Re: Workshops in your area plus -- I am New

January 17, 2010

Hello, I am new. I have been reading your notes for a little over a month and I am learning a lot.

Introducing myself: I just turned 80. I was diagnosed with PF in June of 05, verified by biopsy the following August by my Pulmonologist in Kalamazoo, MI: diagnosed NSIP March of 06 after tests at the University of Michigan Teaching Hospital in Ann Arbor, MI.

You have referred to this as a "life changing" disease and it is!! We made the decision in 08 to leave our loved community in Kalamazoo, MI and move to Champagn-Urbana, IL where our daughter lives and near our son who lives in Crawfordsville, IN. We have spent a year getting used to the medical system here

and doctors.

I have a pulmonologist here but I continue my relationship with Ann Arbor and will return to the specialists there in the spring for tests. I also have regular testing here.

I am down to 5 mg of pred, take 100 mg of Imuran, take ranididan for acid reflux (for comfort and because I understand that esophugus problems can be "real problems." I also take 3 NAC --3 a day if I can get them down -- supposed to be on an empty stomach with fruitjuice, according to what I have read, and i do not have trouble --- I just forget because I take everything else with a meal: above plus vitamins, calcium, aspirin, lopressor, bactrim (every other day to guard aginst infection.)

I, like all of you, try to avoid crowds, etc. I am maintaining quite well, but I lack energy much of the time and seem to have a bad -- spike in blood sugar, should I eat things that are sweet, so i have to be careful to "eat well." If I am not careful, I get weak, and very fatigued, blurry eyes, muffled ears. This has been puzzling to my docors. Also, I have had a bad reaction to Prylosec -- these are all personal idiosyncracies, I guess. We all respond differently. If any of you can shed light...

The reason I am writing now is that I took the course Chronic Disease Management in Kalamazoo and it is an excellent course and the manual -- or book by the Stanford people is very good. There were seven of us in the class, each with something different. The thing we all had in common was the Chronic Disease part. When this course is put on, the cost is about $5, sometimes free -- the book is about $18.00. At least, this is my experience.

I, too, get discouraged because as you say, "people don't "get it." --That is most people don't. Some people do and, like some of you, I have had wonderful family support; but i, too have felt there is "no one" to talk to-- no support group -- because, as you say any support program deals with COPD or emphasema so I am very happy to get in on these discussions and that this "chat" experience is available.

I am understanding from you the importance of keeping the lungs going in exercise -- and have to keep nudging myself to walk, do weights, etc. to keep my self maintaing, as many others do.

I do not know what SATS are and I have not paid real attention to the reports as you all have. I will have to start... You all have so much knowledge.

Alice --NSIP '06

It is helpful to hear of your experiences. I find it hard to keep such a balanced life style and find that if/when I overdo, I pay for it.

Subject: Workshops in your areaTo: "Breath Support" <Breathe-Support >Date: Saturday, January 16, 2010, 10:39 PM

There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

January 18, 2010

I just found out that my oximeter won't be delivered until Thurs. I am so afraid to do much without it. I did have hubby take big concentrator upstairs yesterday so that I could do some special cleaning jobs. It did work well. I went to the gym this morning and don't use air there. I did use my pro-air and I only walk very slowly on the treadmill and recumbent bike is pedaled slowly. I guess I am still in denial about all of this. I have some tanks that I can hang in a bag on my shoulder but haven't used them yet at all, nor have I used any air while out and about which is only twice a week. I walk slowly and haven't really been breathless.Also, how did you tell your children about your dx? About a week after I was dx, I told my daughter (age 52) who didn't understand what it is and I didn't go into detail. I simply told her that I need oxygen when walking. She worked for a lady years ago who had emphysema and told me on New Years day that the lady would never wear her oxygen when going out and she was gone within 2 years. My problem is also my 48 year old son. I haven't told him anything. I am concerned about how they both would take the truth. I would really rather not go into detail with them. Has anyone been in this situation? Also, my hubby is not quite convinced my stats go as low as they do. It was his initial idea to get the oximeter. Such is my dilemma.----- "Alice Foote" wrote:

>

> > > Hello, I am new. I have been reading your notes for a little over a month and I am learning a lot.

Introducing myself: I just turned 80. I was diagnosed with PF in June of 05, verified by biopsy the following August by my Pulmonologist in Kalamazoo, MI: diagnosed NSIP March of 06 after tests at the University of Michigan Teaching Hospital in Ann Arbor, MI.

You have referred to this as a "life changing" disease and it is!! We made the decision in 08 to leave our loved community in Kalamazoo, MI and move to Champagn-Urbana, IL where our daughter lives and near our son who lives in Crawfordsville, IN. We have spent a year getting used to the medical system here

and doctors.

I have a pulmonologist here but I continue my relationship with Ann Arbor and will return to the specialists there in the spring for tests. I also have regular testing here.

I am down to 5 mg of pred, take 100 mg of Imuran, take ranididan for acid reflux (for comfort and because I understand that esophugus problems can be "real problems." I also take 3 NAC --3 a day if I can get them down -- supposed to be on an empty stomach with fruitjuice, according to what I have read, and i do not have trouble --- I just forget because I take everything else with a meal: above plus vitamins, calcium, aspirin, lopressor, bactrim (every other day to guard aginst infection.)

I, like all of you, try to avoid crowds, etc. I am maintaining quite well, but I lack energy much of the time and seem to have a bad -- spike in blood sugar, should I eat things that are sweet, so i have to be careful to "eat well." If I am not careful, I get weak, and very fatigued, blurry eyes, muffled ears. This has been puzzling to my docors. Also, I have had a bad reaction to Prylosec -- these are all personal idiosyncracies, I guess. We all respond differently. If any of you can shed light...

The reason I am writing now is that I took the course Chronic Disease Management in Kalamazoo and it is an excellent course and the manual -- or book by the Stanford people is very good. There were seven of us in the class, each with something different. The thing we all had in common was the Chronic Disease part. When this course is put on, the cost is about $5, sometimes free -- the book is about $18.00. At least, this is my experience.

I, too, get discouraged because as you say, "people don't "get it." --That is most people don't. Some people do and, like some of you, I have had wonderful family support; but i, too have felt there is "no one" to talk to-- no support group -- because, as you say any support program deals with COPD or emphasema so I am very happy to get in on these discussions and that this "chat" experience is available.

I am understanding from you the importance of keeping the lungs going in exercise -- and have to keep nudging myself to walk, do weights, etc. to keep my self maintaing, as many others do.

I do not know what SATS are and I have not paid real attention to the reports as you all have. I will have to start... You all have so much knowledge.

Alice --NSIP '06

It is helpful to hear of your experiences. I find it hard to keep such a balanced life style and find that if/when I overdo, I pay for it.

> > >

> > Subject: Workshops in your area> To: "Breath Support" <Breathe-Support >> Date: Saturday, January 16, 2010, 10:39 PM> > > >

>

There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!>

>

January 18, 2010

Oh Arianne, you really need to set down with your family and tell them, just make sure you have information to give them, the ones I used were on the Mayo Clinic website gave really good explanation and you could really understand them. You need to be mentally prepared, because it will be hard day. You have to also remind them and everyone just because you look good doesn't mean that you are healthy. I get that all the time you aren't sick because you look so good, sure wished I could show them my lungs. We are all here to support you when the time comes. Good luckLove ya and Praying for you Gascoigne SD, 50 yrs old, Renaud's 2008, IPF

7/2009To: Breathe-Support Sent: Mon, January 18, 2010 4:03:22 PMSubject: Re: Workshops in your area plus -- I am New

I just found out that my oximeter won't be delivered until Thurs. I am so afraid to do much without it. I did have hubby take big concentrator upstairs yesterday so that I could do some special cleaning jobs. It did work well. I went to the gym this morning and don't use air there. I did use my pro-air and I only walk very slowly on the treadmill and recumbent bike is pedaled slowly. I guess I am still in denial about all of this. I have some tanks that I can hang in a bag on my shoulder but haven't used them yet at all, nor have I used any air while out and about which is only twice a week. I walk slowly and haven't really been breathless.Also, how did you tell your children about your dx? About a week after I was dx, I told my daughter (age 52) who didn't understand what it is and I didn't go into detail. I simply told her that I need oxygen when walking. She

worked for a lady years ago who had emphysema and told me on New Years day that the lady would never wear her oxygen when going out and she was gone within 2 years. My problem is also my 48 year old son. I haven't told him anything. I am concerned about how they both would take the truth. I would really rather not go into detail with them. Has anyone been in this situation? Also, my hubby is not quite convinced my stats go as low as they do. It was his initial idea to get the oximeter. Such is my dilemma.----- "Alice Foote" <alydiafoote@ yahoo.com> wrote:

>

> > > Hello, I am new. I have been reading your notes for a little over a month and I am learning a lot.

Introducing myself: I just turned 80. I was diagnosed with PF in June of 05, verified by biopsy the following August by my Pulmonologist in Kalamazoo, MI: diagnosed NSIP March of 06 after tests at the University of Michigan Teaching Hospital in Ann Arbor, MI.

You have referred to this as a "life changing" disease and it is!! We made the decision in 08 to leave our loved community in Kalamazoo, MI and move to Champagn-Urbana, IL where our daughter lives and near our son who lives in Crawfordsville, IN. We have spent a year getting used to the medical system here

and doctors.

I have a pulmonologist here but I continue my relationship with Ann Arbor and will return to the specialists there in the spring for tests. I also have regular testing here.

I am down to 5 mg of pred, take 100 mg of Imuran, take ranididan for acid reflux (for comfort and because I understand that esophugus problems can be "real problems." I also take 3 NAC --3 a day if I can get them down -- supposed to be on an empty stomach with fruitjuice, according to what I have read, and i do not have trouble --- I just forget because I take everything else with a meal: above plus vitamins, calcium, aspirin, lopressor, bactrim (every other day to guard aginst infection.)

I, like all of you, try to avoid crowds, etc. I am maintaining quite well, but I lack energy much of the time and seem to have a bad -- spike in blood sugar, should I eat things that are sweet, so i have to be careful to "eat well." If I am not careful, I get weak, and very fatigued, blurry eyes, muffled ears. This has been puzzling to my docors. Also, I have had a bad reaction to Prylosec -- these are all personal idiosyncracies, I guess. We all respond differently. If any of you can shed light...

The reason I am writing now is that I took the course Chronic Disease Management in Kalamazoo and it is an excellent course and the manual -- or book by the Stanford people is very good. There were seven of us in the class, each with something different. The thing we all had in common was the Chronic Disease part. When this course is put on, the cost is about $5, sometimes free -- the book is about $18.00. At least, this is my experience.

I, too, get discouraged because as you say, "people don't "get it." --That is most people don't. Some people do and, like some of you, I have had wonderful family support; but i, too have felt there is "no one" to talk to-- no support group -- because, as you say any support program deals with COPD or emphasema so I am very happy to get in on these discussions and that this "chat" experience is available.

I am understanding from you the importance of keeping the lungs going in exercise -- and have to keep nudging myself to walk, do weights, etc. to keep my self maintaing, as many others do.

I do not know what SATS are and I have not paid real attention to the reports as you all have. I will have to start... You all have so much knowledge.

Alice --NSIP '06

It is helpful to hear of your experiences. I find it hard to keep such a balanced life style and find that if/when I overdo, I pay for it.

> > >

> From: worth <hope2thend (AT) yahoo (DOT) com>> Subject: Workshops in your area> To: "Breath Support" <Breathe-Support@ yahoogroups. com>> Date: Saturday, January 16, 2010, 10:39 PM> > > >

>

There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!>

>

January 18, 2010

Arianne, I had similar concerns...I

was 61 when diagnosed and my kids were 26, 32, and 35

.. We told them and they then all went to their homes and went on the

internetÂ and read all the gruesome stuff!Â It was a very emotional

week-end.Â In spite of the 4+ years...my 2 boys are still in denial and

my daughter is the only one who truly"gets it"

Many of my family members still are in denial too.

Just remember that you are here toÂ learn to

live with PF...you are not going anywhereÂ any time soon !

Your daughters friend did not have PF and the diseases are notÂ even

close...they mess up lungs but

differently!.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

â€œmildâ€ PH/10/07

No,

NSIP was not self-inflictedâ€¦I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and SaraÂ

Â Â Â Â

â€œIâ€™m

gonna be iron like a lion in Zionâ€Â Bob Marley

Vinca

Minor-periwinkle is my flower

Â

Arianne wrote:

Â

I

just found out that my oximeter won't be delivered until Thurs. I am so

afraid to do much without it. I did have hubby take big concentrator

upstairs yesterday so that I could do some special cleaning jobs. It

did work well. I went to the gym this morning and don't use air there.

I did use my pro-air and I only walk very slowly on the treadmill and

recumbent bike is pedaled slowly. I guess I am still in denial about

all of this. I have some tanks that I can hang in a bag on my shoulder

but haven't used them yet at all, nor have I used any air while out and

about which is only twice a week. I walk slowly and haven't really been

breathless.

Also, how did you tell your children about your dx? About a week

after I was dx, I told my daughter (age 52) who didn't understand what

it is and I didn't go into detail. I simply told her that I need oxygen

when walking. She worked for a lady years ago who had emphysema and

told me on New Years day that the lady would never wear her oxygen when

going out and she was gone within 2 years. My problem is also my 48

year old son. I haven't told him anything. I am concerned about how

they both would take the truth. I would really rather not go into

detail with them. Has anyone been in this situation? Also, my hubby is

not quite convinced my stats go as low as they do. It was his initial

idea to get the oximeter. Such is my dilemma.

----- "Alice Foote" <alydiafoote (AT) yahoo (DOT) com> wrote:

> Â

>

Hello, I am new. I have been reading your notes

for a little over a month and I am learning a lot.

Â

Introducing myself: I just turned 80. I was

diagnosed with PF in June of 05, verified by biopsy the following

August by my Pulmonologist in Kalamazoo, MI:Â diagnosed NSIP March of 06

after tests at the University of Michigan Teaching Hospital in Ann

Arbor, MI.

Â

You have referred to this as a "life changing"

disease and it is!! We made the decision in 08 to leave our loved

community in Kalamazoo, MI and move to Champagn-Urbana, IL where our

daughter lives and near our son who lives in Crawfordsville, IN. We

have spent a year getting used to the medical system here

and doctors.

Â

I have a pulmonologist here but I continue my

relationship with Ann Arbor and will return to the specialists there in

the spring for tests. I also have regular testing here.

Â

I am down to 5 mg of pred, take 100 mg of Imuran,

take ranididan for acid reflux (for comfort and because I understand

that esophugus problems can be "real problems." I also take 3 NAC --3 a

day if I can get them down -- supposed to be on an empty stomach with

fruitjuice, according to what I have read, and i do not have trouble

--- I just forget because I take everything else with a meal: above

plus vitamins, calcium,Â aspirin, lopressor, bactrim (every other day to

guard aginstÂ infection.)

Â

I, like all of you, tryÂ to avoid crowds, etc. I am

maintaining quite well, but I lack energy much of the time and seem to

have a bad -- spike in blood sugar, should I eat things that are sweet,

so i have to be careful to "eat well." If I am not careful, I get weak,

and very fatigued, blurry eyes, muffled ears. This has been puzzling to

my docors. Also, I have had a bad reaction to Prylosec -- these are all

personal idiosyncracies, I guess. We all respond differently. If any of

you can shed light...

Â

The reason I am writing now is that I took the

course Chronic Disease ManagementÂ in Kalamazoo and it is an

excellent course and the manual -- or book by the Stanford people is

very good. There were seven of us in the class, each with something

different. The thing we all had in common was the Chronic Disease part.

When this course is put on, the cost is about $5, sometimes free -- the

book is about $18.00. At least, this is my experience.

Â

I, too, get discouraged because as you say,

"people don't "get it." --That is most people don't. Some people do

and, like some of you, I have had wonderful familyÂ support; but i, too

have felt there is "no one" to talk to-- no support group -- because,

as you say any support program deals with COPD or emphasema so I am

very happy to get in on these discussions and that this "chat"

experience is available.

Â

I am understanding from you the importance of

keeping the lungs going in exercise -- and have to keep nudging myself

to walk, do weights, etc. to keep my self maintaing,Â as many others do.

Â

I do not know what SATS are and I have not paid

real attention to the reports as you all have. I will have to start...

You all have so much knowledge.

Â

Alice --NSIPÂ '06

Â

It is helpful to hear of your experiences. I find

it hard to keep such a balanced life style and find that if/when I

overdo, I pay for it.

>

> From: worth <hope2thend (AT) yahoo (DOT) com>

> Subject: Workshops in your area

> To: "Breath Support" <Breathe-Support >

> Date: Saturday, January 16, 2010, 10:39 PM

>

> Â

>

There

might be an organization in your area offering the Chronic Disease Self-Management Program workshop.

That would be even better to attend an actual workshop instead of the

on-line program.

The Chronic Disease Self-Management

Program is offered by organizations throughout the United States and

Internationally. To find a CDSMP program in your area click on your

state or country for more details, or scroll down to find your state or

country. A list of organizations that are licensed as of this date to

give the workshop follows. http://patienteduca

tion.stanford. edu/organ/ cdsites.html

Â

C_53_Familial IPF_5/09, Washington

HOPEÂ doesn't disappoint!

>

January 18, 2010

Alice,

Just wanted to pop in and say welcome! It certainly sounds as though you've got things well in hand. I admire your organization and practical outlook. It certainly makes things easier.

Thanks for the heads up about the Chronic Disease Self Management program. It sounds very interesting and useful.

Once again welcome, I hope you find what you need here with us!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, January 17, 2010 9:29:56 PMSubject: Re: Workshops in your area plus -- I am New

Hello, I am new. I have been reading your notes for a little over a month and I am learning a lot.

Introducing myself: I just turned 80. I was diagnosed with PF in June of 05, verified by biopsy the following August by my Pulmonologist in Kalamazoo, MI: diagnosed NSIP March of 06 after tests at the University of Michigan Teaching Hospital in Ann Arbor, MI.

You have referred to this as a "life changing" disease and it is!! We made the decision in 08 to leave our loved community in Kalamazoo, MI and move to Champagn-Urbana, IL where our daughter lives and near our son who lives in Crawfordsville, IN. We have spent a year getting used to the medical system here

and doctors.

I have a pulmonologist here but I continue my relationship with Ann Arbor and will return to the specialists there in the spring for tests. I also have regular testing here.

I am down to 5 mg of pred, take 100 mg of Imuran, take ranididan for acid reflux (for comfort and because I understand that esophugus problems can be "real problems." I also take 3 NAC --3 a day if I can get them down -- supposed to be on an empty stomach with fruitjuice, according to what I have read, and i do not have trouble --- I just forget because I take everything else with a meal: above plus vitamins, calcium, aspirin, lopressor, bactrim (every other day to guard aginst infection.)

I, like all of you, try to avoid crowds, etc. I am maintaining quite well, but I lack energy much of the time and seem to have a bad -- spike in blood sugar, should I eat things that are sweet, so i have to be careful to "eat well." If I am not careful, I get weak, and very fatigued, blurry eyes, muffled ears. This has been puzzling to my docors. Also, I have had a bad reaction to Prylosec -- these are all personal idiosyncracies, I guess. We all respond differently. If any of you can shed light...

The reason I am writing now is that I took the course Chronic Disease Management in Kalamazoo and it is an excellent course and the manual -- or book by the Stanford people is very good. There were seven of us in the class, each with something different. The thing we all had in common was the Chronic Disease part. When this course is put on, the cost is about $5, sometimes free -- the book is about $18.00. At least, this is my experience.

I, too, get discouraged because as you say, "people don't "get it." --That is most people don't. Some people do and, like some of you, I have had wonderful family support; but i, too have felt there is "no one" to talk to-- no support group -- because, as you say any support program deals with COPD or emphasema so I am very happy to get in on these discussions and that this "chat" experience is available.

I am understanding from you the importance of keeping the lungs going in exercise -- and have to keep nudging myself to walk, do weights, etc. to keep my self maintaing, as many others do.

I do not know what SATS are and I have not paid real attention to the reports as you all have. I will have to start... You all have so much knowledge.

Alice --NSIP '06

It is helpful to hear of your experiences. I find it hard to keep such a balanced life style and find that if/when I overdo, I pay for it.

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Workshops in your areaTo: "Breath Support" <Breathe-Support@ yahoogroups. com>Date: Saturday, January 16, 2010, 10:39 PM

There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

January 18, 2010

my kids also went on the internet to learn about pulmonary fibrosis when i told them the diagnosis

so i didn't have much explaining to do

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Workshops in your area plus -- I am NewTo: Breathe-Support Date: Monday, January 18, 2010, 7:38 PM

Arianne, I had similar concerns...I was 61 when diagnosed and my kids were 26, 32, and 35. We told them and they then all went to their homes and went on the internet and read all the gruesome stuff! It was a very emotionalweek-end. In spite of the 4+ years...my 2 boys are still in denial and my daughter is the only one who truly"gets it"Many of my family members still are in denial too.Just remember that you are here to learn to live with PF...you are not going anywhere any time soon !Your daughters friend did not have PF and the diseases are not even close...they mess up lungs butdifferently! .

Z 65, fibriotic NSIP/05/PA

And â€œmildâ€ PH/10/07

No, NSIP was not self-inflictedâ€¦I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

â€œIâ€™m gonna be iron like a lion in Zionâ€ Bob Marley

Vinca Minor-periwinkle is my flower

Arianne wrote:

I just found out that my oximeter won't be delivered until Thurs. I am so afraid to do much without it. I did have hubby take big concentrator upstairs yesterday so that I could do some special cleaning jobs. It did work well. I went to the gym this morning and don't use air there. I did use my pro-air and I only walk very slowly on the treadmill and recumbent bike is pedaled slowly. I guess I am still in denial about all of this. I have some tanks that I can hang in a bag on my shoulder but haven't used them yet at all, nor have I used any air while out and about which is only twice a week. I walk slowly and haven't really been breathless. Also, how did you tell your children about your dx? About a week after I was dx, I told my daughter (age 52) who didn't understand what it is and I didn't go into detail. I simply told her that I need oxygen when walking. She worked for a lady years ago who had emphysema and told me on New Years day that the lady would never wear her oxygen when going out and she was gone within 2 years. My problem is also my 48 year old son. I haven't told him anything. I am concerned about how they both would take the truth. I would really rather not go into detail with them. Has anyone been in this situation? Also, my hubby is not quite convinced my stats go as low as they do. It was his initial idea to get the oximeter. Such is my dilemma.

----- "Alice Foote" <alydiafoote@ yahoo.com> wrote: > > > >

Hello, I am new. I have been reading your notes for a little over a month and I am learning a lot.

Introducing myself: I just turned 80. I was diagnosed with PF in June of 05, verified by biopsy the following August by my Pulmonologist in Kalamazoo, MI: diagnosed NSIP March of 06 after tests at the University of Michigan Teaching Hospital in Ann Arbor, MI.

You have referred to this as a "life changing" disease and it is!! We made the decision in 08 to leave our loved community in Kalamazoo, MI and move to Champagn-Urbana, IL where our daughter lives and near our son who lives in Crawfordsville, IN. We have spent a year getting used to the medical system here

and doctors.

I have a pulmonologist here but I continue my relationship with Ann Arbor and will return to the specialists there in the spring for tests. I also have regular testing here.

I am down to 5 mg of pred, take 100 mg of Imuran, take ranididan for acid reflux (for comfort and because I understand that esophugus problems can be "real problems." I also take 3 NAC --3 a day if I can get them down -- supposed to be on an empty stomach with fruitjuice, according to what I have read, and i do not have trouble --- I just forget because I take everything else with a meal: above plus vitamins, calcium, aspirin, lopressor, bactrim (every other day to guard aginst infection.)

I, like all of you, try to avoid crowds, etc. I am maintaining quite well, but I lack energy much of the time and seem to have a bad -- spike in blood sugar, should I eat things that are sweet, so i have to be careful to "eat well." If I am not careful, I get weak, and very fatigued, blurry eyes, muffled ears. This has been puzzling to my docors. Also, I have had a bad reaction to Prylosec -- these are all personal idiosyncracies, I guess. We all respond differently. If any of you can shed light...

The reason I am writing now is that I took the course Chronic Disease Management in Kalamazoo and it is an excellent course and the manual -- or book by the Stanford people is very good. There were seven of us in the class, each with something different. The thing we all had in common was the Chronic Disease part. When this course is put on, the cost is about $5, sometimes free -- the book is about $18.00. At least, this is my experience.

I, too, get discouraged because as you say, "people don't "get it." --That is most people don't. Some people do and, like some of you, I have had wonderful family support; but i, too have felt there is "no one" to talk to-- no support group -- because, as you say any support program deals with COPD or emphasema so I am very happy to get in on these discussions and that this "chat" experience is available.

I am understanding from you the importance of keeping the lungs going in exercise -- and have to keep nudging myself to walk, do weights, etc. to keep my self maintaing, as many others do.

I do not know what SATS are and I have not paid real attention to the reports as you all have. I will have to start... You all have so much knowledge.

Alice --NSIP '06

It is helpful to hear of your experiences. I find it hard to keep such a balanced life style and find that if/when I overdo, I pay for it.

> > >

> From: worth <hope2thend (AT) yahoo (DOT) com>> Subject: Workshops in your area> To: "Breath Support" <Breathe-Support@ yahoogroups. com>> Date: Saturday, January 16, 2010, 10:39 PM> > > >

> There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!> >

> >

January 19, 2010

there is no easy way to tell anybody

i just come right out and tell them

then they do their own research on the internet

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Workshops in your area plus -- I am NewTo: Breathe-Support Date: Monday, January 18, 2010, 5:03 PM

I just found out that my oximeter won't be delivered until Thurs. I am so afraid to do much without it. I did have hubby take big concentrator upstairs yesterday so that I could do some special cleaning jobs. It did work well. I went to the gym this morning and don't use air there. I did use my pro-air and I only walk very slowly on the treadmill and recumbent bike is pedaled slowly. I guess I am still in denial about all of this. I have some tanks that I can hang in a bag on my shoulder but haven't used them yet at all, nor have I used any air while out and about which is only twice a week. I walk slowly and haven't really been breathless.

Also, how did you tell your children about your dx? About a week after I was dx, I told my daughter (age 52) who didn't understand what it is and I didn't go into detail. I simply told her that I need oxygen when walking. She worked for a lady years ago who had emphysema and told me on New Years day that the lady would never wear her oxygen when going out and she was gone within 2 years. My problem is also my 48 year old son. I haven't told him anything. I am concerned about how they both would take the truth. I would really rather not go into detail with them. Has anyone been in this situation? Also, my hubby is not quite convinced my stats go as low as they do. It was his initial idea to get the oximeter. Such is my dilemma.

----- "Alice Foote" <alydiafoote@ yahoo.com> wrote: > > > >

Hello, I am new. I have been reading your notes for a little over a month and I am learning a lot.

Introducing myself: I just turned 80. I was diagnosed with PF in June of 05, verified by biopsy the following August by my Pulmonologist in Kalamazoo, MI: diagnosed NSIP March of 06 after tests at the University of Michigan Teaching Hospital in Ann Arbor, MI.

You have referred to this as a "life changing" disease and it is!! We made the decision in 08 to leave our loved community in Kalamazoo, MI and move to Champagn-Urbana, IL where our daughter lives and near our son who lives in Crawfordsville, IN. We have spent a year getting used to the medical system here

and doctors.

I have a pulmonologist here but I continue my relationship with Ann Arbor and will return to the specialists there in the spring for tests. I also have regular testing here.

I am down to 5 mg of pred, take 100 mg of Imuran, take ranididan for acid reflux (for comfort and because I understand that esophugus problems can be "real problems." I also take 3 NAC --3 a day if I can get them down -- supposed to be on an empty stomach with fruitjuice, according to what I have read, and i do not have trouble --- I just forget because I take everything else with a meal: above plus vitamins, calcium, aspirin, lopressor, bactrim (every other day to guard aginst infection.)

I, like all of you, try to avoid crowds, etc. I am maintaining quite well, but I lack energy much of the time and seem to have a bad -- spike in blood sugar, should I eat things that are sweet, so i have to be careful to "eat well." If I am not careful, I get weak, and very fatigued, blurry eyes, muffled ears. This has been puzzling to my docors. Also, I have had a bad reaction to Prylosec -- these are all personal idiosyncracies, I guess. We all respond differently. If any of you can shed light...

The reason I am writing now is that I took the course Chronic Disease Management in Kalamazoo and it is an excellent course and the manual -- or book by the Stanford people is very good. There were seven of us in the class, each with something different. The thing we all had in common was the Chronic Disease part. When this course is put on, the cost is about $5, sometimes free -- the book is about $18.00. At least, this is my experience.

I, too, get discouraged because as you say, "people don't "get it." --That is most people don't. Some people do and, like some of you, I have had wonderful family support; but i, too have felt there is "no one" to talk to-- no support group -- because, as you say any support program deals with COPD or emphasema so I am very happy to get in on these discussions and that this "chat" experience is available.

I am understanding from you the importance of keeping the lungs going in exercise -- and have to keep nudging myself to walk, do weights, etc. to keep my self maintaing, as many others do.

I do not know what SATS are and I have not paid real attention to the reports as you all have. I will have to start... You all have so much knowledge.

Alice --NSIP '06

It is helpful to hear of your experiences. I find it hard to keep such a balanced life style and find that if/when I overdo, I pay for it.

> > >

> From: worth <hope2thend (AT) yahoo (DOT) com>> Subject: Workshops in your area> To: "Breath Support" <Breathe-Support@ yahoogroups. com>> Date: Saturday, January 16, 2010, 10:39 PM> > > >

>

There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!>

>

> >

January 19, 2010

Arianne/Pink

I tell everyone the plain simple facts and truth. I don't have the time

or energy to dance around any aspects of it. I need support and

friendship based on honesty and based on understanding. I will tell you

that with the vast majority it worked out well. We didn't discuss it

constantly but when something was relevant I didn't have to think " what

do they understand. " For me to walk around with those close to me having

no understanding would be too difficult.

Also, let me tell you a reason in my mind (and I do respect those who

disagree) I feel you owe honesty to everyone. Just as you are taking

time to come to grips with it, they deserve it. It's one thing to be

shocked by the diagnosis. But quite another to be shocked near the end

because someone you loved and trusted had lied to you along the way.

Some day the truth has to be told. It will come out. As difficult as

hearing it early may be, the resentment toward not being told may be far

worse. Trust them to deal with it. Some will deal poorly. But you will

have done your part. How would you feel if they were hiding something

like this from you?

There are things fairly often that pop up in just brief discussions with

those I'm closest to that can only be discussed right because of their

knowledge.

> >

>

> > From: worth hope2thend (AT) yahoo (DOT) com>

> > Subject: Workshops in your area

> > To: " Breath Support " <Breathe-Support@ yahoogroups. com>

> > Date: Saturday, January 16, 2010, 10:39 PM

> >

> > Â

> >

>

> >

>

> There might be an organization in your area offering the Chronic

Disease Self-Management Program workshop. That would be even better to

attend an actual workshop instead of the on-line program.

>

> The Chronic Disease Self-Management Program is offered by

organizations throughout the United States and Internationally. To find

a CDSMP program in your area click on your state or country for more

details, or scroll down to find your state or country. A list of

organizations that are licensed as of this date to give the workshop

follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

> Â

> C_53_Familial IPF_5/09, Washington

> HOPEÂ doesn't disappoint!

> >

>

> >

>

> >

>

January 19, 2010

I know you are right, Bruce. I did tell my daughter about a week after dx. She asked what it was and I told her. She didn't question further and I didn't explain further. She will ask more when she is ready. As for my son, I have decided to approach it in the same manner. I'm sure as time goes by they will ask more questions at which time I will explain as much as they want to know.I remember trying to tell my father about my mom's prognosis and he walked out of the room. He just didn't want to hear it. I understood and let it drop.He never again brought it up until she died.----- "Bruce" wrote:

>

> > > Arianne/Pink> > I tell everyone the plain simple facts and truth. I don't have the time> or energy to dance around any aspects of it. I need support and> friendship based on honesty and based on understanding. I will tell you> that with the vast majority it worked out well. We didn't discuss it> constantly but when something was relevant I didn't have to think "what> do they understand." For me to walk around with those close to me having> no understanding would be too difficult.> > Also, let me tell you a reason in my mind (and I do respect those who> disagree) I feel you owe honesty to everyone. Just as you are taking> time to come to grips with it, they deserve it. It's one thing to be> shocked by the diagnosis. But quite another to be shocked near the end> because someone you loved and trusted had lied to you along the way.> Some day the truth has to be told. It will come out. As difficult as> hearing it early may be, the resentment toward not being told may be far> worse. Trust them to deal with it. Some will deal poorly. But you will> have done your part. How would you feel if they were hiding something> like this from you?> > There are things fairly often that pop up in just brief discussions with> those I'm closest to that can only be discussed right because of their> knowledge.> > > > >> >> > > From: worth hope2thend (AT) yahoo (DOT) com>> > > Subject: Workshops in your area> > > To: "Breath Support" <Breathe-Support@ yahoogroups. com>> > > Date: Saturday, January 16, 2010, 10:39 PM> > >> > >> > > Ã‚> > >> >> > >> >> > There might be an organization in your area offering the Chronic> Disease Self-Management Program workshop. That would be even better to> attend an actual workshop instead of the on-line program.> >> > The Chronic Disease Self-Management Program is offered by> organizations throughout the United States and Internationally. To find> a CDSMP program in your area click on your state or country for more> details, or scroll down to find your state or country. A list of> organizations that are licensed as of this date to give the workshop> follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html> > Ã‚> > C_53_Familial IPF_5/09, Washington> > HOPEÃ‚ doesn't disappoint!> > >> >> > >> >> > >> > >> >> >

>

January 19, 2010

Bruce

my mother was a diabetic for a year or two, don't remember exactly

nov/Dec 1983

she was hospitalized at least once at the hospital where my brother ,Gene, was on staff and he was her attending, i think it was early december

a cat scan was done

she kept complaining about her eyesight going

my father died late December 1983

there was a cat scan

they had to keep changing the insulin

after my father died, i had to go to the house to fill the insulin syringes because she couldn't see

i forget the exact sequence of events after my dad died

she complained about her stomach, and my brother had someone else look at her, maybe a GI doc

at any rate, Gene was going on vacation for a week, he told me who to call if necessary

on a Friday, she complained alot

my nephews who were adults at the time, stopped at the house

then i stopped at the house on my way out

never when out that night

my mother had a hard time eating pretzels and an orange

i sat in a chair and said to myself, Joyce, there is a time when the child becomes the parent, and this is it

i took her to my house

thought she was depressed, new widow after 53 years of marriage, on Monday took her to a mental health lclinic, she found a sofa to sleep on in the waiting room

that night, i sort of yelled at her to get her to eat an egg

this was not my mother

on tuesday, spoke to Bruce about her [had spoken with him several times over the weekend, he may have even stopped at the house to check her, don't remember for sure]

we were already separated, but on his way home from work he stopped at my house, and called me to tell me he was taking her to the hospital that he was on staff at

to make a long story short

on Wednesday he contacted the first hospital, and was told that the cat scan showed pancreatic cancer

remember, the cat scan was from December

nobody told me or my other brother

gene was on vacation at the time

my second reaction was we have 2 to 3 months left, too upset to calculate the date of the cat scan

monday morning she died

besides being upset, i was extremely angry at Gene for not telling me

mulling it over for many years sometimes i wonder if it was better not to know, i continued a normal relationship with her, not knowing

on the other hand, had i known, would things have been any different those last weeks

gene did say that he told my father, but that knowledge went to the grave 8 weeks earlier

the funerals were on Tuesdays 8 weeks apart

hope this makes sense

the purpose of the story is to tell or not tell, what to tell, who to tell, etc, etc, etc

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Workshops in your area plus -- I am NewTo: Breathe-Support Date: Tuesday, January 19, 2010, 4:58 PM

Arianne/PinkI tell everyone the plain simple facts and truth. I don't have the timeor energy to dance around any aspects of it. I need support andfriendship based on honesty and based on understanding. I will tell youthat with the vast majority it worked out well. We didn't discuss itconstantly but when something was relevant I didn't have to think "whatdo they understand." For me to walk around with those close to me havingno understanding would be too difficult.Also, let me tell you a reason in my mind (and I do respect those whodisagree) I feel you owe honesty to everyone. Just as you are takingtime to come to grips with it, they deserve it. It's one thing to beshocked by the diagnosis. But quite another to be shocked near the endbecause someone you loved and trusted had lied to you along the way.Some day the truth has to be told. It will come out. As difficult ashearing it early may

be, the resentment toward not being told may be farworse. Trust them to deal with it. Some will deal poorly. But you willhave done your part. How would you feel if they were hiding somethinglike this from you?There are things fairly often that pop up in just brief discussions withthose I'm closest to that can only be discussed right because of theirknowledge.> >>> > From: worth hope2thend (AT) yahoo (DOT) com>> > Subject: Workshops in your area> > To: "Breath Support" <Breathe-Support@ yahoogroups. com>> > Date: Saturday, January 16, 2010, 10:39 PM> >> >> > Ã‚> >>> >>> There might be an organization in your area offering the ChronicDisease Self-Management Program workshop. That would be even better toattend an actual workshop instead of the on-line program.>> The Chronic Disease Self-Management Program is offered byorganizations throughout the United States and Internationally. To finda

CDSMP program in your area click on your state or country for moredetails, or scroll down to find your state or country. A list oforganizations that are licensed as of this date to give the workshopfollows. http://patienteduca tion.stanford. edu/organ/ cdsites.html> Ã‚> C_53_Familial IPF_5/09, Washington> HOPEÃ‚ doesn't disappoint!> >>> >>> >> >>

January 19, 2010

That is exactly how I feel. I don't want the relationship I have with my kids to change at all. I want us to go on as normal for as long as possible. I was the only one who knew about my mother's condition. I did decide to tell my husband. In those days (the 60's), the patient wasn't told by the doctor. It was very difficult for me to continue a normal relationship with my mom and often, although I knew, the denial took over. I'm sure that sooner or later my kids will know. When? I have no idea at this point. I don't want them to start treating me like an invalid. This is not easy.----- "Joyce T Rosenberg" wrote:

>

> > > Bruce

my mother was a diabetic for a year or two, don't remember exactly

nov/Dec 1983

she was hospitalized at least once at the hospital where my brother ,Gene, was on staff and he was her attending, i think it was early december

a cat scan was done

she kept complaining about her eyesight going

my father died late December 1983

there was a cat scan

they had to keep changing the insulin

after my father died, i had to go to the house to fill the insulin syringes because she couldn't see

i forget the exact sequence of events after my dad died

she complained about her stomach, and my brother had someone else look at her, maybe a GI doc

at any rate, Gene was going on vacation for a week, he told me who to call if necessary

on a Friday, she complained alot

my nephews who were adults at the time, stopped at the house

then i stopped at the house on my way out

never when out that night

my mother had a hard time eating pretzels and an orange

i sat in a chair and said to myself, Joyce, there is a time when the child becomes the parent, and this is it

i took her to my house

thought she was depressed, new widow after 53 years of marriage, on Monday took her to a mental health lclinic, she found a sofa to sleep on in the waiting room

that night, i sort of yelled at her to get her to eat an egg

this was not my mother

on tuesday, spoke to Bruce about her [had spoken with him several times over the weekend, he may have even stopped at the house to check her, don't remember for sure]

we were already separated, but on his way home from work he stopped at my house, and called me to tell me he was taking her to the hospital that he was on staff at

to make a long story short

on Wednesday he contacted the first hospital, and was told that the cat scan showed pancreatic cancer

remember, the cat scan was from December

nobody told me or my other brother

gene was on vacation at the time

my second reaction was we have 2 to 3 months left, too upset to calculate the date of the cat scan

monday morning she died

besides being upset, i was extremely angry at Gene for not telling me

mulling it over for many years sometimes i wonder if it was better not to know, i continued a normal relationship with her, not knowing

on the other hand, had i known, would things have been any different those last weeks

gene did say that he told my father, but that knowledge went to the grave 8 weeks earlier

the funerals were on Tuesdays 8 weeks apart

hope this makes sense

the purpose of the story is to tell or not tell, what to tell, who to tell, etc, etc, etc

>

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org> > > > > Subject: Re: Workshops in your area plus -- I am New> To: Breathe-Support > Date: Tuesday, January 19, 2010, 4:58 PM> > > > Arianne/Pink> > I tell everyone the plain simple facts and truth. I don't have the time> or energy to dance around any aspects of it. I need support and> friendship based on honesty and based on understanding. I will tell you> that with the vast majority it worked out well. We didn't discuss it> constantly but when something was relevant I didn't have to think "what> do they understand." For me to walk around with those close to me having> no understanding would be too difficult.> > Also, let me tell you a reason in my mind (and I do respect those who> disagree) I feel you owe honesty to everyone. Just as you are taking> time to come to grips with it, they deserve it. It's one thing to be> shocked by the diagnosis. But quite another to be shocked near the end> because someone you loved and trusted had lied to you along the way.> Some day the truth has to be told. It will come out. As difficult as> hearing it early may

be, the resentment toward not being told may be far> worse. Trust them to deal with it. Some will deal poorly. But you will> have done your part. How would you feel if they were hiding something> like this from you?> > There are things fairly often that pop up in just brief discussions with> those I'm closest to that can only be discussed right because of their> knowledge.> >

January 19, 2010

on the other hand

both my kids were told right away and looked it up on the internet

my older daughter lives in Florida

shortly after dx i went to visit her twice

the first time was shortly after i started meds

we were busy with my 4 year old grandson, so the trip was normal

the following week, i had to return, several weeks early due to a granddaughter who decided to come out prematurely

my daughter noticed the difference in me since the meds kicked in

also, we were busy with both children at this point

my younger daughter seemed to be in denial for a long time

she was that way after her dad's dx too

even now, she keeps telling me i can do more things than i do

like flying to visit her sister in florida

i am really scared to fly because on previous trips i would come home sick

the last time, there was a change in my condition shortly after the trip

i tend to blame it on being in the airplane with recycled air

but both the pulmonary and my dtg say it is safe to fly

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Workshops in your area plus -- I am NewTo: Breathe-Support Date: Tuesday, January 19, 2010, 6:12 PM

That is exactly how I feel. I don't want the relationship I have with my kids to change at all. I want us to go on as normal for as long as possible. I was the only one who knew about my mother's condition. I did decide to tell my husband. In those days (the 60's), the patient wasn't told by the doctor. It was very difficult for me to continue a normal relationship with my mom and often, although I knew, the denial took over. I'm sure that sooner or later my kids will know. When? I have no idea at this point. I don't want them to start treating me like an invalid.

This is not easy.

----- "Joyce T Rosenberg" <pinkrockybeach@ yahoo.com> wrote: > > > >

Bruce

my mother was a diabetic for a year or two, don't remember exactly

nov/Dec 1983

she was hospitalized at least once at the hospital where my brother ,Gene, was on staff and he was her attending, i think it was early december

a cat scan was done

she kept complaining about her eyesight going

my father died late December 1983

there was a cat scan

they had to keep changing the insulin

after my father died, i had to go to the house to fill the insulin syringes because she couldn't see

i forget the exact sequence of events after my dad died

she complained about her stomach, and my brother had someone else look at her, maybe a GI doc

at any rate, Gene was going on vacation for a week, he told me who to call if necessary

on a Friday, she complained alot

my nephews who were adults at the time, stopped at the house

then i stopped at the house on my way out

never when out that night

my mother had a hard time eating pretzels and an orange

i sat in a chair and said to myself, Joyce, there is a time when the child becomes the parent, and this is it

i took her to my house

thought she was depressed, new widow after 53 years of marriage, on Monday took her to a mental health lclinic, she found a sofa to sleep on in the waiting room

that night, i sort of yelled at her to get her to eat an egg

this was not my mother

on tuesday, spoke to Bruce about her [had spoken with him several times over the weekend, he may have even stopped at the house to check her, don't remember for sure]

we were already separated, but on his way home from work he stopped at my house, and called me to tell me he was taking her to the hospital that he was on staff at

to make a long story short

on Wednesday he contacted the first hospital, and was told that the cat scan showed pancreatic cancer

remember, the cat scan was from December

nobody told me or my other brother

gene was on vacation at the time

my second reaction was we have 2 to 3 months left, too upset to calculate the date of the cat scan

monday morning she died

besides being upset, i was extremely angry at Gene for not telling me

mulling it over for many years sometimes i wonder if it was better not to know, i continued a normal relationship with her, not knowing

on the other hand, had i known, would things have been any different those last weeks

gene did say that he told my father, but that knowledge went to the grave 8 weeks earlier

the funerals were on Tuesdays 8 weeks apart

hope this makes sense

the purpose of the story is to tell or not tell, what to tell, who to tell, etc, etc, etc

>

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org> > > > From: Bruce <brucemoreland@ gmail.com>> Subject: Re: Workshops in your area plus -- I am New> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, January 19, 2010, 4:58 PM> > > > Arianne/Pink> > I tell everyone the plain simple facts and truth. I don't have the time> or energy to dance around any aspects of it. I need support and> friendship based on honesty and based on understanding. I will tell you> that with the vast majority it worked out well. We didn't discuss it> constantly but when something was relevant I didn't have to think "what> do they understand." For me to walk around with those close to me having> no understanding would be too difficult.> > Also, let me tell you a reason in my mind (and I do respect those who> disagree) I feel you owe honesty to everyone. Just as you are taking> time to come to grips with it, they deserve it. It's one thing to be> shocked by the diagnosis. But quite another to be shocked near the end> because someone you loved and trusted had lied to you along the way.> Some day the

truth has to be told. It will come out. As difficult as> hearing it early may be, the resentment toward not being told may be far> worse. Trust them to deal with it. Some will deal poorly. But you will> have done your part. How would you feel if they were hiding something> like this from you?> > There are things fairly often that pop up in just brief discussions with> those I'm closest to that can only be discussed right because of their> knowledge.> >

January 19, 2010

Arianne

You don't want anything to change but it has and will. It's obviously

your choice but I just don't know that anything is more important in the

relationship than trust and honesty. The way I think to get them not to

treat you like an invalid is to let them see you active. No one treats

me like an invalid because they see me active as I can be. On the other

hand they do understand the things they need to like the necessity of

avoidance of germs and my limitations in how much I can do in a day and

specific tasks I can't do. I think for that reason I do want the person

I tell to be able to see me or see me shortly thereafter. Then you get

the paradox that we don't look sick.

Ultimately, you know yourself and your kids better than anyone does. I

just know the directness has worked very well in my situation with

family and friends. Understand this comes from a person too who for most

of his life was very private and didn't share anything, especially

medical. There was the time I would have kept it all in and told no one

the complete story. So, I've been there.

> >

>

> > From: Bruce brucemoreland@...

> > Subject: Re: Workshops in your area plus -- I am

New

> > To: Breathe-Support

> > Date: Tuesday, January 19, 2010, 4:58 PM

> >

> Arianne/Pink

> >

> > I tell everyone the plain simple facts and truth. I don't have the

time

> > or energy to dance around any aspects of it. I need support and

> > friendship based on honesty and based on understanding. I will tell

you

> > that with the vast majority it worked out well. We didn't discuss it

> > constantly but when something was relevant I didn't have to think

" what

> > do they understand. " For me to walk around with those close to me

having

> > no understanding would be too difficult.

> >

> > Also, let me tell you a reason in my mind (and I do respect those

who

> > disagree) I feel you owe honesty to everyone. Just as you are taking

> > time to come to grips with it, they deserve it. It's one thing to be

> > shocked by the diagnosis. But quite another to be shocked near the

end

> > because someone you loved and trusted had lied to you along the way.

> > Some day the truth has to be told. It will come out. As difficult as

> > hearing it early may be, the resentment toward not being told may be

far

> > worse. Trust them to deal with it. Some will deal poorly. But you

will

> > have done your part. How would you feel if they were hiding

something

> > like this from you?

> >

> > There are things fairly often that pop up in just brief discussions

with

> > those I'm closest to that can only be discussed right because of

their

> > knowledge.

> >

>

January 19, 2010

Alice

Well, if people are denying our true condition or arguing about it then

thats bothersome. But I love the " you look great " and such. I'm glad to

look better than my medical records. I've even shocked doctors that way.

I set my limits and control my use of my limited energy. But if I can

look better than expected or by my actions seem to be better than I am,

then I honestly like that.

When someone really wants to know I tell them and depending on their

knowledge of my situation or where we are and what we're doing

determines how much. A week ago I would have said the cold weather and

dryness had my sinuses so messed up and my skin so messed up but as far

as my disease my progression was still slow. I'll tell people that I've

progressed a little but I'm still feeling pretty good. I'll admit to

when I'm having a bad breathing day.

You know...if its a friend who really wants to know, they will really

feel good about being your friend if you show you can confide honestly

in them. Helps you but also helps them feel of need and service. So many

ask if they can do anything and that is one thing they can do but many

of us are hesitant to let them.

If my time is limited (which it is but always was), then I'm going to

spend it with those who are healthy for me. I don't complain about my

disease and I don't whine or talk about it. But, if they ask, I'm going

to be direct and completely honest. I expect them to be honest when I

ask how they are. I don't ask if I don't really care or want to know.

One thing my counselor sometimes points out is a weakness when we try to

make decisions for others. We determine what they can and can't handle,

without giving them the chance. I'm guilty of having a hard time letting

people help me when they really want to and it gives them pleasure. I

don't want to inconvenience them but sometimes isn't that their choice

if they really want to do something?

Put yourself on the other side and ask what you'd want the person to say

or do. I know I want my friends to feel they can honestly confide in me

even if its not what I want to hear. We all do on this forum. Thats the

strength of our support. Why is it easy here and so hard elsewhere?

> > >

> >

> > > From: Bruce brucemoreland@ ...

> > > Subject: Re: Workshops in your area plus -- I am

> New

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

> > > Date: Tuesday, January 19, 2010, 4:58 PM

> > >

> > Arianne/Pink

> > >

> > > I tell everyone the plain simple facts and truth. I don't have the

> time

> > > or energy to dance around any aspects of it. I need support and

> > > friendship based on honesty and based on understanding. I will

tell

> you

> > > that with the vast majority it worked out well. We didn't discuss

it

> > > constantly but when something was relevant I didn't have to think

> " what

> > > do they understand. " For me to walk around with those close to me

> having

> > > no understanding would be too difficult.

> > >

> > > Also, let me tell you a reason in my mind (and I do respect those

> who

> > > disagree) I feel you owe honesty to everyone. Just as you are

taking

> > > time to come to grips with it, they deserve it. It's one thing to

be

> > > shocked by the diagnosis. But quite another to be shocked near the

> end

> > > because someone you loved and trusted had lied to you along the

way.

> > > Some day the truth has to be told. It will come out. As difficult

as

> > > hearing it early may be, the resentment toward not being told may

be

> far

> > > worse. Trust them to deal with it. Some will deal poorly. But you

> will

> > > have done your part. How would you feel if they were hiding

> something

> > > like this from you?

> > >

> > > There are things fairly often that pop up in just brief

discussions

> with

> > > those I'm closest to that can only be discussed right because of

> their

> > > knowledge.

> > >

> >

>

January 19, 2010

My daughter has known from the beginning, and she has been my staunchest supporter. Her kids know-matter of fact her 16 yr old son is adamant about moving to Iowa so that he can make sure nothing happens to his ayeaye(that's what he calls me) for a long time-even though I keep telling him there is no date stamped anywhere on me. I believe in total honesty with family. My relationship with my whole family got better since I've been diagnosed, we are a lot closer. Kathy ILD/Hypersensitivity pneumonitis 3/08> > From: Bruce <brucemoreland@ gmail.com>> Subject: Re: Workshops in your area plus -- I am New> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, January 19, 2010, 4:58 PM> > > > Arianne/Pink> > I tell everyone the plain simple facts and truth. I don't have the time> or energy to dance around any aspects of it. I need support and> friendship based on honesty and based on understanding. I will tell you> that with the vast majority it worked out well. We didn't discuss it> constantly but when something was relevant I didn't have to think "what> do they understand." For me to walk around with those close to me having> no understanding would be too difficult.> > Also, let me tell you a reason in my mind (and I do respect those who> disagree) I feel you owe honesty to everyone. Just as you are taking> time to come to grips with it, they deserve it. It's one thing to be> shocked by the diagnosis. But quite another to be shocked near the end> because someone you loved and trusted had lied to you along the way.> Some day the

truth has to be told. It will come out. As difficult as> hearing it early may

be, the resentment toward not being told may be far> worse. Trust them to deal with it. Some will deal poorly. But you will> have done your part. How would you feel if they were hiding something> like this from you?> > There are things fairly often that pop up in just brief discussions with> those I'm closest to that can only be discussed right because of their> knowledge.> >

January 20, 2010

My comment when someone asks me how I am doing is.. I'm holding my own...My children knew from the very beginning that I had this disease and they are very supportive maybe because they do know. I don't like crying to them and that has been the hardest thing but they do see that I am hurting and they hurt with me I guess.To:

Breathe-Support Sent: Tue, January 19, 2010 10:01:44 PMSubject: Re: Re: Workshops in your area plus -- I am New

Bruce, I think you "hit the nail on the head" about the paradox that we don't look sick; and

I can add: the constant comment that " you look great." This comes about when I am so short of breath I can hardly talk in a social occasion or I have so little energy I can't stand up or need to use a cane because I am dizzy with meds or a high sugar spike -- or I have to limit how many things I can go to in a day and I pay for it for the next two days if I do do too much.

There is a line between letting people know I have breathing problem and trying to "act normal." And it is hard to know what to say when someone "really" wants to know the answer to "How are you?" The best I can do to answer (so far) is to say I am maintaining. .. holding my own. Who has a better suggestion??

Alice

From: Bruce <brucemoreland@ gmail.com>Subject: Re: Workshops in your area plus -- I am NewTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 19, 2010, 8:56 PM

ArianneYou don't want anything to change but it has and will. It's obviouslyyour choice but I just don't know that anything is more important in therelationship than trust and honesty. The way I think to get them not totreat you like an invalid is to let them see you active. No one treatsme like an invalid because they see me active as I can be. On the otherhand they do understand the things they need to like the necessity ofavoidance of germs and my limitations in how much I can do in a day andspecific tasks I can't do. I think for that reason I do want the personI tell to be able to see me or see me shortly thereafter. Then you getthe paradox that we don't look sick.Ultimately, you know yourself and your kids better than anyone does. Ijust know the directness has worked very well in my situation withfamily and friends. Understand this comes from a person too who for mostof his life

was very private and didn't share anything, especiallymedical. There was the time I would have kept it all in and told no onethe complete story. So, I've been there.> >>>> > From: Bruce brucemoreland@ ...> > Subject: Re: Workshops

in your area plus -- I amNew> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, January 19, 2010, 4:58 PM> >> >> >> >> Arianne/Pink> >> > I tell everyone the plain simple facts and truth. I don't have thetime> > or energy to dance around any aspects of it. I need support and> > friendship based on honesty and based on understanding. I will tellyou> > that with the vast majority it worked out well. We didn't discuss it> > constantly but when something was relevant I didn't have to think"what> > do they understand.." For me to walk around with those close to mehaving> > no understanding would be too

difficult.> >> > Also, let me tell you a reason in my mind (and I do respect thosewho> > disagree) I feel you owe honesty to everyone. Just as you are taking> > time to come to grips with it, they deserve it. It's one thing to be> > shocked by the diagnosis. But quite another to be shocked near theend> > because someone you loved and trusted had lied to you along the way.> > Some day the truth has to be told. It will come out. As difficult as> > hearing it early may be, the resentment toward not being told may befar> > worse. Trust them to deal with it. Some will deal poorly. But youwill> > have done your part. How would you feel if they were hidingsomething> > like this from you?> >> > There are things fairly often that pop up in just brief discussionswith> > those I'm closest to that can

only be discussed right because oftheir> > knowledge.> >> >>

January 20, 2010

one of the hardest changes is not being able to see the grandchildren when they are sick because we are so susceptible to infection

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Workshops in your area plus -- I am NewTo: Breathe-Support Date: Tuesday, January 19, 2010, 8:56 PM

ArianneYou don't want anything to change but it has and will. It's obviouslyyour choice but I just don't know that anything is more important in therelationship than trust and honesty. The way I think to get them not totreat you like an invalid is to let them see you active. No one treatsme like an invalid because they see me active as I can be. On the otherhand they do understand the things they need to like the necessity ofavoidance of germs and my limitations in how much I can do in a day andspecific tasks I can't do. I think for that reason I do want the personI tell to be able to see me or see me shortly thereafter. Then you getthe paradox that we don't look sick.Ultimately, you know yourself and your kids better than anyone does. Ijust know the directness has worked very well in my situation withfamily and friends. Understand this comes from a person too who for mostof his life

was very private and didn't share anything, especiallymedical. There was the time I would have kept it all in and told no onethe complete story. So, I've been there.> >>>> > From: Bruce brucemoreland@ ...> > Subject: Re: Workshops

in your area plus -- I amNew> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, January 19, 2010, 4:58 PM> >> >> >> >> Arianne/Pink> >> > I tell everyone the plain simple facts and truth. I don't have thetime> > or energy to dance around any aspects of it. I need support and> > friendship based on honesty and based on understanding. I will tellyou> > that with the vast majority it worked out well. We didn't discuss it> > constantly but when something was relevant I didn't have to think"what> > do they understand." For me to walk around with those close to mehaving> > no understanding would be too

difficult.> >> > Also, let me tell you a reason in my mind (and I do respect thosewho> > disagree) I feel you owe honesty to everyone. Just as you are taking> > time to come to grips with it, they deserve it. It's one thing to be> > shocked by the diagnosis. But quite another to be shocked near theend> > because someone you loved and trusted had lied to you along the way.> > Some day the truth has to be told. It will come out. As difficult as> > hearing it early may be, the resentment toward not being told may befar> > worse. Trust them to deal with it. Some will deal poorly. But youwill> > have done your part. How would you feel if they were hidingsomething> > like this from you?> >> > There are things fairly often that pop up in just brief discussionswith> > those I'm closest to that can

only be discussed right because oftheir> > knowledge.> >> >>

January 20, 2010

You look great... [with a hose in my nose and an oxygen tank on my shoulder]

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Workshops in your area plus -- I am NewTo: Breathe-Support Date: Tuesday, January 19, 2010, 10:52 PM

AliceWell, if people are denying our true condition or arguing about it thenthats bothersome. But I love the "you look great" and such. I'm glad tolook better than my medical records. I've even shocked doctors that way.I set my limits and control my use of my limited energy. But if I canlook better than expected or by my actions seem to be better than I am,then I honestly like that.When someone really wants to know I tell them and depending on theirknowledge of my situation or where we are and what we're doingdetermines how much. A week ago I would have said the cold weather anddryness had my sinuses so messed up and my skin so messed up but as faras my disease my progression was still slow. I'll tell people that I'veprogressed a little but I'm still feeling pretty good. I'll admit towhen I'm having a bad breathing day.You know...if its a friend who really wants to know, they will

reallyfeel good about being your friend if you show you can confide honestlyin them. Helps you but also helps them feel of need and service. So manyask if they can do anything and that is one thing they can do but manyof us are hesitant to let them.If my time is limited (which it is but always was), then I'm going tospend it with those who are healthy for me. I don't complain about mydisease and I don't whine or talk about it. But, if they ask, I'm goingto be direct and completely honest. I expect them to be honest when Iask how they are. I don't ask if I don't really care or want to know.One thing my counselor sometimes points out is a weakness when we try tomake decisions for others. We determine what they can and can't handle,without giving them the chance. I'm guilty of having a hard time lettingpeople help me when they really want to and it gives them pleasure. Idon't want to

inconvenience them but sometimes isn't that their choiceif they really want to do something?Put yourself on the other side and ask what you'd want the person to sayor do. I know I want my friends to feel they can honestly confide in meeven if its not what I want to hear. We all do on this forum. Thats thestrength of our support. Why is it easy here and so hard elsewhere?> > >> >> >> > > From: Bruce brucemoreland@ ...> > > Subject: Re: Workshops in your area plus -- I am> New> > > To: Breathe-Support@ yahoogroups. com> > > Date: Tuesday, January 19, 2010, 4:58 PM>

> >> > >> > >> > >> > Arianne/Pink> > >> > > I tell everyone the plain simple facts and truth. I don't have the> time> > > or energy to dance around any aspects of it. I need support and> > > friendship based on honesty and based on understanding. I willtell> you> > > that with the vast majority it worked out well. We didn't discussit> > > constantly but when something was relevant I didn't have to think> "what> > > do they understand." For me to walk around with those close to me> having> > > no understanding would be too difficult.> > >> > > Also, let me tell you a reason in my mind (and I do respect those> who> > > disagree) I feel you owe honesty to everyone. Just as you aretaking> > > time to

come to grips with it, they deserve it. It's one thing tobe> > > shocked by the diagnosis. But quite another to be shocked near the> end> > > because someone you loved and trusted had lied to you along theway.> > > Some day the truth has to be told. It will come out. As difficultas> > > hearing it early may be, the resentment toward not being told maybe> far> > > worse. Trust them to deal with it. Some will deal poorly. But you> will> > > have done your part. How would you feel if they were hiding> something> > > like this from you?> > >> > > There are things fairly often that pop up in just briefdiscussions> with> > > those I'm closest to that can only be discussed right because of> their> > > knowledge.> > >> > >>

>>

January 20, 2010

mary your children are hurting too, knowing that they have a parent with this disease

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Workshops in your area plus -- I am NewTo: Breathe-Support Date: Wednesday, January 20, 2010, 7:46 AM

My comment when someone asks me how I am doing is.. I'm holding my own...My children knew from the very beginning that I had this disease and they are very supportive maybe because they do know. I don't like crying to them and that has been the hardest thing but they do see that I am hurting and they hurt with me I guess.

From: Alice Foote <alydiafoote@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 19, 2010 10:01:44 PMSubject: Re: Re: Workshops in your area plus -- I am New

Bruce, I think you "hit the nail on the head" about the paradox that we don't look sick; and

I can add: the constant comment that " you look great." This comes about when I am so short of breath I can hardly talk in a social occasion or I have so little energy I can't stand up or need to use a cane because I am dizzy with meds or a high sugar spike -- or I have to limit how many things I can go to in a day and I pay for it for the next two days if I do do too much.

There is a line between letting people know I have breathing problem and trying to "act normal." And it is hard to know what to say when someone "really" wants to know the answer to "How are you?" The best I can do to answer (so far) is to say I am maintaining. .. holding my own. Who has a better suggestion??

Alice

From: Bruce <brucemoreland@ gmail.com>Subject: Re: Workshops in your area plus -- I am NewTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 19, 2010, 8:56 PM

ArianneYou don't want anything to change but it has and will. It's obviouslyyour choice but I just don't know that anything is more important in therelationship than trust and honesty. The way I think to get them not totreat you like an invalid is to let them see you active. No one treatsme like an invalid because they see me active as I can be. On the otherhand they do understand the things they need to like the necessity ofavoidance of germs and my limitations in how much I can do in a day andspecific tasks I can't do. I think for that reason I do want the personI tell to be able to see me or see me shortly thereafter. Then you getthe paradox that we don't look sick.Ultimately, you know yourself and your kids better than anyone does. Ijust know the directness has worked very well in my situation withfamily and friends. Understand this comes from a person too who for mostof his life

was very private and didn't share anything, especiallymedical. There was the time I would have kept it all in and told no onethe complete story. So, I've been there.> >>>> > From: Bruce brucemoreland@ ...> > Subject: Re: Workshops in your area plus -- I amNew> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, January 19, 2010, 4:58 PM> >> >> >> >> Arianne/Pink> >> > I tell everyone the plain simple facts and truth. I don't have thetime> > or energy to dance around any aspects of it. I need support and> > friendship based on honesty and based on understanding. I will tellyou> > that with the vast majority it worked out well. We didn't discuss it> > constantly but when something was relevant I didn't have to think"what> > do they understand.. " For me to walk around with those close to mehaving> > no understanding would be too difficult.> >> > Also, let me tell you a reason in my mind (and I do respect thosewho>

> disagree) I feel you owe honesty to everyone. Just as you are taking> > time to come to grips with it, they deserve it. It's one thing to be> > shocked by the diagnosis. But quite another to be shocked near theend> > because someone you loved and trusted had lied to you along the way.> > Some day the truth has to be told. It will come out. As difficult as> > hearing it early may be, the resentment toward not being told may befar> > worse. Trust them to deal with it. Some will deal poorly. But youwill> > have done your part. How would you feel if they were hidingsomething> > like this from you?> >> > There are things fairly often that pop up in just brief discussionswith> > those I'm closest to that can only be discussed right because oftheir> > knowledge.> >>

>>

January 20, 2010

Pink

But they still say it.

> > > >

> > >

> > > > From: Bruce brucemoreland@ ...

> > > > Subject: Re: Workshops in your area plus -- I

am

> > New

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

> > > > Date: Tuesday, January 19, 2010, 4:58 PM

> > > >

> > > Arianne/Pink

> > > >

> > > > I tell everyone the plain simple facts and truth. I don't have

the

> > time

> > > > or energy to dance around any aspects of it. I need support and

> > > > friendship based on honesty and based on understanding. I will

> tell

> > you

> > > > that with the vast majority it worked out well. We didn't

discuss

> it

> > > > constantly but when something was relevant I didn't have to

think

> > " what

> > > > do they understand. " For me to walk around with those close to

me

> > having

> > > > no understanding would be too difficult.

> > > >

> > > > Also, let me tell you a reason in my mind (and I do respect

those

> > who

> > > > disagree) I feel you owe honesty to everyone. Just as you are

> taking

> > > > time to come to grips with it, they deserve it. It's one thing

to

> be

> > > > shocked by the diagnosis. But quite another to be shocked near

the

> > end

> > > > because someone you loved and trusted had lied to you along the

> way.

> > > > Some day the truth has to be told. It will come out. As

difficult

> as

> > > > hearing it early may be, the resentment toward not being told

may

> be

> > far

> > > > worse. Trust them to deal with it. Some will deal poorly. But

you

> > will

> > > > have done your part. How would you feel if they were hiding

> > something

> > > > like this from you?

> > > >

> > > > There are things fairly often that pop up in just brief

> discussions

> > with

> > > > those I'm closest to that can only be discussed right because of

> > their

> > > > knowledge.

> > > >

> > >

> >

>

January 20, 2010

But when they live with you it's a totally different story. Although I must say, they have been sick, but fingers crossed, I haven't caught anything yet. All I've had is 2 UTI's, which aren't contageous(sp).Kathy ILD/Hypersensitivity pneumontitis 3/08

From: Bruce <brucemoreland@ gmail.com>Subject: Re: Workshops in your area plus -- I am NewTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 19, 2010, 8:56 PM

ArianneYou don't want anything to change but it has and will. It's obviouslyyour choice but I just don't know that anything is more important in therelationship than trust and honesty. The way I think to get them not totreat you like an invalid is to let them see you active. No one treatsme like an invalid because they see me active as I can be. On the otherhand they do understand the things they need to like the necessity ofavoidance of germs and my limitations in how much I can do in a day andspecific tasks I can't do. I think for that reason I do want the personI tell to be able to see me or see me shortly thereafter. Then you getthe paradox that we don't look sick.Ultimately, you know yourself and your kids better than anyone does. Ijust know the directness has worked very well in my situation withfamily and friends. Understand this comes from a person too who for mostof his life

was very private and didn't share anything, especiallymedical. There was the time I would have kept it all in and told no onethe complete story. So, I've been there.> >>>> > From: Bruce brucemoreland@ ...> > Subject: Re: Workshops

in your area plus -- I amNew> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, January 19, 2010, 4:58 PM> >> >> >> >> Arianne/Pink> >> > I tell everyone the plain simple facts and truth. I don't have thetime> > or energy to dance around any aspects of it. I need support and> > friendship based on honesty and based on understanding. I will tellyou> > that with the vast majority it worked out well. We didn't discuss it> > constantly but when something was relevant I didn't have to think"what> > do they understand." For me to walk around with those close to mehaving> > no understanding would be too

difficult.> >> > Also, let me tell you a reason in my mind (and I do respect thosewho> > disagree) I feel you owe honesty to everyone. Just as you are taking> > time to come to grips with it, they deserve it. It's one thing to be> > shocked by the diagnosis. But quite another to be shocked near theend> > because someone you loved and trusted had lied to you along the way.> > Some day the truth has to be told. It will come out. As difficult as> > hearing it early may be, the resentment toward not being told may befar> > worse. Trust them to deal with it. Some will deal poorly. But youwill> > have done your part. How would you feel if they were hidingsomething> > like this from you?> >> > There are things fairly often that pop up in just brief discussionswith> > those I'm closest to that can

only be discussed right because oftheir> > knowledge.> >> >>

January 21, 2010

Hi Alice,

Welcome to the group! You will find this group to be extremely supportive, knowledgeable, loving, kind and humorous. I wish we could all meet in person as a support group. But the on-line support is the next best thing! I've been able to meet a couple of group members that live close to me and maybe you will too.

I was diagnosed in May 2009 with IPF at age 53. The docs are treating it with Prednisone 20mg, NAC 600mg, and Azathioprine 100mg. I also have GERD, which is relieved with Omeprazole (generic drug for Prilosec) 20mg. I have sleep apnea and use CPAP at night, high cholesterol, hypo-thyroidism. I use oxygen for exertion 3lpm, that means anytime I get up and move, and for sleep 2lpm. I am a candidate for a lung transplant as soon as I lose about 30lbs. So far I've lost 5lbs! So, my main focus these days is my diet.

I feel good most days, today I was really sleepy all day, took 2 naps and its now 9:15p and I'm just about ready to go bed for the night.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Sun, January 17, 2010 6:29:56 PMSubject: Re: Workshops in your area plus -- I am New

Hello, I am new. I have been reading your notes for a little over a month and I am learning a lot.

Introducing myself: I just turned 80. I was diagnosed with PF in June of 05, verified by biopsy the following August by my Pulmonologist in Kalamazoo, MI: diagnosed NSIP March of 06 after tests at the University of Michigan Teaching Hospital in Ann Arbor, MI.

You have referred to this as a "life changing" disease and it is!! We made the decision in 08 to leave our loved community in Kalamazoo, MI and move to Champagn-Urbana, IL where our daughter lives and near our son who lives in Crawfordsville, IN. We have spent a year getting used to the medical system here

and doctors.

I have a pulmonologist here but I continue my relationship with Ann Arbor and will return to the specialists there in the spring for tests. I also have regular testing here.

I am down to 5 mg of pred, take 100 mg of Imuran, take ranididan for acid reflux (for comfort and because I understand that esophugus problems can be "real problems." I also take 3 NAC --3 a day if I can get them down -- supposed to be on an empty stomach with fruitjuice, according to what I have read, and i do not have trouble --- I just forget because I take everything else with a meal: above plus vitamins, calcium, aspirin, lopressor, bactrim (every other day to guard aginst infection.)

I, like all of you, try to avoid crowds, etc. I am maintaining quite well, but I lack energy much of the time and seem to have a bad -- spike in blood sugar, should I eat things that are sweet, so i have to be careful to "eat well." If I am not careful, I get weak, and very fatigued, blurry eyes, muffled ears. This has been puzzling to my docors. Also, I have had a bad reaction to Prylosec -- these are all personal idiosyncracies, I guess. We all respond differently. If any of you can shed light...

The reason I am writing now is that I took the course Chronic Disease Management in Kalamazoo and it is an excellent course and the manual -- or book by the Stanford people is very good. There were seven of us in the class, each with something different. The thing we all had in common was the Chronic Disease part. When this course is put on, the cost is about $5, sometimes free -- the book is about $18.00. At least, this is my experience.

I, too, get discouraged because as you say, "people don't "get it." --That is most people don't. Some people do and, like some of you, I have had wonderful family support; but i, too have felt there is "no one" to talk to-- no support group -- because, as you say any support program deals with COPD or emphasema so I am very happy to get in on these discussions and that this "chat" experience is available.

I am understanding from you the importance of keeping the lungs going in exercise -- and have to keep nudging myself to walk, do weights, etc. to keep my self maintaing, as many others do.

I do not know what SATS are and I have not paid real attention to the reports as you all have. I will have to start... You all have so much knowledge.

Alice --NSIP '06

It is helpful to hear of your experiences. I find it hard to keep such a balanced life style and find that if/when I overdo, I pay for it.

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Workshops in your areaTo: "Breath Support" <Breathe-Support@ yahoogroups. com>Date: Saturday, January 16, 2010, 10:39 PM

There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

January 22, 2010

Hi ,

Thank you for the Welcome note. For IPF we are on the same meds but I just got rid of the Prilosec -- it was causing problems for me related to imbalance, blurry eyes, etc. and I am taking ranitan (sp) an acid reducer now (twice a day) and I feel better. I have Lopressor that I take because I have a stent, but I do not have the others that you have.

A mixture of drugs is more difficult to manage than I would have imagined and I find that the pulmonologists, including the specialists in inerstitial, want your primary care doctor to manage these side efffects.

You have a lot to manage, especially getting ready for a lung transplant. Keep us informed.

I am very new here and have not answered anyone individually. I have read quite a bit about the disease and find that many people on the air are very informed.

I, for instance, do not know what the drug Cellcept is. I wonder if it is like Pulmacort that I take whiffs of morning and night. People refer to taking Cellcept.

Alice 80 NSIP May 05

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Workshops in your areaTo: "Breath Support" <Breathe-Support@ yahoogroups. com>Date: Saturday, January 16, 2010, 10:39 PM

There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

January 22, 2010

Alice,Cellcept is an immunosuppressant to help with the inflammation in the lungs. It is in pill form and comes in as far as I know 500 mg tabs. Hope that helps you. Oh, and before I forget, welcome to the group. It is a wonderful, knowledgeable Air Family. And the best thing is THEY GET IT!Kathy ILD/Hypersensitivity pneumonitis 3/08

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Workshops in your areaTo: "Breath Support" <Breathe-Support@ yahoogroups. com>Date: Saturday, January 16, 2010, 10:39 PM

There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

January 22, 2010

Alice,

Cellcept is not anything like Pulmacort. Cellcept is immune suppressant. It is used commonly post-transplant to prevent rejection of a transplanted organ. In addition it is sometimes used to treat an auto-immune condition such as lupus. There are many auto-immune diseases which cause interstitial lung disease and pulmonary fibrosis. In that case you can sometimes slow the progress of the lung disease by treating the auto-immune condition.

Hope that makes some sense!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Fri, January 22, 2010 6:16:57 PMSubject: Re: Workshops in your area plus -- I am New

Hi ,

Thank you for the Welcome note. For IPF we are on the same meds but I just got rid of the Prilosec -- it was causing problems for me related to imbalance, blurry eyes, etc. and I am taking ranitan (sp) an acid reducer now (twice a day) and I feel better. I have Lopressor that I take because I have a stent, but I do not have the others that you have.

A mixture of drugs is more difficult to manage than I would have imagined and I find that the pulmonologists, including the specialists in inerstitial, want your primary care doctor to manage these side efffects.

You have a lot to manage, especially getting ready for a lung transplant. Keep us informed.

I am very new here and have not answered anyone individually. I have read quite a bit about the disease and find that many people on the air are very informed.

I, for instance, do not know what the drug Cellcept is. I wonder if it is like Pulmacort that I take whiffs of morning and night. People refer to taking Cellcept.

Alice 80 NSIP May 05

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Workshops in your areaTo: "Breath Support" <Breathe-Support@ yahoogroups. com>Date: Saturday, January 16, 2010, 10:39 PM

There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

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