Have a question about the tubing we wear...............

[Guest guest]

I know there are many more people that have worn the oxy. tubing a

lot longer than me. This week, it has been over a year now, 24/7. I

can not go without it at all. Here is my dilemma.

You all may have suggested to me the different ways to wear the

cannula, upwards or downwards (and in her lady's chamber) whatever.

Anyhow, it is the most devastating part of PF for me. Others may be

different. I have come to a point that I can not take it anymore

with the cannula. I even tried clothes pins on my clothes, etc. you

name it.

I am becoming increasingly depressed as too, I still am wearing the

patch and have absolutely no feeling on the left side of my face and

head since my detached retinal surgery last March. I have an appt

with surg Nov. 23rd to discuss cataract surg. The eye surg I am not

concerned about, that will be great, wish I could have it today, it

is the numbness of the face and head, eye patch which if I don't wear

it, everything is still blurry.

I just would like to have the group here give me some suggestions as

how to deal with the tubing or place it so it doesn't pull.

I am different, as every one of us is, in that I have so much energy,

am always hopping up and down, but slower these days, very busy, and

I keep the level of oxy. #5 when alone except when I am working

around here. Then 7-8. Actually the only disability I feel (because

I have no pain anywhere)is this tubing.

I hope someone here can give me some suggestions that will help me

with this problem. I know we all are in it and facing it each and

every day. But since the incident about 2 wks ago with the workmen

in here shutting off the power without telling me and I got sick, and

was sick for 3 days, I have become ultra depressed and can't seem to

snap out of it.

I LOVE YOU THIS DAY !!

Lou - (74) richmond-va

IPF - 02

[Guest guest]

ou,

I'm sorry that you're feeling so rotten. I've been on O2 24/7 for 2 years and 4 months and while it's still an inconvenience in many ways I've adjusted. Peggy takes her tubing and loops it around the back of her neck. This gives her more leeway and it doesn't pull on her nose so much. I don't do that though I will if it starts to bother me.

I hope that others can offer a suggestion that might help make all this easier for you. There is no point in denying that this is all very difficult. I do my best to put on a happy face and keep a positive attitude but the truth is this disease sucks and I loathe it!

You've probably already done this but have you thought about an anti-depressant? If you're already on one, you may need a different one. Do what you have to do to feel better. Don't hesitate. You have to take care of you!!

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

Have a question about the tubing we wear...............

I know there are many more people that have worn the oxy. tubing a lot longer than me. This week, it has been over a year now, 24/7. I can not go without it at all. Here is my dilemma.You all may have suggested to me the different ways to wear the cannula, upwards or downwards (and in her lady's chamber) whatever. Anyhow, it is the most devastating part of PF for me. Others may be different. I have come to a point that I can not take it anymore with the cannula. I even tried clothes pins on my clothes, etc. you name it.I am becoming increasingly depressed as too, I still am wearing the patch and have absolutely no feeling on the left side of my face and head since my detached retinal surgery last March. I have an appt with surg Nov. 23rd to discuss cataract surg. The eye surg I am not concerned about, that will be great, wish I could have it today, it is the numbness of the face and head,

eye patch which if I don't wear it, everything is still blurry.I just would like to have the group here give me some suggestions as how to deal with the tubing or place it so it doesn't pull.I am different, as every one of us is, in that I have so much energy, am always hopping up and down, but slower these days, very busy, and I keep the level of oxy. #5 when alone except when I am working around here. Then 7-8. Actually the only disability I feel (because I have no pain anywhere)is this tubing. I hope someone here can give me some suggestions that will help me with this problem. I know we all are in it and facing it each and every day. But since the incident about 2 wks ago with the workmen in here shutting off the power without telling me and I got sick, and was sick for 3 days, I have become ultra depressed and can't seem to snap out of it.I LOVE YOU THIS DAY !! Lou

- (74) richmond-vaIPF - 02

[Guest guest]

Thanks MB, for your generous thoughts and for your love. I have

tried Peggy's " tubing looped around the neck " , I do that when I am

sitting on computer. That does help relieve the tension on the

tubing.

I didn't realize you had been on constant oxy. that long, GOOD GRIEF!

I feel silly now. I have been on xanax for many many years, but very

minimal amt, maybe I need to increase it.

Thank you Dear for your help. I do appreciate it so much.

I LOVE YOU THIS DAY !!

MARY LOU (74) RICHMOND VA

IPF - 02

>

> ou,

> I'm sorry that you're feeling so rotten. I've been on O2 24/7 for 2

years and 4 months and while it's still an inconvenience in many ways

I've adjusted. Peggy takes her tubing and loops it around the back

of her neck. This gives her more leeway and it doesn't pull on her

nose so much. I don't do that though I will if it starts to bother

me.

> I hope that others can offer a suggestion that might help make all

this easier for you. There is no point in denying that this is all

very difficult. I do my best to put on a happy face and keep a

positive attitude but the truth is this disease sucks and I loathe

it!

> You've probably already done this but have you thought about an

anti-depressant? If you're already on one, you may need a different

one. Do what you have to do to feel better. Don't hesitate. You

have to take care of you!!

>

>

> Beth-Moderator

> Fibrotic NSIP 06/06 UCTD 06/08

>

>

>

>

>

>

> Have a question about the tubing we

wear...............

>

>

> I know there are many more people that have worn the oxy. tubing a

> lot longer than me. This week, it has been over a year now, 24/7. I

> can not go without it at all. Here is my dilemma.

>

> You all may have suggested to me the different ways to wear the

> cannula, upwards or downwards (and in her lady's chamber) whatever.

> Anyhow, it is the most devastating part of PF for me. Others may be

> different. I have come to a point that I can not take it anymore

> with the cannula. I even tried clothes pins on my clothes, etc. you

> name it.

>

> I am becoming increasingly depressed as too, I still am wearing the

> patch and have absolutely no feeling on the left side of my face

and

> head since my detached retinal surgery last March. I have an appt

> with surg Nov. 23rd to discuss cataract surg. The eye surg I am not

> concerned about, that will be great, wish I could have it today, it

> is the numbness of the face and head, eye patch which if I don't

wear

> it, everything is still blurry.

>

> I just would like to have the group here give me some suggestions

as

> how to deal with the tubing or place it so it doesn't pull.

>

> I am different, as every one of us is, in that I have so much

energy,

> am always hopping up and down, but slower these days, very busy,

and

> I keep the level of oxy. #5 when alone except when I am working

> around here. Then 7-8. Actually the only disability I feel (because

> I have no pain anywhere)is this tubing.

>

> I hope someone here can give me some suggestions that will help me

> with this problem. I know we all are in it and facing it each and

> every day. But since the incident about 2 wks ago with the workmen

> in here shutting off the power without telling me and I got sick,

and

> was sick for 3 days, I have become ultra depressed and can't seem

to

> snap out of it.

>

> I LOVE YOU THIS DAY !!

> Lou - (74) richmond-va

> IPF - 02

>

[Guest guest]

Lou

First as to your response to MB's discussion of anti-depressant. Xanax is actually an anti-anxiety med. In fact it could even make you feel depressed. I would definitely get a medication check and possible change if I was feeling depressed.

Now, as to your cannula. You might try the Extension Hose Swivel shown on this page.

http://tri-medinc.com/TM/page5.html#19134

Your oxygen supplier should be able to get it since its a Salter product. Otherwise you can order online. It clips to your clothing wherever you choose so any tug is transferred to that area of your body instead of your nose.

> >> > ou,> > I'm sorry that you're feeling so rotten. I've been on O2 24/7 for 2 > years and 4 months and while it's still an inconvenience in many ways > I've adjusted. Peggy takes her tubing and loops it around the back > of her neck. This gives her more leeway and it doesn't pull on her > nose so much. I don't do that though I will if it starts to bother > me. > > I hope that others can offer a suggestion that might help make all > this easier for you. There is no point in denying that this is all > very difficult. I do my best to put on a happy face and keep a > positive attitude but the truth is this disease sucks and I loathe > it! > > You've probably already done this but have you thought about an > anti-depressant? If you're already on one, you may need a different > one. Do what you have to do to feel better. Don't hesitate. You > have to take care of you!!> > > > > > Beth-Moderator> > Fibrotic NSIP 06/06 UCTD 06/08 > > > > > > > > > > > > > > Have a question about the tubing we > wear...............> > > > > > I know there are many more people that have worn the oxy. tubing a > > lot longer than me. This week, it has been over a year now, 24/7. I > > can not go without it at all. Here is my dilemma.> > > > You all may have suggested to me the different ways to wear the > > cannula, upwards or downwards (and in her lady's chamber) whatever. > > Anyhow, it is the most devastating part of PF for me. Others may be > > different. I have come to a point that I can not take it anymore > > with the cannula. I even tried clothes pins on my clothes, etc. you > > name it.> > > > I am becoming increasingly depressed as too, I still am wearing the > > patch and have absolutely no feeling on the left side of my face > and > > head since my detached retinal surgery last March. I have an appt > > with surg Nov. 23rd to discuss cataract surg. The eye surg I am not > > concerned about, that will be great, wish I could have it today, it > > is the numbness of the face and head, eye patch which if I don't > wear > > it, everything is still blurry.> > > > I just would like to have the group here give me some suggestions > as > > how to deal with the tubing or place it so it doesn't pull.> > > > I am different, as every one of us is, in that I have so much > energy, > > am always hopping up and down, but slower these days, very busy, > and > > I keep the level of oxy. #5 when alone except when I am working > > around here. Then 7-8. Actually the only disability I feel (because > > I have no pain anywhere)is this tubing. > > > > I hope someone here can give me some suggestions that will help me > > with this problem. I know we all are in it and facing it each and > > every day. But since the incident about 2 wks ago with the workmen > > in here shutting off the power without telling me and I got sick, > and > > was sick for 3 days, I have become ultra depressed and can't seem > to > > snap out of it.> > > > I LOVE YOU THIS DAY !!> > Lou - (74) richmond-va> > IPF - 02> >>

[Guest guest]

ML... I'm sorry the cannula continues to bug you. It is an annoyance to me but that's about all. For me, I just keep "flipping" the tubing around as I walk so that it's not underfoot. I'm not as active as you are so that lessens the chance of tubing "bugging" me.

Prongs for me are pointed downward but I'm sure that's not mandatory! lol. I know others wear it upward...anyway...

Have you tried (of course you have) some paper tape and taping the tubing across the cheeks to hold it in place?

You say "the only disability you feel is the tubing" and that's just an adjustment yet to be found. How lucky you are. The depression is a heavy matter that I understand very well. Do you think those dork workers have caused you to get stuck in fear/anger? You say that experience escalated the depression...

What do you use for strength? Do you have a strong faith you can call on to help you?

I envy you your energy. My hopping up and down hopped up and left!

I know I haven't offered any really neat ideas to help you but I wanted to acknowledge your post and not ignore you.

God Bless!

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

Have a question about the tubing we wear...............

I know there are many more people that have worn the oxy. tubing a lot longer than me. This week, it has been over a year now, 24/7. I can not go without it at all. Here is my dilemma.You all may have suggested to me the different ways to wear the cannula, upwards or downwards (and in her lady's chamber) whatever. Anyhow, it is the most devastating part of PF for me. Others may be different. I have come to a point that I can not take it anymore with the cannula. I even tried clothes pins on my clothes, etc. you name it.I am becoming increasingly depressed as too, I still am wearing the patch and have absolutely no feeling on the left side of my face and head since my detached retinal surgery last March. I have an appt with surg Nov. 23rd to discuss cataract surg. The eye surg I am not concerned about, that will be great, wish I could have it today, it is the numbness of the face and head, eye patch which if I don't wear it, everything is still blurry.I just would like to have the group here give me some suggestions as how to deal with the tubing or place it so it doesn't pull.I am different, as every one of us is, in that I have so much energy, am always hopping up and down, but slower these days, very busy, and I keep the level of oxy. #5 when alone except when I am working around here. Then 7-8. Actually the only disability I feel (because I have no pain anywhere)is this tubing. I hope someone here can give me some suggestions that will help me with this problem. I know we all are in it and facing it each and every day. But since the incident about 2 wks ago with the workmen in here shutting off the power without telling me and I got sick, and was sick for 3 days, I have become ultra depressed and can't seem to snap out of it.I LOVE YOU THIS DAY !! Lou - (74) richmond-vaIPF - 02

[Guest guest]

Hi Sher: Yes, I wear my cannula downward too. Much more comfortable

for me. My faith in God has always been everything to me and He has

been good to me. The suffering I have endured in my life has always

been made lighter by my love of God and Jesus Christ. I count on Him

for everything. My depression, anger and resentment has been caused

by those " dorks " , yes, and it triggered the strong depression I am

in....That really scared me, bad. I hope I will get over that part.

Earl worries about my depression too and knows that the PF has a lot

to do with it too. He has been such a wonderful shoulder to lean on

for me and never has failed one time with his love for me. I am

trully blessed with him in my life and very very fortunate.

Thank you Sher for your love too.

I LOVE YOU THIS DAY !!

MARY LOU - (74) RICHMOND VA

IPF 02

>

> ML... I'm sorry the cannula continues to bug you. It is an

annoyance to me but that's about all. For me, I just keep " flipping "

the tubing around as I walk so that it's not underfoot. I'm not as

active as you are so that lessens the chance of tubing " bugging " me.

>

> Prongs for me are pointed downward but I'm sure that's not

mandatory! lol. I know others wear it upward...anyway...

>

> Have you tried (of course you have) some paper tape and taping the

tubing across the cheeks to hold it in place?

>

> You say " the only disability you feel is the tubing " and that's

just an adjustment yet to be found. How lucky you are. The depression

is a heavy matter that I understand very well. Do you think those

dork workers have caused you to get stuck in fear/anger? You say

that experience escalated the depression...

> What do you use for strength? Do you have a strong faith you can

call on to help you?

>

> I envy you your energy. My hopping up and down hopped up and left!

>

> I know I haven't offered any really neat ideas to help you but I

wanted to acknowledge your post and not ignore you.

> God Bless!

>

> MamaSher, age 70. IPF 3-06, OR.

> Nasturtiums

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

>

> Have a question about the tubing we

wear...............

>

>

> I know there are many more people that have worn the oxy. tubing

a

> lot longer than me. This week, it has been over a year now, 24/7.

I

> can not go without it at all. Here is my dilemma.

>

> You all may have suggested to me the different ways to wear the

> cannula, upwards or downwards (and in her lady's chamber)

whatever.

> Anyhow, it is the most devastating part of PF for me. Others may

be

> different. I have come to a point that I can not take it anymore

> with the cannula. I even tried clothes pins on my clothes, etc.

you

> name it.

>

> I am becoming increasingly depressed as too, I still am wearing

the

> patch and have absolutely no feeling on the left side of my face

and

> head since my detached retinal surgery last March. I have an appt

> with surg Nov. 23rd to discuss cataract surg. The eye surg I am

not

> concerned about, that will be great, wish I could have it today,

it

> is the numbness of the face and head, eye patch which if I don't

wear

> it, everything is still blurry.

>

> I just would like to have the group here give me some suggestions

as

> how to deal with the tubing or place it so it doesn't pull.

>

> I am different, as every one of us is, in that I have so much

energy,

> am always hopping up and down, but slower these days, very busy,

and

> I keep the level of oxy. #5 when alone except when I am working

> around here. Then 7-8. Actually the only disability I feel

(because

> I have no pain anywhere)is this tubing.

>

> I hope someone here can give me some suggestions that will help

me

> with this problem. I know we all are in it and facing it each and

> every day. But since the incident about 2 wks ago with the

workmen

> in here shutting off the power without telling me and I got sick,

and

> was sick for 3 days, I have become ultra depressed and can't seem

to

> snap out of it.

>

> I LOVE YOU THIS DAY !!

> Lou - (74) richmond-va

> IPF - 02

>

[Guest guest]

Thanks Bruce: I put that site in my favorites and it looks pretty

savy to me. I will call the oxy. folks tomorrow a.m. before my

delivery. I really appreciate your input as always.

I LOVE YOU THIS DAY !!

MARY LOU (74) RICHMOND VA

IPF - 02

> > >

> > > ou,

> > > I'm sorry that you're feeling so rotten. I've been on O2 24/7

for 2

> > years and 4 months and while it's still an inconvenience in many

ways

> > I've adjusted. Peggy takes her tubing and loops it around the

back

> > of her neck. This gives her more leeway and it doesn't pull on her

> > nose so much. I don't do that though I will if it starts to

bother

> > me.

> > > I hope that others can offer a suggestion that might help make

all

> > this easier for you. There is no point in denying that this is all

> > very difficult. I do my best to put on a happy face and keep a

> > positive attitude but the truth is this disease sucks and I loathe

> > it!

> > > You've probably already done this but have you thought about an

> > anti-depressant? If you're already on one, you may need a

different

> > one. Do what you have to do to feel better. Don't hesitate. You

> > have to take care of you!!

> > >

> > >

> > > Beth-Moderator

> > > Fibrotic NSIP 06/06 UCTD 06/08

> > >

> > >

> > >

> > >

> > >

> > >

> > > Have a question about the tubing we

> > wear...............

> > >

> > >

> > > I know there are many more people that have worn the oxy.

tubing a

> > > lot longer than me. This week, it has been over a year now,

24/7. I

> > > can not go without it at all. Here is my dilemma.

> > >

> > > You all may have suggested to me the different ways to wear the

> > > cannula, upwards or downwards (and in her lady's chamber)

whatever.

> > > Anyhow, it is the most devastating part of PF for me. Others

may be

> > > different. I have come to a point that I can not take it anymore

> > > with the cannula. I even tried clothes pins on my clothes, etc.

you

> > > name it.

> > >

> > > I am becoming increasingly depressed as too, I still am wearing

the

> > > patch and have absolutely no feeling on the left side of my face

> > and

> > > head since my detached retinal surgery last March. I have an

appt

> > > with surg Nov. 23rd to discuss cataract surg. The eye surg I am

not

> > > concerned about, that will be great, wish I could have it

today, it

> > > is the numbness of the face and head, eye patch which if I don't

> > wear

> > > it, everything is still blurry.

> > >

> > > I just would like to have the group here give me some

suggestions

> > as

> > > how to deal with the tubing or place it so it doesn't pull.

> > >

> > > I am different, as every one of us is, in that I have so much

> > energy,

> > > am always hopping up and down, but slower these days, very busy,

> > and

> > > I keep the level of oxy. #5 when alone except when I am working

> > > around here. Then 7-8. Actually the only disability I feel

(because

> > > I have no pain anywhere)is this tubing.

> > >

> > > I hope someone here can give me some suggestions that will help

me

> > > with this problem. I know we all are in it and facing it each

and

> > > every day. But since the incident about 2 wks ago with the

workmen

> > > in here shutting off the power without telling me and I got

sick,

> > and

> > > was sick for 3 days, I have become ultra depressed and can't

seem

> > to

> > > snap out of it.

> > >

> > > I LOVE YOU THIS DAY !!

> > > Lou - (74) richmond-va

> > > IPF - 02

> > >

> >

>

[Guest guest]

ML... I speak frankly about the depression because I've lived it since I was a young teen. I've learned ways to handle it better as I've grown older. We're close to the same age btw.

We just HAVE to accept the things we cannot change ML. Or we pay the price.

Change what you CAN and let everything else GO! Sounds simple huh? When I can do it I'm feeling soooo much better.

When I can't do it I ask myself "why am I holding on to this? I'm getting something out of holding on to it or I wouldn't do it"

We are both lucky to have such good husbands and if your tubing is the worst problem you have girlfriend (with IPF) then give yourself a shake like a wet dog and accept what you can't change. Those dorks are long gone now and you're still living with the fear of "what if". In the land of "What If" anything can happen.

I'm thinking it must be very difficult to live every day with the results of the eye surgery and the patch. Hopefully seeing the Dr will bring some solutions.

Ok. Lecture over dear friend. lol.

I feel sad for anyone dealing with depression...

Love ya!

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

Have a question about the tubing we wear...............> > > I know there are many more people that have worn the oxy. tubing a > lot longer than me. This week, it has been over a year now, 24/7. I > can not go without it at all. Here is my dilemma.> > You all may have suggested to me the different ways to wear the > cannula, upwards or downwards (and in her lady's chamber) whatever. > Anyhow, it is the most devastating part of PF for me. Others may be > different. I have come to a point that I can not take it anymore > with the cannula. I even tried clothes pins on my clothes, etc. you > name it.> > I am becoming increasingly depressed as too, I still am wearing the > patch and have absolutely no feeling on the left side of my face and > head since my detached retinal surgery last March. I have an appt > with surg Nov. 23rd to discuss cataract surg. The eye surg I am not > concerned about, that will be great, wish I could have it today, it > is the numbness of the face and head, eye patch which if I don't wear > it, everything is still blurry.> > I just would like to have the group here give me some suggestions as > how to deal with the tubing or place it so it doesn't pull.> > I am different, as every one of us is, in that I have so much energy, > am always hopping up and down, but slower these days, very busy, and > I keep the level of oxy. #5 when alone except when I am working > around here. Then 7-8. Actually the only disability I feel (because > I have no pain anywhere)is this tubing. > > I hope someone here can give me some suggestions that will help me > with this problem. I know we all are in it and facing it each and > every day. But since the incident about 2 wks ago with the workmen > in here shutting off the power without telling me and I got sick, and > was sick for 3 days, I have become ultra depressed and can't seem to > snap out of it.> > I LOVE YOU THIS DAY !!> Lou - (74) richmond-va> IPF - 02>

[Guest guest]

You're right Sher, I am fortunate. In many ways too. Mostly I am

fortunate for all of you here on the board. It is a MIGHTY great

place to be at any time. I too have always had a depression

problem. I know I have to let go of things I can not change, and you

know what Sher? When those guys cut off my oxygen that day, I was so

friggin' mad, I realized at that time that I have a horrid disease

and that I can not do it alone and apparently I have been trying to

do TOO MUCH (as you and I talk about sometimes), pretend that nothing

is wrong with me, HEY LOOK WHAT I DID, that bothers me to no end

Sher. ha You and I seem to be a lot alike in that respect, except

you are smarter because you have learned to let go. I am a " cancer " ,

holding on to everything I can, we are like that, cupboards full,

freezer full, frig full, and " i'm full " .

I am here for a reason yet and God wants me to do something yet. I

pray every day to Him and just to let him know how much He means to

me. He protects my family and all of you guys too and your

faithfulness to be there when we 'cry'. it is wonderful to have you

near to me.

I LOVE YOU THIS DAY!!

MARY LOU (74) RICHMOND VA

IPF - 02

> >

> > ML... I'm sorry the cannula continues to bug you. It is an

> annoyance to me but that's about all. For me, I just

keep " flipping "

> the tubing around as I walk so that it's not underfoot. I'm not

as

> active as you are so that lessens the chance of tubing " bugging "

me.

> >

> > Prongs for me are pointed downward but I'm sure that's not

> mandatory! lol. I know others wear it upward...anyway...

> >

> > Have you tried (of course you have) some paper tape and taping

the

> tubing across the cheeks to hold it in place?

> >

> > You say " the only disability you feel is the tubing " and that's

> just an adjustment yet to be found. How lucky you are. The

depression

> is a heavy matter that I understand very well. Do you think those

> dork workers have caused you to get stuck in fear/anger? You say

> that experience escalated the depression...

> > What do you use for strength? Do you have a strong faith you

can

> call on to help you?

> >

> > I envy you your energy. My hopping up and down hopped up and

left!

> >

> > I know I haven't offered any really neat ideas to help you but

I

> wanted to acknowledge your post and not ignore you.

> > God Bless!

> >

> > MamaSher, age 70. IPF 3-06, OR.

> > Nasturtiums

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

> >

> > Have a question about the tubing we

> wear...............

> >

> >

> > I know there are many more people that have worn the oxy.

tubing

> a

> > lot longer than me. This week, it has been over a year now,

24/7.

> I

> > can not go without it at all. Here is my dilemma.

> >

> > You all may have suggested to me the different ways to wear the

> > cannula, upwards or downwards (and in her lady's chamber)

> whatever.

> > Anyhow, it is the most devastating part of PF for me. Others

may

> be

> > different. I have come to a point that I can not take it

anymore

> > with the cannula. I even tried clothes pins on my clothes, etc.

> you

> > name it.

> >

> > I am becoming increasingly depressed as too, I still am wearing

> the

> > patch and have absolutely no feeling on the left side of my

face

> and

> > head since my detached retinal surgery last March. I have an

appt

> > with surg Nov. 23rd to discuss cataract surg. The eye surg I am

> not

> > concerned about, that will be great, wish I could have it

today,

> it

> > is the numbness of the face and head, eye patch which if I

don't

> wear

> > it, everything is still blurry.

> >

> > I just would like to have the group here give me some

suggestions

> as

> > how to deal with the tubing or place it so it doesn't pull.

> >

> > I am different, as every one of us is, in that I have so much

> energy,

> > am always hopping up and down, but slower these days, very

busy,

> and

> > I keep the level of oxy. #5 when alone except when I am working

> > around here. Then 7-8. Actually the only disability I feel

> (because

> > I have no pain anywhere)is this tubing.

> >

> > I hope someone here can give me some suggestions that will help

> me

> > with this problem. I know we all are in it and facing it each

and

> > every day. But since the incident about 2 wks ago with the

> workmen

> > in here shutting off the power without telling me and I got

sick,

> and

> > was sick for 3 days, I have become ultra depressed and can't

seem

> to

> > snap out of it.

> >

> > I LOVE YOU THIS DAY !!

> > Lou - (74) richmond-va

> > IPF - 02

> >

>

[Guest guest]

Remember ML the only constant thing is change. Nothing stays the same, we have to learn to go with the flow or we are always in a snit...

This too will pass and as you think about it, one day you'll realize it's 'behind you' and the depression isn't so bad.

You can do this, you and I are survivors and by golly we can do this. Let's save our energy to fight this damned PF and more...OK?

Keep on keepin' on.

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

Have a question about the tubing we > wear...............> > > > > > I know there are many more people that have worn the oxy. tubing > a > > lot longer than me. This week, it has been over a year now, 24/7. > I > > can not go without it at all. Here is my dilemma.> > > > You all may have suggested to me the different ways to wear the > > cannula, upwards or downwards (and in her lady's chamber) > whatever. > > Anyhow, it is the most devastating part of PF for me. Others may > be > > different. I have come to a point that I can not take it anymore > > with the cannula. I even tried clothes pins on my clothes, etc. > you > > name it.> > > > I am becoming increasingly depressed as too, I still am wearing > the > > patch and have absolutely no feeling on the left side of my face > and > > head since my detached retinal surgery last March. I have an appt > > with surg Nov. 23rd to discuss cataract surg. The eye surg I am > not > > concerned about, that will be great, wish I could have it today, > it > > is the numbness of the face and head, eye patch which if I don't > wear > > it, everything is still blurry.> > > > I just would like to have the group here give me some suggestions > as > > how to deal with the tubing or place it so it doesn't pull.> > > > I am different, as every one of us is, in that I have so much > energy, > > am always hopping up and down, but slower these days, very busy, > and > > I keep the level of oxy. #5 when alone except when I am working > > around here. Then 7-8. Actually the only disability I feel > (because > > I have no pain anywhere)is this tubing. > > > > I hope someone here can give me some suggestions that will help > me > > with this problem. I know we all are in it and facing it each and > > every day. But since the incident about 2 wks ago with the > workmen > > in here shutting off the power without telling me and I got sick, > and > > was sick for 3 days, I have become ultra depressed and can't seem > to > > snap out of it.> > > > I LOVE YOU THIS DAY !!> > Lou - (74) richmond-va> > IPF - 02> >>

[Guest guest]

That's why I have you for a friend, Sher! You are good for me.

I LOVE " U " THIS DAY!!!

MARY LOU

IPF - 02

> > >

> > > ML... I'm sorry the cannula continues to bug you. It is an

> > annoyance to me but that's about all. For me, I just

> keep " flipping "

> > the tubing around as I walk so that it's not underfoot. I'm not

> as

> > active as you are so that lessens the chance of

tubing " bugging "

> me.

> > >

> > > Prongs for me are pointed downward but I'm sure that's not

> > mandatory! lol. I know others wear it upward...anyway...

> > >

> > > Have you tried (of course you have) some paper tape and

taping

> the

> > tubing across the cheeks to hold it in place?

> > >

> > > You say " the only disability you feel is the tubing " and

that's

> > just an adjustment yet to be found. How lucky you are. The

> depression

> > is a heavy matter that I understand very well. Do you think

those

> > dork workers have caused you to get stuck in fear/anger? You

say

> > that experience escalated the depression...

> > > What do you use for strength? Do you have a strong faith you

> can

> > call on to help you?

> > >

> > > I envy you your energy. My hopping up and down hopped up and

> left!

> > >

> > > I know I haven't offered any really neat ideas to help you

but

> I

> > wanted to acknowledge your post and not ignore you.

> > > God Bless!

> > >

> > > MamaSher, age 70. IPF 3-06, OR.

> > > Nasturtiums

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

> > >

> > > Have a question about the tubing

we

> > wear...............

> > >

> > >

> > > I know there are many more people that have worn the oxy.

> tubing

> > a

> > > lot longer than me. This week, it has been over a year now,

> 24/7.

> > I

> > > can not go without it at all. Here is my dilemma.

> > >

> > > You all may have suggested to me the different ways to wear

the

> > > cannula, upwards or downwards (and in her lady's chamber)

> > whatever.

> > > Anyhow, it is the most devastating part of PF for me. Others

> may

> > be

> > > different. I have come to a point that I can not take it

> anymore

> > > with the cannula. I even tried clothes pins on my clothes,

etc.

> > you

> > > name it.

> > >

> > > I am becoming increasingly depressed as too, I still am

wearing

> > the

> > > patch and have absolutely no feeling on the left side of my

> face

> > and

> > > head since my detached retinal surgery last March. I have an

> appt

> > > with surg Nov. 23rd to discuss cataract surg. The eye surg I

am

> > not

> > > concerned about, that will be great, wish I could have it

> today,

> > it

> > > is the numbness of the face and head, eye patch which if I

> don't

> > wear

> > > it, everything is still blurry.

> > >

> > > I just would like to have the group here give me some

> suggestions

> > as

> > > how to deal with the tubing or place it so it doesn't pull.

> > >

> > > I am different, as every one of us is, in that I have so much

> > energy,

> > > am always hopping up and down, but slower these days, very

> busy,

> > and

> > > I keep the level of oxy. #5 when alone except when I am

working

> > > around here. Then 7-8. Actually the only disability I feel

> > (because

> > > I have no pain anywhere)is this tubing.

> > >

> > > I hope someone here can give me some suggestions that will

help

> > me

> > > with this problem. I know we all are in it and facing it each

> and

> > > every day. But since the incident about 2 wks ago with the

> > workmen

> > > in here shutting off the power without telling me and I got

> sick,

> > and

> > > was sick for 3 days, I have become ultra depressed and can't

> seem

> > to

> > > snap out of it.

> > >

> > > I LOVE YOU THIS DAY !!

> > > Lou - (74) richmond-va

> > > IPF - 02

> > >

> >

>

[Guest guest]

ML... ahhh shucks.

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

Have a question about the tubing we > > wear...............> > > > > > > > > I know there are many more people that have worn the oxy. > tubing > > a > > > lot longer than me. This week, it has been over a year now, > 24/7. > > I > > > can not go without it at all. Here is my dilemma.> > > > > > You all may have suggested to me the different ways to wear the > > > cannula, upwards or downwards (and in her lady's chamber) > > whatever. > > > Anyhow, it is the most devastating part of PF for me. Others > may > > be > > > different. I have come to a point that I can not take it > anymore > > > with the cannula. I even tried clothes pins on my clothes, etc. > > you > > > name it.> > > > > > I am becoming increasingly depressed as too, I still am wearing > > the > > > patch and have absolutely no feeling on the left side of my > face > > and > > > head since my detached retinal surgery last March. I have an > appt > > > with surg Nov. 23rd to discuss cataract surg. The eye surg I am > > not > > > concerned about, that will be great, wish I could have it > today, > > it > > > is the numbness of the face and head, eye patch which if I > don't > > wear > > > it, everything is still blurry.> > > > > > I just would like to have the group here give me some > suggestions > > as > > > how to deal with the tubing or place it so it doesn't pull.> > > > > > I am different, as every one of us is, in that I have so much > > energy, > > > am always hopping up and down, but slower these days, very > busy, > > and > > > I keep the level of oxy. #5 when alone except when I am working > > > around here. Then 7-8. Actually the only disability I feel > > (because > > > I have no pain anywhere)is this tubing. > > > > > > I hope someone here can give me some suggestions that will help > > me > > > with this problem. I know we all are in it and facing it each > and > > > every day. But since the incident about 2 wks ago with the > > workmen > > > in here shutting off the power without telling me and I got > sick, > > and > > > was sick for 3 days, I have become ultra depressed and can't > seem > > to > > > snap out of it.> > > > > > I LOVE YOU THIS DAY !!> > > Lou - (74) richmond-va> > > IPF - 02> > >> >>

[Guest guest]

well, I knew from the start we'd never part,

so hello mary lou, good bye heart.

Just a little refrain , remembered from my tweenage years.

The only advice I can give is that I too had my retina re-attached ,and after a while the pain and numbness went away. My doctor said that as long as there is a blood supply through the new attachment your sight will get better. There should not be any numbness, But your vision will still not be clear because your trying to focus around the scar tissue. Check with your doctor, It may have been a problem in surgery.

As for the tubing , I wear mine curved down around my ears and under my chin. I keep it sort of tight and make sure that I have plenty of slack. THAT IS SOMETHING I WOULD NEVER THOUGHT I'D HAVE TO WRITE Oh well we do what we must, I try to remember that there are people worse off than me.

There is one thing I read about that is suppossed to be a godsend for people who want a different way of receiving oxygen therapy. You can ask your doctors about it. It is called the scoop, With minamal surgery a device is inserted at your neck and the tubing runs under your shirt from the waist up to the device. It is painless , unattrussive , Gives a lot more freedom of movement, It does have to be cleaned regularly.

I know thar was lenghtly but I hope it was helpful

My name is , I dont post often but I read a lot, and have really gotten most of my

info about pf from this website

Godbless Everyone

Subject: Re: Have a question about the tubing we wear...............To: Breathe-Support Date: Sunday, October 12, 2008, 1:02 PM

That's why I have you for a friend, Sher! You are good for me.I LOVE "U" THIS DAY!!!MARY LOUIPF - 02> > >> > > ML... I'm sorry the cannula continues to bug you. It is an > > annoyance to me but that's about all. For me, I just > keep "flipping" > > the tubing around as I walk so that it's not underfoot. I'm not > as > > active as you are so that lessens the chance of tubing "bugging" > me.> > > > > > Prongs for me are pointed downward but I'm sure that's not > > mandatory! lol. I know others wear it upward...anyway. ..> > > > > > Have you tried (of

course you have) some paper tape and taping > the > > tubing across the cheeks to hold it in place?> > > > > > You say "the only disability you feel is the tubing" and that's > > just an adjustment yet to be found. How lucky you are. The > depression > > is a heavy matter that I understand very well. Do you think those > > dork workers have caused you to get stuck in fear/anger? You say > > that experience escalated the depression.. .> > > What do you use for strength? Do you have a strong faith you > can > > call on to help you?> > > > > > I envy you your energy. My hopping up and down hopped up and > left!> > > > > > I know I haven't offered any really neat ideas to help you but > I > > wanted to acknowledge your post and not ignore

you.> > > God Bless!> > > > > > MamaSher, age 70. IPF 3-06, OR. > > > Nasturtiums> > > Don't fret about tomorrow, God is already there!> > > > > > Have a question about the tubing we > > wear........ .......> > > > > > > > > I know there are many more people that have worn the oxy. > tubing > > a > > > lot longer than me. This week, it has been over a year now, > 24/7. > > I > > > can not go without it at all. Here is my dilemma.> >

> > > > You all may have suggested to me the different ways to wear the > > > cannula, upwards or downwards (and in her lady's chamber) > > whatever. > > > Anyhow, it is the most devastating part of PF for me. Others > may > > be > > > different. I have come to a point that I can not take it > anymore > > > with the cannula. I even tried clothes pins on my clothes, etc. > > you > > > name it.> > > > > > I am becoming increasingly depressed as too, I still am wearing > > the > > > patch and have absolutely no feeling on the left side of my > face > > and > > > head since my detached retinal surgery last March. I have an > appt > > > with surg Nov. 23rd to discuss cataract surg. The eye surg I am > > not

> > > concerned about, that will be great, wish I could have it > today, > > it > > > is the numbness of the face and head, eye patch which if I > don't > > wear > > > it, everything is still blurry.> > > > > > I just would like to have the group here give me some > suggestions > > as > > > how to deal with the tubing or place it so it doesn't pull.> > > > > > I am different, as every one of us is, in that I have so much > > energy, > > > am always hopping up and down, but slower these days, very > busy, > > and > > > I keep the level of oxy. #5 when alone except when I am working > > > around here. Then 7-8. Actually the only disability I feel > > (because > > > I have no pain anywhere)is this tubing.

> > > > > > I hope someone here can give me some suggestions that will help > > me > > > with this problem. I know we all are in it and facing it each > and > > > every day. But since the incident about 2 wks ago with the > > workmen > > > in here shutting off the power without telling me and I got > sick, > > and > > > was sick for 3 days, I have become ultra depressed and can't > seem > > to > > > snap out of it.> > > > > > I LOVE YOU THIS DAY !!> > > Lou - (74) richmond-va> > > IPF - 02> > >> >>

[Guest guest]

Thank you for your important input this morning. I hope you

are doing well today. I don't think I would want to have my oxygen

going into my neck though. I know there are so many folks out there

so very much worse off then I, but sometimes I just have to vent and

also this group is so wonderful about giving the " right " info on

things that you have questions about. A lot of them are so

experienced with this disease that I don't question them when they

advise me. Even though I am OLD. hee I do hope we see you on here

more often. It would be wonderful too over the holidays coming up to

have as many people as we can in this wonderful group.

HEY, GANG!!!!!!!!!! I AM FEELING BETTER, MUST BE YOUR PRAYERS.

I LOVE YOU THIS DAY!

MARY LOU

IPF - 02

> > > >

> > > > ML... I'm sorry the cannula continues to bug you. It is an

> > > annoyance to me but that's about all. For me, I just

> > keep " flipping "

> > > the tubing around as I walk so that it's not underfoot. I'm not

> > as

> > > active as you are so that lessens the chance of

> tubing " bugging "

> > me.

> > > >

> > > > Prongs for me are pointed downward but I'm sure that's not

> > > mandatory! lol. I know others wear it upward...anyway. ..

> > > >

> > > > Have you tried (of course you have) some paper tape and

> taping

> > the

> > > tubing across the cheeks to hold it in place?

> > > >

> > > > You say " the only disability you feel is the tubing " and

> that's

> > > just an adjustment yet to be found. How lucky you are. The

> > depression

> > > is a heavy matter that I understand very well. Do you think

> those

> > > dork workers have caused you to get stuck in fear/anger? You

> say

> > > that experience escalated the depression.. .

> > > > What do you use for strength? Do you have a strong faith you

> > can

> > > call on to help you?

> > > >

> > > > I envy you your energy. My hopping up and down hopped up and

> > left!

> > > >

> > > > I know I haven't offered any really neat ideas to help you

> but

> > I

> > > wanted to acknowledge your post and not ignore you.

> > > > God Bless!

> > > >

> > > > MamaSher, age 70. IPF 3-06, OR.

> > > > Nasturtiums

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

> > > >

> > > > Have a question about the tubing

> we

> > > wear........ .......

> > > >

> > > >

> > > > I know there are many more people that have worn the oxy.

> > tubing

> > > a

> > > > lot longer than me. This week, it has been over a year now,

> > 24/7.

> > > I

> > > > can not go without it at all. Here is my dilemma.

> > > >

> > > > You all may have suggested to me the different ways to wear

> the

> > > > cannula, upwards or downwards (and in her lady's chamber)

> > > whatever.

> > > > Anyhow, it is the most devastating part of PF for me. Others

> > may

> > > be

> > > > different. I have come to a point that I can not take it

> > anymore

> > > > with the cannula. I even tried clothes pins on my clothes,

> etc.

> > > you

> > > > name it.

> > > >

> > > > I am becoming increasingly depressed as too, I still am

> wearing

> > > the

> > > > patch and have absolutely no feeling on the left side of my

> > face

> > > and

> > > > head since my detached retinal surgery last March. I have an

> > appt

> > > > with surg Nov. 23rd to discuss cataract surg. The eye surg I

> am

> > > not

> > > > concerned about, that will be great, wish I could have it

> > today,

> > > it

> > > > is the numbness of the face and head, eye patch which if I

> > don't

> > > wear

> > > > it, everything is still blurry.

> > > >

> > > > I just would like to have the group here give me some

> > suggestions

> > > as

> > > > how to deal with the tubing or place it so it doesn't pull.

> > > >

> > > > I am different, as every one of us is, in that I have so much

> > > energy,

> > > > am always hopping up and down, but slower these days, very

> > busy,

> > > and

> > > > I keep the level of oxy. #5 when alone except when I am

> working

> > > > around here. Then 7-8. Actually the only disability I feel

> > > (because

> > > > I have no pain anywhere)is this tubing.

> > > >

> > > > I hope someone here can give me some suggestions that will

> help

> > > me

> > > > with this problem. I know we all are in it and facing it each

> > and

> > > > every day. But since the incident about 2 wks ago with the

> > > workmen

> > > > in here shutting off the power without telling me and I got

> > sick,

> > > and

> > > > was sick for 3 days, I have become ultra depressed and can't

> > seem

> > > to

> > > > snap out of it.

> > > >

> > > > I LOVE YOU THIS DAY !!

> > > > Lou - (74) richmond-va

> > > > IPF - 02

> > > >

> > >

> >

>

[Guest guest]

HMMMMMMMMMM robert, you must be around 58ish, to change moods and put some fun into this horrible disease i would like to know if anyone can give me some ideas on where to find a lizzie borden costume for a halloween party. my sister wants to go as her and since she works all the time i told her i would research for her . i cant find victorian costumes anywhere and to buy from victorian trading is really expensive. any ideas? bruce i know you know! i tried ebay but its mostly mens outfits.

sharonp ph 2008 illinois

From: Lou <mlpretired (AT) aol (DOT) com>Subject: Re: Have a question about the tubing we wear........ .......To: Breathe-Support@ yahoogroups. comDate: Sunday, October 12, 2008, 1:02 PM

That's why I have you for a friend, Sher! You are good for me.I LOVE "U" THIS DAY!!!MARY LOUIPF - 02> > >> > > ML... I'm sorry the cannula continues to bug you. It is an > > annoyance to me but that's about all. For me, I just > keep "flipping" > > the tubing around as I walk so that it's not underfoot. I'm not > as > > active as you are so that lessens the chance of tubing "bugging" > me.> > > > > > Prongs for me are pointed downward but I'm sure that's not > > mandatory! lol. I know others wear it upward...anyway. ..> > > > > > Have you tried (of

course you have) some paper tape and taping > the > > tubing across the cheeks to hold it in place?> > > > > > You say "the only disability you feel is the tubing" and that's > > just an adjustment yet to be found. How lucky you are. The > depression > > is a heavy matter that I understand very well. Do you think those > > dork workers have caused you to get stuck in fear/anger? You say > > that experience escalated the depression.. .> > > What do you use for strength? Do you have a strong faith you > can > > call on to help you?> > > > > > I envy you your energy. My hopping up and down hopped up and > left!> > > > > > I know I haven't offered any really neat ideas to help you but > I > > wanted to acknowledge your post and not ignore

you.> > > God Bless!> > > > > > MamaSher, age 70. IPF 3-06, OR. > > > Nasturtiums> > > Don't fret about tomorrow, God is already there!> > > > > > Have a question about the tubing we > > wear........ .......> > > > > > > > > I know there are many more people that have worn the oxy. > tubing > > a > > > lot longer than me. This week, it has been over a year now, > 24/7. > > I > > > can not go without it at all. Here is my dilemma.> >

> > > > You all may have suggested to me the different ways to wear the > > > cannula, upwards or downwards (and in her lady's chamber) > > whatever. > > > Anyhow, it is the most devastating part of PF for me. Others > may > > be > > > different. I have come to a point that I can not take it > anymore > > > with the cannula. I even tried clothes pins on my clothes, etc. > > you > > > name it.> > > > > > I am becoming increasingly depressed as too, I still am wearing > > the > > > patch and have absolutely no feeling on the left side of my > face > > and > > > head since my detached retinal surgery last March. I have an > appt > > > with surg Nov. 23rd to discuss cataract surg. The eye surg I am > > not

> > > concerned about, that will be great, wish I could have it > today, > > it > > > is the numbness of the face and head, eye patch which if I > don't > > wear > > > it, everything is still blurry.> > > > > > I just would like to have the group here give me some > suggestions > > as > > > how to deal with the tubing or place it so it doesn't pull.> > > > > > I am different, as every one of us is, in that I have so much > > energy, > > > am always hopping up and down, but slower these days, very > busy, > > and > > > I keep the level of oxy. #5 when alone except when I am working > > > around here. Then 7-8. Actually the only disability I feel > > (because > > > I have no pain anywhere)is this tubing.

> > > > > > I hope someone here can give me some suggestions that will help > > me > > > with this problem. I know we all are in it and facing it each > and > > > every day. But since the incident about 2 wks ago with the > > workmen > > > in here shutting off the power without telling me and I got > sick, > > and > > > was sick for 3 days, I have become ultra depressed and can't > seem > > to > > > snap out of it.> > > > > > I LOVE YOU THIS DAY !!> > > Lou - (74) richmond-va> > > IPF - 02> > >> >>

[Guest guest]

Sharon

Well, here are a couple of interesting places to look. As to costumes, I found no specific Lizzie Borden but a couple of places that specialize in Adult Halloween Costumes and one which has quite a few n. Caution that when I say Adult Costumes some are more adult than others.

Buy Costumes has three pages of n:

http://www.buycostumes.com/browse/_/N-/Ntt-victorian/results1.aspx

Now a store I've actually been to (their brick and mortar) that you might call is www.electriqueboutique.com but I didn't seen much n on their site.

Now for true n clothing and I'm sure more than she wants to spend on halloween but might still make for an interesting call, I found this site:

http://dallasvintageshop.com/?cat=103

You have to call them to get prices or order since they do sell based on inventory they've acquired as well as they help put ideas together.

> > > >> > > > ML... I'm sorry the cannula continues to bug you. It is an > > > annoyance to me but that's about all. For me, I just > > keep "flipping" > > > the tubing around as I walk so that it's not underfoot. I'm not > > as > > > active as you are so that lessens the chance of > tubing "bugging" > > me.> > > > > > > > Prongs for me are pointed downward but I'm sure that's not > > > mandatory! lol. I know others wear it upward...anyway. ..> > > > > > > > Have you tried (of course you have) some paper tape and > taping > > the > > > tubing across the cheeks to hold it in place?> > > > > > > > You say "the only disability you feel is the tubing" and > that's > > > just an adjustment yet to be found. How lucky you are. The > > depression > > > is a heavy matter that I understand very well. Do you think > those > > > dork workers have caused you to get stuck in fear/anger? You > say > > > that experience escalated the depression.. .> > > > What do you use for strength? Do you have a strong faith you > > can > > > call on to help you?> > > > > > > > I envy you your energy. My hopping up and down hopped up and > > left!> > > > > > > > I know I haven't offered any really neat ideas to help you > but > > I > > > wanted to acknowledge your post and not ignore you.> > > > God Bless!> > > > > > > > MamaSher, age 70. IPF 3-06, OR. > > > > Nasturtiums> > > > Don't fret about tomorrow, God is already there!> > > > > > > > Have a question about the tubing > we > > > wear........ .......> > > > > > > > > > > > I know there are many more people that have worn the oxy. > > tubing > > > a > > > > lot longer than me. This week, it has been over a year now, > > 24/7. > > > I > > > > can not go without it at all. Here is my dilemma.> > > > > > > > You all may have suggested to me the different ways to wear > the > > > > cannula, upwards or downwards (and in her lady's chamber) > > > whatever. > > > > Anyhow, it is the most devastating part of PF for me. Others > > may > > > be > > > > different. I have come to a point that I can not take it > > anymore > > > > with the cannula. I even tried clothes pins on my clothes, > etc. > > > you > > > > name it.> > > > > > > > I am becoming increasingly depressed as too, I still am > wearing > > > the > > > > patch and have absolutely no feeling on the left side of my > > face > > > and > > > > head since my detached retinal surgery last March. I have an > > appt > > > > with surg Nov. 23rd to discuss cataract surg. The eye surg I > am > > > not > > > > concerned about, that will be great, wish I could have it > > today, > > > it > > > > is the numbness of the face and head, eye patch which if I > > don't > > > wear > > > > it, everything is still blurry.> > > > > > > > I just would like to have the group here give me some > > suggestions > > > as > > > > how to deal with the tubing or place it so it doesn't pull.> > > > > > > > I am different, as every one of us is, in that I have so much > > > energy, > > > > am always hopping up and down, but slower these days, very > > busy, > > > and > > > > I keep the level of oxy. #5 when alone except when I am > working > > > > around here. Then 7-8. Actually the only disability I feel > > > (because > > > > I have no pain anywhere)is this tubing. > > > > > > > > I hope someone here can give me some suggestions that will > help > > > me > > > > with this problem. I know we all are in it and facing it each > > and > > > > every day. But since the incident about 2 wks ago with the > > > workmen > > > > in here shutting off the power without telling me and I got > > sick, > > > and > > > > was sick for 3 days, I have become ultra depressed and can't > > seem > > > to > > > > snap out of it.> > > > > > > > I LOVE YOU THIS DAY !!> > > > Lou - (74) richmond-va> > > > IPF - 02> > > >> > >> >>

[Guest guest]

THANK YOU BRUCE, my sister is a dean at the community college here in illinois, what does that train of thought tell you about my family.

sharon p ph 2008

Subject: Re: Have a question about the tubing we wear...............To: Breathe-Support Date: Monday, October 13, 2008, 12:03 PM

Sharon

Well, here are a couple of interesting places to look. As to costumes, I found no specific Lizzie Borden but a couple of places that specialize in Adult Halloween Costumes and one which has quite a few n. Caution that when I say Adult Costumes some are more adult than others.

Buy Costumes has three pages of n:

http://www.buycostu mes.com/browse/ _/N-/Ntt- victorian/ results1. aspx

Now a store I've actually been to (their brick and mortar) that you might call is www.electriquebouti que.com but I didn't seen much n on their site.

Now for true n clothing and I'm sure more than she wants to spend on halloween but might still make for an interesting call, I found this site:

http://dallasvintag eshop.com/ ?cat=103

You have to call them to get prices or order since they do sell based on inventory they've acquired as well as they help put ideas together.

> > > >> >

> > ML... I'm sorry the cannula continues to bug you. It is an > > > annoyance to me but that's about all. For me, I just > > keep "flipping" > > > the tubing around as I walk so that it's not underfoot. I'm not > > as > > > active as you are so that lessens the chance of > tubing "bugging" > > me.> > > > > > > > Prongs for me are pointed downward but I'm sure that's not > > > mandatory! lol. I know others wear it upward...anyway. ..> > > > > > > > Have you tried (of course you have) some paper tape and > taping > > the > > > tubing across the cheeks to hold it in place?> > > > > > > > You say "the only disability you feel is the tubing" and > that's > > > just an adjustment yet to be found. How lucky you are. The

> > depression > > > is a heavy matter that I understand very well. Do you think > those > > > dork workers have caused you to get stuck in fear/anger? You > say > > > that experience escalated the depression.. .> > > > What do you use for strength? Do you have a strong faith you > > can > > > call on to help you?> > > > > > > > I envy you your energy. My hopping up and down hopped up and > > left!> > > > > > > > I know I haven't offered any really neat ideas to help you > but > > I > > > wanted to acknowledge your post and not ignore you.> > > > God Bless!> > > > > > > > MamaSher, age 70. IPF 3-06, OR. > > > > Nasturtiums> > > > Don't fret about tomorrow, God is already

there!> > > > > > > > Have a question about the tubing > we > > > wear........ .......> > > > > > > > > > > > I know there are many more people that have worn the oxy. > > tubing > > > a > > > > lot longer than me. This week, it has been over a year now, > > 24/7. > > > I > > > > can not go without it at all. Here is my dilemma.> > > > > > > > You all may have suggested to me the different ways to wear > the > > > > cannula, upwards or downwards (and in her lady's chamber)

> > > whatever. > > > > Anyhow, it is the most devastating part of PF for me. Others > > may > > > be > > > > different. I have come to a point that I can not take it > > anymore > > > > with the cannula. I even tried clothes pins on my clothes, > etc. > > > you > > > > name it.> > > > > > > > I am becoming increasingly depressed as too, I still am > wearing > > > the > > > > patch and have absolutely no feeling on the left side of my > > face > > > and > > > > head since my detached retinal surgery last March. I have an > > appt > > > > with surg Nov. 23rd to discuss cataract surg. The eye surg I > am > > > not > > > > concerned about, that will be great,

wish I could have it > > today, > > > it > > > > is the numbness of the face and head, eye patch which if I > > don't > > > wear > > > > it, everything is still blurry.> > > > > > > > I just would like to have the group here give me some > > suggestions > > > as > > > > how to deal with the tubing or place it so it doesn't pull.> > > > > > > > I am different, as every one of us is, in that I have so much > > > energy, > > > > am always hopping up and down, but slower these days, very > > busy, > > > and > > > > I keep the level of oxy. #5 when alone except when I am > working > > > > around here. Then 7-8. Actually the only disability I feel > > > (because > >

> > I have no pain anywhere)is this tubing. > > > > > > > > I hope someone here can give me some suggestions that will > help > > > me > > > > with this problem. I know we all are in it and facing it each > > and > > > > every day. But since the incident about 2 wks ago with the > > > workmen > > > > in here shutting off the power without telling me and I got > > sick, > > > and > > > > was sick for 3 days, I have become ultra depressed and can't > > seem > > > to > > > > snap out of it.> > > > > > > > I LOVE YOU THIS DAY !!> > > > Lou - (74) richmond-va> > > > IPF - 02> > > >> > >>

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