SCARED TO DEATH AND FIGHTING.......................................

[Guest guest]

Yes, I am scared to death. My right eye is worsening and getting

foggy. My appt with surgeon is Aug 26. He will probably tell me it

is not ready yet.

I can't get out by myself yet as it is way too hot for me and my liq.

oxy tanks in the light weight carrier are too heavy for my wrists up

and down the stairs. I had carpet tunnel syndrome surg. on both in

1982. They have never been the same for strength since. By the time

I put in her crate, get ready myself and fill the tanks with

oxy. I get to the door and am exhausted. Then I have to go out to

the hot car, roll the windows down, (taking 3 tanks for extras),

unlatch the hood and stick the d... screwdriver in the notch to click

on the a/c, (my LTd cROWN vIC IS 20 YEARS OLD BUT NOW BECOMING A

HASSLE. The heck with it, right? Just go with Earl. I have been

driving but not with the patch on. Doing good that way. We go to

eat out and then I am full, then I can't breathe. hahaha

My weight is not getting any better either, haven't lost any, dr.

took me off lasix 2 weeks ago also potassium too. I don't know what

is wrong with me except in a very special email from Bruce, he got me

back on track again. I invited him over for coffee, but he just

couldn't make it. hahaha There, see? Bruce? you got me smiling

again. Well, I guess I can't be floating around here happy all the

time, they would carry me away somewhere and dunk me in Calgon.

I lost the hearing in my right ear last year, and my left ear is

waning. Just so I don't lose my sight. I had an Aunt who was blind

and to see her maneuver was incredible. She always knew who was

behind her and us kids could never surprise her. So don't walk

behind me if I can't see. haha

I LOVE YOU THIS DAY!!!

Lou

IPF '02

[Guest guest]

Lou,

You are precious to us and well loved. I'm sorry you are going through this and that everything is so difficult and overwhelming. If I could fix it I would in heartbeat!!

Consider yourself hugged!!!

Love you!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

SCARED TO DEATH AND FIGHTING.......................................

Yes, I am scared to death. My right eye is worsening and getting foggy. My appt with surgeon is Aug 26. He will probably tell me it is not ready yet.I can't get out by myself yet as it is way too hot for me and my liq. oxy tanks in the light weight carrier are too heavy for my wrists up and down the stairs. I had carpet tunnel syndrome surg. on both in 1982. They have never been the same for strength since. By the time I put in her crate, get ready myself and fill the tanks with oxy. I get to the door and am exhausted. Then I have to go out to the hot car, roll the windows down, (taking 3 tanks for extras), unlatch the hood and stick the d... screwdriver in the notch to click on the a/c, (my LTd cROWN vIC IS 20 YEARS OLD BUT NOW BECOMING A HASSLE. The heck with it, right? Just go with Earl. I have been driving but not with the patch on. Doing good that way. We go to eat out and then I

am full, then I can't breathe. hahahaMy weight is not getting any better either, haven't lost any, dr. took me off lasix 2 weeks ago also potassium too. I don't know what is wrong with me except in a very special email from Bruce, he got me back on track again. I invited him over for coffee, but he just couldn't make it. hahaha There, see? Bruce? you got me smiling again. Well, I guess I can't be floating around here happy all the time, they would carry me away somewhere and dunk me in Calgon.I lost the hearing in my right ear last year, and my left ear is waning. Just so I don't lose my sight. I had an Aunt who was blind and to see her maneuver was incredible. She always knew who was behind her and us kids could never surprise her. So don't walk behind me if I can't see. hahaI LOVE YOU THIS DAY!!! LouIPF '02

[Guest guest]

Lou

You are such a fighter and a inspiration I pray for you and wish I could do more.

Walt, Whidbey Island Wa

IPF, NSIP, UIP, DIP 10/06

Life may not be the party we hoped for, but while we are here we might as well dance

Subject: Re: SCARED TO DEATH AND FIGHTING.......................................To: Breathe-Support Date: Friday, August 8, 2008, 12:28 PM

Lou,

You are precious to us and well loved. I'm sorry you are going through this and that everything is so difficult and overwhelming. If I could fix it I would in heartbeat!!

Consider yourself hugged!!!

Love you!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

SCARED TO DEATH AND FIGHTING.... ......... ......... ......... ........

Yes, I am scared to death. My right eye is worsening and getting foggy. My appt with surgeon is Aug 26. He will probably tell me it is not ready yet.I can't get out by myself yet as it is way too hot for me and my liq. oxy tanks in the light weight carrier are too heavy for my wrists up and down the stairs. I had carpet tunnel syndrome surg. on both in 1982. They have never been the same for strength since. By the time I put in her crate, get ready myself and fill the tanks with oxy. I get to the door and am exhausted. Then I have to go out to the hot car, roll the windows down, (taking 3 tanks for extras), unlatch the hood and stick the d... screwdriver in the notch to click on the a/c, (my LTd cROWN vIC IS 20 YEARS OLD BUT NOW BECOMING A HASSLE. The heck with it, right? Just go with Earl. I have been driving but not with the patch on. Doing good that way. We go to eat out and then I

am full, then I can't breathe. hahahaMy weight is not getting any better either, haven't lost any, dr. took me off lasix 2 weeks ago also potassium too. I don't know what is wrong with me except in a very special email from Bruce, he got me back on track again. I invited him over for coffee, but he just couldn't make it. hahaha There, see? Bruce? you got me smiling again. Well, I guess I can't be floating around here happy all the time, they would carry me away somewhere and dunk me in Calgon.I lost the hearing in my right ear last year, and my left ear is waning. Just so I don't lose my sight. I had an Aunt who was blind and to see her maneuver was incredible. She always knew who was behind her and us kids could never surprise her. So don't walk behind me if I can't see. hahaI LOVE YOU THIS DAY!!! LouIPF

'02

[Guest guest]

As I'd already expressed to Lou in private, there is nothing I find

scarier than loss of vision. I was very high risk for macular

degeneration. Now, not so high as its not likely to come before the PF

does me in. But, I've always been sensitive with anything regarding my

eyes. A few years ago I faced the possibility of loss of hearing and

while I know its awful, it just never hit me like vision does. You come

close to my eyes and I close them and turn.

I'd also say that I don't like PF but I sort of understand it and its

path. It's all the other things that can happen and combine with it I

find most frightening. Kidney failure scares me. PH scares me horribly.

The side effects of meds scare me. I don't know but it's like " I can

deal with one illness whatever it is, but the thought of multiple is

overwhelming sometimes. "

I think Scared to Death and Fighting is a phrase all of us will feel

from time to time. It's good to remember its normal and acceptable.

>

> Lou,

> You are precious to us and well loved. I'm sorry you are going

through this and that everything is so difficult and overwhelming. If I

could fix it I would in heartbeat!!

> Consider yourself hugged!!!

> Love you!

>

> Beth

> Age 48 Fibrotic NSIP 06/06 UCTD 07/08

>

> Change everything. Love and Forgive

>

>

>

>

>

> SCARED TO DEATH AND

FIGHTING.......................................

>

>

> Yes, I am scared to death. My right eye is worsening and getting

> foggy. My appt with surgeon is Aug 26. He will probably tell me it

> is not ready yet.

>

> I can't get out by myself yet as it is way too hot for me and my liq.

> oxy tanks in the light weight carrier are too heavy for my wrists up

> and down the stairs. I had carpet tunnel syndrome surg. on both in

> 1982. They have never been the same for strength since. By the time

> I put in her crate, get ready myself and fill the tanks with

> oxy. I get to the door and am exhausted. Then I have to go out to

> the hot car, roll the windows down, (taking 3 tanks for extras),

> unlatch the hood and stick the d... screwdriver in the notch to click

> on the a/c, (my LTd cROWN vIC IS 20 YEARS OLD BUT NOW BECOMING A

> HASSLE. The heck with it, right? Just go with Earl. I have been

> driving but not with the patch on. Doing good that way. We go to

> eat out and then I am full, then I can't breathe. hahaha

>

> My weight is not getting any better either, haven't lost any, dr.

> took me off lasix 2 weeks ago also potassium too. I don't know what

> is wrong with me except in a very special email from Bruce, he got me

> back on track again. I invited him over for coffee, but he just

> couldn't make it. hahaha There, see? Bruce? you got me smiling

> again. Well, I guess I can't be floating around here happy all the

> time, they would carry me away somewhere and dunk me in Calgon.

>

> I lost the hearing in my right ear last year, and my left ear is

> waning. Just so I don't lose my sight. I had an Aunt who was blind

> and to see her maneuver was incredible. She always knew who was

> behind her and us kids could never surprise her. So don't walk

> behind me if I can't see. haha

>

> I LOVE YOU THIS DAY!!!

> Lou

> IPF '02

>

[Guest guest]

Hi Bruce... I just wrote ML about being overwhelmed when we have so much to contend with...especially all at the same time. So I know how you feel about the "multiples".

I had a really good day today...Rich and I watched golf and I crocheted on a toy for my granddaughter. Even took a nap! Today was so good I may try the same thing tomorrow!

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

SCARED TO DEATH ANDFIGHTING.......................................>>> Yes, I am scared to death. My right eye is worsening and getting> foggy. My appt with surgeon is Aug 26. He will probably tell me it> is not ready yet.>> I can't get out by myself yet as it is way too hot for me and my liq.> oxy tanks in the light weight carrier are too heavy for my wrists up> and down the stairs. I had carpet tunnel syndrome surg. on both in> 1982. They have never been the same for strength since. By the time> I put in her crate, get ready myself and fill the tanks with> oxy. I get to the door and am exhausted. Then I have to go out to> the hot car, roll the windows down, (taking 3 tanks for extras),> unlatch the hood and stick the d... screwdriver in the notch to click> on the a/c, (my LTd cROWN vIC IS 20 YEARS OLD BUT NOW BECOMING A> HASSLE. The heck with it, right? Just go with Earl. I have been> driving but not with the patch on. Doing good that way. We go to> eat out and then I am full, then I can't breathe. hahaha>> My weight is not getting any better either, haven't lost any, dr.> took me off lasix 2 weeks ago also potassium too. I don't know what> is wrong with me except in a very special email from Bruce, he got me> back on track again. I invited him over for coffee, but he just> couldn't make it. hahaha There, see? Bruce? you got me smiling> again. Well, I guess I can't be floating around here happy all the> time, they would carry me away somewhere and dunk me in Calgon.>> I lost the hearing in my right ear last year, and my left ear is> waning. Just so I don't lose my sight. I had an Aunt who was blind> and to see her maneuver was incredible. She always knew who was> behind her and us kids could never surprise her. So don't walk> behind me if I can't see. haha>> I LOVE YOU THIS DAY!!!> Lou> IPF '02>

[Guest guest]

I can relate!!! At 9 yrs. old my eyes were 20/900. At 40, 20/1200. In 1991 I had Lasik and had 20/15. What a miracle. Then in Nov. 1996 due to a falling accident I had a detached retina in my right eye. After going totally blind in that eye, I had surgery and now have about 10% vision in that eye. They did cataract surgery to try to improve it but to no avail. I now only have usable vision in my left eye am totally scared of ANY eye problem in my good eye. I become paranoid and always wear glasses when doing anything that could cause a problem. I think we all have the commonality of PF but all of us are also fighting additional problems of a great magnitude. Some have organ, some physical, and ALL mental due to the lung problem. I also am fighting Social Security to get benefits and I am sure most of us have financial problems to add to everything else.

It is comforting to be in this leaky boat with such caring and understanding people. I am sure most of us are God fearing human beings and put a lot of our burden on him as he can carry the load better than we can. It also helps to have a spouse that puts up with us and our changes on a daily basis, as well as a good listener and supporter.

LOVE ALL YOU FOLKS!!!

    JOE/JOANIE JOE 60 IPF1/2008

GRIFFIN, GA.

-- Re: Re: SCARED TO DEATH AND FIGHTING.......................................

Hi Bruce... I just wrote ML about being overwhelmed when we have so much to contend with...especially all at the same time. So I know how you feel about the "multiples".

I had a really good day today...Rich and I watched golf and I crocheted on a toy for my granddaughter. Even took a nap! Today was so good I may try the same thing tomorrow!

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

SCARED TO DEATH ANDFIGHTING.......................................>>> Yes, I am scared to death. My right eye is worsening and getting> foggy. My appt with surgeon is Aug 26. He will probably tell me it> is not ready yet.>> I can't get out by myself yet as it is way too hot for me and my liq.> oxy tanks in the light weight carrier are too heavy for my wrists up> and down the stairs. I had carpet tunnel syndrome surg. on both in> 1982. They have never been the same for strength since. By the time> I put in her crate, get ready myself and fill the tanks with> oxy. I get to the door and am exhausted. Then I have to go out to> the hot car, roll the windows down, (taking 3 tanks for extras),> unlatch the hood and stick the d... screwdriver in the notch to click> on the a/c, (my LTd cROWN vIC IS 20 YEARS OLD BUT NOW BECOMING A> HASSLE. The heck with it, right? Just go with Earl. I have been> driving but not with the patch on. Doing good that way. We go to> eat out and then I am full, then I can't breathe. hahaha>> My weight is not getting any better either, haven't lost any, dr.> took me off lasix 2 weeks ago also potassium too. I don't know what> is wrong with me except in a very special email from Bruce, he got me> back on track again. I invited him over for coffee, but he just> couldn't make it. hahaha There, see? Bruce? you got me smiling> again. Well, I guess I can't be floating around here happy all the> time, they would carry me away somewhere and dunk me in Calgon.>> I lost the hearing in my right ear last year, and my left ear is> waning. Just so I don't lose my sight. I had an Aunt who was blind> and to see her maneuver was incredible. She always knew who was> behind her and us kids could never surprise her. So don't walk> behind me if I can't see. haha>> I LOVE YOU THIS DAY!!!> Lou> IPF '02>