Re: I'm new.......and quite scared!

[Guest guest]

Myrlene

welcome

sorry you need us

glad you found us

as Peggy would say: there is no expiration date stamped on your behind

being scared is normal

it is a horrible disease

we have people in this group who were diagnosed 8 - 13 years ago (I think 13 is the longest)

make sure you go to a center that specializes in interstitial lung diseases -- ild's --

get yourself an oximeter to monitor your oxygen levels -- so you know when to use the o2 and when to increase the lpms

my oximeter if from nonin -- can be purchased on line

other people will give you an address for a different unit -- also can be purchased on line

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: I'm new.......and quite scared!To: Breathe-Support Date: Friday, November 6, 2009, 12:45 PM

I am a 59 year old woman who was diagnosed with IPF in Sep 09 - like 7 weeks ago. I must admit I think I cried for 6 weeks...... I am coming to terms with my diagnosis and trying to get "my house in order". Will, trust, advance directive etc. I'm in the very beginning of the disease - I don't use O2 everyday. I really only need it when I talk a lot, walk far, climb my back steps (5), etc. My O2 is only at 2L so I'm lucky - for now. I have intermittent chest pain and cough. The biggest change in my life has been the 8-10 hours of sleep I now need. For years I worked and commuted 50-60 hours a week and survived on 5-7 hours sleep a night!I do have to admit that reading the email strings from the last 2 days has me absolutely terrified. The future of the disease is so dismal...and my family will carry the burden of caring for me. It scares the living hell out of me. I'm not married, my boyfriend of 4 years lives with me. He is much younger and

I keep thinking how young he is to have to care for me. My son is 32 and lives close by, but is also on disability. My sister also lives close, but still has 3 kids at home and she works. My doctor put me on disability immediately due to my extreme fatigue and I do feel better now that I'm not forced to drag myself to work. With this all said....I guess I'm just scared, overwhelmed. ...and very worried about the future.Myrlene BrownLa Verne, CA

[Guest guest]

Myrlene,I too have been newly diagnosed and am new to the group. But I would like to welcome you to this group. There is much to learn from the others here and of course researching on your own. This is what I have been doing thus far. My emotions have been like riding a roller coaster. But coming here has helped give me the support needed for some balance in my life. I just want to say your feelings are valid! Yes it can be scarey to read about those who have progressed further than us newer ones. But we are all different and I am sure each of our experiences will not be exactly the same. But how wonderful to have a place like this to come to and share our feelings, fears, knowledge, tears, laughter and pain. Recently some one even shared their 10 year anniversary with PF I believe.

Whatever time any of us have with PF or not with PF we need to make each day count. The changes our bodies go through seem to be many. I too have been one who has needed much more sleep now. But I stopped fighting it and just allowed myself to sleep as needed and I can tell my depression and mood is much better because of it. Accepting our limitations can be a hard thing to do. I truly believe that through this process not only will I learn about this disease but I will grow as a person as well.Good luck to youI hope this helps you in some wayDonna(Iowa)From: Myrlene

To: Breathe-Support Sent: Fri, November 6, 2009 11:45:56 AMSubject: I'm new.......and quite scared!

I am a 59 year old woman who was diagnosed with IPF in Sep 09 - like 7 weeks ago. I must admit I think I cried for 6 weeks...... I am coming to terms with my diagnosis and trying to get "my house in order". Will, trust, advance directive etc. I'm in the very beginning of the disease - I don't use O2 everyday. I really only need it when I talk a lot, walk far, climb my back steps (5), etc. My O2 is only at 2L so I'm lucky - for now. I have intermittent chest pain and cough. The biggest change in my life has been the 8-10 hours of sleep I now need. For years I worked and commuted 50-60 hours a week and survived on 5-7 hours sleep a night!

I do have to admit that reading the email strings from the last 2 days has me absolutely terrified. The future of the disease is so dismal...and my family will carry the burden of caring for me. It scares the living hell out of me. I'm not married, my boyfriend of 4 years lives with me. He is much younger and I keep thinking how young he is to have to care for me. My son is 32 and lives close by, but is also on disability. My sister also lives close, but still has 3 kids at home and she works. My doctor put me on disability immediately due to my extreme fatigue and I do feel better now that I'm not forced to drag myself to work.

With this all said....I guess I'm just scared, overwhelmed. ...and very worried about the future.

Myrlene Brown

La Verne, CA

[Guest guest]

Myrlene, we are here for you.........I was scared and still am....All we have is hope, and we get that in here

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Fri, November 6, 2009 12:45:56 PMSubject: I'm new.......and quite scared!

I am a 59 year old woman who was diagnosed with IPF in Sep 09 - like 7 weeks ago. I must admit I think I cried for 6 weeks...... I am coming to terms with my diagnosis and trying to get "my house in order". Will, trust, advance directive etc. I'm in the very beginning of the disease - I don't use O2 everyday. I really only need it when I talk a lot, walk far, climb my back steps (5), etc. My O2 is only at 2L so I'm lucky - for now. I have intermittent chest pain and cough. The biggest change in my life has been the 8-10 hours of sleep I now need. For years I worked and commuted 50-60 hours a week and survived on 5-7 hours sleep a night!I do have to admit that reading the email strings from the last 2 days has me absolutely terrified. The future of the disease is so dismal...and my family will carry the burden of caring for me. It scares the living hell out of me. I'm not married, my boyfriend of 4 years lives with me. He is much younger and I

keep thinking how young he is to have to care for me. My son is 32 and lives close by, but is also on disability. My sister also lives close, but still has 3 kids at home and she works. My doctor put me on disability immediately due to my extreme fatigue and I do feel better now that I'm not forced to drag myself to work. With this all said....I guess I'm just scared, overwhelmed. ...and very worried about the future.Myrlene BrownLa Verne, CA

[Guest guest]

Myrlene,

Welcome to the group! I'm so sorry that you've been diagnosed with this horror show of a disease but I'm glad that we can be hear to offer information, support and friendship. You will get through this initial period of shock. Once you do you will realize, as most of us have, that you are not going to die tomorrow. The task that lies before you is to learn everything you can about your particular form of interstitial lung disease, what treatments are available and what you can do to be able to live as best you can with the illness. There is a 'new normal' out there waiting to be discovered.

I personally have been living with pulmonary fibrosis for about three and a half years. I've remained relatively stable during that time. We have members who are living 10+ years with pf. You will find that we share everything here. The good, the bad and the ugly. It's all part of this disease, heck it's part of life. I'm sure that right now posts about hospice and end of life care are hard to take. Feel free to skip over anything you aren't up to. There's no law that says you have to read everything.

Feel free to ask questions, anything you want. Chances are either someone might have an answer or can direct you where to find the information.

Please consider us a new circle of friends. Believe me when I tell you that you've just landed amongst some of the best people anywhere. I hope that you find the support and friendship here that I have!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Fri, November 6, 2009 12:45:56 PMSubject: I'm new.......and quite scared!

I am a 59 year old woman who was diagnosed with IPF in Sep 09 - like 7 weeks ago. I must admit I think I cried for 6 weeks...... I am coming to terms with my diagnosis and trying to get "my house in order". Will, trust, advance directive etc. I'm in the very beginning of the disease - I don't use O2 everyday. I really only need it when I talk a lot, walk far, climb my back steps (5), etc. My O2 is only at 2L so I'm lucky - for now. I have intermittent chest pain and cough. The biggest change in my life has been the 8-10 hours of sleep I now need. For years I worked and commuted 50-60 hours a week and survived on 5-7 hours sleep a night!I do have to admit that reading the email strings from the last 2 days has me absolutely terrified. The future of the disease is so dismal...and my family will carry the burden of caring for me. It scares the living hell out of me. I'm not married, my boyfriend of 4 years lives with me. He is much younger and I

keep thinking how young he is to have to care for me. My son is 32 and lives close by, but is also on disability. My sister also lives close, but still has 3 kids at home and she works. My doctor put me on disability immediately due to my extreme fatigue and I do feel better now that I'm not forced to drag myself to work. With this all said....I guess I'm just scared, overwhelmed. ...and very worried about the future.Myrlene BrownLa Verne, CA

[Guest guest]

Myrlene I hope you find peace within yourself. You have the Air Family to help

answer questions and find you peace as much as possible. None of us are ever

guaranteed another day but look for your date stamp. I bet you won't find one.

Maybe there is a counselor, friend or paster you could visit with? Just to help

you get your feet back under you and facing forward again.

Remember Brett not only had lung disease, he had cancer and that's like a double

whammy. Cancer is one of the most evil disease on earth. I am a 10 year

survivor and every day is a victory for me.

In spite of the lung disease and all the " et al " stuff that rules my life.

Take care of you.

S, Lubbock, TX

NSIP w/PF 12/2006 et al

>

> I am a 59 year old woman who was diagnosed with IPF in Sep 09 - like 7 weeks

ago. I must admit I think I cried for 6 weeks...... I am coming to terms with

my diagnosis and trying to get " my house in order " . Will, trust, advance

directive etc. I'm in the very beginning of the disease - I don't use O2

everyday. I really only need it when I talk a lot, walk far, climb my back

steps (5), etc. My O2 is only at 2L so I'm lucky - for now. I have

intermittent chest pain and cough. The biggest change in my life has been the

8-10 hours of sleep I now need. For years I worked and commuted 50-60 hours a

week and survived on 5-7 hours sleep a night!

>

> I do have to admit that reading the email strings from the last 2 days has me

absolutely terrified. The future of the disease is so dismal...and my family

will carry the burden of caring for me. It scares the living hell out of me.

I'm not married, my boyfriend of 4 years lives with me. He is much younger and

I keep thinking how young he is to have to care for me. My son is 32 and lives

close by, but is also on disability. My sister also lives close, but still has

3 kids at home and she works. My doctor put me on disability immediately due to

my extreme fatigue and I do feel better now that I'm not forced to drag myself

to work.

>

> With this all said....I guess I'm just scared, overwhelmed....and very worried

about the future.

>

> Myrlene Brown

> La Verne, CA

>

[Guest guest]

Hi Myrlene! As is always said-"Sorry you need us but glad you found us". I understand how you must feel. It wasn't too long ago that I thought "My God, I have adeath sentence" but this will pass I hope and you will understand that what Beth said is so true...you live because you are alive and you have a long time to go....no doctor knows when we will die. Period! Some people die within afew months of diagnosis and others go on for many many years. Have you gone to a center of excellence to get a second opinion?" Believe me when I tell you this is absolutely necessary! Most doctors do not know how to deal with ths disease and can'treally diagnose it well. I for instance was told I had IPF but I went to National Jewish Health and found out I had a misdiagnosis! My pulmonary fibrosis was caused by birdS! I never know what the formal diagnosis is but there is a very different time line with Birds vs. IPF!!! So, if you haven't gone yet I do think you should see aspecialist at the closest place of medical excellence for Pulmonary Fibrosis! I don't know the site we usually send someone too but Beth knows it. this may seem unnecessary but I am telling you, it is very, very important.

And then you have fun! When Mayo told me I had only 2 yrs to live I went out and bought a new car with a 5 year contract! ahahahahah and I have loved it since I bought it and I fully expect to be around when it is fully paid for! And don't hesitate to get counseling if you feel too blue....I see a counselor and most times I bring breakfast and she brings coffee and we chat about all sorts of things...just remember: You are not dead. You are alive. You have a lot of living to do! It is hard to realize that you can't do asmuch as you used too but you can still do many things....I am on 4 lpm of 02 24/7 and this group taught me to stick up for myself and so I got a neat tank thatallows meto be out and about for as long as 8 hours and believe me I am almost never at home! I used to garden , you know dig holes and plant and water and weed whack but alas I can't do that any more so I have a small gatedarea in front of my front door that I can reach with my hose and I tend to that while someone takes care of the grounds....but, I have started to enjoy cooking and have spent much time learning recipes and feeding my friends..so we adapt! Anyway, I wish you well and hope you go to acenter of excellence...and you have a lot of time to have loads of fun! Joyce Rudy birds AZ

I'm new.......and quite scared!

Myrlene,

I and certainly most all of us have experienced the uncertainty and fear you are going through. I do understand and am very sorry to hear of your diagnosis.

If your feelings of sadness go on too long, don't be afraid to get help. If it weren't for antidepressants, I couldn't cope. Some on this board go to counseling, but we all have to deal with this down feeling that comes with this terrible diagnosis. And with time and effort, I can just about promise that you will have some very good days, and they could even be the best days of your life. These past 4 years have been very special for me. I am very close to friends and family, and now that I don't work, I have much more time to spend with them.

Do you use O2 at night? You may be needing more sleep because what you are getting isn't good sleep. It would not be out of the ordinary to find that you fall below 90% saturation during sleep. Ask your doctor about this, and he/she may even want to do a sleep study. Even if O2 isn't necessary for daily life, it is not uncommon that it is prescribed for sleeping with us.

Don't think of yourself as being a burden, and that is so much easier said than done. Your family and friends want to be part of your life; So let them be a part of it, and when they offer to help, let them. It is common knowledge here that unless you have PF, you don't understand, but that doesn't mean that they can't help out. Accept help cheerfully and graciously. Your boy friend would much rather be a contributing part of your life, and I can promise you, he would make that choice freely. You would do the same for him.

And above all, take good care of yourself. What you can do for yourself will mean more for your good health than all our modern medicine can offer. Eat well and exercise. And don't be afraid to use as much oxygen as you need to keep up an active lifestyle. Take a deep breath. You still have some very good days ahead. We are all here for each other.

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

[Guest guest]

Myrlene,

I agree with Jerry and all of the other posts. When I first found out I had IPF my wife and I panicked, cried, thought my life was over immediately, and to the contrary I have enjoyed new friends due to this web site and have had a lifestyle change. Yes it is a nasty disease but there are certainly ways of handling it to turn a negative into a positive. I spend more time with my wife and family and have had time to do some things as my wife calls it "making memories". Granted it is a little inconvenient at times with O2 but I look AK totally disabled people and realize they would change positions with me in a heartbeat. Who knows why we are handed this cross to carry, but again to quote my wife, "a lesser person could not handle it". We do not ask for sympathy but understanding and maybe a little compassion. We on this site "GET IT". Hopefully we can get the word out as they have with "breast cancer". When the rest of the world "GET IT" it will make our lives better. We look normal and OK but we have changed and most people look at us and find it hard to believe we have a "problem".

I read comments daily and find the love, understanding, and compassion here to be phenomenal. Keep the faith and share your feelings here. We "GET IT".

Love, compassion and understanding from , Ga.

J/J

   JOE & JOANIE LAMENSKIE

IPF JAN. 2008

-- I'm new.......and quite scared!

Myrlene,

I and certainly most all of us have experienced the uncertainty and fear you are going through. I do understand and am very sorry to hear of your diagnosis.

If your feelings of sadness go on too long, don't be afraid to get help. If it weren't for antidepressants, I couldn't cope. Some on this board go to counseling, but we all have to deal with this down feeling that comes with this terrible diagnosis. And with time and effort, I can just about promise that you will have some very good days, and they could even be the best days of your life. These past 4 years have been very special for me. I am very close to friends and family, and now that I don't work, I have much more time to spend with them.

Do you use O2 at night? You may be needing more sleep because what you are getting isn't good sleep. It would not be out of the ordinary to find that you fall below 90% saturation during sleep. Ask your doctor about this, and he/she may even want to do a sleep study. Even if O2 isn't necessary for daily life, it is not uncommon that it is prescribed for sleeping with us.

Don't think of yourself as being a burden, and that is so much easier said than done. Your family and friends want to be part of your life; So let them be a part of it, and when they offer to help, let them. It is common knowledge here that unless you have PF, you don't understand, but that doesn't mean that they can't help out. Accept help cheerfully and graciously. Your boy friend would much rather be a contributing part of your life, and I can promise you, he would make that choice freely. You would do the same for him.

And above all, take good care of yourself. What you can do for yourself will mean more for your good health than all our modern medicine can offer. Eat well and exercise. And don't be afraid to use as much oxygen as you need to keep up an active lifestyle. Take a deep breath. You still have some very good days ahead. We are all here for each other.

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

[Guest guest]

Myrlene,

Hello. My name is Miranda. I was diagnosed with IPF in 05. I am so sorry you are going through this. We all deal with the feelings you described. We are here for you to talk to we understand. I notice you live in La Verne. I live live in Duarte, CA. Who is your pulmonologist ? I am seeing Dr. Ratto in Arcadia and going to USC university hospital for my transplant stuff. I am currently on the waiting list for a double lung transplant. I am on 10 ltrs at rest. I cant tell you how important it is for you to go to pulmonary rehab. The one I go to is at the Inter community Hospital in Covina. It is on San Bernardino Rd. I know they take most insurances and also have a scholarship program. Ask your dr. to refer you.

Anyways, Take care of yourself and maybe I will see you there.

Miranda

LA / 29 yrs old

IPF 05

[Guest guest]

Mrianda - Thanks so much for the kind words and the support. I'm so sorry you are going through this at only 29 - makes me realize how lucky I am. I see Dr Kalkat in Glendora. He has referred me to USC, I already met with Dr McFadden. I've just begun the many tests.....I see the gastro dr on Monday for an endoscopy. I'm waiting for 5 referrals for all the other stuff.....I know it's going to be a long road. Eventually, I'll get my mind around it all. thanks again. Myrlene

Subject: Re: I'm new.......and quite scared!To: Breathe-Support Date: Saturday, November 7, 2009, 7:42 AM

Myrlene,

Hello. My name is Miranda. I was diagnosed with IPF in 05. I am so sorry you are going through this. We all deal with the feelings you described. We are here for you to talk to we understand. I notice you live in La Verne. I live live in Duarte, CA. Who is your pulmonologist ? I am seeing Dr. Ratto in Arcadia and going to USC university hospital for my transplant stuff. I am currently on the waiting list for a double lung transplant. I am on 10 ltrs at rest. I cant tell you how important it is for you to go to pulmonary rehab. The one I go to is at the Inter community Hospital in Covina. It is on San Bernardino Rd. I know they take most insurances and also have a scholarship program. Ask your dr. to refer you.

Anyways, Take care of yourself and maybe I will see you there.

Miranda

LA / 29 yrs old

IPF 05

[Guest guest]

Thanks to you all for the support and kind words. It does help.

Myrlene Brown

La Verne CA

IPF Sep 09

Subject: Re: I'm new.......and quite scared!To: Breathe-Support Date: Saturday, November 7, 2009, 3:38 AM

Myrlene,

I agree with Jerry and all of the other posts. When I first found out I had IPF my wife and I panicked, cried, thought my life was over immediately, and to the contrary I have enjoyed new friends due to this web site and have had a lifestyle change. Yes it is a nasty disease but there are certainly ways of handling it to turn a negative into a positive. I spend more time with my wife and family and have had time to do some things as my wife calls it "making memories". Granted it is a little inconvenient at times with O2 but I look AK totally disabled people and realize they would change positions with me in a heartbeat. Who knows why we are handed this cross to carry, but again to quote my wife, "a lesser person could not handle it". We do not ask for sympathy but understanding and maybe a little compassion. We on this site "GET IT". Hopefully we can get the word out as they have with "breast cancer". When

the rest of the world "GET IT" it will make our lives better. We look normal and OK but we have changed and most people look at us and find it hard to believe we have a "problem".

I read comments daily and find the love, understanding, and compassion here to be phenomenal. Keep the faith and share your feelings here. We "GET IT".

Love, compassion and understanding from , Ga.

J/J

   JOE & JOANIE LAMENSKIE

IPF JAN. 2008

-- I'm new.......and quite scared!

Myrlene,

I and certainly most all of us have experienced the uncertainty and fear you are going through. I do understand and am very sorry to hear of your diagnosis.

If your feelings of sadness go on too long, don't be afraid to get help. If it weren't for antidepressants, I couldn't cope. Some on this board go to counseling, but we all have to deal with this down feeling that comes with this terrible diagnosis. And with time and effort, I can just about promise that you will have some very good days, and they could even be the best days of your life. These past 4 years have been very special for me. I am very close to friends and family, and now that I don't work, I have much more time to spend with them.

Do you use O2 at night? You may be needing more sleep because what you are getting isn't good sleep. It would not be out of the ordinary to find that you fall below 90% saturation during sleep. Ask your doctor about this, and he/she may even want to do a sleep study. Even if O2 isn't necessary for daily life, it is not uncommon that it is prescribed for sleeping with us.

Don't think of yourself as being a burden, and that is so much easier said than done. Your family and friends want to be part of your life; So let them be a part of it, and when they offer to help, let them. It is common knowledge here that unless you have PF, you don't understand, but that doesn't mean that they can't help out. Accept help cheerfully and graciously. Your boy friend would much rather be a contributing part of your life, and I can promise you, he would make that choice freely. You would do the same for him.

And above all, take good care of yourself. What you can do for yourself will mean more for your good health than all our modern medicine can offer. Eat well and exercise. And don't be afraid to use as much oxygen as you need to keep up an active lifestyle. Take a deep breath. You still have some very good days ahead. We are all here for each other.

Jerry/Mississippi/ 54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

[Guest guest]



Myrlene...I'll jump in here and say 'ditto' to what Joe writes to you...

I found this board March 6, 2006, the same day I was dx. I went to the internet to find out what in heck is "IPF"? What a way to find it's FATAL!

I made such a gasp reading 'fatal' that my husband, Rich, came running, wondering what was wrong with me...I yelled, "OMG Rich, I'm going to die!" My family and I stayed in a state of shock for many weeks and gradually began to relax and the more I read and wrote the board the stronger I became.

Now, I'm just short of being here 4 years and I've remained fairly stable. I started out with a dx (diagnosis) of IPF and only recently Dr.

Raghu at UWMC in Seattle, changed it to NSIP. Just another strain of PF but it progresses more slowly then some of the other 200 strains of PF.

I just leave it to God as to why who got what or who gets a different dx...one thing I HAVE come to believe is we here are a strong breed and I think we were chosen to blaze a trail for those coming after. You can read the dedication to finding solutions regularly on the board.

The fear will subside Myrlene and you are NOT going to die next month! Our sweet Peggy tells us there is no expiration date on our fannies.

I'll be watching for your posts on the board. Take care and

keep on keepin' on friend!

MamaSher; 71, IPF 3-2006, OR.

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

I'm new.......and quite scared!

Myrlene,

I and certainly most all of us have experienced the uncertainty and fear you are going through. I do understand and am very sorry to hear of your diagnosis.

If your feelings of sadness go on too long, don't be afraid to get help. If it weren't for antidepressants, I couldn't cope. Some on this board go to counseling, but we all have to deal with this down feeling that comes with this terrible diagnosis. And with time and effort, I can just about promise that you will have some very good days, and they could even be the best days of your life. These past 4 years have been very special for me. I am very close to friends and family, and now that I don't work, I have much more time to spend with them.

Do you use O2 at night? You may be needing more sleep because what you are getting isn't good sleep. It would not be out of the ordinary to find that you fall below 90% saturation during sleep. Ask your doctor about this, and he/she may even want to do a sleep study. Even if O2 isn't necessary for daily life, it is not uncommon that it is prescribed for sleeping with us.

Don't think of yourself as being a burden, and that is so much easier said than done. Your family and friends want to be part of your life; So let them be a part of it, and when they offer to help, let them. It is common knowledge here that unless you have PF, you don't understand, but that doesn't mean that they can't help out. Accept help cheerfully and graciously. Your boy friend would much rather be a contributing part of your life, and I can promise you, he would make that choice freely. You would do the same for him.

And above all, take good care of yourself. What you can do for yourself will mean more for your good health than all our modern medicine can offer. Eat well and exercise. And don't be afraid to use as much oxygen as you need to keep up an active lifestyle. Take a deep breath. You still have some very good days ahead. We are all here for each other.

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

[Guest guest]

Don't be frightened. Have faith. You are going through the stages of getting to

acceotance. Life is not over. You are on a new journey. Think about the things

you can do and not the things you can't do. Have faith that your life will

continue on.

Be blessed,

All faith, no fear!

ette 53 Delaware

SLE 99, TTP 99, PF noted 99, MI 01, MS 04, AH/PBC 04, PF & PH 06, Spinal

Stenosis C, T & L 08, Hypersomnia 09, Anemia 09...

>

> Myrlene,

> I agree with Jerry and all of the other posts. When I first found out

> I had IPF my wife and I panicked, cried, thought my life was over

> immediately, and to the contrary I have enjoyed new friends due to this web

> site and have had a lifestyle change. Yes it is a nasty disease but there

> are certainly ways of handling it to turn a negative into a positive. I

> spend more time with my wife and family and have had time to do some things

> as my wife calls it " making memories " . Granted it is a little inconvenient

> at times with O2 but I look AK totally disabled people and realize they

> would change positions with me in a heartbeat. Who knows why we are handed

> this cross to carry, but again to quote my wife, " a lesser person could not

> handle it " . We do not ask for sympathy but understanding and maybe a little

> compassion. We on this site " GET IT " . Hopefully we can get the word out as

> they have with " breast cancer " . When the rest of the world " GET IT " it will

> make our lives better. We look normal and OK but we have changed and most

> people look at us and find it hard to believe we have a " problem " .

> I read comments daily and find the love, understanding, and compassion

> here to be phenomenal. Keep the faith and share your feelings here. We " GET

> IT " .

>

> Love, compassion and understanding from , Ga.

>

> J/J

>   

> JOE & JOANIE LAMENSKIE

> IPF JAN. 2008

>

> -- I'm new.......and quite scared!

>

>

> Myrlene,

> I and certainly most all of us have experienced the uncertainty and fear you

> are going through. I do understand and am very sorry to hear of your

> diagnosis.

>

> If your feelings of sadness go on too long, don't be afraid to get help. If

> it weren't for antidepressants, I couldn't cope. Some on this board go to

> counseling, but we all have to deal with this down feeling that comes with

> this terrible diagnosis. And with time and effort, I can just about promise

> that you will have some very good days, and they could even be the best days

> of your life. These past 4 years have been very special for me. I am very

> close to friends and family, and now that I don't work, I have much more

> time to spend with them.

>

> Do you use O2 at night? You may be needing more sleep because what you are

> getting isn't good sleep. It would not be out of the ordinary to find that

> you fall below 90% saturation during sleep. Ask your doctor about this, and

> he/she may even want to do a sleep study. Even if O2 isn't necessary for

> daily life, it is not uncommon that it is prescribed for sleeping with us.

>

> Don't think of yourself as being a burden, and that is so much easier said

> than done. Your family and friends want to be part of your life; So let them

> be a part of it, and when they offer to help, let them. It is common

> knowledge here that unless you have PF, you don't understand, but that doesn

> t mean that they can't help out. Accept help cheerfully and graciously. Your

> boy friend would much rather be a contributing part of your life, and I can

> promise you, he would make that choice freely. You would do the same for him

>

>

> And above all, take good care of yourself. What you can do for yourself will

> mean more for your good health than all our modern medicine can offer. Eat

> well and exercise. And don't be afraid to use as much oxygen as you need to

> keep up an active lifestyle. Take a deep breath. You still have some very

> good days ahead. We are all here for each other.

>

> Jerry/Mississippi/54/IPF/dx April 05

>

> Who believes that hard times help us appreciate the good times even more.

>

[Guest guest]

Joyce you are so elequentWish I could write that well, about your shower chair , I have one....not too expensive I got mine at a drugstorre, $25.00. It helped a lot,.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Fri, November 6, 2009 7:45:57 PMSubject: Re: I'm new.......and quite scared!

Hi Myrlene! As is always said-"Sorry you need us but glad you found us". I understand how you must feel. It wasn't too long ago that I thought "My God, I have adeath sentence" but this will pass I hope and you will understand that what Beth said is so true...you live because you are alive and you have a long time to go....no doctor knows when we will die. Period! Some people die within afew months of diagnosis and others go on for many many years. Have you gone to a center of excellence to get a second opinion?" Believe me when I tell you this is absolutely necessary! Most doctors do not know how to deal with ths disease and can'treally diagnose it well. I for instance was told I had IPF but I went to National Jewish Health and found out I had a misdiagnosis! My pulmonary fibrosis was caused by birdS! I never know what the formal diagnosis is but there is a very different time line with Birds vs. IPF!!! So, if you haven't gone yet I

do think you should see aspecialist at the closest place of medical excellence for Pulmonary Fibrosis! I don't know the site we usually send someone too but Beth knows it. this may seem unnecessary but I am telling you, it is very, very important.

And then you have fun! When Mayo told me I had only 2 yrs to live I went out and bought a new car with a 5 year contract! ahahahahah and I have loved it since I bought it and I fully expect to be around when it is fully paid for! And don't hesitate to get counseling if you feel too blue....I see a

counselor and most times I bring breakfast and she brings coffee and we chat about all sorts of things...just remember: You are not dead. You are alive. You have a lot of living to do! It is hard to realize that you can't do asmuch as you used too but you can still do many things....I am on 4 lpm of 02 24/7 and this group taught me to stick up for myself and so I got a neat tank thatallows meto be out and about for as long as 8 hours and believe me I am almost never at home! I used to garden , you know dig holes and plant and water and weed whack but alas I can't do that any more so I have a small gatedarea in front of my front door that I can reach with my hose and I tend to that while someone takes care of the grounds....but, I have started to enjoy cooking and have spent much time learning recipes and feeding my friends..so we adapt! Anyway, I wish you well and hope you go to acenter of excellence.. .and you have a lot of

time to have loads of fun! Joyce Rudy birds AZ

I'm new.......and quite scared!

Myrlene,

I and certainly most all of us have experienced the uncertainty and fear you are going through. I do understand and am very sorry to hear of your diagnosis.

If your feelings of sadness go on too long, don't be afraid to get help. If it weren't for antidepressants, I couldn't cope. Some on this board go to counseling, but we all have to deal with this down feeling that comes with this terrible diagnosis. And with time and effort, I can just about promise that you will have some very good days, and they could even be the best days of your life. These past 4 years have been very special for me. I am very close to friends and family, and now that I don't work, I have much more time to spend with them.

Do you use O2 at night? You may be needing more sleep because what you are getting isn't good sleep. It would not be out of the ordinary to find that you fall below 90% saturation during sleep. Ask your doctor about this, and he/she may even want to do a sleep study. Even if O2 isn't necessary for daily life, it is not uncommon that it is prescribed for sleeping with us.

Don't think of yourself as being a burden, and that is so much easier said than done. Your family and friends want to be part of your life; So let them be a part of it, and when they offer to help, let them. It is common knowledge here that unless you have PF, you don't understand, but that doesn't mean that they can't help out. Accept help cheerfully and graciously. Your boy friend would much rather be a contributing part of your life, and I can promise you, he would make that choice freely. You would do the same for him.

And above all, take good care of yourself. What you can do for yourself will mean more for your good health than all our modern medicine can offer. Eat well and exercise. And don't be afraid to use as much oxygen as you need to keep up an active lifestyle. Take a deep breath. You still have some very good days ahead. We are all here for each other.

Jerry/Mississippi/ 54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

[Guest guest]

J/J Love and hugs to you both....you are such an inspiration to me.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Sat, November 7, 2009 6:38:29 AMSubject: Re: I'm new.......and quite scared!

Myrlene,

I agree with Jerry and all of the other posts. When I first found out I had IPF my wife and I panicked, cried, thought my life was over immediately, and to the contrary I have enjoyed new friends due to this web site and have had a lifestyle change. Yes it is a nasty disease but there are certainly ways of handling it to turn a negative into a positive. I spend more time with my wife and family and have had time to do some things as my wife calls it "making memories". Granted it is a little inconvenient at times with O2 but I look AK totally disabled people and realize they would change positions with me in a heartbeat. Who knows why we are handed this cross to carry, but again to quote my wife, "a lesser person could not handle it". We do not ask for sympathy but understanding and maybe a little compassion. We on this site "GET IT". Hopefully we can get the word out as they have with "breast cancer". When

the rest of the world "GET IT" it will make our lives better. We look normal and OK but we have changed and most people look at us and find it hard to believe we have a "problem".

I read comments daily and find the love, understanding, and compassion here to be phenomenal. Keep the faith and share your feelings here. We "GET IT".

Love, compassion and understanding from , Ga.

J/J

   JOE & JOANIE LAMENSKIE

IPF JAN. 2008

-- I'm new.......and quite scared!

Myrlene,

I and certainly most all of us have experienced the uncertainty and fear you are going through. I do understand and am very sorry to hear of your diagnosis.

If your feelings of sadness go on too long, don't be afraid to get help. If it weren't for antidepressants, I couldn't cope. Some on this board go to counseling, but we all have to deal with this down feeling that comes with this terrible diagnosis. And with time and effort, I can just about promise that you will have some very good days, and they could even be the best days of your life. These past 4 years have been very special for me. I am very close to friends and family, and now that I don't work, I have much more time to spend with them.

Do you use O2 at night? You may be needing more sleep because what you are getting isn't good sleep. It would not be out of the ordinary to find that you fall below 90% saturation during sleep. Ask your doctor about this, and he/she may even want to do a sleep study. Even if O2 isn't necessary for daily life, it is not uncommon that it is prescribed for sleeping with us.

Don't think of yourself as being a burden, and that is so much easier said than done. Your family and friends want to be part of your life; So let them be a part of it, and when they offer to help, let them. It is common knowledge here that unless you have PF, you don't understand, but that doesn't mean that they can't help out. Accept help cheerfully and graciously. Your boy friend would much rather be a contributing part of your life, and I can promise you, he would make that choice freely. You would do the same for him.

And above all, take good care of yourself. What you can do for yourself will mean more for your good health than all our modern medicine can offer. Eat well and exercise. And don't be afraid to use as much oxygen as you need to keep up an active lifestyle. Take a deep breath. You still have some very good days ahead. We are all here for each other.

Jerry/Mississippi/ 54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

IncrediMail! Click Here! " src="cid:2.2062734241@..." border=0>

[Guest guest]

ette

where in Delaware are you?

I'm in langhorne PA, a suburb of Philly, we have someone in Philly and someone else in a different suburb of Philly

maybe if you are up to it, we can plan a get together for all of us

you have a lot of alphabet soup after your name, don't know what it all means,

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: I'm new.......and quite scared!To: Breathe-Support Date: Saturday, November 7, 2009, 3:52 PM

Don't be frightened. Have faith. You are going through the stages of getting to acceotance. Life is not over. You are on a new journey. Think about the things you can do and not the things you can't do. Have faith that your life will continue on.Be blessed,All faith, no fear!ette 53 DelawareSLE 99, TTP 99, PF noted 99, MI 01, MS 04, AH/PBC 04, PF & PH 06, Spinal Stenosis C, T & L 08, Hypersomnia 09, Anemia 09...>> Myrlene,> I agree with Jerry and all of the other posts. When I first found out > I had IPF my wife and I panicked, cried, thought my life was over> immediately, and to the contrary I have

enjoyed new friends due to this web> site and have had a lifestyle change. Yes it is a nasty disease but there> are certainly ways of handling it to turn a negative into a positive. I> spend more time with my wife and family and have had time to do some things> as my wife calls it "making memories". Granted it is a little inconvenient> at times with O2 but I look AK totally disabled people and realize they> would change positions with me in a heartbeat. Who knows why we are handed> this cross to carry, but again to quote my wife, "a lesser person could not> handle it". We do not ask for sympathy but understanding and maybe a little> compassion. We on this site "GET IT". Hopefully we can get the word out as> they have with "breast cancer". When the rest of the world "GET IT" it will> make our lives better. We look normal and OK but we have changed and most> people look at

us and find it hard to believe we have a "problem".> I read comments daily and find the love, understanding, and compassion> here to be phenomenal. Keep the faith and share your feelings here. We "GET> IT".> > Love, compassion and understanding from , Ga.> > J/J>    > JOE & JOANIE LAMENSKIE> IPF JAN. 2008> > -- I'm new.......and quite scared!> > > Myrlene,> I and certainly most all of us have experienced the uncertainty and fear you> are going through. I do

understand and am very sorry to hear of your> diagnosis. > > If your feelings of sadness go on too long, don't be afraid to get help. If> it weren't for antidepressants, I couldn't cope. Some on this board go to> counseling, but we all have to deal with this down feeling that comes with> this terrible diagnosis. And with time and effort, I can just about promise> that you will have some very good days, and they could even be the best days> of your life. These past 4 years have been very special for me. I am very> close to friends and family, and now that I don't work, I have much more> time to spend with them. > > Do you use O2 at night? You may be needing more sleep because what you are> getting isn't good sleep. It would not be out of the ordinary to find that> you fall below 90% saturation during sleep. Ask your doctor about this, and> he/she may

even want to do a sleep study. Even if O2 isn't necessary for> daily life, it is not uncommon that it is prescribed for sleeping with us.> > Don't think of yourself as being a burden, and that is so much easier said> than done. Your family and friends want to be part of your life; So let them> be a part of it, and when they offer to help, let them. It is common> knowledge here that unless you have PF, you don't understand, but that doesn> t mean that they can't help out. Accept help cheerfully and graciously. Your> boy friend would much rather be a contributing part of your life, and I can> promise you, he would make that choice freely. You would do the same for him> > > And above all, take good care of yourself. What you can do for yourself will> mean more for your good health than all our modern medicine can offer. Eat> well and exercise. And don't be

afraid to use as much oxygen as you need to> keep up an active lifestyle. Take a deep breath. You still have some very> good days ahead. We are all here for each other.> > Jerry/Mississippi/ 54/IPF/dx April 05> > Who believes that hard times help us appreciate the good times even more.>

[Guest guest]

Hi Myrlene,

Welcome to the group! I’m sorry you too suffer from this dreadful disease, but you will find a wealth of information, support, encouragement, love and humor from the members here. This group has given me a sense of comfort to know that I don’t have to stumble down this unfamiliar path alone. When I come to a crossroad I have a place to turn to. You now have friends who care and understand.

I was diagnosed in May of this year and went through the stage you're at now...extreme fear I live alone, my kids are 29, 23, & 20. My oldest daughter lives in California and my 23 yr old son is in his senior year at Central Washington University, my 20 year old daughter is attending the local community college and lives near me, so she gets to be my care-taker. I just filed for disability from work. My next step is selling my house and moving closer to town where my daughter and I can get a place together. Two years ago I bought a house in the country on one acre. I had plans for the second-half of my life and now that has changed dramatically. I'm learning to accept (slowly) and make new plans, but it's not easy and I have grieved each loss along the way.

It takes time, but you'll be okay too and now you have new friends! C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Fri, November 6, 2009 9:45:56 AMSubject: I'm new.......and quite scared!

I am a 59 year old woman who was diagnosed with IPF in Sep 09 - like 7 weeks ago. I must admit I think I cried for 6 weeks...... I am coming to terms with my diagnosis and trying to get "my house in order". Will, trust, advance directive etc. I'm in the very beginning of the disease - I don't use O2 everyday. I really only need it when I talk a lot, walk far, climb my back steps (5), etc. My O2 is only at 2L so I'm lucky - for now. I have intermittent chest pain and cough. The biggest change in my life has been the 8-10 hours of sleep I now need. For years I worked and commuted 50-60 hours a week and survived on 5-7 hours sleep a night!I do have to admit that reading the email strings from the last 2 days has me absolutely terrified. The future of the disease is so dismal...and my family will carry the burden of caring for me. It scares the living hell out of me. I'm not married, my boyfriend of 4 years lives with me. He is much younger and I

keep thinking how young he is to have to care for me. My son is 32 and lives close by, but is also on disability. My sister also lives close, but still has 3 kids at home and she works. My doctor put me on disability immediately due to my extreme fatigue and I do feel better now that I'm not forced to drag myself to work. With this all said....I guess I'm just scared, overwhelmed. ...and very worried about the future.Myrlene BrownLa Verne, CA

[Guest guest]

For our boook, this a fine example of our posts that clearly demonstrates the terror of learning of your IPF diagnosis while at the same time it gives a wonderful demonstration of how we comfort, support and educate newbies on how to live with IPF. Thank you, . Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Sun, November 22, 2009 3:48:10 PMSubject: Re: I'm new.......and quite scared!

Hi Myrlene,

Welcome to the group! I’m sorry you too suffer from this dreadful disease, but you will find a wealth of information, support, encouragement, love and humor from the members here. This group has given me a sense of comfort to know that I don’t have to stumble down this unfamiliar path alone. When I come to a crossroad I have a place to turn to. You now have friends who care and understand.

I was diagnosed in May of this year and went through the stage you're at now...extreme fear I live alone, my kids are 29, 23, & 20. My oldest daughter lives in California and my 23 yr old son is in his senior year at Central Washington University, my 20 year old daughter is attending the local community college and lives near me, so she gets to be my care-taker. I just filed for disability from work. My next step is selling my house and moving closer to town where my daughter and I can get a place together. Two years ago I bought a house in the country on one acre. I had plans for the second-half of my life and now that has changed dramatically. I'm learning to accept (slowly) and make new plans, but it's not easy and I have grieved each loss along the way.

It takes time, but you'll be okay too and now you have new friends! C_53_Familial IPF_5/09Washington

From: Myrlene <myrleneb (AT) yahoo (DOT) .com>To: Breathe-Support@ yahoogroups. comSent: Fri, November 6, 2009 9:45:56 AMSubject: I'm new.......and quite scared!

I am a 59 year old woman who was diagnosed with IPF in Sep 09 - like 7 weeks ago. I must admit I think I cried for 6 weeks...... I am coming to terms with my diagnosis and trying to get "my house in order". Will, trust, advance directive etc. I'm in the very beginning of the disease - I don't use O2 everyday. I really only need it when I talk a lot, walk far, climb my back steps (5), etc. My O2 is only at 2L so I'm lucky - for now. I have intermittent chest pain and cough. The biggest change in my life has been the 8-10 hours of sleep I now need. For years I worked and commuted 50-60 hours a week and survived on 5-7 hours sleep a night!I do have to admit that reading the email strings from the last 2 days has me absolutely terrified. The future of the disease is so dismal...and my family will carry the burden of caring for me. It scares the living hell out of me. I'm not married, my boyfriend of 4 years lives with me. He is much younger and I

keep thinking how young he is to have to care for me. My son is 32 and lives close by, but is also on disability. My sister also lives close, but still has 3 kids at home and she works. My doctor put me on disability immediately due to my extreme fatigue and I do feel better now that I'm not forced to drag myself to work. With this all said....I guess I'm just scared, overwhelmed. ...and very worried about the future.Myrlene BrownLa Verne, CA