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hello terri, well today was the first day back to work and what hell it was, i felt like every nerve was on fire in my lower back, knees, elbows, head, and from my jaw to my ears (which by the way wont stop ringing) it was truly the worst and longest day of my life (by the way i am a carpenter) and i love what i do but my hands are getting to the point that the dont like to do what i tell them to do. I have lost reflexes in both arms and now they want to tell me that its from carpell tunnel.but guess what they gave me steroids and it helped(lol) ofcorse it did thats what the treat everything with., i am seeing a V.A. doctor in hampton (dr hitchings) but i think i would do well to find another doc, i called him today to tell him about the problems im having and he never retured my call. im just so tired of the whole thing( worring that if i cant work that ill lose everything) i got to get to sleep,GOT TO WORK TOMORROW), LOVE TO ALL. NIGHT mosaicgirl1

wrote: Tony, It is great to have you join us. I live in Portsmouth so it is great to have someone in the area join the group. I have been going back and forth between the MS or NS diagnosis for some time, so I was wondering who your doctors are? If I ever get a diagnosis, I would like to have someone who has dealt with NS before. I see from your post that you are worried about working. What type of work do you do? Do you have a private disability policy through work? If you are worried this might happen talk to your HR benefits person. They can tell you about taking a short term disablity leave - mine was paid for three months. I ended up never going back but I did have a private long term disability that pays me 60% of my salary, so I am the lucky to

still have an income. Well, take care and let me know if you have both MS and NS. I can give you some resources for MS; they treated me for 6 months and I did get involved in some groups. Terri G.

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Terri

I also have a check from private insurance from my

employer. I was curious if this happened to you also.

When I got my ssd they lowered my check by that amount

& sent the difference & everytime I get an increase in

ssd they're going to lower my private check. Just

curious don't want to know any amounts to repect your

privacy. LOL Not looking for a loan unless you were

the powerball winner.

grannylunatic@...

__________________________________________________

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Terri

I also have a check from private insurance from my

employer. I was curious if this happened to you also.

When I got my ssd they lowered my check by that amount

& sent the difference & everytime I get an increase in

ssd they're going to lower my private check. Just

curious don't want to know any amounts to repect your

privacy. LOL Not looking for a loan unless you were

the powerball winner.

grannylunatic@...

__________________________________________________

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Terri

I also have a check from private insurance from my

employer. I was curious if this happened to you also.

When I got my ssd they lowered my check by that amount

& sent the difference & everytime I get an increase in

ssd they're going to lower my private check. Just

curious don't want to know any amounts to repect your

privacy. LOL Not looking for a loan unless you were

the powerball winner.

grannylunatic@...

__________________________________________________

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,

I do not have my SSD yet, but the private company will decrease their

amount by the amount that I will get from Social Security. I had such a

great employer, this was told to me up front. They did not make me fend

for myself. They helped me the entire way. I was very lucky.

Terri G.

>

>

> Terri

> I also have a check from private insurance from my

> employer. I was curious if this happened to you also.

> When I got my ssd they lowered my check by that amount

> & sent the difference & everytime I get an increase in

> ssd they're going to lower my private check. Just

> curious don't want to know any amounts to repect your

> privacy. LOL Not looking for a loan unless you were

> the powerball winner.

>

> grannylunatic@...

>

>

>

> __________________________________________________

>

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,

I do not have my SSD yet, but the private company will decrease their

amount by the amount that I will get from Social Security. I had such a

great employer, this was told to me up front. They did not make me fend

for myself. They helped me the entire way. I was very lucky.

Terri G.

>

>

> Terri

> I also have a check from private insurance from my

> employer. I was curious if this happened to you also.

> When I got my ssd they lowered my check by that amount

> & sent the difference & everytime I get an increase in

> ssd they're going to lower my private check. Just

> curious don't want to know any amounts to repect your

> privacy. LOL Not looking for a loan unless you were

> the powerball winner.

>

> grannylunatic@...

>

>

>

> __________________________________________________

>

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  • 3 months later...
Guest guest

So glad she's going to be OK....Conniemosaicgirl1 wrote: Hey guys,Today is the first day I have had a chance to read some posts and seehow everyone is doing. Just know that you are all in my prayers andthoughts and hoping you are all well. My niece was in a bad accidentlast Friday. She has a skull fracture (with a huge laceration), herspleen had to be removed, she has multiple fractured (but stable)vertebraes, road rash, etc.She was taken off the vent yesterday and she immediately startedtalking. Today is her birthday - and the whole family is going to behere. She requested some Iced Tea today. woohoo.Well, gotta run. There is going to be a big party in her honor in theconference room but she cannot attend. We are taking

picture of her.I will be back regular soon. Love to you guys,Terri

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So glad she's going to be OK....Conniemosaicgirl1 wrote: Hey guys,Today is the first day I have had a chance to read some posts and seehow everyone is doing. Just know that you are all in my prayers andthoughts and hoping you are all well. My niece was in a bad accidentlast Friday. She has a skull fracture (with a huge laceration), herspleen had to be removed, she has multiple fractured (but stable)vertebraes, road rash, etc.She was taken off the vent yesterday and she immediately startedtalking. Today is her birthday - and the whole family is going to behere. She requested some Iced Tea today. woohoo.Well, gotta run. There is going to be a big party in her honor in theconference room but she cannot attend. We are taking

picture of her.I will be back regular soon. Love to you guys,Terri

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Oh, my. That must have been terrifying for the whole family. Take care of yourself, Terri, and eat a piece of birthday cake for me.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: helloDate: Wed, 24 May 2006 22:12:08 -0000Hey guys,Today is the first day I have had a chance to read some posts and seehow everyone is doing. Just know that you are all in my prayers andthoughts and hoping you are all well. My niece was in a bad accidentlast Friday. She has a skull fracture (with a huge laceration), herspleen had to be removed, she has multiple fractured (but stable)vertebraes, road rash, etc.She was taken off the vent yesterday and she immediately startedtalking. Today is her birthday - and the whole family is going to behere. She requested some Iced Tea today. woohoo.Well, gotta run. There is going to be a big party in her honor in theconference room but she cannot attend. We are taking picture of her.I will be back regular soon. Love to you guys,Terri~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Oh, Terri - I'll keep your neice in my prayers. I'm glad she is off the vent. Hugs to you, Jeanniemosaicgirl1 wrote: Hey guys,Today is the first day I have had a chance to read some posts and seehow everyone is doing. Just know that you are all in my prayers andthoughts and hoping you are all well. My niece was in a bad accidentlast Friday. She has a skull fracture (with a huge laceration), herspleen had to be removed, she has multiple fractured (but stable)vertebraes, road rash, etc.She was taken off the vent yesterday and she immediately startedtalking. Today is her birthday - and the whole family is going to behere. She requested some

Iced Tea today. woohoo.Well, gotta run. There is going to be a big party in her honor in theconference room but she cannot attend. We are taking picture of her.I will be back regular soon. Love to you guys,Terri

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  • 2 months later...
Guest guest

Hi Everyone!

I just wanted to let you guys know that I am out here - still reading posts and praying for all of you. I am having spells of chronic Bell's palsy and trigeminal neuralgia so on the days I feel well I try to clean or do my mosaics or something away from the computer.

I miss all of you and am not seeing another doc until after my son's wedding (Aug 12) but I am getting ready to have my 4th chest CT this year to see if the nodes have enlarged or are still there. Please pray and send good thoughts that I might actually get a true dx and treatment.

I wanted to let all of you know how much I appreciate each and everyone of you. You are all like family to me and even though we don't always agree we all come back to support one another. Just know each and every day, even if I don't post for awhile, that you are all in my heart, thoughts and prayers at all times.

I am just waiting for this period of pain to pass and then you know that my bathroom humor will be back in full swing.

Take care my family.

Terri G.

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  • 2 years later...

how do you tell (if you tell) your sibblings that you are going to die of this disease? my oldest sister and her husband know and have been very supportive in taking me to doctors, hospitals and even helping with medical bills. the others? i'm not sure if they fully know how serious this is and that there is no cure. one sister (the youngest) i'm not sure if she fully knows or just won't accept it but every now and then i want to take them aside one by one and tell them.

in any case, i'm going to disneyland on my birthday (free admisson)!! two sisters and one nephew is going along. sounds a little strange for a grown man wanting to go to disneyland, but what the heck, i love that place and it's been 12 yrs. since my last visit. and, i'll be useing a wheel chair to get around plus my sisters tell me we all get to the front of the line!!

oh yes, there's a bucket list being drawn up and at the top is a round of golf and dinner with clint eastwood at pebble beach! plus go to the moon, orbit the earth, hey, think high. if only there was some way to reach clint eastwood with my wish.

i am very active in the moose and that seems to keep me going, have a lot of friends in many other lodges, the district, state and was even planning (and still plan) on retireing at mooseheaven near jacksonville fla., but need 3 more yrs. of membership to qualify. i know i'll make it!!

yes this is a terrible disease and it has taken me 3 1/2 yrs. to get this far and i plan on at least another 10 or even more yrs. to go.

every time i go to the pharmacy for refills i ask the pharmacist why do i need all these pills? and by the time i get home SOB i say to my self, to fight, darn it, to fight to stay alive for as long as i can.

there, i fell a lot better.

your air friend

ken overman

To: Breathe-Support Sent: Wednesday, February 25, 2009 2:28:09 AMSubject: Re: Hello

Oh Ken, let it out. I can feel how this hurts you. I am so sorry.

Genie, I can imagine how much you want your parents to understand and be there for you and how much it is hurting you.

I am sending my prayers for both of you.

Margaret

From: Overman <kenover44 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 22, 2009 11:12:54 PMSubject: Re: Hello

From: Overman <kenover44 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. . comSent: Sunday, February 22, 2009 11:58:30 PMSubject: Re: Hello

i have 4 sisters and 1 brother, one sister (the oldest) and her husband knows of the serious of this disease (time out)!!!!!!!! !!!!!!!! I'm crying

From: Regina Pennington <rpennington71@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 22, 2009 5:06:53 PMSubject: Re: Hello

No one in my family understands. They think it will cure itself in a little while if I just take better care of myself. I try to tell them it is incurable but they do not listen.Genie

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 22, 2009 5:57:42 PMSubject: Re: Hello

A year is a long time...you have some history together. You will know what you need to do Genie. Just look inside yourself.

Life is what happens when we're making other plans.

It's good you are here. You will have support and help with/through your disease process here.

Do you have family that are supportive?

Hopefully close to you?

And what about friends?

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

Hello

I just don't know what to do.. My boyfriend does not seem to understandmy pulmonary fibrosis. I stay real sick and he wants me to come andsee him instead of him driving to see me. The other day, I met him andthen could barely get back home because I was so sick. He says that Idon't care or love him if I don't go and meet him. I was wondering hasanyone went through this. I beginning to think he does not care. Ijust need to know if anyone else has been through this.Genie

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yes i do fell a lot better. i'm tired now so i'm off to bed.

good night my friends

ken

To: Breathe-Support Sent: Friday, February 27, 2009 2:07:04 AMSubject: Re: Hello

how do you tell (if you tell) your sibblings that you are going to die of this disease? my oldest sister and her husband know and have been very supportive in taking me to doctors, hospitals and even helping with medical bills. the others? i'm not sure if they fully know how serious this is and that there is no cure. one sister (the youngest) i'm not sure if she fully knows or just won't accept it but every now and then i want to take them aside one by one and tell them.

in any case, i'm going to disneyland on my birthday (free admisson)!! two sisters and one nephew is going along. sounds a little strange for a grown man wanting to go to disneyland, but what the heck, i love that place and it's been 12 yrs. since my last visit. and, i'll be useing a wheel chair to get around plus my sisters tell me we all get to the front of the line!!

oh yes, there's a bucket list being drawn up and at the top is a round of golf and dinner with clint eastwood at pebble beach! plus go to the moon, orbit the earth, hey, think high. if only there was some way to reach clint eastwood with my wish.

i am very active in the moose and that seems to keep me going, have a lot of friends in many other lodges, the district, state and was even planning (and still plan) on retireing at mooseheaven near jacksonville fla., but need 3 more yrs. of membership to qualify. i know i'll make it!!

yes this is a terrible disease and it has taken me 3 1/2 yrs. to get this far and i plan on at least another 10 or even more yrs. to go.

every time i go to the pharmacy for refills i ask the pharmacist why do i need all these pills? and by the time i get home SOB i say to my self, to fight, darn it, to fight to stay alive for as long as i can.

there, i fell a lot better.

your air friend

ken overman

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, February 25, 2009 2:28:09 AMSubject: Re: Hello

Oh Ken, let it out. I can feel how this hurts you. I am so sorry.

Genie, I can imagine how much you want your parents to understand and be there for you and how much it is hurting you.

I am sending my prayers for both of you.

Margaret

From: Overman <kenover44 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 22, 2009 11:12:54 PMSubject: Re: Hello

From: Overman <kenover44 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. . comSent: Sunday, February 22, 2009 11:58:30 PMSubject: Re: Hello

i have 4 sisters and 1 brother, one sister (the oldest) and her husband knows of the serious of this disease (time out)!!!!!!!! !!!!!!!! I'm crying

From: Regina Pennington <rpennington71@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 22, 2009 5:06:53 PMSubject: Re: Hello

No one in my family understands. They think it will cure itself in a little while if I just take better care of myself. I try to tell them it is incurable but they do not listen.Genie

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 22, 2009 5:57:42 PMSubject: Re: Hello

A year is a long time...you have some history together. You will know what you need to do Genie. Just look inside yourself.

Life is what happens when we're making other plans.

It's good you are here. You will have support and help with/through your disease process here.

Do you have family that are supportive?

Hopefully close to you?

And what about friends?

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

Hello

I just don't know what to do.. My boyfriend does not seem to understandmy pulmonary fibrosis. I stay real sick and he wants me to come andsee him instead of him driving to see me. The other day, I met him andthen could barely get back home because I was so sick. He says that Idon't care or love him if I don't go and meet him. I was wondering hasanyone went through this. I beginning to think he does not care. Ijust need to know if anyone else has been through this.Genie

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Ken I love your statement: "every time i go to the pharmacy for refills i ask the pharmacist why do i need all these pills? and by the time i get home SOB i say to my self, to fight, darn it, to fight to stay alive for as long as i can."

BTW, the first time i went to Disneyland in 1967, it was "senior citizens day"

you are never to old for Disney, It is definitely on my bucket list!!!

at downtown disney in orlando, there is a statue of Cinderella. the first time i saw it, i had my daughter take my picture with it -- Cinderella used to be one of my favorite stories.

Duck was my favorite cartoon character . (could not relate to Mickey )

bought myself a Cinderella watch last year, love it! it has a pink band

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: HelloTo: Breathe-Support Date: Friday, February 27, 2009, 5:07 AM

how do you tell (if you tell) your sibblings that you are going to die of this disease? my oldest sister and her husband know and have been very supportive in taking me to doctors, hospitals and even helping with medical bills. the others? i'm not sure if they fully know how serious this is and that there is no cure. one sister (the youngest) i'm not sure if she fully knows or just won't accept it but every now and then i want to take them aside one by one and tell them.

in any case, i'm going to disneyland on my birthday (free admisson)!! two sisters and one nephew is going along. sounds a little strange for a grown man wanting to go to disneyland, but what the heck, i love that place and it's been 12 yrs. since my last visit. and, i'll be useing a wheel chair to get around plus my sisters tell me we all get to the front of the line!!

oh yes, there's a bucket list being drawn up and at the top is a round of golf and dinner with clint eastwood at pebble beach! plus go to the moon, orbit the earth, hey, think high. if only there was some way to reach clint eastwood with my wish.

i am very active in the moose and that seems to keep me going, have a lot of friends in many other lodges, the district, state and was even planning (and still plan) on retireing at mooseheaven near jacksonville fla., but need 3 more yrs. of membership to qualify. i know i'll make it!!

yes this is a terrible disease and it has taken me 3 1/2 yrs. to get this far and i plan on at least another 10 or even more yrs. to go.

every time i go to the pharmacy for refills i ask the pharmacist why do i need all these pills? and by the time i get home SOB i say to my self, to fight, darn it, to fight to stay alive for as long as i can.

there, i fell a lot better.

your air friend

ken overman

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, February 25, 2009 2:28:09 AMSubject: Re: Hello

Oh Ken, let it out. I can feel how this hurts you. I am so sorry.

Genie, I can imagine how much you want your parents to understand and be there for you and how much it is hurting you.

I am sending my prayers for both of you.

Margaret

From: Overman <kenover44 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 22, 2009 11:12:54 PMSubject: Re: Hello

From: Overman <kenover44 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. . comSent: Sunday, February 22, 2009 11:58:30 PMSubject: Re: Hello

i have 4 sisters and 1 brother, one sister (the oldest) and her husband knows of the serious of this disease (time out)!!!!!!!! !!!!!!!! I'm crying

From: Regina Pennington <rpennington71@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 22, 2009 5:06:53 PMSubject: Re: Hello

No one in my family understands. They think it will cure itself in a little while if I just take better care of myself. I try to tell them it is incurable but they do not listen.Genie

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 22, 2009 5:57:42 PMSubject: Re: Hello

A year is a long time...you have some history together. You will know what you need to do Genie. Just look inside yourself.

Life is what happens when we're making other plans.

It's good you are here. You will have support and help with/through your disease process here.

Do you have family that are supportive?

Hopefully close to you?

And what about friends?

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

Hello

I just don't know what to do.. My boyfriend does not seem to understandmy pulmonary fibrosis. I stay real sick and he wants me to come andsee him instead of him driving to see me. The other day, I met him andthen could barely get back home because I was so sick. He says that Idon't care or love him if I don't go and meet him. I was wondering hasanyone went through this. I beginning to think he does not care. Ijust need to know if anyone else has been through this.Genie

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Ken

I tell everyone the same way. Simply, Factually. I do make trips knowing

and saying it might be my last chance. My life and my actions just make

more sense to me and to others knowing the facts. Now, I also fill them

in on my mood and attitude. I do think that helps in my case.

That is:

I would prefer not to have this disease. It will progress until I'm less

mobile and then ultimately reach the stage of needing hospice. I will

not be in tremendous pain or anything as I see my final days at home

spending time with those I love, even online and on the phone, and on

lots of morphine. I'm not scared of death. I'm scared of pain and

suffering but one can live with this disease with minimal of that

(compared to other diseases). I'm also thankful its a disease that just

impacts my body and not my brain. I'm going to live my life to the

fullest though until that time comes. I made my plans regarding death or

incapacitation and now all I have to do is live. I have my van and

powerchair for when that becomes my only way to travel.

From then on I am active and upbeat most of the time but open and

honest. When I go to the pulmonologist, I''m honest in explaining to

them what is said to family and friends and discussing any progression.

I know its difficult for them but I think its easier ultimately that we

can be honest. I can discuss decisions logically since not avoiding the

full reality around them. Right now I'm dealing with a major decision

and that is to lease a house as roommates with my ex-wife, best friend,

closest family. She realizes that its not a long term thing and she'll

be moving again sooner than she wishes. I even calculated based on my

own personal situation a few odds and she has them. They are direct. The

odds of me dying within the next year are about 20% and the odds of me

dying before we complete a two year lease are about 67%. The odds of me

dying within three years are over 90%. So, we're seeking a two year

lease with an option for a third and a termination clause upon death.

Now I fully hope to beat those odds as I'm not a statistic. But, I

couldn't enter into a roommate situation without her fully understanding

them. She had to make a choice that she's comfortable with and I would

have felt I was lying not to lay all the facts out.

I even joke about it. Guess I can joke about any topic, but I do with my

doctors as well. For instance, I'm with my nephrologist discussing my

kidneys. If I didn't have IPF, they would be a concern as they are

around 50% function. However, the reality is they are going to long out

last my lungs so not going to worry about them (just no CT's with

contrast that could take them down). In talking to about the fact

she could have to move again fairly soon, I said she had to decide as

she was stuck with all the moving work when I die. I said it would be

easy for me as I wouldn't be doing anything.

Now I'm only able to go to those extremes because she's comfortable with

it and because I was open and honest from the day of the diagnosis.

Also, I'm sure she went home that day and went straight to the internet.

But I don't want to spend my remaining time dancing around the truth or

thinking what have I said to Jane vs. Jack. Maybe the complete honesty

sounds a bit harsh but I do believe ultimately its better for all. Even

for those who have the most trouble with it, because it gives them time

to go through all the stages. I don't personally feel it would be fair

if I had three or five or however many years to prepare and they had

none. I need them at the same point as me, not mourning, just loving and

understanding.

Meanwhile I am as active as I can be. I respect the disease. I avoid

germs (no sick friends or family-another reason to be completely open).

I smile and laugh and enjoy. Most of my time with family is just normal

time. But when the other subjects do need discussion, I discuss. Then

back to life.

I'm not telling anyone how to handle it or how they should feel, just

how I do. I think one thing is that I'm not angry about it. I'd prefer

not to have it but not too long before this disease I did go through a

horrible period of mental illness and it was far worse so I have a

unique perspective. I also see my counselor regularly and that helps I

know. I have a firm commitment she'll be with me until death. Even when

I can't get to her, she'll get to me. I have what's called " radical

acceptance " and know I can't do anything about it, nor about the past,

nor can I prevent the future. But, I can make the most of today and I'm

doing so.

As to Disneyworld, I think its great. And, I would be billing it as my

last trip to Disneyworld or bucket list or wanting to before I died. Is

that a downer? I don't think so. It explains why you are so happy about

it. Makes it even a more special experience but doesn't detract from the

fun. Had we only lived our whole life making sure we did the things we

wanted. I may make my own trip to Disneyworld. My bucket list is a bit

more realistic than yours and I update it regularly. Last year it was a

great trip to NC to see all my family I hadn't seen for years. This year

it includes a friend I haven't seen for 27 years.

I don't dwell on the negatives but I'm not going to hide them and I'll

bring them up when they are relevant to life.

I'll tell you too from a personal basis. Until the last three years I

was a very private person who never discussed personal things or

feelings. People didn't feel they could really know me. I never talked

about my childhood or much about the past. So its been a huge change for

me. But just being open and honest with the facts and my feelings is so

much easier. It also makes all the relationships so much more real.

>

> how do you tell (if you tell) your sibblings that you are going to die

of this disease? my oldest sister and her husband know and have been

very supportive in taking me to doctors, hospitals and even helping with

medical bills. the others? i'm not sure if they fully know how serious

this is and that there is no cure. one sister (the youngest) i'm not

sure if she fully knows or just won't accept it but every now and then i

want to take them aside one by one and tell them.

>

> in any case, i'm going to disneyland on my birthday (free admisson)!!

two sisters and one nephew is going along. sounds a little strange for a

grown man wanting to go to disneyland, but what the heck, i love that

place and it's been 12 yrs. since my last visit. and, i'll be useing a

wheel chair to get around plus my sisters tell me we all get to the

front of the line!!

>

> oh yes, there's a bucket list being drawn up and at the top is a round

of golf and dinner with clint eastwood at pebble beach! plus go to the

moon, orbit the earth, hey, think high. if only there was some way to

reach clint eastwood with my wish.

>

> i am very active in the moose and that seems to keep me going, have a

lot of friends in many other lodges, the district, state and was even

planning (and still plan) on retireing at mooseheaven near jacksonville

fla., but need 3 more yrs. of membership to qualify. i know i'll make

it!!

>

> yes this is a terrible disease and it has taken me 3 1/2 yrs. to get

this far and i plan on at least another 10 or even more yrs. to go.

>

> every time i go to the pharmacy for refills i ask the pharmacist why

do i need all these pills? and by the time i get home SOB i say to my

self, to fight, darn it, to fight to stay alive for as long as i can.

>

> there, i fell a lot better.

>

> your air friend

>

> ken overman

>

>

>

>

> ________________________________

> From: Margaret McConnell margaretmcconnell64@...

> To: Breathe-Support

> Sent: Wednesday, February 25, 2009 2:28:09 AM

> Subject: Re: Hello

>

>

> Oh Ken, let it out. I can feel how this hurts you. I am so sorry.

>

> Genie, I can imagine how much you want your parents to understand and

be there for you and how much it is hurting you.

>

> I am sending my prayers for both of you.

>

> Margaret

>

>

>

>

> ________________________________

> From: Overman kenover44 (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Sunday, February 22, 2009 11:12:54 PM

> Subject: Re: Hello

>

>

>

>

>

>

>

> ________________________________

> From: Overman kenover44 (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. . com

> Sent: Sunday, February 22, 2009 11:58:30 PM

> Subject: Re: Hello

>

>

> i have 4 sisters and 1 brother, one sister (the oldest) and her

husband knows of the serious of this disease (time out)!!!!!!!!

!!!!!!!! I'm crying

>

>

>

>

> ________________________________

> From: Regina Pennington

> To: Breathe-Support@ yahoogroups. com

> Sent: Sunday, February 22, 2009 5:06:53 PM

> Subject: Re: Hello

>

>

> No one in my family understands. They think it will cure itself in a

little while if I just take better care of myself. I try to tell them it

is incurable but they do not listen.

> Genie

>

>

>

>

> ________________________________

> From: Sher Bauman bofus (AT) wbcable (DOT) net>

> To: Breathe-Support@ yahoogroups. com

> Sent: Sunday, February 22, 2009 5:57:42 PM

> Subject: Re: Hello

>

>

> A year is a long time...you have some history together. You will know

what you need to do Genie. Just look inside yourself.

> Life is what happens when we're making other plans.

> It's good you are here. You will have support and help with/through

your disease process here.

> Do you have family that are supportive?

> Hopefully close to you?

> And what about friends?

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

> Nasturtiums

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

>

> Hello

>

> I just don't know what to do. My boyfriend does not seem to understand

> my pulmonary fibrosis. I stay real sick and he wants me to come and

> see him instead of him driving to see me. The other day, I met him and

> then could barely get back home because I was so sick. He says that I

> don't care or love him if I don't go and meet him. I was wondering has

> anyone went through this. I beginning to think he does not care. I

> just need to know if anyone else has been through this.

> Genie

>

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Bruce: I love your response - so clear and logical. As for myself, I just told close friends and family that I have a "bad" lung disease called pulmonary fibrosis, and that the outlook was not good. Most of them are computer-savvy and googled the disease to see what it was about. When asked how I'm feeling, I'm honest - and upbeat. Some who have been told do not understand the "seriosity" of the illness, but I figure that eventually - in their own time - they will. And I'm living my life, not worrying about my death, but keeping in mind that life is not forever.

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Friday, February 27, 2009 10:32:30 AMSubject: Re: Hello

KenI tell everyone the same way. Simply, Factually. I do make trips knowingand saying it might be my last chance. My life and my actions just makemore sense to me and to others knowing the facts. Now, I also fill themin on my mood and attitude. I do think that helps in my case.That is:I would prefer not to have this disease. It will progress until I'm lessmobile and then ultimately reach the stage of needing hospice. I willnot be in tremendous pain or anything as I see my final days at homespending time with those I love, even online and on the phone, and onlots of morphine. I'm not scared of death. I'm scared of pain andsuffering but one can live with this disease with minimal of that(compared to other diseases). I'm also thankful its a disease that justimpacts my body and not my brain. I'm going to live my life to thefullest though until that time comes. I made my plans

regarding death orincapacitation and now all I have to do is live. I have my van andpowerchair for when that becomes my only way to travel.From then on I am active and upbeat most of the time but open andhonest. When I go to the pulmonologist, I''m honest in explaining tothem what is said to family and friends and discussing any progression.I know its difficult for them but I think its easier ultimately that wecan be honest. I can discuss decisions logically since not avoiding thefull reality around them. Right now I'm dealing with a major decisionand that is to lease a house as roommates with my ex-wife, best friend,closest family. She realizes that its not a long term thing and she'llbe moving again sooner than she wishes. I even calculated based on myown personal situation a few odds and she has them. They are direct. Theodds of me dying within the next year are about 20% and the odds of

medying before we complete a two year lease are about 67%. The odds of medying within three years are over 90%. So, we're seeking a two yearlease with an option for a third and a termination clause upon death.Now I fully hope to beat those odds as I'm not a statistic. But, Icouldn't enter into a roommate situation without her fully understandingthem. She had to make a choice that she's comfortable with and I wouldhave felt I was lying not to lay all the facts out.I even joke about it. Guess I can joke about any topic, but I do with mydoctors as well. For instance, I'm with my nephrologist discussing mykidneys. If I didn't have IPF, they would be a concern as they arearound 50% function. However, the reality is they are going to long outlast my lungs so not going to worry about them (just no CT's withcontrast that could take them down). In talking to about the factshe could have to

move again fairly soon, I said she had to decide asshe was stuck with all the moving work when I die. I said it would beeasy for me as I wouldn't be doing anything.Now I'm only able to go to those extremes because she's comfortable withit and because I was open and honest from the day of the diagnosis.Also, I'm sure she went home that day and went straight to the internet.But I don't want to spend my remaining time dancing around the truth orthinking what have I said to Jane vs. Jack. Maybe the complete honestysounds a bit harsh but I do believe ultimately its better for all. Evenfor those who have the most trouble with it, because it gives them timeto go through all the stages. I don't personally feel it would be fairif I had three or five or however many years to prepare and they hadnone. I need them at the same point as me, not mourning, just loving andunderstanding.Meanwhile I am as

active as I can be. I respect the disease. I avoidgerms (no sick friends or family-another reason to be completely open).I smile and laugh and enjoy. Most of my time with family is just normaltime. But when the other subjects do need discussion, I discuss. Thenback to life.I'm not telling anyone how to handle it or how they should feel, justhow I do. I think one thing is that I'm not angry about it. I'd prefernot to have it but not too long before this disease I did go through ahorrible period of mental illness and it was far worse so I have aunique perspective. I also see my counselor regularly and that helps Iknow. I have a firm commitment she'll be with me until death. Even whenI can't get to her, she'll get to me. I have what's called "radicalacceptance" and know I can't do anything about it, nor about the past,nor can I prevent the future. But, I can make the most of today and I'mdoing

so.As to Disneyworld, I think its great. And, I would be billing it as mylast trip to Disneyworld or bucket list or wanting to before I died. Isthat a downer? I don't think so. It explains why you are so happy aboutit. Makes it even a more special experience but doesn't detract from thefun. Had we only lived our whole life making sure we did the things wewanted. I may make my own trip to Disneyworld. My bucket list is a bitmore realistic than yours and I update it regularly. Last year it was agreat trip to NC to see all my family I hadn't seen for years. This yearit includes a friend I haven't seen for 27 years.I don't dwell on the negatives but I'm not going to hide them and I'llbring them up when they are relevant to life.I'll tell you too from a personal basis. Until the last three years Iwas a very private person who never discussed personal things orfeelings. People didn't feel

they could really know me. I never talkedabout my childhood or much about the past. So its been a huge change forme. But just being open and honest with the facts and my feelings is somuch easier. It also makes all the relationships so much more real.>> how do you tell (if you tell) your sibblings that you are going to dieof this disease? my oldest sister and her husband know and have beenvery supportive in taking me to doctors, hospitals and even helping withmedical bills. the others? i'm not sure if they fully know how seriousthis is and that there is no cure. one sister (the youngest) i'm notsure if she fully knows or just won't accept it but every now and then iwant to take

them aside one by one and tell them.>> in any case, i'm going to disneyland on my birthday (free admisson)!!two sisters and one nephew is going along. sounds a little strange for agrown man wanting to go to disneyland, but what the heck, i love thatplace and it's been 12 yrs. since my last visit. and, i'll be useing awheel chair to get around plus my sisters tell me we all get to thefront of the line!!>> oh yes, there's a bucket list being drawn up and at the top is a roundof golf and dinner with clint eastwood at pebble beach! plus go to themoon, orbit the earth, hey, think high. if only there was some way toreach clint eastwood with my wish.>> i am very active in the moose and that seems to keep me going, have alot of friends in many other lodges, the district, state and was evenplanning (and still plan) on retireing at mooseheaven near jacksonvillefla., but need 3

more yrs. of membership to qualify. i know i'll makeit!!>> yes this is a terrible disease and it has taken me 3 1/2 yrs. to getthis far and i plan on at least another 10 or even more yrs. to go.>> every time i go to the pharmacy for refills i ask the pharmacist whydo i need all these pills? and by the time i get home SOB i say to myself, to fight, darn it, to fight to stay alive for as long as i can.>> there, i fell a lot better.>> your air friend>> ken overman>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Wednesday, February 25, 2009 2:28:09 AM> Subject: Re:

Hello>>> Oh Ken, let it out. I can feel how this hurts you. I am so sorry.>> Genie, I can imagine how much you want your parents to understand andbe there for you and how much it is hurting you.>> I am sending my prayers for both of you.>> Margaret>>>>> ____________ _________ _________ __> From: Overman kenover44 (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Sunday, February 22, 2009 11:12:54 PM> Subject: Re: Hello>>>>>>>> ____________ _________ _________ __> From: Overman kenover44 (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. . com> Sent: Sunday, February 22, 2009 11:58:30 PM> Subject: Re: Hello>>> i have 4 sisters and 1 brother, one sister (the

oldest) and herhusband knows of the serious of this disease (time out)!!!!!!!!!!!!!!!! I'm crying>>>>> ____________ _________ _________ __> From: Regina Pennington <rpennington71@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Sunday, February 22, 2009 5:06:53 PM> Subject: Re: Hello>>> No one in my family understands. They think it will cure itself in alittle while if I just take better care of myself. I try to tell them itis incurable but they do not listen.> Genie>>>>> ____________ _________ _________ __> From: Sher Bauman bofus (AT) wbcable (DOT) net>> To: Breathe-Support@ yahoogroups. com> Sent: Sunday, February 22, 2009 5:57:42 PM> Subject: Re: Hello>>> A year is a long time...you have some history together. You will

knowwhat you need to do Genie. Just look inside yourself.> Life is what happens when we're making other plans.> It's good you are here. You will have support and help with/throughyour disease process here.> Do you have family that are supportive?> Hopefully close to you?> And what about friends?> MamaSher; 70, IPF 3-06, OR.> Nasturtiums> Don't fret about tomorrow, God is already there!>> Hello>> I just don't know what to do. My boyfriend does not seem to understand> my pulmonary fibrosis. I stay real sick and he wants me to come and> see him instead of him driving to see me. The other day, I met him and> then could barely get back home because I was so sick. He says that I> don't care or love him if I don't go and meet him. I was wondering has> anyone went through this. I beginning to think he does not care. I> just need to know if anyone else has been through this.> Genie>

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Ken...telling our family is a hard task. We know how much this news is going to hurt.

I opt for talking/telling each one...not only does it give them time to prepare themselves but they can be helpful if and when you really need them.

Each family member in my family reacted differently but I'm glad I don't have to pretend in front of any of them.

Even my younger gr/daughter knows. She is 11 and is so thoughtful and sweet...well she always was and we're very close but kids learn about the bad things too....

I have one daughter who still doesn't talk about it unless part of a conversation and then changes the subject.

Oh Ken, it sounds wonderful, going to DL!

Have a whoopin' good time.

Thanks for trusting us to vent with us.

Yeah, keep on keepin' on...

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

Hello

I just don't know what to do.. My boyfriend does not seem to understandmy pulmonary fibrosis. I stay real sick and he wants me to come andsee him instead of him driving to see me. The other day, I met him andthen could barely get back home because I was so sick. He says that Idon't care or love him if I don't go and meet him. I was wondering hasanyone went through this. I beginning to think he does not care. Ijust need to know if anyone else has been through this.Genie

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Barbara

Also, I think of how I'd feel to be on the other side. I would want to

share and support. If I ask how someone is feeling, I really am

interested in knowing. Of course, I'm the most guilty of always saying

" fine. "

We also talk here about wanting more awareness of our disease. Then we

hesitate to fully share with family and friends. Isn't that the place we

can individually best create that awareness? Are we embarrassed about

the disease? I don't go out crusading but if someone does ask me, I

explain about the disease and sometimes even give them a handout. The

people in the office at my apartment complex know. The manager of the

nearest convenience store knows. I can't get us halftime of the super

bowl to broadcast it, but I can share with those who ask.

> >

> > how do you tell (if you tell) your sibblings that you are going to

die

> of this disease? my oldest sister and her husband know and have been

> very supportive in taking me to doctors, hospitals and even helping

with

> medical bills. the others? i'm not sure if they fully know how serious

> this is and that there is no cure. one sister (the youngest) i'm not

> sure if she fully knows or just won't accept it but every now and then

i

> want to take them aside one by one and tell them.

> >

> > in any case, i'm going to disneyland on my birthday (free

admisson)!!

> two sisters and one nephew is going along. sounds a little strange for

a

> grown man wanting to go to disneyland, but what the heck, i love that

> place and it's been 12 yrs. since my last visit. and, i'll be useing a

> wheel chair to get around plus my sisters tell me we all get to the

> front of the line!!

> >

> > oh yes, there's a bucket list being drawn up and at the top is a

round

> of golf and dinner with clint eastwood at pebble beach! plus go to the

> moon, orbit the earth, hey, think high. if only there was some way to

> reach clint eastwood with my wish.

> >

> > i am very active in the moose and that seems to keep me going, have

a

> lot of friends in many other lodges, the district, state and was even

> planning (and still plan) on retireing at mooseheaven near

jacksonville

> fla., but need 3 more yrs. of membership to qualify. i know i'll make

> it!!

> >

> > yes this is a terrible disease and it has taken me 3 1/2 yrs. to get

> this far and i plan on at least another 10 or even more yrs. to go.

> >

> > every time i go to the pharmacy for refills i ask the pharmacist why

> do i need all these pills? and by the time i get home SOB i say to my

> self, to fight, darn it, to fight to stay alive for as long as i can.

> >

> > there, i fell a lot better.

> >

> > your air friend

> >

> > ken overman

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Margaret McConnell margaretmcconnell64 @...

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Wednesday, February 25, 2009 2:28:09 AM

> > Subject: Re: Hello

> >

> >

> > Oh Ken, let it out. I can feel how this hurts you. I am so sorry.

> >

> > Genie, I can imagine how much you want your parents to understand

and

> be there for you and how much it is hurting you.

> >

> > I am sending my prayers for both of you.

> >

> > Margaret

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Overman kenover44 (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sunday, February 22, 2009 11:12:54 PM

> > Subject: Re: Hello

> >

> >

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Overman kenover44 (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. . com

> > Sent: Sunday, February 22, 2009 11:58:30 PM

> > Subject: Re: Hello

> >

> >

> > i have 4 sisters and 1 brother, one sister (the oldest) and her

> husband knows of the serious of this disease (time out)!!!!!!!!

> !!!!!!!! I'm crying

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Regina Pennington

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sunday, February 22, 2009 5:06:53 PM

> > Subject: Re: Hello

> >

> >

> > No one in my family understands. They think it will cure itself in a

> little while if I just take better care of myself. I try to tell them

it

> is incurable but they do not listen.

> > Genie

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Sher Bauman bofus (AT) wbcable (DOT) net>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sunday, February 22, 2009 5:57:42 PM

> > Subject: Re: Hello

> >

> >

> > A year is a long time...you have some history together. You will

know

> what you need to do Genie. Just look inside yourself.

> > Life is what happens when we're making other plans.

> > It's good you are here. You will have support and help with/through

> your disease process here.

> > Do you have family that are supportive?

> > Hopefully close to you?

> > And what about friends?

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

> > Nasturtiums

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

> >

> > Hello

> >

> > I just don't know what to do. My boyfriend does not seem to

understand

> > my pulmonary fibrosis. I stay real sick and he wants me to come and

> > see him instead of him driving to see me. The other day, I met him

and

> > then could barely get back home because I was so sick. He says that

I

> > don't care or love him if I don't go and meet him. I was wondering

has

> > anyone went through this. I beginning to think he does not care. I

> > just need to know if anyone else has been through this.

> > Genie

> >

>

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Yep, he's my lil brudder. ;o}

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

Hello> >> > I just don't know what to do. My boyfriend does not seem tounderstand> > my pulmonary fibrosis. I stay real sick and he wants me to come and> > see him instead of him driving to see me. The other day, I met himand> > then could barely get back home because I was so sick. He says thatI> > don't care or love him if I don't go and meet him. I was wonderinghas> > anyone went through this. I beginning to think he does not care. I> > just need to know if anyone else has been through this.> > Genie> >>

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Yep, he's my lil brudder. ;o}

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

Hello> >> > I just don't know what to do. My boyfriend does not seem tounderstand> > my pulmonary fibrosis. I stay real sick and he wants me to come and> > see him instead of him driving to see me. The other day, I met himand> > then could barely get back home because I was so sick. He says thatI> > don't care or love him if I don't go and meet him. I was wonderinghas> > anyone went through this. I beginning to think he does not care. I> > just need to know if anyone else has been through this.> > Genie> >>

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Ken, by all means get to Disney World. I've been several times and enjoyed it immensely. As for telling friends and relatives, they will only understand as much as they can incorporate. Say fatal disease and most people won't hear that; they only hear the disease part. I no longer worry about it. I just stick with I have a lung problem. Nobody believes I'm sick because I have no limitations and look healthy. Actualy, I rarely think I'm sick, which is why my lungs and I get along so well. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Friday, February 27, 2009 5:07:04 AMSubject: Re: Hello

how do you tell (if you tell) your sibblings that you are going to die of this disease? my oldest sister and her husband know and have been very supportive in taking me to doctors, hospitals and even helping with medical bills. the others? i'm not sure if they fully know how serious this is and that there is no cure. one sister (the youngest) i'm not sure if she fully knows or just won't accept it but every now and then i want to take them aside one by one and tell them.

in any case, i'm going to disneyland on my birthday (free admisson)!! two sisters and one nephew is going along. sounds a little strange for a grown man wanting to go to disneyland, but what the heck, i love that place and it's been 12 yrs. since my last visit. and, i'll be useing a wheel chair to get around plus my sisters tell me we all get to the front of the line!!

oh yes, there's a bucket list being drawn up and at the top is a round of golf and dinner with clint eastwood at pebble beach! plus go to the moon, orbit the earth, hey, think high. if only there was some way to reach clint eastwood with my wish.

i am very active in the moose and that seems to keep me going, have a lot of friends in many other lodges, the district, state and was even planning (and still plan) on retireing at mooseheaven near jacksonville fla., but need 3 more yrs. of membership to qualify. i know i'll make it!!

yes this is a terrible disease and it has taken me 3 1/2 yrs. to get this far and i plan on at least another 10 or even more yrs. to go.

every time i go to the pharmacy for refills i ask the pharmacist why do i need all these pills? and by the time i get home SOB i say to my self, to fight, darn it, to fight to stay alive for as long as i can.

there, i fell a lot better.

your air friend

ken overman

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, February 25, 2009 2:28:09 AMSubject: Re: Hello

Oh Ken, let it out. I can feel how this hurts you. I am so sorry.

Genie, I can imagine how much you want your parents to understand and be there for you and how much it is hurting you.

I am sending my prayers for both of you.

Margaret

From: Overman <kenover44 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 22, 2009 11:12:54 PMSubject: Re: Hello

From: Overman <kenover44 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. . comSent: Sunday, February 22, 2009 11:58:30 PMSubject: Re: Hello

i have 4 sisters and 1 brother, one sister (the oldest) and her husband knows of the serious of this disease (time out)!!!!!!!! !!!!!!!! I'm crying

From: Regina Pennington <rpennington71@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 22, 2009 5:06:53 PMSubject: Re: Hello

No one in my family understands. They think it will cure itself in a little while if I just take better care of myself. I try to tell them it is incurable but they do not listen.Genie

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 22, 2009 5:57:42 PMSubject: Re: Hello

A year is a long time...you have some history together. You will know what you need to do Genie. Just look inside yourself.

Life is what happens when we're making other plans.

It's good you are here. You will have support and help with/through your disease process here.

Do you have family that are supportive?

Hopefully close to you?

And what about friends?

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

Hello

I just don't know what to do.. My boyfriend does not seem to understandmy pulmonary fibrosis. I stay real sick and he wants me to come andsee him instead of him driving to see me. The other day, I met him andthen could barely get back home because I was so sick. He says that Idon't care or love him if I don't go and meet him. I was wondering hasanyone went through this. I beginning to think he does not care. Ijust need to know if anyone else has been through this.Genie

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