Re: Beth

[Guest guest]

MB

Figured I better show up since the last time I was seen was with you.

Didn't want people thinking you had murdered me or something....lol

>

> Welcome back Bruce! So happy you're with us once again!

>

> Beth

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>

>

>

>

>

> Back but very disappointed. Stop the

insanity, please, friends.

>

>

>

> I have been ready for a couple of days to start reading and posting

> again. However, I just haven't been up to stepping into the situation

> taking place on this forum. I haven't read all the posts and don't

know

> all the details of what kicked things off but I've seen more ugliness

in

> catching up on posts than I imagined and more anger and feelings hurt.

> Anyone who says its not personal hasn't read closely enough.

>

> There are many many many apologies called for. I encourage any of you

to

> reread your posts and some of the statements or words. It has

escalated

> with each new post it seems. This isn't patients versus caregivers,

its

> supposed friends versus friends. I care for all those involved posting

> on this subject but I'm angry and disappointed too.

>

> A few comments of my own. First, I refuse to offer an opinion on who

> should be allowed on this forum. That isn't my place. To Leanne or

> whomever posted the poll. It was a mistake. Some things are best not

> turned over to the members. Allowing or not allowing someone here is a

> decision the moderators and administrators and board owners should

make

> on an individual basis. You make it with every new member and you have

> the right with any existing members. In the past I've seen you very

> liberal in not banning people but just professionally dealing in

private

> with any who you have problems with.

>

> Now as to members. If your problem is with someone someone says to you

> and another individual here then don't air it in public. Talk to them

> through email in private and work it out. If you can't work it out,

then

> email the moderator, but don't expect them to solve it either. If you

> don't like someone's posts then don't read them. It's simple. I was

told

> early by several in sometimes a nice way and sometimes not that my

posts

> are too long. My response was and is, just skip over them all if you

> like.

>

> One comment on the huge issue of caretakers and patients reading each

> other's posts. Look, its easy enough to get on any forum in yahoo with

a

> made up profile or any other way. No forum can control who reads what.

> This participation or reading is something of trust between a patient

> and caregiver. Its the same with spouses on any forum. If you want a

> place of your own just ask your spouse or child or parent or friend

not

> to intrude on it. You know we say that no doctors or nurses but just

> patients. Now I'll bet there are lurkers on all forums who don't

> " belong " but they're keeping quiet, learning, and not hurting

anything.

>

> See, I don't care. I generally have no problems with anyone here. Are

> there those whose posts I like more than others? Of course. Now, I'm

not

> going to point out any of the posts made that bother me. No one should

> assume its their post or not theirs. While it may be some of those

that

> have obviously been problematic, its others that have slipped through

> too. This discussion has not been one held at a decent appropriate

> level. Even some of the best posts have slipped in an offensive word

or

> two if one wanted to read carefully and react.

>

> So, please, everyone, come back to being those who I love and who mean

> so much to me. Stop on this subject. Show the love this forum is known

> for. To the moderators and administrator, please get rid of this poll,

> for the first time I know ban more publishing on this topic, try to

talk

> off board to some of those hurt by the ugliness and some of those who

> have offended others, and go back to deciding by whatever rules or

means

> you want who is allowed here and isn't.

>

> Now, I will only post and respond on other topics. I have no intention

> of going back and reading carefully the posts I've missed in the last

> three weeks. I've seen more than I care to in just scanning the

digests.

> I love the forum and love those here. However, what I've seen makes me

> want to cry and has created a very unhealthy environment for all of

us.

> Don't we have more important things to deal with? I love you all, but

I

> don't love some of the actions and words.

>

> Bruce Moreland 58 UIP 08/07

>

[Guest guest]

Bruce,

Well I hadn't thought about it but you're right. I'd be the first to have suspicion cast upon her wouldn't I? Don't want the sheriff comin after me! Glad you're back and even happier that your trip was so successful!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Back but very

disappointed. Stop theinsanity, please, friends.>>>> I have been ready for a couple of days to start reading and posting> again. However, I just haven't been up to stepping into the situation> taking place on this forum. I haven't read all the posts and don'tknow> all the details of what kicked things off but I've seen more uglinessin> catching up on posts than I imagined and more anger and feelings hurt.> Anyone who says its not personal hasn't read closely enough.>> There are many many many apologies called for. I encourage any of youto> reread your posts and some of the statements or words. It hasescalated> with each new post it seems. This isn't patients versus caregivers,its> supposed friends versus friends. I care for all those involved posting> on this subject but I'm angry and disappointed too.>> A few

comments of my own. First, I refuse to offer an opinion on who> should be allowed on this forum. That isn't my place. To Leanne or> whomever posted the poll. It was a mistake. Some things are best not> turned over to the members. Allowing or not allowing someone here is a> decision the moderators and administrators and board owners shouldmake> on an individual basis. You make it with every new member and you have> the right with any existing members. In the past I've seen you very> liberal in not banning people but just professionally dealing inprivate> with any who you have problems with.>> Now as to members. If your problem is with someone someone says to you> and another individual here then don't air it in public. Talk to them> through email in private and work it out. If you can't work it out,then> email the moderator, but don't expect them to

solve it either. If you> don't like someone's posts then don't read them. It's simple. I wastold> early by several in sometimes a nice way and sometimes not that myposts> are too long. My response was and is, just skip over them all if you> like.>> One comment on the huge issue of caretakers and patients reading each> other's posts. Look, its easy enough to get on any forum in yahoo witha> made up profile or any other way. No forum can control who reads what.> This participation or reading is something of trust between a patient> and caregiver. Its the same with spouses on any forum. If you want a> place of your own just ask your spouse or child or parent or friendnot> to intrude on it. You know we say that no doctors or nurses but just> patients. Now I'll bet there are lurkers on all forums who don't> "belong" but they're keeping quiet,

learning, and not hurtinganything.>> See, I don't care. I generally have no problems with anyone here. Are> there those whose posts I like more than others? Of course. Now, I'mnot> going to point out any of the posts made that bother me. No one should> assume its their post or not theirs. While it may be some of thosethat> have obviously been problematic, its others that have slipped through> too. This discussion has not been one held at a decent appropriate> level. Even some of the best posts have slipped in an offensive wordor> two if one wanted to read carefully and react.>> So, please, everyone, come back to being those who I love and who mean> so much to me. Stop on this subject. Show the love this forum is known> for. To the moderators and administrator, please get rid of this poll,> for the first time I know ban more publishing on

this topic, try totalk> off board to some of those hurt by the ugliness and some of those who> have offended others, and go back to deciding by whatever rules ormeans> you want who is allowed here and isn't.>> Now, I will only post and respond on other topics. I have no intention> of going back and reading carefully the posts I've missed in the last> three weeks. I've seen more than I care to in just scanning thedigests.> I love the forum and love those here. However, what I've seen makes me> want to cry and has created a very unhealthy environment for all ofus.> Don't we have more important things to deal with? I love you all, butI> don't love some of the actions and words.>> Bruce Moreland 58 UIP 08/07>

[Guest guest]

Beth, Thank you for responding to my questions. I did not know these particular initials. I have had a 6mw and pulmonary function tests and four scans lung scans. I actually developed ILD in 2 weeks. How exactly and what form is what I am yet to know. My pulmo was too scared to do anything. At first he saw me and recommended a biopsy. Told me to go home and think about it. I did, I returned with a Yes I will have a biopsy. Then he started looking at my chart again. Asked me if I knew which anesthetics were safe for me. I had a protocol and someone he could speak to about it, however he decided he would not do the biopsy. Bottom line he chickened out. Just like the GI docs (more than one) after a GI bleed. Chickened out. All of them did. The

problem with breathing tests and all is that it is done threw plastic. For my other condition plastic is bad it can actually finish up my lungs. How I can get around all of this is the question and who would be brave enough to take a chance and find a way.

Thanks for the link. I appreciate it. The rest of them pretty much familiar with.

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14

< Click on me !!

I'm Back!

Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on

room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Beth, Do not worry about it, maybe yahoo glitch. I tried to copy and paste it to the browser as well. That did not work either. Someone has sent me the page so I have it. Thank you !!

I had a bunch of tests done. I only got mine one of 2 ways. My Docs are the ones not cooperating. Finding a Doctor willing to treat you with the other is the hard part. Doctors do not want to touch patients with my condition due to high risk I guess. makes getting help even more difficult. You go from one to another to another, you feel like you are just running in circles with them.

It would have been best had he done it back then. Now I am worse and do not know what would happen at this point.

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14

< Click on me !!

I'm Back!

Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on

room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

MB,

Thanks for the info. I've never had any crackles, so I guess that's why I thought that. This is the first I've heard of this.

Keep me on the ball! lol

TerTerry Pennisi 11/07 IPF Nevada

From: alphajkw <alphajkwyahoo (DOT) com>Subject: Regarding cracklesTo: Breathe-Support@ yahoogroups. comDate: Thursday, July 3, 2008, 6:01 AM

Hi all, I thought I would put in my two cents worth about crackles. My doctor hears mine all the time and when I have been in the hospital for pneumonia and congestive heart failure (which has been about 6 times in the last 8 years), everybody who listens to my lungs when they do the vitals hears them. When I am in a quiet room and the air is particularlly dry and I breathe with my mouth open, I hear them myself through my mouth. It does sound like some plastic wrap crinkling. It is fun to watch someone's face who doesn't know I have a lung problem listen to my lungs for the first time. You can see the intensity of their face as they listen again and the quizzical look comes on their face. Ha! Usually it is when I am at a new doctor's offce for the 1st time and the nurse comes in to do the vitals before the doc comes in. I usually don't keep them in suspense for very long so they don't

freak out and think they have found some weird thing. Jim IPF 2000Sarcoidosis 2000PH 2007

[Guest guest]

Terry

I'd be glad to send you my crackles. The pulmonologist is always so

funny as we have a great relationship and exchange humor. He listens at

appointments where we're just talking or other reasons but he has to at

least listen and then says " surprise its still there " and we both laugh.

I've had the crackles since the diagnosis.

>

> From: alphajkw alphajkwyahoo (DOT) com>

> Subject: Regarding crackles

> To: Breathe-Support@ yahoogroups. com

> Date: Thursday, July 3, 2008, 6:01 AM

>

>

>

>

> Hi all,

> I thought I would put in my two cents worth about crackles. My

> doctor hears mine all the time and when I have been in the hospital

> for pneumonia and congestive heart failure (which has been about 6

> times in the last 8 years), everybody who listens to my lungs when

> they do the vitals hears them. When I am in a quiet room and the air

> is particularlly dry and I breathe with my mouth open, I hear them

> myself through my mouth. It does sound like some plastic wrap

> crinkling.

>

> It is fun to watch someone's face who doesn't know I have a lung

> problem listen to my lungs for the first time. You can see the

> intensity of their face as they listen again and the quizzical look

> comes on their face. Ha! Usually it is when I am at a new doctor's

> offce for the 1st time and the nurse comes in to do the vitals before

> the doc comes in. I usually don't keep them in suspense for very

> long so they don't freak out and think they have found some weird

> thing.

>

> Jim

> IPF 2000

> Sarcoidosis 2000

> PH 2007

>

[Guest guest]

Peggy,

They are in my album, can't you see them?

I'm whooped tonight but it was a good day today.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

BethHey kiddo, what happened to the pictures ??? I am just tickled your having such a good time.

Love and Prayers, Peggy

IPF 2004, Florida

"Worry looks around,

Sorry looks back,

Faith looks up."

[Guest guest]

Yep I saw them. Matt is just so cute. Take some more. You know I love pictures.They didn't show up in the new pictures from the e-mail. I wanna see one of you and your skinny self.  Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

Yep I saw them. Matt is just so cute. Take some more. You know I love pictures.They didn't show up in the new pictures from the e-mail. I wanna see one of you and your skinny self.  Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."