Re: Funny, You Don't Look Sick

December 10, 2006

i know just what you mean Lynn.

when i was still working, my bosses always told me i didn't look

sick. especially on a day i might ask to leave early because the

tightness in my chest was so bad. until the day they had to come and

get me off of the 2nd flight of stairs where i got stranded with a

part weighing about 40 pounds because i could no longer make it down

the stairs once i managed to get up them. that was the last day i

ever went to work..........

EG 10-05

>

> Hello All. With the pleasure of seeing old friends and all the

Holiday

> activity going on, I'm hearing this fraze come up alot. As someone

who

> was DX'd with Fibromyalgia decades ago, I should be use to getting

this

> question. What amazes me though, is that even with this hose up my

> nose, I still get a few who just don't seem to " get it " and

inevidably

> tell me - " You don't LOOK sick " .

>

> Here is a list of the 2006 best responses to that question.

>

> Even if you feel you can't really use these answers when people

ask,

> you can most certanly think of them and giggle.

>

> · And you look Intelligent!

>

> · And you don't look stupid!

>

> · Maybe it's Maybelline.

>

> · But I tried so hard!

>

> · Oh? You don't look like the bearer of prejudices. We all

> make mistakes * Cheery Smile *

>

> · Really? That's odd!

>

> · Really? (Look down at yourself) I'm cured!!!

>

> · Where did you get my medical degree from?

>

> · For when people are are being rude- I don't look ( Insert

> age here) either, but it doesn't change the fact I am!

>

> · Why thankyou honey, that's so sweet of you to say that!

>

> · I wasn't aware illnesses came mounted on a billboard!

>

> · Huh? What does sick look like?

>

> There's a well person striving to escape this body !

>

> · How sweet of you to say that. I've been so tired, I

haven't

> bathed in three days. And I was sort of worried about going out in

> public looking like this. So thanks for the compliment. It's really

made

> my day.

>

> · And I guess your X-ray vision isn't working too well today

> either! You should see how corroded some of my parts are on the

inside.

> Some of my organs are in their 90's, some in their 70's. It's hard

to

> keep track! ! !

>

> · Yeah, isn't it great. I guess I'm the healthiest looking

> sick person you've ever seen, huh? Isn't it weird how looks can

deceive.

>

> · Yep well it's nothing to get excited about !

>

> · Well I'm NOT sick, my body is!

>

> · What do you think " Don't judge a book by it's cover "

means?

>

> · Just because I look ok, doesn't mean I'm fine.

>

> · I work hard to look this good.

>

> · Are you flirting with me?

>

> · I have good and bad days, but I'll never be the way I was

> before I got sick.

>

> · Darn! I told Q this was the wrong host body!! I should go

> back to the mother ship.

>

> · This is my Alter-Ego!

>

> · Should I get a refund?

>

> · It's really good to know that the 4 hours it took me to

get

> out of bed, and get ready this morning wasn't wasted!

>

> · Really? That's not what my psychiatrist told me.

>

> · Oh gosh I didn't realise it was you who was blind. I mean

> people told me but I mus have gotten muddled, its the drugs you

know,

> but wow you're coping so well.……. *continue babbling til they back

> away*

>

> · You should see the straight jacket they make me wear!

>

> · Thanks! Funny, knowing that i dont look sick, gives me a

> new appreciation and patience for the people i might meet who look

> healthy and may not be.

>

> · Oh yeah? Check this out (show them something freaky)

>

> · Really? Ok lets trade bodies for the day!

>

> · What exactly does (insert illness) look like?

>

> · Ignorance is bliss I guess!

>

> · Would a bit of vomit help? Because I'm feeling quiet

> nauseous.

>

> · I guess hard work pay off!

>

> · Well of course not, I look like (insert name here) Duh!

>

> What is this " sick " you speak of?

>

> · Thanks! I only needed one painkiller today instead of 5!

>

> · oh good..... because " not sick " is just the look I was

> going for!

>

> http://www.butyoudontlooksick.com/about_us/

>

> Gu-Nite

>

December 10, 2006

Last Tues I went to a second pulm doc for his opinion. He studied my CAT scans and said he saw some scarring, but laughed and said I would be around for a long time and check back with him in late Feb. Now, what am I supposed to think?? First doc said IPF and I know something is wrong with me. SOB and chest pain.. not normal even for my 68 yr old body.

My sister, an RN who owns a home health co, never heard of IPF. I gave her some brochures. She and my husband agreed that pulm doc #2 was right and there is nothing wrong with me, sister added that "everyone is dying". Do you think they lack understanding or is it me?

Sister's comments on new Medicare rules on oxygen use was and I quote, "there are a lot of Nigerian scams billing medicare for oxygen". WHAT!!!! What does that have to do with our health. Get the scammers, help IPFers who have paid into the system out our A**es!

Love you ALL.. Gale in TX

December 10, 2006

Lynn,

Having lived with a chronic invisible disease most of my adult life, I fully understand this peeve. Some people can easily believe that you are a hyperchondriac rather than believe that you are actually sick. Even with the hose in the nose, people have said things like 'but you look so good' and 'you shouldn't be taking so much medicine'. I love it when they suggest some 'natural' cure that they have heard some scam artist hawking on television. They know absolutely nothing about autoimmune diseases nor lung diseases, but they know the cures!

One more, then I will shut up....I hate it when someone (and I get fooled into thinking they may actually care) asks me something about my illness and as soon as I mention a symptom they begin telling me thier own symptoms and maladies.....then I realize they only wanted an opening to complain. My sister called long distance and wanted to know all the latest about my medical situation, then immediatly starts telling me about her excema and some other skin irritation and her doctors, etc. She didn't care in the first place. I realize that people in general are like that and I usually just say, 'oh, I am feeling better or I'm good', but sometimes I believe someone may really be interested....but not.

I do have people in my life who care and I have all of you wonderful people who really 'get it'. My own situation has made me more sympathetic and patient with those who need to talk of thier illnesses and chanllenges in this life. I try to really listen.

I wish I could remember all these quick replies, but I will probably just continue to roll my eyes and steam!

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> > Hello All. With the pleasure of seeing old friends and all the Holiday> activity going on, I'm hearing this fraze come up alot. As someone who> was DX'd with Fibromyalgia decades ago, I should be use to getting this> question. What amazes me though, is that even with this hose up my> nose, I still get a few who just don't seem to "get it" and inevidably> tell me - "You don't LOOK sick".> > > > Here is a list of the 2006 best responses to that question.> > Even if you feel you can't really use these answers when people ask,> you can most certanly think of them and giggle.> > · And you look Intelligent!> > · And you don't look stupid!> > · Maybe it's Maybelline.> > · But I tried so hard!> > · Oh? You don't look like the bearer of prejudices. We all> make mistakes * Cheery Smile *> > · Really? That's odd!> > · Really? (Look down at yourself) I'm cured!!!> > · Where did you get my medical degree from?> > · For when people are are being rude- I don't look ( Insert> age here) either, but it doesn't change the fact I am!> > · Why thankyou honey, that's so sweet of you to say that!> > · I wasn't aware illnesses came mounted on a billboard!> > · Huh? What does sick look like?> > There's a well person striving to escape this body !> > · How sweet of you to say that. I've been so tired, I haven't> bathed in three days. And I was sort of worried about going out in> public looking like this. So thanks for the compliment. It's really made> my day.> > · And I guess your X-ray vision isn't working too well today> either! You should see how corroded some of my parts are on the inside.> Some of my organs are in their 90's, some in their 70's. It's hard to> keep track! ! !> > · Yeah, isn't it great. I guess I'm the healthiest looking> sick person you've ever seen, huh? Isn't it weird how looks can deceive.> > · Yep well it's nothing to get excited about !> > · Well I'm NOT sick, my body is!> > · What do you think "Don't judge a book by it's cover" means?> > · Just because I look ok, doesn't mean I'm fine.> > · I work hard to look this good.> > · Are you flirting with me?> > · I have good and bad days, but I'll never be the way I was> before I got sick.> > · Darn! I told Q this was the wrong host body!! I should go> back to the mother ship.> > · This is my Alter-Ego!> > · Should I get a refund?> > · It's really good to know that the 4 hours it took me to get> out of bed, and get ready this morning wasn't wasted!> > · Really? That's not what my psychiatrist told me.> > · Oh gosh I didn't realise it was you who was blind. I mean> people told me but I mus have gotten muddled, its the drugs you know,> but wow you're coping so well.……. *continue babbling til they back> away*> > · You should see the straight jacket they make me wear!> > · Thanks! Funny, knowing that i dont look sick, gives me a> new appreciation and patience for the people i might meet who look> healthy and may not be.> > · Oh yeah? Check this out (show them something freaky)> > · Really? Ok lets trade bodies for the day!> > · What exactly does (insert illness) look like?> > · Ignorance is bliss I guess!> > · Would a bit of vomit help? Because I'm feeling quiet> nauseous.> > · I guess hard work pay off!> > · Well of course not, I look like (insert name here) Duh!> > What is this "sick" you speak of?> > · Thanks! I only needed one painkiller today instead of 5!> > · oh good..... because "not sick" is just the look I was> going for!> > > > http://www.butyoudontlooksick.com/about_us/> > Gu-Nite>

December 10, 2006

Top 'o the mornin' to ya Joyce!

I'm laughing here because I know what you mean when people ask questions that appear to be caring and then dive right into a loooooooog description of their and/or families illness/symptoms!

Nobody can interrupt us here on the board, can they????

I can give you some "text book" stuff but I don't think anyone would actually do it. Welllllll, I might! But I have brass balls. lol

Say, "What specifically interests you about my condition"? Then when they dive off into something else, you interrupt and say, "Oh, I'm sorry, I must have misunderstood your question, would you ask me again"? Oh boy!

That comes from Assertive Training.

Have a good one girlfriend. Sher

"Don't worry about tomorrow, God is already there"

Re: Funny, You Don't Look Sick

Lynn,

Having lived with a chronic invisible disease most of my adult life, I fully understand this peeve. Some people can easily believe that you are a hyperchondriac rather than believe that you are actually sick. Even with the hose in the nose, people have said things like 'but you look so good' and 'you shouldn't be taking so much medicine'. I love it when they suggest some 'natural' cure that they have heard some scam artist hawking on television. They know absolutely nothing about autoimmune diseases nor lung diseases, but they know the cures!

One more, then I will shut up....I hate it when someone (and I get fooled into thinking they may actually care) asks me something about my illness and as soon as I mention a symptom they begin telling me thier own symptoms and maladies.....then I realize they only wanted an opening to complain. My sister called long distance and wanted to know all the latest about my medical situation, then immediatly starts telling me about her excema and some other skin irritation and her doctors, etc. She didn't care in the first place. I realize that people in general are like that and I usually just say, 'oh, I am feeling better or I'm good', but sometimes I believe someone may really be interested....but not.

I do have people in my life who care and I have all of you wonderful people who really 'get it'. My own situation has made me more sympathetic and patient with those who need to talk of thier illnesses and chanllenges in this life. I try to really listen.

I wish I could remember all these quick replies, but I will probably just continue to roll my eyes and steam!

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> > Hello All. With the pleasure of seeing old friends and all the Holiday> activity going on, I'm hearing this fraze come up alot. As someone who> was DX'd with Fibromyalgia decades ago, I should be use to getting this> question. What amazes me though, is that even with this hose up my> nose, I still get a few who just don't seem to "get it" and inevidably> tell me - "You don't LOOK sick".> > > > Here is a list of the 2006 best responses to that question.> > Even if you feel you can't really use these answers when people ask,> you can most certanly think of them and giggle.> > · And you look Intelligent!> > · And you don't look stupid!> > · Maybe it's Maybelline.> > · But I tried so hard!> > · Oh? You don't look like the bearer of prejudices. We all> make mistakes * Cheery Smile *> > · Really? That's odd!> > · Really? (Look down at yourself) I'm cured!!!> > · Where did you get my medical degree from?> > · For when people are are being rude- I don't look ( Insert> age here) either, but it doesn't change the fact I am!> > · Why thankyou honey, that's so sweet of you to say that!> > · I wasn't aware illnesses came mounted on a billboard!> > · Huh? What does sick look like?> > There's a well person striving to escape this body !> > · How sweet of you to say that. I've been so tired, I haven't> bathed in three days. And I was sort of worried about going out in> public looking like this. So thanks for the compliment. It's really made> my day.> > · And I guess your X-ray vision isn't working too well today> either! You should see how corroded some of my parts are on the inside.> Some of my organs are in their 90's, some in their 70's. It's hard to> keep track! ! !> > · Yeah, isn't it great. I guess I'm the healthiest looking> sick person you've ever seen, huh? Isn't it weird how looks can deceive.> > · Yep well it's nothing to get excited about !> > · Well I'm NOT sick, my body is!> > · What do you think "Don't judge a book by it's cover" means?> > · Just because I look ok, doesn't mean I'm fine.> > · I work hard to look this good.> > · Are you flirting with me?> > · I have good and bad days, but I'll never be the way I was> before I got sick.> > · Darn! I told Q this was the wrong host body!! I should go> back to the mother ship.> > · This is my Alter-Ego!> > · Should I get a refund?> > · It's really good to know that the 4 hours it took me to get> out of bed, and get ready this morning wasn't wasted!> > · Really? That's not what my psychiatrist told me.> > · Oh gosh I didn't realise it was you who was blind. I mean> people told me but I mus have gotten muddled, its the drugs you know,> but wow you're coping so well.……. *continue babbling til they back> away*> > · You should see the straight jacket they make me wear!> > · Thanks! Funny, knowing that i dont look sick, gives me a> new appreciation and patience for the people i might meet who look> healthy and may not be.> > · Oh yeah? Check this out (show them something freaky)> > · Really? Ok lets trade bodies for the day!> > · What exactly does (insert illness) look like?> > · Ignorance is bliss I guess!> > · Would a bit of vomit help? Because I'm feeling quiet> nauseous.> > · I guess hard work pay off!> > · Well of course not, I look like (insert name here) Duh!> > What is this "sick" you speak of?> > · Thanks! I only needed one painkiller today instead of 5!> > · oh good..... because "not sick" is just the look I was> going for!> > > > http://www.butyoudontlooksick.com/about_us/> > Gu-Nite>

December 10, 2006

Joyce;

When people ask me how I'm doing I just tell them " all yhings considered I'm doing great". The people that are not really interested, but are being polite, let it drop with that. Makes it easier for me as well.

Gordon ipf/uip 12/03

Re: Funny, You Don't Look Sick

Lynn,

Having lived with a chronic invisible disease most of my adult life, I fully understand this peeve. Some people can easily believe that you are a hyperchondriac rather than believe that you are actually sick. Even with the hose in the nose, people have said things like 'but you look so good' and 'you shouldn't be taking so much medicine'. I love it when they suggest some 'natural' cure that they have heard some scam artist hawking on television. They know absolutely nothing about autoimmune diseases nor lung diseases, but they know the cures!

One more, then I will shut up....I hate it when someone (and I get fooled into thinking they may actually care) asks me something about my illness and as soon as I mention a symptom they begin telling me thier own symptoms and maladies.....then I realize they only wanted an opening to complain. My sister called long distance and wanted to know all the latest about my medical situation, then immediatly starts telling me about her excema and some other skin irritation and her doctors, etc. She didn't care in the first place. I realize that people in general are like that and I usually just say, 'oh, I am feeling better or I'm good', but sometimes I believe someone may really be interested....but not.

I do have people in my life who care and I have all of you wonderful people who really 'get it'. My own situation has made me more sympathetic and patient with those who need to talk of thier illnesses and chanllenges in this life. I try to really listen.

I wish I could remember all these quick replies, but I will probably just continue to roll my eyes and steam!

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> > Hello All. With the pleasure of seeing old friends and all the Holiday> activity going on, I'm hearing this fraze come up alot. As someone who> was DX'd with Fibromyalgia decades ago, I should be use to getting this> question. What amazes me though, is that even with this hose up my> nose, I still get a few who just don't seem to "get it" and inevidably> tell me - "You don't LOOK sick".> > > > Here is a list of the 2006 best responses to that question.> > Even if you feel you can't really use these answers when people ask,> you can most certanly think of them and giggle.> > · And you look Intelligent!> > · And you don't look stupid!> > · Maybe it's Maybelline.> > · But I tried so hard!> > · Oh? You don't look like the bearer of prejudices. We all> make mistakes * Cheery Smile *> > · Really? That's odd!> > · Really? (Look down at yourself) I'm cured!!!> > · Where did you get my medical degree from?> > · For when people are are being rude- I don't look ( Insert> age here) either, but it doesn't change the fact I am!> > · Why thankyou honey, that's so sweet of you to say that!> > · I wasn't aware illnesses came mounted on a billboard!> > · Huh? What does sick look like?> > There's a well person striving to escape this body !> > · How sweet of you to say that. I've been so tired, I haven't> bathed in three days. And I was sort of worried about going out in> public looking like this. So thanks for the compliment. It's really made> my day.> > · And I guess your X-ray vision isn't working too well today> either! You should see how corroded some of my parts are on the inside.> Some of my organs are in their 90's, some in their 70's. It's hard to> keep track! ! !> > · Yeah, isn't it great. I guess I'm the healthiest looking> sick person you've ever seen, huh? Isn't it weird how looks can deceive.> > · Yep well it's nothing to get excited about !> > · Well I'm NOT sick, my body is!> > · What do you think "Don't judge a book by it's cover" means?> > · Just because I look ok, doesn't mean I'm fine.> > · I work hard to look this good.> > · Are you flirting with me?> > · I have good and bad days, but I'll never be the way I was> before I got sick.> > · Darn! I told Q this was the wrong host body!! I should go> back to the mother ship.> > · This is my Alter-Ego!> > · Should I get a refund?> > · It's really good to know that the 4 hours it took me to get> out of bed, and get ready this morning wasn't wasted!> > · Really? That's not what my psychiatrist told me.> > · Oh gosh I didn't realise it was you who was blind. I mean> people told me but I mus have gotten muddled, its the drugs you know,> but wow you're coping so well.……. *continue babbling til they back> away*> > · You should see the straight jacket they make me wear!> > · Thanks! Funny, knowing that i dont look sick, gives me a> new appreciation and patience for the people i might meet who look> healthy and may not be.> > · Oh yeah? Check this out (show them something freaky)> > · Really? Ok lets trade bodies for the day!> > · What exactly does (insert illness) look like?> > · Ignorance is bliss I guess!> > · Would a bit of vomit help? Because I'm feeling quiet> nauseous.> > · I guess hard work pay off!> > · Well of course not, I look like (insert name here) Duh!> > What is this "sick" you speak of?> > · Thanks! I only needed one painkiller today instead of 5!> > · oh good..... because "not sick" is just the look I was> going for!> > > > http://www.butyoudontlooksick.com/about_us/> > Gu-Nite>

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.15.15/581 - Release Date: 12/9/2006 3:41 PM

December 10, 2006

Hi Gale and others,

How strange Gale, my second opinion doctor told me he doubts very much that I have IPF. He said the only way to tell for sure is through a lung biopsy, but since I have so much wrong with me that isn't an opion now. He claims that since my CAT Scan showed "ground glass" then it is most likely Non Specific Interestital Pneumonia and this goes into remission and not the life sentence that IPF is. 5 years ago I was told I would die within the year - well I'm still here so I kind of believe this new doctor about this disease going into remission. Something got better with me and then this year I got worse again, but now I think I'm getting better. The NSIP is often misdiagonised as IPF, a good question for all your doctors. Hope this helps.

Dee

Re: Re: Funny, You Don't Look Sick

Last Tues I went to a second pulm doc for his opinion. He studied my CAT scans and said he saw some scarring, but laughed and said I would be around for a long time and check back with him in late Feb. Now, what am I supposed to think?? First doc said IPF and I know something is wrong with me. SOB and chest pain.. not normal even for my 68 yr old body.

My sister, an RN who owns a home health co, never heard of IPF. I gave her some brochures. She and my husband agreed that pulm doc #2 was right and there is nothing wrong with me, sister added that "everyone is dying". Do you think they lack understanding or is it me?

Sister's comments on new Medicare rules on oxygen use was and I quote, "there are a lot of Nigerian scams billing medicare for oxygen". WHAT!!!! What does that have to do with our health. Get the scammers, help IPFers who have paid into the system out our A**es!

Love you ALL.. Gale in TX

December 10, 2006

Dang , sorry it took that much for them to get it.

LynnA

> >> > > > Hello All. With the pleasure of seeing old friends and all the > Holiday> > activity going on, I'm hearing this fraze come up alot. As someone > who> > was DX'd with Fibromyalgia decades ago, I should be use to getting > this> > question. What amazes me though, is that even with this hose up my> > nose, I still get a few who just don't seem to "get it" and > inevidably> > tell me - "You don't LOOK sick".> > > > > > > > Here is a list of the 2006 best responses to that question.> > > > Even if you feel you can't really use these answers when people > ask,> > you can most certanly think of them and giggle.> > > > · And you look Intelligent!> > > > · And you don't look stupid!> > > > · Maybe it's Maybelline.> > > > · But I tried so hard!> > > > · Oh? You don't look like the bearer of prejudices. We all> > make mistakes * Cheery Smile *> > > > · Really? That's odd!> > > > · Really? (Look down at yourself) I'm cured!!!> > > > · Where did you get my medical degree from?> > > > · For when people are are being rude- I don't look ( Insert> > age here) either, but it doesn't change the fact I am!> > > > · Why thankyou honey, that's so sweet of you to say that!> > > > · I wasn't aware illnesses came mounted on a billboard!> > > > · Huh? What does sick look like?> > > > There's a well person striving to escape this body !> > > > · How sweet of you to say that. I've been so tired, I > haven't> > bathed in three days. And I was sort of worried about going out in> > public looking like this. So thanks for the compliment. It's really > made> > my day.> > > > · And I guess your X-ray vision isn't working too well today> > either! You should see how corroded some of my parts are on the > inside.> > Some of my organs are in their 90's, some in their 70's. It's hard > to> > keep track! ! !> > > > · Yeah, isn't it great. I guess I'm the healthiest looking> > sick person you've ever seen, huh? Isn't it weird how looks can > deceive.> > > > · Yep well it's nothing to get excited about !> > > > · Well I'm NOT sick, my body is!> > > > · What do you think "Don't judge a book by it's cover" > means?> > > > · Just because I look ok, doesn't mean I'm fine.> > > > · I work hard to look this good.> > > > · Are you flirting with me?> > > > · I have good and bad days, but I'll never be the way I was> > before I got sick.> > > > · Darn! I told Q this was the wrong host body!! I should go> > back to the mother ship.> > > > · This is my Alter-Ego!> > > > · Should I get a refund?> > > > · It's really good to know that the 4 hours it took me to > get> > out of bed, and get ready this morning wasn't wasted!> > > > · Really? That's not what my psychiatrist told me.> > > > · Oh gosh I didn't realise it was you who was blind. I mean> > people told me but I mus have gotten muddled, its the drugs you > know,> > but wow you're coping so well.……. *continue babbling til they back> > away*> > > > · You should see the straight jacket they make me wear!> > > > · Thanks! Funny, knowing that i dont look sick, gives me a> > new appreciation and patience for the people i might meet who look> > healthy and may not be.> > > > · Oh yeah? Check this out (show them something freaky)> > > > · Really? Ok lets trade bodies for the day!> > > > · What exactly does (insert illness) look like?> > > > · Ignorance is bliss I guess!> > > > · Would a bit of vomit help? Because I'm feeling quiet> > nauseous.> > > > · I guess hard work pay off!> > > > · Well of course not, I look like (insert name here) Duh!> > > > What is this "sick" you speak of?> > > > · Thanks! I only needed one painkiller today instead of 5!> > > > · oh good..... because "not sick" is just the look I was> > going for!> > > > > > > > http://www.butyoudontlooksick.com/about_us/> > > > Gu-Nite> >>

December 10, 2006

I can relate Joyce, I feel so silly everytime I respond to what I think is a sincere question about my health, only to hear a monologe about "so and so's" great Aunt Sophie who had a neighbor whose son was dating a woman he worked with that had a Sister on o2.

LynnA

> >> >> > Hello All. With the pleasure of seeing old friends and all the Holiday> > activity going on, I'm hearing this fraze come up alot. As someone who> > was DX'd with Fibromyalgia decades ago, I should be use to getting> this> > question. What amazes me though, is that even with this hose up my> > nose, I still get a few who just don't seem to "get it" and inevidably> > tell me - "You don't LOOK sick".> >> >> >> > Here is a list of the 2006 best responses to that question.> >> > Even if you feel you can't really use these answers when people ask,> > you can most certanly think of them and giggle.> >> > · And you look Intelligent!> >> > · And you don't look stupid!> >> > · Maybe it's Maybelline.> >> > · But I tried so hard!> >> > · Oh? You don't look like the bearer of prejudices. We all> > make mistakes * Cheery Smile *> >> > · Really? That's odd!> >> > · Really? (Look down at yourself) I'm cured!!!> >> > · Where did you get my medical degree from?> >> > · For when people are are being rude- I don't look ( Insert> > age here) either, but it doesn't change the fact I am!> >> > · Why thankyou honey, that's so sweet of you to say that!> >> > · I wasn't aware illnesses came mounted on a billboard!> >> > · Huh? What does sick look like?> >> > There's a well person striving to escape this body !> >> > · How sweet of you to say that. I've been so tired, I haven't> > bathed in three days. And I was sort of worried about going out in> > public looking like this. So thanks for the compliment. It's really> made> > my day.> >> > · And I guess your X-ray vision isn't working too well today> > either! You should see how corroded some of my parts are on the> inside.> > Some of my organs are in their 90's, some in their 70's. It's hard to> > keep track! ! !> >> > · Yeah, isn't it great. I guess I'm the healthiest looking> > sick person you've ever seen, huh? Isn't it weird how looks can> deceive.> >> > · Yep well it's nothing to get excited about !> >> > · Well I'm NOT sick, my body is!> >> > · What do you think "Don't judge a book by it's cover" means?> >> > · Just because I look ok, doesn't mean I'm fine.> >> > · I work hard to look this good.> >> > · Are you flirting with me?> >> > · I have good and bad days, but I'll never be the way I was> > before I got sick.> >> > · Darn! I told Q this was the wrong host body!! I should go> > back to the mother ship.> >> > · This is my Alter-Ego!> >> > · Should I get a refund?> >> > · It's really good to know that the 4 hours it took me to get> > out of bed, and get ready this morning wasn't wasted!> >> > · Really? That's not what my psychiatrist told me.> >> > · Oh gosh I didn't realise it was you who was blind. I mean> > people told me but I mus have gotten muddled, its the drugs you know,> > but wow you're coping so well.……. *continue babbling til they> back> > away*> >> > · You should see the straight jacket they make me wear!> >> > · Thanks! Funny, knowing that i dont look sick, gives me a> > new appreciation and patience for the people i might meet who look> > healthy and may not be.> >> > · Oh yeah? Check this out (show them something freaky)> >> > · Really? Ok lets trade bodies for the day!> >> > · What exactly does (insert illness) look like?> >> > · Ignorance is bliss I guess!> >> > · Would a bit of vomit help? Because I'm feeling quiet> > nauseous.> >> > · I guess hard work pay off!> >> > · Well of course not, I look like (insert name here) Duh!> >> > What is this "sick" you speak of?> >> > · Thanks! I only needed one painkiller today instead of 5!> >> > · oh good..... because "not sick" is just the look I was> > going for!> >> >> >> > http://www.butyoudontlooksick.com/about_us/> >> > Gu-Nite> >>

December 10, 2006

Where on earth did that Doc get his Licence Gail? And your Sister with "everybody dies"????????? It is not you. I am no longer surprised by some of the amazing things that come out of peoples mouths when they can not deal with the full meaning of this disease. Some of the comments are just plain painful.

>> Last Tues I went to a second pulm doc for his opinion. He studied my CAT > scans and said he saw some scarring, but laughed and said I would be around for > a long time and check back with him in late Feb. Now, what am I supposed to > think?? First doc said IPF and I know something is wrong with me. SOB and > chest pain.. not normal even for my 68 yr old body.> > My sister, an RN who owns a home health co, never heard of IPF. I gave her > some brochures. She and my husband agreed that pulm doc #2 was right and > there is nothing wrong with me, sister added that "everyone is dying". Do you > think they lack understanding or is it me?> > Sister's comments on new Medicare rules on oxygen use was and I quote, > "there are a lot of Nigerian scams billing medicare for oxygen". WHAT!!!! What > does that have to do with our health. Get the scammers, help IPFers who have > paid into the system out our A**es!> > Love you ALL.. Gale in TX>

December 10, 2006

I'm a newbee to your on-line group...I did not know about the several

types of NSIP!!!!! Thanks for that information. I am on many medications

( Prednisone being paramount)

The first question I'm asked at each Dr. visit is " Are you any worse? "

I have usually been able to say, " No. " The amount of Prednisone have

lessened to about 1/2 of the original dose (over the past 17 months) but

I've had to increase it twice and then work my way back down again. .

I do have the fibrosis situation however...so I'll have to ask more

questions on my next visit. What about your energy level? Do you have

any suggestions on how to get mine back to somewhat normal?

Beth wrote:

> Dee,

>

> Hi, I also have NSIP. There are a couple of different types one is

> cellular NSIP and the other is fibrotic or fibrosing NSIP.

> Unfortunately I have fibrotic NSIP and while it does have a longer

> life expectancy than IPF, it has no effective treament. The good news

> is I may have more time to lose weight and get healthy for a lung

> transplant than I was initially told. The bad news is it is very

> likely that I will still need a transplant at some point.

>

> Cellular NSIP (the kind I don't have) does seem to respond to steroid

> treatment and also goes into long periods of remission. It sounds

> like this is what your pulmo believes you may have.

>

> I've read there is also a " mixed NSIP " but I don't know anything

> more about it.

>

> Here's hoping you go into remission for about 50 years!!

>

> */

> */Beth Fibrotic NSIP 06/06/*

> *//*

> */Don't try to explain it, just nod your head./*

> */Breathe in, breathe out. Move on. J. Buffett/*

> /*

>

> * Re: Re: Funny, You Don't Look Sick

>

> Last Tues I went to a second pulm doc for his opinion. He studied

> my CAT scans and said he saw some scarring, but laughed and said I

> would be around for a long time and check back with him in late

> Feb. Now, what am I supposed to think?? First doc said IPF and I

> know something is wrong with me. SOB and chest pain.. not normal

> even for my 68 yr old body.

>

> My sister, an RN who owns a home health co, never heard of IPF. I

> gave her some brochures. She and my husband agreed that pulm doc

> #2 was right and there is nothing wrong with me, sister added that

> " everyone is dying " . Do you think they lack understanding or is

> it me?

>

> Sister's comments on new Medicare rules on oxygen use was and I

> quote, " there are a lot of Nigerian scams billing medicare for

> oxygen " . WHAT!!!! What does that have to do with our health.

> Get the scammers, help IPFers who have paid into the system out

> our A**es!

>

> Love you ALL.. Gale in TX

>

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

>

>No virus found in this incoming message.

>Checked by AVG Free Edition.

>Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date: 12/9/2006

>

December 11, 2006

,

As far as energy level goes I don't really know what to tell you. Mine is definitely reduced from what it was a couple of years ago before fibrosis came to live with me. I think it reallly depends on what kind of damage the disease has already done. I have lost almost 60% of my lung capacity and function so realistically my energy level and stamina will never be what a "normal" 47 year old's would be.

What I can say is that pulmonary rehab did help tremendously towards getting me up and out and moving again. I do have more energy and stamina than I did before rehab. I have also continued in my hospital's "Wellness Center" since the end of rehab. In general the days I exercise are the days I feel better both physically and emotionally. Fatigue however is a fact of life that I'm learning to accomodate. It's frustrating but it is what it is and I'm learning to cope.

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

* Re: Re: Funny, You Don't Look Sick>> Last Tues I went to a second pulm doc for his opinion. He studied> my CAT scans and said he saw some scarring, but laughed and said I> would be around for a long time and check back with him in

late> Feb. Now, what am I supposed to think?? First doc said IPF and I> know something is wrong with me. SOB and chest pain.. not normal> even for my 68 yr old body.> > My sister, an RN who owns a home health co, never heard of IPF. I> gave her some brochures. She and my husband agreed that pulm doc> #2 was right and there is nothing wrong with me, sister added that> "everyone is dying". Do you think they lack understanding or is> it me?> > Sister's comments on new Medicare rules on oxygen use was and I> quote, "there are a lot of Nigerian scams billing medicare for> oxygen". WHAT!!!! What does that have to do with our health. > Get the scammers, help IPFers who have paid into the system out> our A**es!> > Love you ALL.. Gale in TX>>> >>----------- --------- --------- --------- --------- --------- -->>No

virus found in this incoming message.>Checked by AVG Free Edition.>Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date: 12/9/2006> >

December 11, 2006

Armede, I love the responses.I'll try them when someone is really

annoying me.

armede wrote:

> Dang , sorry it took that much for them to get it.

>

> LynnA

>

> > >

> > > Hello All. With the pleasure of seeing old friends and all the

> > Holiday

> > > activity going on, I'm hearing this fraze come up alot. As someone

> > who

> > > was DX'd with Fibromyalgia decades ago, I should be use to getting

> > this

> > > question. What amazes me though, is that even with this hose up my

> > > nose, I still get a few who just don't seem to " get it " and

> > inevidably

> > > tell me - " You don't LOOK sick " .

> > >

> > > Here is a list of the 2006 best responses to that question.

> > >

> > > Even if you feel you can't really use these answers when people

> > ask,

> > > you can most certanly think of them and giggle.

> > >

> > > · And you look Intelligent!

> > >

> > > · And you don't look stupid!

> > >

> > > · Maybe it's Maybelline.

> > >

> > > · But I tried so hard!

> > >

> > > · Oh? You don't look like the bearer of prejudices. We all

> > > make mistakes * Cheery Smile *

> > >

> > > · Really? That's odd!

> > >

> > > · Really? (Look down at yourself) I'm cured!!!

> > >

> > > · Where did you get my medical degree from?

> > >

> > > · For when people are are being rude- I don't look ( Insert

> > > age here) either, but it doesn't change the fact I am!

> > >

> > > · Why thankyou honey, that's so sweet of you to say that!

> > >

> > > · I wasn't aware illnesses came mounted on a billboard!

> > >

> > > · Huh? What does sick look like?

> > >

> > > There's a well person striving to escape this body !

> > >

> > > · How sweet of you to say that. I've been so tired, I

> > haven't

> > > bathed in three days. And I was sort of worried about going out in

> > > public looking like this. So thanks for the compliment. It's really

> > made

> > > my day.

> > >

> > > · And I guess your X-ray vision isn't working too well today

> > > either! You should see how corroded some of my parts are on the

> > inside.

> > > Some of my organs are in their 90's, some in their 70's. It's hard

> > to

> > > keep track! ! !

> > >

> > > · Yeah, isn't it great. I guess I'm the healthiest looking

> > > sick person you've ever seen, huh? Isn't it weird how looks can

> > deceive.

> > >

> > > · Yep well it's nothing to get excited about !

> > >

> > > · Well I'm NOT sick, my body is!

> > >

> > > · What do you think " Don't judge a book by it's cover "

> > means?

> > >

> > > · Just because I look ok, doesn't mean I'm fine.

> > >

> > > · I work hard to look this good.

> > >

> > > · Are you flirting with me?

> > >

> > > · I have good and bad days, but I'll never be the way I was

> > > before I got sick.

> > >

> > > · Darn! I told Q this was the wrong host body!! I should go

> > > back to the mother ship.

> > >

> > > · This is my Alter-Ego!

> > >

> > > · Should I get a refund?

> > >

> > > · It's really good to know that the 4 hours it took me to

> > get

> > > out of bed, and get ready this morning wasn't wasted!

> > >

> > > · Really? That's not what my psychiatrist told me.

> > >

> > > · Oh gosh I didn't realise it was you who was blind. I mean

> > > people told me but I mus have gotten muddled, its the drugs you

> > know,

> > > but wow you're coping so well.……. *continue babbling til they back

> > > away*

> > >

> > > · You should see the straight jacket they make me wear!

> > >

> > > · Thanks! Funny, knowing that i dont look sick, gives me a

> > > new appreciation and patience for the people i might meet who look

> > > healthy and may not be.

> > >

> > > · Oh yeah? Check this out (show them something freaky)

> > >

> > > · Really? Ok lets trade bodies for the day!

> > >

> > > · What exactly does (insert illness) look like?

> > >

> > > · Ignorance is bliss I guess!

> > >

> > > · Would a bit of vomit help? Because I'm feeling quiet

> > > nauseous.

> > >

> > > · I guess hard work pay off!

> > >

> > > · Well of course not, I look like (insert name here) Duh!

> > >

> > > What is this " sick " you speak of?

> > >

> > > · Thanks! I only needed one painkiller today instead of 5!

> > >

> > > · oh good..... because " not sick " is just the look I was

> > > going for!

> > >

> > > http://www.butyoudontlooksick.com/about_us/

> > >

> > > Gu-Nite

> > >

> >

>

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

>

>No virus found in this incoming message.

>Checked by AVG Free Edition.

>Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date: 12/9/2006

>

December 12, 2006

love the picks of the cat and puppies

pink joyce

> > >

> > > Hello All. With the pleasure of seeing old friends and all the

> > Holiday

> > > activity going on, I'm hearing this fraze come up alot. As

someone

> > who

> > > was DX'd with Fibromyalgia decades ago, I should be use to

getting

> > this

> > > question. What amazes me though, is that even with this hose up

my

> > > nose, I still get a few who just don't seem to " get it " and

> > inevidably

> > > tell me - " You don't LOOK sick " .

> > >

> > > Here is a list of the 2006 best responses to that question.

> > >

> > > Even if you feel you can't really use these answers when people

> > ask,

> > > you can most certanly think of them and giggle.

> > >

> > > · And you look Intelligent!

> > >

> > > · And you don't look stupid!

> > >

> > > · Maybe it's Maybelline.

> > >

> > > · But I tried so hard!

> > >

> > > · Oh? You don't look like the bearer of prejudices. We all

> > > make mistakes * Cheery Smile *

> > >

> > > · Really? That's odd!

> > >

> > > · Really? (Look down at yourself) I'm cured!!!

> > >

> > > · Where did you get my medical degree from?

> > >

> > > · For when people are are being rude- I don't look ( Insert

> > > age here) either, but it doesn't change the fact I am!

> > >

> > > · Why thankyou honey, that's so sweet of you to say that!

> > >

> > > · I wasn't aware illnesses came mounted on a billboard!

> > >

> > > · Huh? What does sick look like?

> > >

> > > There's a well person striving to escape this body !

> > >

> > > · How sweet of you to say that. I've been so tired, I

> > haven't

> > > bathed in three days. And I was sort of worried about going out

in

> > > public looking like this. So thanks for the compliment. It's

really

> > made

> > > my day.

> > >

> > > · And I guess your X-ray vision isn't working too well today

> > > either! You should see how corroded some of my parts are on the

> > inside.

> > > Some of my organs are in their 90's, some in their 70's. It's

hard

> > to

> > > keep track! ! !

> > >

> > > · Yeah, isn't it great. I guess I'm the healthiest looking

> > > sick person you've ever seen, huh? Isn't it weird how looks can

> > deceive.

> > >

> > > · Yep well it's nothing to get excited about !

> > >

> > > · Well I'm NOT sick, my body is!

> > >

> > > · What do you think " Don't judge a book by it's cover "

> > means?

> > >

> > > · Just because I look ok, doesn't mean I'm fine.

> > >

> > > · I work hard to look this good.

> > >

> > > · Are you flirting with me?

> > >

> > > · I have good and bad days, but I'll never be the way I was

> > > before I got sick.

> > >

> > > · Darn! I told Q this was the wrong host body!! I should go

> > > back to the mother ship.

> > >

> > > · This is my Alter-Ego!

> > >

> > > · Should I get a refund?

> > >

> > > · It's really good to know that the 4 hours it took me to

> > get

> > > out of bed, and get ready this morning wasn't wasted!

> > >

> > > · Really? That's not what my psychiatrist told me.

> > >

> > > · Oh gosh I didn't realise it was you who was blind. I mean

> > > people told me but I mus have gotten muddled, its the drugs you

> > know,

> > > but wow you're coping so well.……. *continue babbling til they

> back

> > > away*

> > >

> > > · You should see the straight jacket they make me wear!

> > >

> > > · Thanks! Funny, knowing that i dont look sick, gives me a

> > > new appreciation and patience for the people i might meet who

look

> > > healthy and may not be.

> > >

> > > · Oh yeah? Check this out (show them something freaky)

> > >

> > > · Really? Ok lets trade bodies for the day!

> > >

> > > · What exactly does (insert illness) look like?

> > >

> > > · Ignorance is bliss I guess!

> > >

> > > · Would a bit of vomit help? Because I'm feeling quiet

> > > nauseous.

> > >

> > > · I guess hard work pay off!

> > >

> > > · Well of course not, I look like (insert name here) Duh!

> > >

> > > What is this " sick " you speak of?

> > >

> > > · Thanks! I only needed one painkiller today instead of 5!

> > >

> > > · oh good..... because " not sick " is just the look I was

> > > going for!

> > >

> > > http://www.butyoudontlooksick.com/about_us/

> > >

> > > Gu-Nite

> > >

> >

>

December 12, 2006

hi linda

i went to high school in philadelphia with Debbie Zion. Any relation

to you?

pink joyce

>

> > Dee,

> >

> > Hi, I also have NSIP. There are a couple of different types one

is

> > cellular NSIP and the other is fibrotic or fibrosing NSIP.

> > Unfortunately I have fibrotic NSIP and while it does have a

longer

> > life expectancy than IPF, it has no effective treament. The good

news

> > is I may have more time to lose weight and get healthy for a lung

> > transplant than I was initially told. The bad news is it is very

> > likely that I will still need a transplant at some point.

> >

> > Cellular NSIP (the kind I don't have) does seem to respond to

steroid

> > treatment and also goes into long periods of remission. It

sounds

> > like this is what your pulmo believes you may have.

> >

> > I've read there is also a " mixed NSIP " but I don't know anything

> > more about it.

> >

> > Here's hoping you go into remission for about 50 years!!

> >

> > */

> > */Beth Fibrotic NSIP 06/06/*

> > *//*

> > */Don't try to explain it, just nod your head./*

> > */Breathe in, breathe out. Move on. J. Buffett/*

> > /*

> >

> > * Re: Re: Funny, You Don't Look

Sick

> >

> > Last Tues I went to a second pulm doc for his opinion. He

studied

> > my CAT scans and said he saw some scarring, but laughed and

said I

> > would be around for a long time and check back with him in

late

> > Feb. Now, what am I supposed to think?? First doc said IPF

and I

> > know something is wrong with me. SOB and chest pain.. not

normal

> > even for my 68 yr old body.

> >

> > My sister, an RN who owns a home health co, never heard of

IPF. I

> > gave her some brochures. She and my husband agreed that pulm

doc

> > #2 was right and there is nothing wrong with me, sister added

that

> > " everyone is dying " . Do you think they lack understanding or

is

> > it me?

> >

> > Sister's comments on new Medicare rules on oxygen use was and

I

> > quote, " there are a lot of Nigerian scams billing medicare for

> > oxygen " . WHAT!!!! What does that have to do with our

health.

> > Get the scammers, help IPFers who have paid into the system

out

> > our A**es!

> >

> > Love you ALL.. Gale in TX

> >

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

-----

> >

> >No virus found in this incoming message.

> >Checked by AVG Free Edition.

> >Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date:

12/9/2006

> >

>

December 12, 2006

Joyce, Sorry, I'm not related to her. But, I am a Girls High Girl!

Joyce wrote:

> hi linda

> i went to high school in philadelphia with Debbie Zion. Any relation

> to you?

> pink joyce

>

> >

> > > Dee,

> > >

> > > Hi, I also have NSIP. There are a couple of different types one

> is

> > > cellular NSIP and the other is fibrotic or fibrosing NSIP.

> > > Unfortunately I have fibrotic NSIP and while it does have a

> longer

> > > life expectancy than IPF, it has no effective treament. The good

> news

> > > is I may have more time to lose weight and get healthy for a lung

> > > transplant than I was initially told. The bad news is it is very

> > > likely that I will still need a transplant at some point.

> > >

> > > Cellular NSIP (the kind I don't have) does seem to respond to

> steroid

> > > treatment and also goes into long periods of remission. It

> sounds

> > > like this is what your pulmo believes you may have.

> > >

> > > I've read there is also a " mixed NSIP " but I don't know anything

> > > more about it.

> > >

> > > Here's hoping you go into remission for about 50 years!!

> > >

> > > */

> > > */Beth Fibrotic NSIP 06/06/*

> > > *//*

> > > */Don't try to explain it, just nod your head./*

> > > */Breathe in, breathe out. Move on. J. Buffett/*

> > > /*

> > >

> > > * Re: Re: Funny, You Don't Look

> Sick

> > >

> > > Last Tues I went to a second pulm doc for his opinion. He

> studied

> > > my CAT scans and said he saw some scarring, but laughed and

> said I

> > > would be around for a long time and check back with him in

> late

> > > Feb. Now, what am I supposed to think?? First doc said IPF

> and I

> > > know something is wrong with me. SOB and chest pain.. not

> normal

> > > even for my 68 yr old body.

> > >

> > > My sister, an RN who owns a home health co, never heard of

> IPF. I

> > > gave her some brochures. She and my husband agreed that pulm

> doc

> > > #2 was right and there is nothing wrong with me, sister added

> that

> > > " everyone is dying " . Do you think they lack understanding or

> is

> > > it me?

> > >

> > > Sister's comments on new Medicare rules on oxygen use was and

> I

> > > quote, " there are a lot of Nigerian scams billing medicare for

> > > oxygen " . WHAT!!!! What does that have to do with our

> health.

> > > Get the scammers, help IPFers who have paid into the system

> out

> > > our A**es!

> > >

> > > Love you ALL.. Gale in TX

> > >

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

> -----

> > >

> > >No virus found in this incoming message.

> > >Checked by AVG Free Edition.

> > >Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date:

> 12/9/2006

> > >

> >

>

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

>

>No virus found in this incoming message.

>Checked by AVG Free Edition.

>Version: 7.1.409 / Virus Database: 268.15.16/582 - Release Date: 12/11/2006

>

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