Re:

[Guest guest]

I read your post -all of it. Wish I had some words of wisdom to pass along, but I don't. Except your not selfish in my thoughts. stay well & stay safe!

Hello everyone,

I havent slept very well latelyand have decided that I need to talk about what is on my mind. Dont really know if there is anyway for anyone to respond but just my writing this down may help me figure things out.

As you all know, I have been having fainting spells regularly throughout the day, along with these terrible muscle cramps. Physician states both are due to lack of oxygen. One going to my brain..the other to my muscles. It is expected and not much we can do about it. My concentrator in house is set at the highest level and when I use my portable it is on 15 now. I dont go out as much because I am nervous about fainting in public. Anyway,now for my problem....my caregiver tells me almost daily that I am being so very selfish about all of this. She says that I am causing my husband such undue stress and worry. Here he is working everyday so we can continue my insurance coverage and then he comes home and has to take care of me and then throughout the day has to continually worry about me fainting etc. She says that is so SELFISH of me, when I know I could just sign onto

Hospice again, take all that morphine, ativan and lorazapan they give you and die soon. You guys all know about my hospice experience before and how I am alive because I got out of it...so she is right. It will work. I see the worry and stress on my husbands face. I see how tired he is. I know he gets llittle rest because he is always adjusting my oxygen levels, etc. etc. I KNOW all of that. I know all of this caregiving stuff is expensive and I can add up how much we have paid so far. I know all that. And I DO feel bad. I know that each day I am worse, that I faint more etc., but I still have that glimmer of hope that this transtracheal surgery will help. The Dr. said maybe I wouldnt get though the surgery, but then...maybe I will. But, if I do..is it just worse for my family? Everyone is coming from all over the states to be here on Thanksgiving. My

husband has made sure all kids and grandkids would be here. I found out he paid for most of their tickets so they could come. I dont want to be selfish....maybe it is the time to try hospice again, after they all leave. I said I would never never never do it again...but now.......I dont want to be remembered as selfish.

I know this is long . If you read it through...thank you. If not..

L.

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

, I think that your caregiver should

not be telling that you are selfish. It's not her place to be saying

things like that.

She is supposed to be making your life easier not more stressful.

Maybe the agency should be told about her. Definitely, you should tell

your hard working husband that this caregiver is not giving you proper

care. You knoiw what you need, stay strong and demand what you want,

that's why you are here.Have a Happy and Family Filled Thanksgiving.

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

Potter,

reader,carousel lover and MomMom to

Darah

“I’m gonna

be iron like a lion in Zion” Bob Marley

Lentz wrote:

Hello everyone,

I havent slept very well latelyand

have decided that I need to talk about what is on my mind. Dont really

know if there is anyway for anyone to respond but just my writing this

down may help me figure things out.

As you all know, I have been having

fainting spells regularly throughout the day, along with these terrible

muscle cramps. Physician states both are due to lack of oxygen. One

going to my brain..the other to my muscles. It is expected and not

much we can do about it. My concentrator in house is set at the

highest level and when I use my portable it is on 15 now. I dont go

out as much because I am nervous about fainting in public. Anyway,now

for my problem....my caregiver tells me almost daily that I am being so

very selfish about all of this. She says that I am causing my husband

such undue stress and worry. Here he is working everyday so we can

continue my insurance coverage and then he comes home and has to take

care of me and then throughout the day has to continually worry about

me fainting etc. She says that is so SELFISH of me, when I know I

could just sign onto Hospice again, take all that morphine, ativan and

lorazapan they give you and die soon. You guys all know about my

hospice experience before and how I am alive because I got out of

it...so she is right. It will work. I see the worry and stress on my

husbands face. I see how tired he is. I know he gets llittle rest

because he is always adjusting my oxygen levels, etc. etc. I KNOW all

of that. I know all of this caregiving stuff is expensive and I can

add up how much we have paid so far. I know all that. And I DO feel

bad. I know that each day I am worse, that I faint more etc., but I

still have that glimmer of hope that this transtracheal surgery will

help. The Dr. said maybe I wouldnt get though the surgery, but

then...maybe I will. But, if I do..is it just worse for my family?

Everyone is coming from all over the states to be here on

Thanksgiving. My husband has made sure all kids and grandkids would

be here. I found out he paid for most of their tickets so they could

come. I dont want to be selfish....maybe it is the time to try hospice

again, after they all leave. I said I would never never never do it

again...but now......I dont want to be remembered as selfish.

I know this is long . If you read

it through...thank you. If not..

L.

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.1/1141 - Release Date: 11/20/2007 11:34 AM

[Guest guest]

Leanne's nice. I'm not. First, you should tell your caretaker to go

to Hell. She is completely out of line and it is none of her

business. This is a decision between you and your husband. If and

when you ask others then they might respond but with some compassion.

A counselor would listen but wouldn't answer for you because they

know its their position to help you with your struggles, not make

decisions for you.

Now, that being said. It sounds to me like you've got a special

Thanksgiving planned. Don't think beyond that. Then, after that, see

how you are and how you feel. Long term planning then become

Christmas and the end of the year, but most planning should still be

today and tomorrow. How am I this week. How is my husband doing this

week.

Now, I know nothing of your last hospice experience, but I wouldn't

lump all of them together. You might discuss with him and at least

research or locate a better one, not for today, but when it might be

something to again consider, if ever.

Meanwhile talk to him. But mostly feel him. You know him better than

anyone, his strength, his emotions. You know what kind of impact its

taking on you physically and emotionally and on him as well as what

seeing you back in a hospice might do to him. I think the

unprofessional caretaker also fails to take into consideration the

guilt he might feel, the loneliness he might feel, seeing you back in

a hospice situation as before.

Then it becomes a matter of what feels best and right to you today

and this week. Follow that with next week. Then the one after. You'll

know in your heart if or when a change is appropriate. He'll know,

but may be reluctant to admit it.

Last, I know you feel bad about all of it and nothing will change

that. But, you really shouldn't. It's not like this is something you

brought on intentionally. This is illness and the way life happens

and the way true deep love is. The caretaker sure is naive (ok, I

wanted to say stupid) if he/she thinks a hospice will suddenly make

it easy on your husband. Don't think he won't worry if you're there

or feel guilty? There is no way for any of this to be easy.

So, all you can do is a very small bit of planning such as evaluation

of another hospice if the time ever comes it is right. But other than

that, take it one day, one week, at a time. I do believe somehow

things happen in their time and place. Right now I have no idea yours

except feeling that spending Thanksgiving with family is in your

plans and going to be wonderful.

Bruce Moreland 58 IPF 08/07 Dallas/Plano

> Hello everyone,

> I havent slept very well latelyand have decided that I need to

talk about what is on my mind. Dont really know if there is anyway

for anyone to respond but just my writing this down may help me

figure things out.

> As you all know, I have been having fainting spells regularly

throughout the day, along with these terrible muscle cramps.

Physician states both are due to lack of oxygen. One going to my

brain..the other to my muscles. It is expected and not much we can

do about it. My concentrator in house is set at the highest level

and when I use my portable it is on 15 now. I dont go out as much

because I am nervous about fainting in public. Anyway,now for my

problem....my caregiver tells me almost daily that I am being so very

selfish about all of this. She says that I am causing my husband

such undue stress and worry. Here he is working everyday so we can

continue my insurance coverage and then he comes home and has to take

care of me and then throughout the day has to continually worry about

me fainting etc. She says that is so SELFISH of me, when I know I

could just sign onto Hospice again, take all that morphine, ativan

and lorazapan they give you and die soon. You

> guys all know about my hospice experience before and how I am

alive because I got out of it...so she is right. It will work. I

see the worry and stress on my husbands face. I see how tired he

is. I know he gets llittle rest because he is always adjusting my

oxygen levels, etc. etc. I KNOW all of that. I know all of this

caregiving stuff is expensive and I can add up how much we have paid

so far. I know all that. And I DO feel bad. I know that each day I

am worse, that I faint more etc., but I still have that glimmer of

hope that this transtracheal surgery will help. The Dr. said maybe I

wouldnt get though the surgery, but then...maybe I will. But, if I

do..is it just worse for my family? Everyone is coming from all over

the states to be here on Thanksgiving. My husband has made sure all

kids and grandkids would be here. I found out he paid for most of

their tickets so they could come. I dont want to be selfish....maybe

it is the time to try hospice again,

> after they all leave. I said I would never never never do it

again...but now......I dont want to be remembered as selfish.

> I know this is long . If you read it through...thank you. If

not..

> L.

>

>

>

>

>

> ---------------------------------

> Be a better sports nut! Let your teams follow you with Yahoo

Mobile. Try it now.

>

[Guest guest]

This is , Peggy's daughter. My mom has told me so much about you and the trials you have been through. You ARE ALIVE and breathing (fainting yes), by Alive with HOPE, as you said.After hearing your post just now I must say, shame on your care giver, who ever that person is. Why doesn't that person give the slightest amount of credit to the tired, weary husbands love for you! Who is that person to say how your husband is doing or what he is feeling deep inside of him. Perhaps he is moving through his life and loving every minute he has you with him. Perhaps he would not choose the alternative. Perhaps, his love for you and your marriage and family drive and strengthen him. Love knows NO BOUNDS and never quits because it can't.You had a living nightmare with hospice before , but lets not forget that he had that nightmare with you! If you do decide to use hospice again it should be your decision first with the counsel of your husband and his thoughts and NO ONE else's. After all who is living your life other than YOU. If when that day comes ( should it come) maybe hospice can consider following your wishes and not theirs with regard to medications and care.I pray the peace of the Most High God over you. I pray that He alone will guide and direct you in times of trouble. You are not alone and He will never leave you. LIVE ON NANCY, LIVE ON. You are NOT a BURDEN and your husband loves you I'm sure.God Bless you this day and Happy Thanksgiving. You still have plenty to be thankful for. Enjoy your family. :)Peggy here, I totally agree with . She just had to respond to you and trust me she will be praying for you as will I.Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Hello everyone,I havent slept very well latelyand have decided that I need to talk about what is on my mind.  Dont really know if there is anyway for anyone to respond but just my writing this down may help me figure things out.As you all know, I have been having fainting spells regularly throughout the day, along with these terrible muscle cramps.  Physician states both are due to lack of oxygen.  One going to my brain..the other to my muscles.  It is expected and not much we can do about it.  My concentrator in house is set at the highest level and when I use my portable it is on 15 now.  I dont go out as much because I am nervous about fainting in public.  Anyway,now for my problem....my caregiver tells me almost daily that I am being so very selfish about all of this.  She says that I am causing my husband such undue stress and worry.  Here he is working everyday so we can continue my insurance coverage and then he comes home and has to take care of me and then throughout the day has to continually worry about me fainting etc.  She says that is so SELFISH of me, when I know I could just sign onto Hospice again, take all that morphine, ativan and lorazapan they give you and die soon.   You guys all know about my hospice experience before and how I am alive because I got out of it...so she is right.  It will work.  I see the worry and stress on my husbands face.  I see how tired he is.  I know he gets llittle rest because he is always adjusting my oxygen levels, etc. etc.   I KNOW all of that.  I know all of this caregiving stuff is expensive and I can add up how much we have paid so far.  I know all that.  And I DO feel bad. I know that each day I am worse, that I faint more etc., but I still have that glimmer of hope that this transtracheal surgery will help.  The Dr. said maybe I wouldnt get though the surgery, but then...maybe I will.    But, if I do..is it just worse for my family?  Everyone is coming from all over the states to be here on Thanksgiving.  My husband has  made sure all kids and grandkids would be here.  I found out he paid for most of their tickets so they could come.  I dont want to be selfish....maybe it is the time to try hospice again, after they all leave.  I said I would never never never do it again...but now......I dont want to be remembered as selfish.I know this is long .  If you read it through...thank you.  If not..L.

[Guest guest]

...I don't know all the particulars but my reaction is where ever your caregiver came from send her back immediately! You don't have to tolerate such insensitivity . Call the agency and request another caregiver and in the meantime tell this one to please keep her personal opinions to herself. She is waaaay overstepping her bounds.

Perhaps she has her own agenda. Perhaps you are letting her hateful comments trigger in you what we all feel on occasion...being a burden.

You can request an re-evaluation with your "workers" and the "agency".

Yes, , most of us here remember your unbelievable experience with the hospice where you are. (And I am one who thinks Hospice in general is wonderful...in your case not so)

Please do not think you are being selfish to take good care of yourself. Please resist that. Just because she says it, doesn't make it truth. Of course you see stress on your husband's face...he is worried about you and yes, perhaps tired too. But families stick together, in sickness and in health. What a wonderful Thanksgiving you will have with family coming to be with you.

You have value, worth and dignity and don't allow ANYONE to treat you differently. That, be selfish about!

I'm sad to read you are still having these on-going problems. If I had solutions I would surely send them.

, remember, only God knows our truths. Turn to him for reassurance. You are cared about from people all over the world on this board. Don't let this one person spoil your day!

Take charge, pull up your strength like you did in Hospice and tell her she is no longer needed and get someone with compassion.

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

[Guest guest]

AMEN!!!!!!!!!!!

Everytime I reread I get angry. No doctor, caretaker, friend, fellow

forum member, acquaintance, therapist is in position to tell any of

us what to do. They help us, take care of us, diagnose us, support

us. I honestly don't know if my pulmonologist felt I made the best

decision or not in one area. Thats how professional he was in giving

me information and letting me choose. The audacity of your caretaker

is beyond words. Wonder when she thinks she was appointed god?

>

> ...I don't know all the particulars but my reaction is where

ever your caregiver came from send her back immediately! You don't

have to tolerate such insensitivity . Call the agency and

request another caregiver and in the meantime tell this one to please

keep her personal opinions to herself. She is waaaay overstepping her

bounds.

> Perhaps she has her own agenda. Perhaps you are letting her hateful

comments trigger in you what we all feel on occasion...being a burden.

> You can request an re-evaluation with your " workers " and

the " agency " .

> Yes, , most of us here remember your unbelievable experience

with the hospice where you are. (And I am one who thinks Hospice in

general is wonderful...in your case not so)

> Please do not think you are being selfish to take good care of

yourself. Please resist that. Just because she says it, doesn't make

it truth. Of course you see stress on your husband's face...he is

worried about you and yes, perhaps tired too. But families stick

together, in sickness and in health. What a wonderful Thanksgiving

you will have with family coming to be with you.

> You have value, worth and dignity and don't allow ANYONE to treat

you differently. That, be selfish about!

> I'm sad to read you are still having these on-going problems. If I

had solutions I would surely send them.

> , remember, only God knows our truths. Turn to him for

reassurance. You are cared about from people all over the world on

this board. Don't let this one person spoil your day!

> Take charge, pull up your strength like you did in Hospice and tell

her she is no longer needed and get someone with compassion.

>

> Sher; ipf 3-06; OR.

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

>

[Guest guest]

Hi , The first thing I'd do is get rid of your caregiver, negative people like that have no business doing that type of work. People like that derive some kind of sick pleasure in hurting people who are down and vulnerable. Sorry for spouting off, but people like that tick me off. H. NH IPF 04/06 Lentz wrote: Hello everyone, I havent slept very well latelyand have decided

that I need to talk about what is on my mind. Dont really know if there is anyway for anyone to respond but just my writing this down may help me figure things out. As you all know, I have been having fainting spells regularly throughout the day, along with these terrible muscle cramps. Physician states both are due to lack of oxygen. One going to my brain..the other to my muscles. It is expected and not much we can do about it. My concentrator in house is set at the highest level and when I use my portable it is on 15 now. I dont go out as much because I am nervous about fainting in public. Anyway,now for my problem....my caregiver tells me almost daily that I am being so very selfish about all of this. She says that I am causing my husband such undue stress and worry. Here he is working everyday so we can continue my insurance coverage and then he comes home and has to take

care of me and then throughout the day has to continually worry about me fainting etc. She says that is so SELFISH of me, when I know I could just sign onto Hospice again, take all that morphine, ativan and lorazapan they give you and die soon. You guys all know about my hospice experience before and how I am alive because I got out of it...so she is right. It will work. I see the worry and stress on my husbands face. I see how tired he is. I know he gets llittle rest because he is always adjusting my oxygen levels, etc. etc. I KNOW all of that. I know all of this caregiving stuff is expensive and I can add up how much we have paid so far. I know all that. And I DO feel bad. I know that each day I am worse, that I faint more etc., but I still have that glimmer of hope that this transtracheal surgery will help. The Dr. said maybe I wouldnt get though the surgery, but then...maybe I

will. But, if I do..is it just worse for my family? Everyone is coming from all over the states to be here on Thanksgiving. My husband has made sure all kids and grandkids would be here. I found out he paid for most of their tickets so they could come. I dont want to be selfish....maybe it is the time to try hospice again, after they all leave. I said I would never never never do it again...but now......I dont want to be remembered as selfish. I know this is long . If you read it through...thank you. If not.. L.

Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now.

[Guest guest]

Hi Peggy, glad to hear your PFT's are Up. The coughing fit has it settled down!

I Hope your O2 Company realizes that you qualify for Medicare.

Irene

Raynaud's Disease 09/07

PF 03/07

---- Original Message ----

To: Breathe-Support

Sent: Wed, 28 Nov 2007 8:55 pm

Subject:

Hi All, I got home from Gainesville around 6:30 absolutely shot.. Started my PFT's at 1:15 and finished at 2:30. First time I had a coughing FIT. They don't usually bother me to this extent but ---

My Diffusion is UP to 46% from 36%. (YEAH) My Dr. was tickled but then again explained they are totally patient controlled so they are important but not the end all.

I know a lot of you don't think the 6 min. walk is all that BUT she explained that is the best tool to tell exactly how much O2 your body is using.

I had to try to walk without O2 for the STUPID O2 Company they say for me to qualify for Medicare well I went 25 ft. it took 30 sec. dropped to 83. recovery was 20 sec. So I think I did qualify for O2.

I have to go back to have a HRCT and another 6 min. walk.

She and her PA talked to and I until 5:15. She is truly a Jewel.

Oh yes, Chattanooga bunch, She said we all looked happy and wishes each of us her best,

I'll post more later. Gonna collapse now.

Love and Prayers, Peggy

ipf 6/04 Florida

"Worry looks around,

Sorry looks back,

Faith looks up."

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

[Guest guest]

Hi Peggy,

I am doing good. I love my class and feel like it keeps my mind on positive things and not on pf scores and frustrating insurance companies! I have been having fun with my grandkids a lot in between studying and trying to exercise. I am also getting use to the oxygen and want to try the liquid. My biggest complaint is my nose constantly runs when it is cold and a runny nose with tubing is gross! How do all of you handle the cold when it gets below 50? I am thankful for all the encouragement about the cruise and I am planning to go in January and then. . . I will go to Oregon in Feb and South Dakota for May and beach house with all my kids in June again. I have been reading all posts every other day but don't have time to answer many. I do however keep all of you in my prayers daily. I am keeping next October open in case we get together again. I think we

should meet somewhere close to Joyce since traveling is harder for her. Take care Peggy and God bless you- Sarcoid/PF 3/2006 California

Re: .02 on zoloft

As one of those persons with depression and anxiety and found to be100% medication resistant, I've had to get my help from counseling instead. I have tried every family of medication and nearly every medication over the last few years. However, with an incredible counselor I find myself in the best mental condition of my life at a time when I've been diagnosed with a terminal illness.Leanne....I suspect at 25 mg, since that really wouldn't be a therapeutic dosage, you were experiencing a reaction to the medication more than the effects of it. With many psychiatric meds, we can experience side

effects well before we get to a level that would have possibly been beneficial. The other thing to watch for is that with psychiatric medications as well as neurological ones, the side effect often mimics the very illness it's treating. An anti-anxiety pill will make you more anxious, an anti-parkinsons medication, if you don't have parkinsons, may make you have all theparkinsons symptoms, an ADHD medication for one without ADHD will make them extremely hyper. Psychiatric medications are generally alot of trial and error. For instance Prozac, Zoloft, and Paxil are so very similar but people react differently to all three. Wellbutrin hits an entirely different chemical production from our brain. Now, many of the newer ones are combination. I've had friends whose have turned their lives completely around with psychiatric medications. Ihave others who were helped to recover from serious illness with huge quantities and are now able to cope with none. For me, it wasn't a choice, there are just none that I can tolerate that work for me. I once heard four treatments for an mental illness, whether permanent or seasonal, or event oriented listed: individual therapy, group therapy, medications,

and behavior/self control. I have individual. This is my group right here-thank you all for not charging. Medications don't work for me. And, I've learned to do those things behavior wise, like get out when I have no desire, find enjoyable things to do, force myself to make planned pleasant activities an important part of my life. One last mention on medications. They are typically around 20-25% of treatment. In most cases what they do is allow the other three forms of treatment to be effective. Think of them as bringing one to a level that then the therapy or attempts to modify behavior and thinking then become possible.We all have to find the mixture of treatments for any of our illnesses that works for us. Exercise, as you state, is proven beneficial for depression-the problem is many who are depressed are too much so to exercise so need some help to get them going. Light and season is far greater than generally recognized. Light helps mood but season and weather can actually have a similar effect to a bout of claustrophobia. I

would say for those of us suffering from a physical illness the single key may be planned pleasant activities, making the enjoymentof life as important to us as our jobs or cleaning our homes, or grocery shopping. It is making sure that we don't let a period of greater pain or the weather or a heavier work load compromise making time for ourselves and those things we enjoy.> > > > >> > > > >> > > > > Hi Group!> > > > >> > > > > I finally woke up feeling soooo much

better today. I was worried> > > > > yesterday that having had 2 antibiotics. prednisone, etc. did > > not> > > > help> > > > > me. Maybe I have just been so worried but didn't realize it. And> > > > I had> > > > > a good night's sleep last night so that was the key, I guess. I> > > > had> > > > > been losing my cool, etc. Poor Eddie & ! I resumed taking > > the> > > > > zoloft last week and now I know why I was taking it in the first> > > > place.> > > > >> > > > > , Eddie, and I have been discussing the what-ifs: if they> > > > offer> > > > > her a job in Nashville, if she gets an offer in Dalton. I am all> > > > for> > > > > the one in Dalton because it would be so much cheaper forher. > > She> > > > has> > > > > no money saved up to be out on her own and does not enjoy> > > > > driving and the driving in Nashville is worse than Atlanta and > > she> > > > > hasn't had much experience. My brother is President of the> > > > Tennessee> > > > > Apartment Association and he goes to Nashville quite frequently > > and> > > > he> > > > > admits that the driving is tricky and he has experience.> > > > >> > > > > seems to like the job at ACE. They all work togetheras a> > > > team.> > > > > Plus, it is a ministry and she would love more than anything to > > help> > > > > children. Their curriculum is used all over the world. Their> > > >

company> > > > > has a strict dress code policy. Ladies must wear skirts or > > dresses,> > > > > just below the knee or longer, even when bending over. Pantyhose> > > > must> > > > > be worn at all times/ Closed-toed shoes with closed heels must > > also> > > > be> > > > > worn. NO sandals, NO flipflops. Shirts must be no lower than the> > > > > clavicle. I guess the best way to say this is: the clavicle must> > > > be> > > > > covered. NO sleeveless items are to be worn.> >

> > >> > > > > seems to have no problem with the dress code. She has > > never> > > > worn> > > > > anything sleeveless and has always preferred not to. Skirtsand> > > > dresses> > > > > for , since she is short, have always been just below the> > > > knee.> > > > > hates pantyhose (just as most of us do). When one is NOT > > at> > > > work,> > > > > they can dress however they please. AND they can go to the > > church> > > > of> > > > > their own choosing, but they just

have to go and belong to a> > > > church.> > > > > has always gone to church all of her life.> > > > >> > > > > Eddie is skeptical of driving in Nashville and I am > > skeptical> > > > > because she cannot get herself up in the mornings, remember to > > take> > > > her> > > > > medicine, etc.> > > > >> > > > > So we are waiting for the phone to ring. I am waiting for the> > > > company> > > > > that she had an interview with last Wednesday to call. I don't > > know> > > > > what is waiting for.> > > > >> > > > > I had to go back and review the messages. Teri, I am glad that > > Jon> > > > had> > > > > a good report.> > > > >> > > > > Everyone take care!> > > > >> > > > > Toodles!> > > > >> > > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > ------------ --------- --------- ---> > > > Be a better pen pal. Text or chat with

friends inside Yahoo! > > Mail. See> > > how.> > > >> > >> >> > > > > > > ------------ --------- --------- ---> Never miss a thing. Make Yahoo your homepage.>

Never miss a thing. Make Yahoo your homepage.

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

I also saw ABC and was very disappointed. I wonder if

NBC or CBS did a better job.

IOF 2/07 IL

--- Peggy wrote:

> Tonight on ABC news they told about Evel's passing

> but didn't say one

> word about IPF.

> GGGGRRR I thought we might get out there a bit. I am

> so sorry for his

> family.

> The Orlando station said he died of an incurable

> lung disease. Amazing.

>

>

>

> Love and Prayers, Peggy

> ipf 6/04 Florida

> " Worry looks around,

> Sorry looks back,

> Faith looks up. "

>

>

>

>

>

________________________________________________________________________________\

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[Guest guest]

Well, you wouldn't want the Orlando reporters to have to look up

those big words would you?

The later newscasts did mention the cause, ESPN every thirty minutes

too, but the problem is they say " died of diabetes and pulmonary

fibrosis, a rare lung disease " and thats it......so not going to

educate anyone or lead anyone to look it up. In fact, I'm a bit tired

of hearing the word " rare " used with it. Its not that rare. Not that

many alive with it only because it kills. But " rare " tends to make

you dismiss it like some strange Amazon rare bug that bites one

person a year. Why not state how many people a year it kills? Why not

mention that there is currently no cure? Even the order.....I don't

know but suspect that the PF came first and the diabetes was a

secondary disease. Well, hearing the jumps he made or didn't make I

guess is more interesting.

>

> > Tonight on ABC news they told about Evel's passing

> > but didn't say one

> > word about IPF.

> > GGGGRRR I thought we might get out there a bit. I am

> > so sorry for his

> > family.

> > The Orlando station said he died of an incurable

> > lung disease. Amazing.

> >

> >

> >

> > Love and Prayers, Peggy

> > ipf 6/04 Florida

> > " Worry looks around,

> > Sorry looks back,

> > Faith looks up. "

> >

> >

> >

> >

> >

>

>

>

>

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[Guest guest]

, When I was diagnosed first was the clubbing and dark nail beds. That sent me to x-Ray that sent me to HRCT. It was very clear on the HRCT honeycombing in the bottom and quite a bit of scaring throughout. My Dr. at Shands spends as much time as I need, explained that our immune systems have just got nuts and are trying to heal what doesn't need it =scaring. If you have a Teaching University Hospital it would be your best bet for good treatment. They are very interested to teach about us and help us. I have IPF, diagnosed three and a half years ago. I feel great and look VERY healthy, I just have a problem breathing. But guess what, I don't have an expiration date anywhere on my fluffy self..So I grab my BOA (bag of air) and go.Gotta run this is Gods Day and I just have to gussy up a bit for Him. Oh, I'm bringing my highest praise this beautiful morning, "Have a God Blessed Wonderful Day" Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Peggy I live in Kansas and was diagnosed with PF in Sept of 06, but the Pulmonary doctor who did the exam didn't tell us or begin any treatment till I ended up in the ER in August of 07. The ER doctor asked me why I didn't tell her about my illiness, asking what illiness? She then informed me that I had PF of some type. I still don't know what type of PF I have and wonder if it really matters now? Thanks for asking! PF-06-07/Kansas Re: is there ever a good time?, I am so sorry for the loss of your friend. My husbands brother was on the Skyway Bridge when it wend down in 1980, He was 43 I think. Way to young to pass. hasn't been to a funeral since, not even his Moms or my Moms. We understand he just can't do it . Hope he musters up courage for my children. I am sure he will. But the point is it's hard to accept death. We sign off with our name, diagnosis and state. If you don't mind. I was just wondering where you are. If there is a University near that would be the place to go. God Bless You.Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up."Good morning all! Jim, hang in there my friend, funerals aren't my thing either, I buried too many friends in that war of long ago. This summer I had to read of my old friend from high school passing in the newspaper-no one from his family called me. The last time we chatted he had some ills, but was doing just fine, then he died! I couldn't attend his funeral-did pay my respects-but didn't want to see him like that-just wanted to remember all the good times we had! I also know the feeling that we all get from outsiders-like aren't you dead yet? The oxygen tells all, yes? From what I remember Alaska is beautiful and I had the feeling once you left the pavement, you were in a totally different world. Someday(God willing) I want to return. In case your all wondering why this guy is chatting away. I just had a bad day yesterday. It was a bump in the road that really got hold of me. My oxygen had to be raised, experienced shortness of breath just walking into the doctors office, was so stuffup in my nose that the oxygen couldn't get through. Also my primary care doctor is trying to find a pulmonary doctor that specializes in PF. So far no progress! I'm sure most all have had simular experiences. Thanks for listening! Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how.

[Guest guest]

, Peggy and all, CBS at least should have done a better job. One of our people's (from the Foundation) brothers works for CBS and he was going to interview Evel's granddaughter and get the correct information out there about pulmonary fibrosis. His mom had passed from pulmonary fibrosis over a year ago. Various media sources mentioned that he had pulmonary fibrosis. The API did. This is very frustrating..... Leannekiki boettin wrote: I also saw ABC and was very disappointed. I wonder ifNBC or CBS did a better job. IOF 2/07 IL--- Peggy <pac1773cfl (DOT) rr.com> wrote:> Tonight on ABC news they told about Evel's passing> but didn't say one > word about IPF.> GGGGRRR I thought we might get out there a bit. I am> so sorry for his > family.> The Orlando station said he died of an incurable> lung disease. Amazing.> > > > Love and Prayers, Peggy> ipf 6/04 Florida> "Worry looks around,> Sorry looks back,> Faith looks up."> > > > > __________________________________________________________Get easy, one-click access to your favorites. Make Yahoo! your homepage.http://www.yahoo.com/r/hs

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[Guest guest]

Here is some food for thought. I found the partial explanation about PF on the Canadian Lung Association web site:

"Pulmonary fibrosis can be a mild or severe disease: it can be so mild as to cause few symptoms, or it can be fatal".

That is not my understanding of PF. Am I wrong? Diane IPF June 07New Brunswick, Canada

Re:

, Peggy and all,

CBS at least should have done a better job. One of our people's (from the Foundation) brothers works for CBS and he was going to interview Evel's granddaughter and get the correct information out there about pulmonary fibrosis. His mom had passed from pulmonary fibrosis over a year ago. Various media sources mentioned that he had pulmonary fibrosis. The API did. This is very frustrating. ....

Leannekiki boettin <netwiz3yahoo (DOT) com> wrote:

I also saw ABC and was very disappointed. I wonder ifNBC or CBS did a better job. IOF 2/07 IL--- Peggy <pac1773cfl (DOT) rr.com> wrote:> Tonight on ABC news they told about Evel's passing> but didn't say one > word about IPF.> GGGGRRR I thought we might get out there a bit. I am> so sorry for his > family.> The Orlando station said he died of an incurable> lung disease. Amazing.> > > > Love and Prayers, Peggy> ipf 6/04 Florida> "Worry looks around,> Sorry looks back,> Faith looks up."> > > > > ____________ _________ _________ _________ _________ _________ _Get easy, one-click access to your favorites. Make Yahoo! your homepage.http://www.yahoo. com/r/hs

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[Guest guest]

And I thought the American Lung Association was lost.

First, of course, the don't even mention the disease prominently. You

have to go to the glossary. I read the entire write up. I might

better wait a while before writing them as right now it would start

off as " you people are a bunch of ^%@^%@$ & ^ !%$#!!#$@ & ^% !$#*(*%($%!#

idiots. "

I will be contacting them and suggest others do the same. Relatively

ignoring us is one thing, but such inaccuracies as within that site.

Oh, guess I did find the cause of mine now though in their wonderful

list. It must be either from my Maple Bark Splitting Days or my

Paprika Splitting Days.

Out of curiosity, I did also do a search of " Goulet " on their

site, just to see in their news and announcements if he was

mentioned, since he was from Canada. Nope.......

Bruce Moreland 58 IPF 08/07 Dallas/Plano

>

> > Tonight on ABC news they told about Evel's passing

> > but didn't say one

> > word about IPF.

> > GGGGRRR I thought we might get out there a bit. I am

> > so sorry for his

> > family.

> > The Orlando station said he died of an incurable

> > lung disease. Amazing.

> >

> >

> >

> > Love and Prayers, Peggy

> > ipf 6/04 Florida

> > " Worry looks around,

> > Sorry looks back,

> > Faith looks up. "

> >

> >

> >

> >

> >

>

> ____________ _________ _________ _________ _________ _________ _

> Get easy, one-click access to your favorites.

> Make Yahoo! your homepage.

> http://www.yahoo. com/r/hs

>

>

>

>

>

> Get easy, one-click access to your favorites. Make Yahoo! your

homepage.

>

>

>

> Looking for a X-Mas gift? Everybody needs a Flickr Pro

Account.

>

>

>

> http://www.flickr.com/gift/

>

[Guest guest]

Diane,

I've never heard of any form that was so mild that you hardly know you have it or that is not ultimatly fatal.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > > Tonight on ABC news they told about Evel's passing> > but didn't say one > > word about IPF.> > GGGGRRR I thought we might get out there a bit. I am> > so sorry for his > > family.> > The Orlando station said he died of an incurable> > lung disease. Amazing.> > > > > > > > Love and Prayers, Peggy> > ipf 6/04 Florida> > "Worry looks around,> > Sorry looks back,> > Faith looks up."> > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> Get easy, one-click access to your favorites. > Make Yahoo! your homepage.> http://www.yahoo. com/r/hs > > > > > > Get easy, one-click access to your favorites. Make Yahoo! your homepage. > > > > Looking for a X-Mas gift? Everybody needs a Flickr Pro Account.> > > > http://www.flickr.com/gift/>

[Guest guest]

Love Ya! P ((HUGS))james wallman wrote: , You need to know........in the process of expressing your thoughts to those that have provided comfort to you..........you have passed on that comfort and those good feelings to others.......myself included......back in "the day" we called it a love-in. Thank You jim IPF 05 alaskaLeanne Storch

wrote: . Wow. Leanne.denise randel <dnsrndl> wrote: Joyce, I have been thinking all day about how much you mean to me and how you have impacted my life. It has been a year and 8 months since I joined this site. I had been desperately searching for answers when I stumbled on Breathe-Support. My mom had just died of lung cancer and a week later I got the diagnosis of

advanced PF. I was so scared, all I could think of was that I was going to be buried next to her soon and felt that I was already falling into that dark deep hole. Then you and Peggy, Leanne, Barb, Ronnie, A, Grey, P. and of course our wonderful Ginger, welcomed me with open arms, gave advice, prayers, support and a whole mountain of love that brought me out of that dark hole, shook off the fear and helped me to “breathe” again. You walked me through the biopsy, prayed when I had the infection afterwards, comforted me when I was at the bottom of the roller coaster, laughed with me at the top and most of all you gave me hope. Hope that I would make it past my 1 year prognosis, hope that I could live with this, hope that I would still enjoy my family, hope that I would still enjoy my life. I truly can’t imagine how I would have gotten

through this time without all of your dear “mothering,” especially since my own dear mother is gone. In my imagination you come to visit, stay at my beach house and walk with me on my little stretch of sand. We watch the waves, laugh, pray, and laugh some more. I treat you to a wonderful lunch and a deluxe spa pedicure and of course, a great dessert! I wish I could somehow repay you for all you have done and continue to do. I wish I could pray like Ginger and words of comfort would fill this page and give you the same hope you have instilled in me. But mainly I wish that God would give us another 10 years with you, that you would hit another long plateau, that life would be easier for you, that you would have no pain, no frustration. I love you Joyce, pray for you always, and thank God for you daily and for all the blessings you

bring. Sarcoid/PF 3/2006 California Re: Hi All Sher, It is so hard to be cheerful when you are angry. I am angry because I have turned into someone else. I've lost my Queenship around here! I am becoming more and

more helpless and I hate it. It is just something that I have to work through and you guys just have to love me and tolerate me and my grumpies. It is in the rule book. Hugs, Joyce D. (ps. I like "the grin and bearies")PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Joyce...I don't think you have the grumpies. I think you have the grin-and bearies.> I'm sure sorry you have so much on your plate. Wish I could help you carry it.> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Never miss a thing. Make Yahoo your homepage. Never miss a thing. Make Yahoo your homepage. P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

I took a peek at your new little bundle. I want to hold him. It really makes my arms ache for a baby.Congratulations Grandpa.  Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Thanks for the worry about little old me.  On my second day of 10 taking Levaquin 750 mg for my D_ _ nose.  It is just pluged up with mucus, no runny nose just blow the stuff out all the time.  It is really hard having 8LPM going up your nose with no where for it to go  LOL  So my SOB is way up their or way down on the O2 numbers.My six week on grand baby is come over for a couple of days next week so don't want to give him anything.   Can't help myself I just have to give you his web site     http://babyboone.ourbabyhomepage.com/          P  UIP  8/00  ILdenise randel <dnsrndl> wrote:,  I used to worry about you carrying the wash up the stairs.  Now I am worried that you are NOT carrying the wash upstairs.  I am so sorry to hear that you are on 8 LPM.  I am sending lots of prayers your way.  Take good care of yourself-    Sarcoid/PF  3/2006   California Re: My PFT's Numbershttp://members. tripod.com/ noairtogo/ pft.htmhttp://home. columbus. rr.com/allen/ pft_interpretati on.htmInfo on that the number mean   PIrn3189aim (DOT) com wrote:Hi All,This are my bad numbers. Comments: Effort GoodLung VolumesFEV1/FVCPredicted 85Pre Meas 81TLCPredicted 5.30Pre Meas 4.28%           81RVPredicted 1.70Pre Meas 0.46%           27RV/TLCPredicted 31Pre Meas 11DLCO Predicted 28.1Pre Meas 20.4%            73DL AdjPredicted 28.1Pre Meas 20.8%           74Interpretation:Flow rates are normalTotal Lung capacity is normal but residual voulme is reducedDiffusion Capacity is mildly reduced when corrected for HemoglobinIncreased airway reistanceIreneRaynaud's Disease 09/07PF 03/07CanadaMeet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. P     PM (Polymositis) 12/98,   UIP 8/00,   o2 24/7 8/04,    PH 3/06,    ILL    yo 59Looking for last minute shopping deals? Find them fast with Yahoo! Search. P     PM (Polymositis) 12/98,   UIP 8/00,   o2 24/7 8/04,    PH 3/06,    ILL    yo 59Be a better friend, newshound, and know-it-all with Yahoo! Mobile.Try it now.Looking for last minute shopping deals? Find them fast with Yahoo! Search. P     PM (Polymositis) 12/98,   UIP 8/00,   o2 24/7 8/04,    PH 3/06,    ILL    yo 59Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

...I tried to look at baby but this site doesn't work.

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

[Guest guest]

Her try it againhttp://babyboone.ourbabyhomepage.com/ PSher Bauman wrote: ...I tried to look at baby but this site doesn't work. Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there! P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

P,

I'm so glad that you posted Boone's pictures. What a doll! I love the picture of him that looks like he is praying. It is amazing. I know you are proud of him and rightly so. Isn't it awesome how much you can love something so small?

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. Hi All,> > This are my bad numbers. > Comments: Effort Good> > Lung Volumes> FEV1/FVC> Predicted 85> Pre Meas 81> > TLC> Predicted 5.30> Pre Meas 4.28> % 81> > RV> Predicted 1.70> Pre Meas 0.46> % 27> > RV/TLC> Predicted 31> Pre Meas 11> > DLCO > Predicted 28.1> Pre Meas 20.4> % 73> > DL Adj> Predicted 28.1> Pre Meas 20.8> % 74> > Interpretation:> Flow rates are normal> Total Lung capacity is normal but residual voulme is reduced> Diffusion Capacity is mildly reduced when corrected for Hemoglobin> Increased airway reistance> > Irene> Raynaud's Disease 09/07> PF 03/07> Canada> Meet the new AOL.ca. Free radio, music, videos, news & entertainment â€" with a Canadian perspective.> > > > > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search. > > > > > > > > > > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.> > > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.> > > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59> > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.>

[Guest guest]

,

Since I have been on 8L I have been having more nosebleeds. Since I am on Plavix it is a major bleeding. I had two this week that seemed to never end. I had toilet paper stuffed up my nose and trying to survive with one nostril available. Tried the mask and that was a fiasco.

The mucus is fun also. Aaaargh. Just when I had all the answers, now it is a whole new ballgame. Get better.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. Hi All,> > This are my bad numbers. > Comments: Effort Good> > Lung Volumes> FEV1/FVC> Predicted 85> Pre Meas 81> > TLC> Predicted 5.30> Pre Meas 4.28> % 81> > RV> Predicted 1.70> Pre Meas 0.46> % 27> > RV/TLC> Predicted 31> Pre Meas 11> > DLCO > Predicted 28.1> Pre Meas 20.4> % 73> > DL Adj> Predicted 28.1> Pre Meas 20.8> % 74> > Interpretation:> Flow rates are normal> Total Lung capacity is normal but residual voulme is reduced> Diffusion Capacity is mildly reduced when corrected for Hemoglobin> Increased airway reistance> > Irene> Raynaud's Disease 09/07> PF 03/07> Canada> Meet the new AOL.ca. Free radio, music, videos, news & entertainment â€" with a Canadian perspective.> > > > > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search. > > > > > > > > > > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.> > > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.> > > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59> > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.>

[Guest guest]

Joyce...I'm sorry for what you are enduring!

God be with you.

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

[Guest guest]

Joyce...I'm sorry for what you are enduring!

God be with you.

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

[Guest guest]

Doggone , I just can't connect. I've done it many times.

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