTS OF GOOD STUFF HAPPENS ON THIS BOARD TOO BESIDES INFO...I have found some people believe if you ignore things or stay ignorant then they won't happen to you.That hearing what can happen somehow magically puts it into your head and develop the symptoms but if you didn't know you wouldn't say, start coughing. Ahahahahahahahah They are fools! Joyce R AZ birds

and i get some people who think i spend too much time in this support group learning all of the bad stuff

i tell them that we share good stuff too

and that it is important to be informed

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org--- On Sun, 11/22/09, worth <hope2thend (AT) yahoo (DOT) com> wrote:

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: How People Respond to UsTo: Breathe-Support Date: Sunday, November 22, 2009, 10:32 PM

ok, I think that was 7 minutes too long with that jerk (I mean psychiatrist) .

I get weird responses from people too. Like I had one friend tell me I was obsessing about it too much and making it into a monster. The on another day she asked how I was doing and I said my breathing was getting worse and she said, do you think that maybe it’s just in your head? I'm like, NO, I have a tool (oximeter) that measures it for me. I've decided not to share with her anymore.

Then there are those who seem to look right through you and don't know what to say, so they don't talk to you at all. Like we are the walking dead and it might be contagious if they talk to us!

Are we having fun yet? C_53_Familial IPF_5/09Washington

From: "BlueLiddy (AT) aol (DOT) com" <BlueLiddy (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, November 22, 2009 4:07:24 PMSubject: Re: Scared & Fatigued

Thank you, Sher! Also, People don't want you to tell them how things really are....they want you to be upbeat and talk about how good you are feeling and things like that. They don't want to know that you get tired easily and can't do what you used to do. Everything has to be masked. I have a psychiatrist I see for 7 minutes every 3 months and when I had first been diagnosed with IPF and found out that the average life span was about 3-4 years, I was a little down but not significantly but I told him what the dx was and the prognosis and he jumped all over me for being "negative".Now I wasn't complaining just stating the "facts that were given me".He told me to be POSITIVE because they could find a cure or some magnificent medicine and everything will be all right. Just stating the facts that were given me was seen as pessimism. I think he is an asshole but alas he is the only shrink around here and it took 6 months for me to get an appointment. I timed it...he sees me for 7 minutes and gives my meds...I also have a counselor who is nothing like this jerk but everyone wants you to be so positive...it' s like they want to disregard any facts....Joyce R

In a message dated 11/22/2009 11:55:57 A.M. US Mountain Standard Tim, bofus6 (AT) verizon (DOT) net writes:

 JoyceR...... I'm certainly relieved to read you escaped what could have been a raging fire! That experience is a real eye opener isn't it.

I've written before that when I stopped working I realized my self esteem and self worth were badly damaged. I thought (then) that if I didn't 'do' anything I wasn't 'worth' anything. It took me a couple of years to work my way through all of that as I had to accept the fact that I simply cannot do what I once did. I know what you mean....

I'm sure that hurts to feel 'forgotten' by your peers after so many years working together. I would feel hurt too Joyce. However, you have a new group of folks who won't forget you!

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Scared & Fatigued

Beth that answer you gave Joyce about fatigue hit the nail on the head for me. I get so darn fustrated when I cant do things that I did 6 months or a year ago. I find myself wanting to nap in the middle of the afternoon and thats hard to do when your working. I keep getting mad at myself cause I cant do this or that and that really puts me in a bummer mood. I cant even walk my dog like I used to. My sats are in the mid to low 90,s most of the time. Any incline does me in. It is hard to accept this new "normal". Not on O2 yet and I hope not for awhile. For some reason going through a rough time right now. Well thats enough. Merf dx05 62

[Guest guest]

I'm scared too....and you just keep talking about it if it makes you feel better! Joyce R AZ birds

it scares me and i talk about it, maybe they don't want to hear about, they want to bury their heads in the sand

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org--- On Mon, 11/23/09, BlueLiddy (AT) aol (DOT) com <BlueLiddy (AT) aol (DOT) com> wrote:

From: BlueLiddy (AT) aol (DOT) com <BlueLiddy (AT) aol (DOT) com>Subject: Re: How People Respond to UsTo: Breathe-Support Date: Monday, November 23, 2009, 5:02 PM

Pink, I am confused...what bad stuff? Do they think you should just have all these horrid things happen to you and not understand why and what to do about it? Do they think you should have no support? Information is POWER!!!! and INDEED LOTS OF GOOD STUFF HAPPENS ON THIS BOARD TOO BESIDES INFO...I have found some people believe if you ignore things or stay ignorant then they won't happen to you.That hearing what can happen somehow magically puts it into your head and develop the symptoms but if you didn't know you wouldn't say, start coughing. Ahahahahahahahah They are fools! Joyce R AZ birds

In a message dated 11/23/2009 6:33:17 A.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

and i get some people who think i spend too much time in this support group learning all of the bad stuff

i tell them that we share good stuff too

and that it is important to be informed

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Sher Bauman <bofus6 (AT) verizon (DOT) net>Subject: Re: Scared & FatiguedTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 15, 2009, 3:25 PM

Merf... I want you to know you are not the only one who feels as you do. Fatigue starts the minute my feet touch the floor when I get out of bed in the morning! I tell my husband it just doesn't make sense to be so tried when I just wake up. I'm sleeping in to approx. 8:30 or some days even to 9! "Back when" I used to be an early riser.

By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to tired to do anything more...

I'm still working on my new 'normal' too.

I dreaded O2 and wouldn't wear it much when I first got it. I had a lot of denial going on. I do always use the O2 w/cpap at night and that doesn't bother me.

Now, I go out with O2, use the scooters in the super-stores and the difference is so noticeable that I'm now glad to have the O2.

I'm sorry you are having a 'rough time' . It will pass and then there will be another rough time.. lol (That isn't very funny is it?) I'm sending it along anyway, maybe you have a sick humor like I do...)

Keep on keepin' on Merf!

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Scared & Fatigued

Beth that answer you gave Joyce about fatigue hit the nail on the head for me. I get so darn fustrated when I cant do things that I did 6 months or a year ago. I find myself wanting to nap in the middle of the afternoon and thats hard to do when your working. I keep getting mad at myself cause I cant do this or that and that really puts me in a bummer mood. I cant even walk my dog like I used to. My sats are in the mid to low 90,s most of the time. Any incline does me in. It is hard to accept this new "normal". Not on O2 yet and I hope not for awhile. For some reason going through a rough time right now. Well thats enough. Merf dx05 62

[Guest guest]

Pink- yes it is not nice when people pass on and each time I've seen it here on the board I have cried...but I have been so impressed with the courage that they have shown. I so wish that this disease didn't exist! But is does...it doesn't matter to me that I will die though it scares me,but, it matters to me how I lived and the people on this board...and that includes you, have touched me deeply...and those that have passed on I won't ever forget...their lives were important...Joyce R AZ birds

bad stuff like people progressing and dying

but i don't let that stop me

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org--- On Mon, 11/23/09, BlueLiddy (AT) aol (DOT) com <BlueLiddy (AT) aol (DOT) com> wrote:

From: BlueLiddy (AT) aol (DOT) com <BlueLiddy (AT) aol (DOT) com>Subject: Re: How People Respond to UsTo: Breathe-Support Date: Monday, November 23, 2009, 5:02 PM

Pink, I am confused...what bad stuff? Do they think you should just have all these horrid things happen to you and not understand why and what to do about it? Do they think you should have no support? Information is POWER!!!! and INDEED LOTS OF GOOD STUFF HAPPENS ON THIS BOARD TOO BESIDES INFO...I have found some people believe if you ignore things or stay ignorant then they won't happen to you.That hearing what can happen somehow magically puts it into your head and develop the symptoms but if you didn't know you wouldn't say, start coughing. Ahahahahahahahah They are fools! Joyce R AZ birds

In a message dated 11/23/2009 6:33:17 A.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

and i get some people who think i spend too much time in this support group learning all of the bad stuff

i tell them that we share good stuff too

and that it is important to be informed

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Sher Bauman <bofus6 (AT) verizon (DOT) net>Subject: Re: Scared & FatiguedTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 15, 2009, 3:25 PM

Merf... I want you to know you are not the only one who feels as you do. Fatigue starts the minute my feet touch the floor when I get out of bed in the morning! I tell my husband it just doesn't make sense to be so tried when I just wake up. I'm sleeping in to approx. 8:30 or some days even to 9! "Back when" I used to be an early riser.

By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to tired to do anything more...

I'm still working on my new 'normal' too.

I dreaded O2 and wouldn't wear it much when I first got it. I had a lot of denial going on. I do always use the O2 w/cpap at night and that doesn't bother me.

Now, I go out with O2, use the scooters in the super-stores and the difference is so noticeable that I'm now glad to have the O2.

I'm sorry you are having a 'rough time' . It will pass and then there will be another rough time.. lol (That isn't very funny is it?) I'm sending it along anyway, maybe you have a sick humor like I do...)

Keep on keepin' on Merf!

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Scared & Fatigued

Beth that answer you gave Joyce about fatigue hit the nail on the head for me. I get so darn fustrated when I cant do things that I did 6 months or a year ago. I find myself wanting to nap in the middle of the afternoon and thats hard to do when your working. I keep getting mad at myself cause I cant do this or that and that really puts me in a bummer mood. I cant even walk my dog like I used to. My sats are in the mid to low 90,s most of the time. Any incline does me in. It is hard to accept this new "normal". Not on O2 yet and I hope not for awhile. For some reason going through a rough time right now. Well thats enough. Merf dx05 62

[Guest guest]

Bruce- the docs told me I have mild emphysema in my upper lungs....is that COPD? They seem to disregard it though. Joyce R

Joyce RudyI haven't run across any of the problems you describe with my counseloror friends or family. Therefore, I have to think either mine areexceptionally nice or yours are exceptional jerks or its a bit of acombination.You definitely should tell them your feelings on the subject. If theyneed educating then do it. Maybe its just their ignorance. However, ifthey don't learn or respond appropriately then don't let them bring youdown.Among many things I've learned is that I'm not going to burden myself atthis point spending time with people who are unhealthy for me. Now thatsa hard one. Someone who needs help, I'm glad to help. But if its someonewho is inconsiderate of you each time you see them or someone who makeseverything about them and fails to listen to you. In my case I had tostop seeing someone who in their selfishness was really causing damageto their teenage daughter and I just couldn't ignore what was going on.So we each decide. But don't allow others to tear you down. If they'rewalking too fast, then you still slow down. Certain things are yourchoices in life such as the greyhounds. Everyone has an opinion butfriends respect your choice even if they don't agree with it. They knowyou've thought through it and made the decision you thought was right.COPD is very different in many respects from PF, but the various formsof PF differ too. Yours differs since a probable cause is known. Someoneelse differs because they have NSIP. In general COPD is much moregradual and one can live a longer time with it. Their oxygen needsgenerally are on the low end too. Also, the difference between theirsitting and active needs is generally less. But people have alldifferent degrees of COPD too. Unfortunately, I've known of quite a fewsuch as husbands of friends or fathers of friends who got COPD but neverstopped smoking and they did become very tied to their homes. Also someof them eventually developed lung cancer. As to people not dying fromCOPD thats not true at all. Even if it took 30 years, my uncle did. Infact its one of the largest killers there is. It's just a very differentpath from PF.>>> From: Sher Bauman bofus6 (AT) verizon (DOT) net>> Subject: Re: Scared & Fatigued> To: Breathe-Support@ yahoogroups. com> Date: Sunday, November 15, 2009, 3:25 PM>>>> Merf... I want you to know you are not the only one who feels asyou do.> Fatigue starts the minute my feet touch the floor when I get out ofbed in> the morning! I tell my husband it just doesn't make sense to be sotried> when I just wake up. I'm sleeping in to approx. 8:30 or some dayseven to> 9! "Back when" I used to be an early riser.> By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to tiredto> do anything more...> I'm still working on my new 'normal' too.>> I dreaded O2 and wouldn't wear it much when I first got it. I had alot of> denial going on. I do always use the O2 w/cpap at night and thatdoesn't> bother me.> Now, I go out with O2, use the scooters in the super-stores and the> difference is so noticeable that I'm now glad to have the O2.> I'm sorry you are having a 'rough time' . It will pass and thenthere> will be another rough time.. lol (That isn't very funny is it?) I'm sending> it along anyway, maybe you have a sick humor like I do...)> Keep on keepin' on Merf!> MamaSher; 71, IPF 3-2006, OR.> Don't fret about tomorrow, God is already there!>> Scared & Fatigued>>>> Beth that answer you gave Joyce about fatigue hit the nail onthe> head for me. I get so darn fustrated when I cant do things that I did6 months> or a year ago. I find myself wanting to nap in the middle of theafternoon> and thats hard to do when your working. I keep getting mad at myself> cause I cant do this or that and that really puts me in a bummermood. I cant> even walk my dog like I used to. My sats are in the mid to low 90,smost of> the time. Any incline does me in. It is hard to accept this new"normal".> Not on O2 yet and I hope not for awhile. For some reason goingthrough a> rough time right now. Well thats enough.> Merf dx05 62>

[Guest guest]

Joyce Rudy

I haven't run across any of the problems you describe with my counselor

or friends or family. Therefore, I have to think either mine are

exceptionally nice or yours are exceptional jerks or its a bit of a

combination.

You definitely should tell them your feelings on the subject. If they

need educating then do it. Maybe its just their ignorance. However, if

they don't learn or respond appropriately then don't let them bring you

down.

Among many things I've learned is that I'm not going to burden myself at

this point spending time with people who are unhealthy for me. Now thats

a hard one. Someone who needs help, I'm glad to help. But if its someone

who is inconsiderate of you each time you see them or someone who makes

everything about them and fails to listen to you. In my case I had to

stop seeing someone who in their selfishness was really causing damage

to their teenage daughter and I just couldn't ignore what was going on.

So we each decide. But don't allow others to tear you down. If they're

walking too fast, then you still slow down. Certain things are your

choices in life such as the greyhounds. Everyone has an opinion but

friends respect your choice even if they don't agree with it. They know

you've thought through it and made the decision you thought was right.

COPD is very different in many respects from PF, but the various forms

of PF differ too. Yours differs since a probable cause is known. Someone

else differs because they have NSIP. In general COPD is much more

gradual and one can live a longer time with it. Their oxygen needs

generally are on the low end too. Also, the difference between their

sitting and active needs is generally less. But people have all

different degrees of COPD too. Unfortunately, I've known of quite a few

such as husbands of friends or fathers of friends who got COPD but never

stopped smoking and they did become very tied to their homes. Also some

of them eventually developed lung cancer. As to people not dying from

COPD thats not true at all. Even if it took 30 years, my uncle did. In

fact its one of the largest killers there is. It's just a very different

path from PF.

>

>

> From: Sher Bauman bofus6 (AT) verizon (DOT) net>

> Subject: Re: Scared & Fatigued

> To: Breathe-Support@ yahoogroups. com

> Date: Sunday, November 15, 2009, 3:25 PM

>

>

>

> Merf... I want you to know you are not the only one who feels as

you do.

> Fatigue starts the minute my feet touch the floor when I get out of

bed in

> the morning! I tell my husband it just doesn't make sense to be so

tried

> when I just wake up. I'm sleeping in to approx. 8:30 or some days

even to

> 9! " Back when " I used to be an early riser.

> By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to tired

to

> do anything more...

> I'm still working on my new 'normal' too.

>

> I dreaded O2 and wouldn't wear it much when I first got it. I had a

lot of

> denial going on. I do always use the O2 w/cpap at night and that

doesn't

> bother me.

> Now, I go out with O2, use the scooters in the super-stores and the

> difference is so noticeable that I'm now glad to have the O2.

> I'm sorry you are having a 'rough time' . It will pass and then

there

> will be another rough time.. lol (That isn't very funny is it?)

I'm sending

> it along anyway, maybe you have a sick humor like I do...)

> Keep on keepin' on Merf!

> MamaSher; 71, IPF 3-2006, OR.

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

>

> Scared & Fatigued

>

>

>

> Beth that answer you gave Joyce about fatigue hit the nail on

the

> head for me. I get so darn fustrated when I cant do things that I did

6 months

> or a year ago. I find myself wanting to nap in the middle of the

afternoon

> and thats hard to do when your working. I keep getting mad at myself

> cause I cant do this or that and that really puts me in a bummer

mood. I cant

> even walk my dog like I used to. My sats are in the mid to low 90,s

most of

> the time. Any incline does me in. It is hard to accept this new

" normal " .

> Not on O2 yet and I hope not for awhile. For some reason going

through a

> rough time right now. Well thats enough.

> Merf dx05 62

>

[Guest guest]

bad stuff like people progressing and dying

but i don't let that stop me

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: How People Respond to UsTo: Breathe-Support Date: Monday, November 23, 2009, 5:02 PM

Pink, I am confused...what bad stuff? Do they think you should just have all these horrid things happen to you and not understand why and what to do about it? Do they think you should have no support? Information is POWER!!!! and INDEED LOTS OF GOOD STUFF HAPPENS ON THIS BOARD TOO BESIDES INFO...I have found some people believe if you ignore things or stay ignorant then they won't happen to you.That hearing what can happen somehow magically puts it into your head and develop the symptoms but if you didn't know you wouldn't say, start coughing. Ahahahahahahahah They are fools! Joyce R AZ birds

In a message dated 11/23/2009 6:33:17 A.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

and i get some people who think i spend too much time in this support group learning all of the bad stuff

i tell them that we share good stuff too

and that it is important to be informed

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Sher Bauman <bofus6 (AT) verizon (DOT) net>Subject: Re: Scared & FatiguedTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 15, 2009, 3:25 PM

Merf... I want you to know you are not the only one who feels as you do. Fatigue starts the minute my feet touch the floor when I get out of bed in the morning! I tell my husband it just doesn't make sense to be so tried when I just wake up. I'm sleeping in to approx. 8:30 or some days even to 9! "Back when" I used to be an early riser.

By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to tired to do anything more...

I'm still working on my new 'normal' too.

I dreaded O2 and wouldn't wear it much when I first got it. I had a lot of denial going on. I do always use the O2 w/cpap at night and that doesn't bother me.

Now, I go out with O2, use the scooters in the super-stores and the difference is so noticeable that I'm now glad to have the O2.

I'm sorry you are having a 'rough time' . It will pass and then there will be another rough time.. lol (That isn't very funny is it?) I'm sending it along anyway, maybe you have a sick humor like I do...)

Keep on keepin' on Merf!

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Scared & Fatigued

Beth that answer you gave Joyce about fatigue hit the nail on the head for me. I get so darn fustrated when I cant do things that I did 6 months or a year ago. I find myself wanting to nap in the middle of the afternoon and thats hard to do when your working. I keep getting mad at myself cause I cant do this or that and that really puts me in a bummer mood. I cant even walk my dog like I used to. My sats are in the mid to low 90,s most of the time. Any incline does me in. It is hard to accept this new "normal". Not on O2 yet and I hope not for awhile. For some reason going through a rough time right now. Well thats enough. Merf dx05 62

[Guest guest]

it scares me and i talk about it, maybe they don't want to hear about, they want to bury their heads in the sand

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: How People Respond to UsTo: Breathe-Support Date: Monday, November 23, 2009, 5:02 PM

Pink, I am confused...what bad stuff? Do they think you should just have all these horrid things happen to you and not understand why and what to do about it? Do they think you should have no support? Information is POWER!!!! and INDEED LOTS OF GOOD STUFF HAPPENS ON THIS BOARD TOO BESIDES INFO...I have found some people believe if you ignore things or stay ignorant then they won't happen to you.That hearing what can happen somehow magically puts it into your head and develop the symptoms but if you didn't know you wouldn't say, start coughing. Ahahahahahahahah They are fools! Joyce R AZ birds

In a message dated 11/23/2009 6:33:17 A.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

and i get some people who think i spend too much time in this support group learning all of the bad stuff

i tell them that we share good stuff too

and that it is important to be informed

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Sher Bauman <bofus6 (AT) verizon (DOT) net>Subject: Re: Scared & FatiguedTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 15, 2009, 3:25 PM

Merf... I want you to know you are not the only one who feels as you do. Fatigue starts the minute my feet touch the floor when I get out of bed in the morning! I tell my husband it just doesn't make sense to be so tried when I just wake up. I'm sleeping in to approx. 8:30 or some days even to 9! "Back when" I used to be an early riser.

By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to tired to do anything more...

I'm still working on my new 'normal' too.

I dreaded O2 and wouldn't wear it much when I first got it. I had a lot of denial going on. I do always use the O2 w/cpap at night and that doesn't bother me.

Now, I go out with O2, use the scooters in the super-stores and the difference is so noticeable that I'm now glad to have the O2.

I'm sorry you are having a 'rough time' . It will pass and then there will be another rough time.. lol (That isn't very funny is it?) I'm sending it along anyway, maybe you have a sick humor like I do...)

Keep on keepin' on Merf!

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Scared & Fatigued

Beth that answer you gave Joyce about fatigue hit the nail on the head for me. I get so darn fustrated when I cant do things that I did 6 months or a year ago. I find myself wanting to nap in the middle of the afternoon and thats hard to do when your working. I keep getting mad at myself cause I cant do this or that and that really puts me in a bummer mood. I cant even walk my dog like I used to. My sats are in the mid to low 90,s most of the time. Any incline does me in. It is hard to accept this new "normal". Not on O2 yet and I hope not for awhile. For some reason going through a rough time right now. Well thats enough. Merf dx05 62

[Guest guest]

Pink/Rudy

The board is no different than if you were a large group of people

sitting around, except its all the time and easy to come and go. But the

mood and flavor of the conversation covers everything and changes every

day. I think many find it to be too much at times, back away, come back.

It's actually nice that you can judge yourself when too much time is

spent on a subject you don't want to talk about right then. I know many

new to the disease see some who are further progressed and they retreat

until they're further themselves. I, on the other hand, found many of

those further along than me to give me so much courage to know that as

it progresses I can deal with it.

To me the board is one thing, to others its something else. But to me

its all about learning to live with the disease. Thats living mentally,

emotionally, and physically. It's getting good doctors, doing healthy

things, its crying, its laughing. Its Joyce Rudy getting scolded for

overdoing things the other day...lol...but feeling so much happiness for

her when she first made the journey to National Jewish.

I don't try to read or respond to all posts. I sometimes miss things I

wish I didn't by skipping a post that I thought was on another subject.

I've always encouraged others to do the same. But isn't that like

friends. Don't you have some friends you adore, but every once in a

while just aren't up to hearing them talk about a particular subject. I

know Pink skips many of mine because they're too long, but I'm not

bothered by it. We had a couple of parties here on the board (virtual)

and there were members who had no interest and skipped over our

insanity.

The board is like any other social gathering you might have, especially

any support group. You can focus on the things that aren't exactly to

your interest or liking. Or you can focus on how great it is and all you

are able to gain by it. There have been those who couldn't deal with

what you see here and quickly ran from the board. It's their choice if

living without the knowledge is a safer mental state.

I personally had to understand the worst of the disease so I could learn

that regardless of the course, I could still be ok. Today, Peggy is a

great example. Hearing of her on hospice doesn't scare me regarding my

future. Quite the opposite. It gives me so much comfort, because I know

when I reach her stage i can get help with the cough and avoid pain and

still find quality time for virtual and real hugs and talk.

I personally hate to imagine having had to deal with the disease without

the two forums I belong to. I feel for those who have found no

information and no support to help them.

>

>

> From: Sher Bauman bofus6 (AT) verizon (DOT) net>

> Subject: Re: Scared & Fatigued

> To: Breathe-Support@ yahoogroups. com

> Date: Sunday, November 15, 2009, 3:25 PM

>

>

>

>

> Merf... I want you to know you are not the only one who feels as

you do.

> Fatigue starts the minute my feet touch the floor when I get out of

bed

> in the morning! I tell my husband it just doesn't make sense to be

so tried

> when I just wake up. I'm sleeping in to approx. 8:30 or some days

even

> to 9! " Back when " I used to be an early riser.

> By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to tired

to

> do anything more...

> I'm still working on my new 'normal' too.

>

> I dreaded O2 and wouldn't wear it much when I first got it. I had a

lot of

> denial going on. I do always use the O2 w/cpap at night and that

doesn't

> bother me.

> Now, I go out with O2, use the scooters in the super-stores and the

> difference is so noticeable that I'm now glad to have the O2.

> I'm sorry you are having a 'rough time' . It will pass and then

there

> will be another rough time.. lol (That isn't very funny is it?)

I'm sending

> it along anyway, maybe you have a sick humor like I do...)

> Keep on keepin' on Merf!

> MamaSher; 71, IPF 3-2006, OR.

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

>

> Scared & Fatigued

>

>

>

> Beth that answer you gave Joyce about fatigue hit the nail on

the

> head for me. I get so darn fustrated when I cant do things that I did

6

> months or a year ago. I find myself wanting to nap in the middle of

the

> afternoon and thats hard to do when your working. I keep getting mad

at myself

> cause I cant do this or that and that really puts me in a bummer

mood. I cant

> even walk my dog like I used to. My sats are in the mid to low 90,s

most of

> the time. Any incline does me in. It is hard to accept this new

" normal " .

> Not on O2 yet and I hope not for awhile. For some reason going

through a

> rough time right now. Well thats enough.

> Merf dx05 62

>

[Guest guest]

My father and sister both died of COPD so I know that people DO die of it. I don't know which is worse, COPD or PF.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: How People Respond to UsTo: Breathe-Support Date: Monday, November 23, 2009, 2:15 PM

Joyce Rudy

I haven't run across any of the problems you describe with my counselor

or friends or family. Therefore, I have to think either mine are

exceptionally nice or yours are exceptional jerks or its a bit of a

combination.

You definitely should tell them your feelings on the subject. If they

need educating then do it. Maybe its just their ignorance. However, if

they don't learn or respond appropriately then don't let them bring you

down.

Among many things I've learned is that I'm not going to burden myself at

this point spending time with people who are unhealthy for me. Now thats

a hard one. Someone who needs help, I'm glad to help. But if its someone

who is inconsiderate of you each time you see them or someone who makes

everything about them and fails to listen to you. In my case I had to

stop seeing someone who in their selfishness was really causing damage

to their teenage daughter and I just couldn't ignore what was going on.

So we each decide. But don't allow others to tear you down. If they're

walking too fast, then you still slow down. Certain things are your

choices in life such as the greyhounds. Everyone has an opinion but

friends respect your choice even if they don't agree with it. They know

you've thought through it and made the decision you thought was right.

COPD is very different in many respects from PF, but the various forms

of PF differ too. Yours differs since a probable cause is known. Someone

else differs because they have NSIP. In general COPD is much more

gradual and one can live a longer time with it. Their oxygen needs

generally are on the low end too. Also, the difference between their

sitting and active needs is generally less. But people have all

different degrees of COPD too. Unfortunately, I've known of quite a few

such as husbands of friends or fathers of friends who got COPD but never

stopped smoking and they did become very tied to their homes. Also some

of them eventually developed lung cancer. As to people not dying from

COPD thats not true at all. Even if it took 30 years, my uncle did. In

fact its one of the largest killers there is. It's just a very different

path from PF.

>

>

> From: Sher Bauman bofus6 (AT) verizon (DOT) net>

> Subject: Re: Scared & Fatigued

> To: Breathe-Support@ yahoogroups. com

> Date: Sunday, November 15, 2009, 3:25 PM

>

>

>

> Merf... I want you to know you are not the only one who feels as

you do.

> Fatigue starts the minute my feet touch the floor when I get out of

bed in

> the morning! I tell my husband it just doesn't make sense to be so

tried

> when I just wake up. I'm sleeping in to approx. 8:30 or some days

even to

> 9! "Back when" I used to be an early riser.

> By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to tired

to

> do anything more...

> I'm still working on my new 'normal' too.

>

> I dreaded O2 and wouldn't wear it much when I first got it. I had a

lot of

> denial going on. I do always use the O2 w/cpap at night and that

doesn't

> bother me.

> Now, I go out with O2, use the scooters in the super-stores and the

> difference is so noticeable that I'm now glad to have the O2.

> I'm sorry you are having a 'rough time' . It will pass and then

there

> will be another rough time.. lol (That isn't very funny is it?)

I'm sending

> it along anyway, maybe you have a sick humor like I do...)

> Keep on keepin' on Merf!

> MamaSher; 71, IPF 3-2006, OR.

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

>

> Scared & Fatigued

>

>

>

> Beth that answer you gave Joyce about fatigue hit the nail on

the

> head for me. I get so darn fustrated when I cant do things that I did

6 months

> or a year ago. I find myself wanting to nap in the middle of the

afternoon

> and thats hard to do when your working. I keep getting mad at myself

> cause I cant do this or that and that really puts me in a bummer

mood. I cant

> even walk my dog like I used to. My sats are in the mid to low 90,s

most of

> the time. Any incline does me in. It is hard to accept this new

"normal".

> Not on O2 yet and I hope not for awhile. For some reason going

through a

> rough time right now. Well thats enough.

> Merf dx05 62

>

[Guest guest]

You're describing my relatives.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Sher Bauman <bofus6 (AT) verizon (DOT) net>Subject: Re: Scared & FatiguedTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 15, 2009, 3:25 PM

Merf... I want you to know you are not the only one who feels as you do. Fatigue starts the minute my feet touch the floor when I get out of bed in the morning! I tell my husband it just doesn't make sense to be so tried when I just wake up. I'm sleeping in to approx. 8:30 or some days even to 9! "Back when" I used to be an early riser.

By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to tired to do anything more...

I'm still working on my new 'normal' too.

I dreaded O2 and wouldn't wear it much when I first got it. I had a lot of denial going on. I do always use the O2 w/cpap at night and that doesn't bother me.

Now, I go out with O2, use the scooters in the super-stores and the difference is so noticeable that I'm now glad to have the O2.

I'm sorry you are having a 'rough time' . It will pass and then there will be another rough time.. lol (That isn't very funny is it?) I'm sending it along anyway, maybe you have a sick humor like I do...)

Keep on keepin' on Merf!

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Scared & Fatigued

Beth that answer you gave Joyce about fatigue hit the nail on the head for me. I get so darn fustrated when I cant do things that I did 6 months or a year ago. I find myself wanting to nap in the middle of the afternoon and thats hard to do when your working. I keep getting mad at myself cause I cant do this or that and that really puts me in a bummer mood. I cant even walk my dog like I used to. My sats are in the mid to low 90,s most of the time. Any incline does me in. It is hard to accept this new "normal". Not on O2 yet and I hope not for awhile. For some reason going through a rough time right now. Well thats enough. Merf dx05 62

[Guest guest]

Joyce

Yes it is. Did National Jewish say that? If they didn't tell you to do

anything for it, sounds like they consider it mild and not currently an

issue.

> >

> >

> > From: Sher Bauman bofus6 (AT) verizon (DOT) net>

> > Subject: Re: Scared & Fatigued

> > To: Breathe-Support@ yahoogroups. com

> > Date: Sunday, November 15, 2009, 3:25 PM

> >

> >

> >

> > Merf... I want you to know you are not the only one who feels as

> you do.

> > Fatigue starts the minute my feet touch the floor when I get out of

> bed in

> > the morning! I tell my husband it just doesn't make sense to be so

> tried

> > when I just wake up. I'm sleeping in to approx. 8:30 or some days

> even to

> > 9! " Back when " I used to be an early riser.

> > By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to

tired

> to

> > do anything more...

> > I'm still working on my new 'normal' too.

> >

> > I dreaded O2 and wouldn't wear it much when I first got it. I had a

> lot of

> > denial going on. I do always use the O2 w/cpap at night and that

> doesn't

> > bother me.

> > Now, I go out with O2, use the scooters in the super-stores and the

> > difference is so noticeable that I'm now glad to have the O2.

> > I'm sorry you are having a 'rough time' . It will pass and then

> there

> > will be another rough time.. lol (That isn't very funny is it?)

> I'm sending

> > it along anyway, maybe you have a sick humor like I do...)

> > Keep on keepin' on Merf!

> > MamaSher; 71, IPF 3-2006, OR.

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

> >

> > Scared & Fatigued

> >

> >

> >

> > Beth that answer you gave Joyce about fatigue hit the nail on

> the

> > head for me. I get so darn fustrated when I cant do things that I

did

> 6 months

> > or a year ago. I find myself wanting to nap in the middle of the

> afternoon

> > and thats hard to do when your working. I keep getting mad at

myself

> > cause I cant do this or that and that really puts me in a bummer

> mood. I cant

> > even walk my dog like I used to. My sats are in the mid to low 90,s

> most of

> > the time. Any incline does me in. It is hard to accept this new

> " normal " .

> > Not on O2 yet and I hope not for awhile. For some reason going

> through a

> > rough time right now. Well thats enough.

> > Merf dx05 62

> >

>

[Guest guest]

Happy Thanksgiving everyone. hope I didn't scare the newpeople. Thanks for the replys....how wonderful you are.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Mon, November 23, 2009 8:53:05 PMSubject: Re: How People Respond to Us

I'm scared too....and you just keep talking about it if it makes you feel better! Joyce R AZ birds

In a message dated 11/23/2009 3:19:10 P.M. US Mountain Standard Time, pinkrockybeach@ yahoo.com writes:

it scares me and i talk about it, maybe they don't want to hear about, they want to bury their heads in the sand

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Sher Bauman <bofus6 (AT) verizon (DOT) net>Subject: Re: Scared & FatiguedTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 15, 2009, 3:25 PM

Merf... I want you to know you are not the only one who feels as you do. Fatigue starts the minute my feet touch the floor when I get out of bed in the morning! I tell my husband it just doesn't make sense to be so tried when I just wake up. I'm sleeping in to approx. 8:30 or some days even to 9! "Back when" I used to be an early riser.

By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to tired to do anything more...

I'm still working on my new 'normal' too.

I dreaded O2 and wouldn't wear it much when I first got it. I had a lot of denial going on. I do always use the O2 w/cpap at night and that doesn't bother me.

Now, I go out with O2, use the scooters in the super-stores and the difference is so noticeable that I'm now glad to have the O2.

I'm sorry you are having a 'rough time' . It will pass and then there will be another rough time.. lol (That isn't very funny is it?) I'm sending it along anyway, maybe you have a sick humor like I do...)

Keep on keepin' on Merf!

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Scared & Fatigued

Beth that answer you gave Joyce about fatigue hit the nail on the head for me. I get so darn fustrated when I cant do things that I did 6 months or a year ago. I find myself wanting to nap in the middle of the afternoon and thats hard to do when your working. I keep getting mad at myself cause I cant do this or that and that really puts me in a bummer mood. I cant even walk my dog like I used to. My sats are in the mid to low 90,s most of the time. Any incline does me in. It is hard to accept this new "normal". Not on O2 yet and I hope not for awhile. For some reason going through a rough time right now. Well thats enough. Merf dx05 62

[Guest guest]

Actually National Jewish didn't say that it was another doctor and I can';t remember who...Joyce R

JoyceYes it is. Did National Jewish say that? If they didn't tell you to doanything for it, sounds like they consider it mild and not currently anissue.> >> >> > From: Sher Bauman bofus6 (AT) verizon (DOT) net>> > Subject: Re: Scared & Fatigued> > To: Breathe-Support@ yahoogroups. com> > Date: Sunday, November 15, 2009, 3:25 PM> >> >> >> > Merf... I want you to know you are not the only one who feels as> you do.> > Fatigue starts the minute my feet touch the floor when I get out of> bed in> > the morning! I tell my husband it just doesn't make sense to be so> tried> > when I just wake up. I'm sleeping in to approx. 8:30 or some days> even to> > 9! "Back when" I used to be an early riser.> > By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to tired> to> > do anything more...> > I'm still working on my new 'normal' too.> >> > I dreaded O2 and wouldn't wear it much when I first got it. I had a> lot of> > denial going on. I do always use the O2 w/cpap at night and that> doesn't> > bother me.> > Now, I go out with O2, use the scooters in the super-stores and the> > difference is so noticeable that I'm now glad to have the O2.> > I'm sorry you are having a 'rough time' . It will pass and then> there> > will be another rough time.. lol (That isn't very funny is it?)> I'm sending> > it along anyway, maybe you have a sick humor like I do...)> > Keep on keepin' on Merf!> > MamaSher; 71, IPF 3-2006, OR.> > Don't fret about tomorrow, God is already there!> >> > Scared & Fatigued> >> >> >> > Beth that answer you gave Joyce about fatigue hit the nail on> the> > head for me. I get so darn fustrated when I cant do things that Idid> 6 months> > or a year ago. I find myself wanting to nap in the middle of the> afternoon> > and thats hard to do when your working. I keep getting mad atmyself> > cause I cant do this or that and that really puts me in a bummer> mood. I cant> > even walk my dog like I used to. My sats are in the mid to low 90,s> most of> > the time. Any incline does me in. It is hard to accept this new> "normal".> > Not on O2 yet and I hope not for awhile. For some reason going> through a> > rough time right now. Well thats enough.> > Merf dx05 62> >>

[Guest guest]

JoyceWell, if your old pulmonologist is the one who said it, forget it everhappened as you know he didn't know what he was talking about. Now, youshould ask National Jewish about it, but if they don't see it, then Iwouldn't be worried about it. Thats the problem we have sometimes isgetting the misdiagnoses out of our minds. But its the old one who justtold you to go home and die, said the birds couldn't be a problem, andtold you that there was no reason to go to National Jewish. Fortunately,your GP or Primary was much more open in thinking and encouraging. Butgo with the latest and most trustworthy information you have.> > >> > >> > > From: Sher Bauman bofus6 (AT) verizon (DOT) net>> > > Subject: Re: Scared & Fatigued> > > To: Breathe-Support@ yahoogroups. com> > > Date: Sunday, November 15, 2009, 3:25 PM> > >> > >> > >> > > Merf... I want you to know you are not the only one who feels as> > you do.> > > Fatigue starts the minute my feet touch the floor when I get outof> > bed in> > > the morning! I tell my husband it just doesn't make sense to beso> > tried> > > when I just wake up. I'm sleeping in to approx. 8:30 or some days> > even to> > > 9! "Back when" I used to be an early riser.> > > By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to> tired> > to> > > do anything more...> > > I'm still working on my new 'normal' too.> > >> > > I dreaded O2 and wouldn't wear it much when I first got it. I hada> > lot of> > > denial going on. I do always use the O2 w/cpap at night and that> > doesn't> > > bother me.> > > Now, I go out with O2, use the scooters in the super-stores andthe> > > difference is so noticeable that I'm now glad to have the O2.> > > I'm sorry you are having a 'rough time' . It will pass and then> > there> > > will be another rough time.. lol (That isn't very funny is it?)> > I'm sending> > > it along anyway, maybe you have a sick humor like I do...)> > > Keep on keepin' on Merf!> > > MamaSher; 71, IPF 3-2006, OR.> > > Don't fret about tomorrow, God is already there!> > >> > > Scared & Fatigued> > >> > >> > >> > > Beth that answer you gave Joyce about fatigue hit the nailon> > the> > > head for me. I get so darn fustrated when I cant do things that I> did> > 6 months> > > or a year ago. I find myself wanting to nap in the middle of the> > afternoon> > > and thats hard to do when your working. I keep getting mad at> myself> > > cause I cant do this or that and that really puts me in a bummer> > mood. I cant> > > even walk my dog like I used to. My sats are in the mid to low90,s> > most of> > > the time. Any incline does me in. It is hard to accept this new> > "normal".> > > Not on O2 yet and I hope not for awhile. For some reason going> > through a> > > rough time right now. Well thats enough.> > > Merf dx05 62> > >> >>

[Guest guest]

National Jewish never said I have emphazma so I will go by what they said. Joyce R AZ birds

JoyceWell, if your old pulmonologist is the one who said it, forget it everhappened as you know he didn't know what he was talking about. Now, youshould ask National Jewish about it, but if they don't see it, then Iwouldn't be worried about it. Thats the problem we have sometimes isgetting the misdiagnoses out of our minds. But its the old one who justtold you to go home and die, said the birds couldn't be a problem, andtold you that there was no reason to go to National Jewish. Fortunately,your GP or Primary was much more open in thinking and encouraging. Butgo with the latest and most trustworthy information you have.> > >> > >> > > From: Sher Bauman bofus6 (AT) verizon (DOT) net>> > > Subject: Re: Scared & Fatigued> > > To: Breathe-Support@ yahoogroups. com> > > Date: Sunday, November 15, 2009, 3:25 PM> > >> > >> > >> > > Merf... I want you to know you are not the only one who feels as> > you do.> > > Fatigue starts the minute my feet touch the floor when I get outof> > bed in> > > the morning! I tell my husband it just doesn't make sense to beso> > tried> > > when I just wake up. I'm sleeping in to approx. 8:30 or some days> > even to> > > 9! "Back when" I used to be an early riser.> > > By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to> tired> > to> > > do anything more...> > > I'm still working on my new 'normal' too.> > >> > > I dreaded O2 and wouldn't wear it much when I first got it. I hada> > lot of> > > denial going on. I do always use the O2 w/cpap at night and that> > doesn't> > > bother me.> > > Now, I go out with O2, use the scooters in the super-stores andthe> > > difference is so noticeable that I'm now glad to have the O2.> > > I'm sorry you are having a 'rough time' . It will pass and then> > there> > > will be another rough time.. lol (That isn't very funny is it?)> > I'm sending> > > it along anyway, maybe you have a sick humor like I do...)> > > Keep on keepin' on Merf!> > > MamaSher; 71, IPF 3-2006, OR.> > > Don't fret about tomorrow, God is already there!> > >> > > Scared & Fatigued> > >> > >> > >> > > Beth that answer you gave Joyce about fatigue hit the nailon> > the> > > head for me. I get so darn fustrated when I cant do things that I> did> > 6 months> > > or a year ago. I find myself wanting to nap in the middle of the> > afternoon> > > and thats hard to do when your working. I keep getting mad at> myself> > > cause I cant do this or that and that really puts me in a bummer> > mood. I cant> > > even walk my dog like I used to. My sats are in the mid to low90,s> > most of> > > the time. Any incline does me in. It is hard to accept this new> > "normal".> > > Not on O2 yet and I hope not for awhile. For some reason going> > through a> > > rough time right now. Well thats enough.> > > Merf dx05 62> > >> >>

[Guest guest]

Joyce

Well, if your old pulmonologist is the one who said it, forget it ever

happened as you know he didn't know what he was talking about. Now, you

should ask National Jewish about it, but if they don't see it, then I

wouldn't be worried about it. Thats the problem we have sometimes is

getting the misdiagnoses out of our minds. But its the old one who just

told you to go home and die, said the birds couldn't be a problem, and

told you that there was no reason to go to National Jewish. Fortunately,

your GP or Primary was much more open in thinking and encouraging. But

go with the latest and most trustworthy information you have.

> > >

> > >

> > > From: Sher Bauman bofus6 (AT) verizon (DOT) net>

> > > Subject: Re: Scared & Fatigued

> > > To: Breathe-Support@ yahoogroups. com

> > > Date: Sunday, November 15, 2009, 3:25 PM

> > >

> > >

> > >

> > > Merf... I want you to know you are not the only one who feels as

> > you do.

> > > Fatigue starts the minute my feet touch the floor when I get out

of

> > bed in

> > > the morning! I tell my husband it just doesn't make sense to be

so

> > tried

> > > when I just wake up. I'm sleeping in to approx. 8:30 or some days

> > even to

> > > 9! " Back when " I used to be an early riser.

> > > By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to

> tired

> > to

> > > do anything more...

> > > I'm still working on my new 'normal' too.

> > >

> > > I dreaded O2 and wouldn't wear it much when I first got it. I had

a

> > lot of

> > > denial going on. I do always use the O2 w/cpap at night and that

> > doesn't

> > > bother me.

> > > Now, I go out with O2, use the scooters in the super-stores and

the

> > > difference is so noticeable that I'm now glad to have the O2.

> > > I'm sorry you are having a 'rough time' . It will pass and then

> > there

> > > will be another rough time.. lol (That isn't very funny is it?)

> > I'm sending

> > > it along anyway, maybe you have a sick humor like I do...)

> > > Keep on keepin' on Merf!

> > > MamaSher; 71, IPF 3-2006, OR.

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

> > >

> > > Scared & Fatigued

> > >

> > >

> > >

> > > Beth that answer you gave Joyce about fatigue hit the nail

on

> > the

> > > head for me. I get so darn fustrated when I cant do things that I

> did

> > 6 months

> > > or a year ago. I find myself wanting to nap in the middle of the

> > afternoon

> > > and thats hard to do when your working. I keep getting mad at

> myself

> > > cause I cant do this or that and that really puts me in a bummer

> > mood. I cant

> > > even walk my dog like I used to. My sats are in the mid to low

90,s

> > most of

> > > the time. Any incline does me in. It is hard to accept this new

> > " normal " .

> > > Not on O2 yet and I hope not for awhile. For some reason going

> > through a

> > > rough time right now. Well thats enough.

> > > Merf dx05 62

> > >

> >

>

[Guest guest]

bruce

what is the other forum that you belong to re: pf?

eventually i do scan your posts, but not word for word

that's true of most of the long posts

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: How People Respond to UsTo: Breathe-Support Date: Monday, November 23, 2009, 5:31 PM

Pink/RudyThe board is no different than if you were a large group of peoplesitting around, except its all the time and easy to come and go. But themood and flavor of the conversation covers everything and changes everyday. I think many find it to be too much at times, back away, come back.It's actually nice that you can judge yourself when too much time isspent on a subject you don't want to talk about right then. I know manynew to the disease see some who are further progressed and they retreatuntil they're further themselves. I, on the other hand, found many ofthose further along than me to give me so much courage to know that asit progresses I can deal with it.To me the board is one thing, to others its something else. But to meits all about learning to live with the disease. Thats living mentally,emotionally, and physically. It's getting good doctors, doing healthythings, its

crying, its laughing. Its Joyce Rudy getting scolded foroverdoing things the other day...lol... but feeling so much happiness forher when she first made the journey to National Jewish.I don't try to read or respond to all posts. I sometimes miss things Iwish I didn't by skipping a post that I thought was on another subject.I've always encouraged others to do the same. But isn't that likefriends. Don't you have some friends you adore, but every once in awhile just aren't up to hearing them talk about a particular subject. Iknow Pink skips many of mine because they're too long, but I'm notbothered by it. We had a couple of parties here on the board (virtual)and there were members who had no interest and skipped over ourinsanity.The board is like any other social gathering you might have, especiallyany support group. You can focus on the things that aren't exactly toyour interest or liking. Or

you can focus on how great it is and all youare able to gain by it. There have been those who couldn't deal withwhat you see here and quickly ran from the board. It's their choice ifliving without the knowledge is a safer mental state.I personally had to understand the worst of the disease so I could learnthat regardless of the course, I could still be ok. Today, Peggy is agreat example. Hearing of her on hospice doesn't scare me regarding myfuture. Quite the opposite. It gives me so much comfort, because I knowwhen I reach her stage i can get help with the cough and avoid pain andstill find quality time for virtual and real hugs and talk.I personally hate to imagine having had to deal with the disease withoutthe two forums I belong to. I feel for those who have found noinformation and no support to help them.>>> From: Sher Bauman bofus6 (AT) verizon (DOT) net>> Subject: Re: Scared & Fatigued> To:

Breathe-Support@ yahoogroups. com> Date: Sunday, November 15, 2009, 3:25 PM>>>>> Merf... I want you to know you are not the only one who feels asyou do.> Fatigue starts the minute my feet touch the floor when I get out ofbed> in the morning! I tell my husband it just doesn't make sense to beso tried> when I just wake up. I'm sleeping in to approx. 8:30 or some dayseven> to 9! "Back when" I used to be an early riser.> By 3,4,or 5 I'm usually 'down' for the rest of the day. Just to tiredto> do anything more...> I'm still working on my new 'normal' too.>> I dreaded O2 and wouldn't wear it much when I first got it. I had alot of> denial going on. I do always use the O2 w/cpap at night and thatdoesn't> bother me.> Now, I go out with O2, use the scooters in the super-stores and the> difference is so

noticeable that I'm now glad to have the O2.> I'm sorry you are having a 'rough time' . It will pass and thenthere> will be another rough time.. lol (That isn't very funny is it?)I'm sending> it along anyway, maybe you have a sick humor like I do...)> Keep on keepin' on Merf!> MamaSher; 71, IPF 3-2006, OR.> Don't fret about tomorrow, God is already there!>> Scared & Fatigued>>>> Beth that answer you gave Joyce about fatigue hit the nail onthe> head for me. I get so darn fustrated when I cant do things that I did6> months or a year ago. I find myself wanting to nap in the middle ofthe> afternoon and thats hard to do when your working. I

keep getting madat myself> cause I cant do this or that and that really puts me in a bummermood. I cant> even walk my dog like I used to. My sats are in the mid to low 90,smost of> the time. Any incline does me in. It is hard to accept this new"normal".> Not on O2 yet and I hope not for awhile. For some reason goingthrough a> rough time right now. Well thats enough.> Merf dx05 62>