Re: Caution re: immune boosting

[Guest guest]

,

It is indeed a giant puzzle and it's made more complex by the fact that there are over 200 different forms of pulmonary fibrosis. All of us also react differently to the various meds that are used and have various tolerences for exercise, stress etc etc. The very best thing you can do is exactly what you are doing, educating yourself. Read, talk to people, ask questions, get second and third opinions and then use your common sense and decide what's best for you.

For me, it means I eat really well, exercise 5 or 6 days a week, rest when I need to and avoid infection and stress like the plague. Personally I think years and years of stress are what got me here. So I concentrate on keeping my life peaceful and minimizing drama. It's not easy and it's not even always possible but I'm making the effort for myself.

Leanne said something to me the other day about making a conscious effort to bring some joy into my life every single day. I think it's a great suggestion. None of us know how long we're going to be here, I want to be happy while I'm here and I want people to remember me as happy. It's a process. No one gets there overnight. Just keep putting one foot in front of the other, breathe as deeply as your lungs will allow and keep movin. Just like that Jimmy Buffet song...'don't try to explain it, just bow your head. Breathe in, breathe out, move on.'

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: More advice to the new folks...and Welcome!

Thanks so much, Babs!!! You have given me much needed information and inspiration. What was your original treatment plan? I am on prednisone only and see rheumatologist Friday after a month. Pulmo visit comes June 17th. The first guy moved practices within two weeks of me seeing him (never said PB, just scarring) cancelled all appts, and didn't even mention what to do next. So, I'm wondering what these long-time survivors with autoimmume diseases do that has seemed to help, knowing of course that everyone's system unique.

Thanks!!!

Barbara <babsyphrett@ yahoo.com> wrote:

Hi Y'all! My name is Babs, and I live in Driftwood, Texas. I wasdiagnosed with PF due to lupus/scleroderma in November of 1999. Yes,you read that correctly. I've lived with the knowledge of this diseasefor nearly 9 years now, and we don't know for certain when it actuallybegan. It is quite possible I've lived with it for 10 or 11 years..I just want to say Welcome! to this wonderful board, and offer yousome advice (adding on to what others have said) and to let you knowthat I keep each and every one of you in my prayers.When you're first diagnosed it is typical to panic, and to startthinking that you have no time left. Even if you have IPF this is notthe case. DO NOT immediately begin making plans to sell the house,move to a facility or to family, get rid of pets or any other rashdecision. Take time to evaluate your needs now and what may benecessary in the future. When I was first diagnosed my

hubby and Ipanicked because we were told I only had 2 to 4 years. We sold ourbeautiful lake front property so we could travel while I was stillable...and now I don't want to travel as much and would LOVE to havemy property to retire to or go fishing,etc.Make germs your enemy. Buy Purell or your favorite type of handdisinfectant. Use lysol wipes around your house. Buy masks to wear ifyou're going to be around children or even at the doctor or hospital.This is all especially true if you're on cytoxan or imuran or anyimmunosuppressant.Create new hobbies. It's the old adage that when one door closesanother one opens. USE your oxygen!!! It is important for your other organs and for yourenergy.Don't be afraid to seek counseling, cry on a friends shoulder or talkto your pastor/clergyman. This IS a horrid disease and it changes yourlife and that of your family, so it is OK to seek help.Keep

hanging around this board. What a great bunch of folks that livehere. Remember that we're all in this together and we CARE!Laugh. And keep laughing. It really is the best medicine!Hugs to you all, Babs in Driftwood, TexasAge 47 DX with PF due to lupus/scleroderma/ rheumatoid arthritisNovember of 1999

[Guest guest]

Not sure where I read this, but recently saw where doctors might be

thinking that auto-immune diseases aren't caused by an over-active

immune system, but an under-active immune system. In which case, we

would need our immunity boosted...right?

Remember when coffee was bad for you and now it's not? When eggs were

bad for you and now they're not? Or a bunch of other things the

scientists said were bad for us but now help fight cancer, like

chocolate???

Man, they confuse me. I wish I could remember where I read that

article. Not that I think someone on prednisone should overdo with the

immune boosting....talk to your Doc on that one!

We should all be eating healthy foods that give us natural immune

boosters though. Lots of fruits and vegetables.

Also y'all, remember to rest and try to minimize the stress in your

life, which I know is sometimes easier said than done. Living with my

hubby is very stressful (the Chazmanian Devil) and I have to find ways

to lower my stress. I read a lot, I play with my dogs, I putter in my

container garden, and I sort jewelry.

AND (I know, I know...give me a sec here and I'll finish) remember to

LAUGH! My family is always telling me to quit laughing because of

course I start coughing, but as Charlie Chaplin once said " A day

without laughter is a day wasted " . Laughing boosts our immune systems

and relieves stress. Rent a funny movie, go to Readersdigest.com and

read the jokes, whatever it takes to have a good laugh.

My 2 cents for the day....

Hugs y'all!

Babs in Texas

Age 47 DX with PF due to lupus/scleroderma/rheumatoid arthritis in

November of 1999

> Hi Y'all! My name is Babs, and I live in Driftwood, Texas. I was

> diagnosed with PF due to lupus/scleroderma in November of 1999. Yes,

> you read that correctly. I've lived with the knowledge of this disease

> for nearly 9 years now, and we don't know for certain when it actually

> began. It is quite possible I've lived with it for 10 or 11 years..

> I just want to say Welcome! to this wonderful board, and offer you

> some advice (adding on to what others have said) and to let you know

> that I keep each and every one of you in my prayers.

> When you're first diagnosed it is typical to panic, and to start

> thinking that you have no time left. Even if you have IPF this is not

> the case. DO NOT immediately begin making plans to sell the house,

> move to a facility or to family, get rid of pets or any other rash

> decision. Take time to evaluate your needs now and what may be

> necessary in the future. When I was first diagnosed my hubby and I

> panicked because we were told I only had 2 to 4 years. We sold our

> beautiful lake front property so we could travel while I was still

> able...and now I don't want to travel as much and would LOVE to have

> my property to retire to or go fishing,etc.

> Make germs your enemy. Buy Purell or your favorite type of hand

> disinfectant. Use lysol wipes around your house. Buy masks to wear if

> you're going to be around children or even at the doctor or hospital.

> This is all especially true if you're on cytoxan or imuran or any

> immunosuppressant.

> Create new hobbies. It's the old adage that when one door closes

> another one opens.

> USE your oxygen!!! It is important for your other organs and for your

> energy.

> Don't be afraid to seek counseling, cry on a friends shoulder or talk

> to your pastor/clergyman. This IS a horrid disease and it changes your

> life and that of your family, so it is OK to seek help.

> Keep hanging around this board. What a great bunch of folks that live

> here. Remember that we're all in this together and we CARE!

> Laugh. And keep laughing. It really is the best medicine!

> Hugs to you all,

> Babs in Driftwood, Texas

> Age 47 DX with PF due to lupus/scleroderma/ rheumatoid arthritis

> November of 1999

>

>

>

>

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>

[Guest guest]

Babs,

I agree this is all very confusing and much of the information out there is contradictory. I can only go by what I've been told by various doctors and that is for me with an undifferentiated connective tissue disease (probably dermatomyositis) boosting my immune system with supplements or teas is a bad idea.

Eating well however, lots of fresh healthy fruits and vegetables, high quality protein etc etc is a very good thing. And anyone on immunosuppressants like Prednisone or Immuran should definitely not be "boosting" their immune system.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Caution re: immune boosting

Not sure where I read this, but recently saw where doctors might bethinking that auto-immune diseases aren't caused by an over-activeimmune system, but an under-active immune system. In which case, wewould need our immunity boosted...right?Remember when coffee was bad for you and now it's not? When eggs werebad for you and now they're not? Or a bunch of other things thescientists said were bad for us but now help fight cancer, likechocolate???Man, they confuse me. I wish I could remember where I read thatarticle. Not that I think someone on prednisone should overdo with theimmune boosting.... talk to your Doc on that one!We should all be eating healthy foods that give us natural immuneboosters though. Lots of fruits and vegetables.Also y'all, remember to rest and try to minimize the stress in yourlife, which I know is sometimes easier said than done. Living with myhubby is very stressful (the

Chazmanian Devil) and I have to find waysto lower my stress. I read a lot, I play with my dogs, I putter in mycontainer garden, and I sort jewelry. AND (I know, I know...give me a sec here and I'll finish) remember toLAUGH! My family is always telling me to quit laughing because ofcourse I start coughing, but as Charlie Chaplin once said "A daywithout laughter is a day wasted". Laughing boosts our immune systemsand relieves stress. Rent a funny movie, go to Readersdigest. com andread the jokes, whatever it takes to have a good laugh.My 2 cents for the day.... :)Hugs y'all!Babs in TexasAge 47 DX with PF due to lupus/scleroderma/ rheumatoid arthritis inNovember of 1999> Hi Y'all! My name is Babs, and I live in Driftwood, Texas. I was> diagnosed with PF due to lupus/scleroderma in November of 1999. Yes,> you read that correctly. I've lived with the knowledge of this disease> for nearly 9 years now, and we don't know for certain when it actually> began. It is quite possible I've lived with it for 10 or 11 years..> I just want to say Welcome! to this wonderful board, and offer you> some advice (adding on to what

others have said) and to let you know> that I keep each and every one of you in my prayers.> When you're first diagnosed it is typical to panic, and to start> thinking that you have no time left. Even if you have IPF this is not> the case. DO NOT immediately begin making plans to sell the house,> move to a facility or to family, get rid of pets or any other rash> decision. Take time to evaluate your needs now and what may be> necessary in the future. When I was first diagnosed my hubby and I> panicked because we were told I only had 2 to 4 years. We sold our> beautiful lake front property so we could travel while I was still> able...and now I don't want to travel as much and would LOVE to have> my property to retire to or go fishing,etc.> Make germs your enemy. Buy Purell or your favorite type of hand> disinfectant. Use lysol wipes around your house. Buy masks to

wear if> you're going to be around children or even at the doctor or hospital.> This is all especially true if you're on cytoxan or imuran or any> immunosuppressant.> Create new hobbies. It's the old adage that when one door closes> another one opens. > USE your oxygen!!! It is important for your other organs and for your> energy.> Don't be afraid to seek counseling, cry on a friends shoulder or talk> to your pastor/clergyman. This IS a horrid disease and it changes your> life and that of your family, so it is OK to seek help.> Keep hanging around this board. What a great bunch of folks that live> here. Remember that we're all in this together and we CARE!> Laugh. And keep laughing. It really is the best medicine!> Hugs to you all, > Babs in Driftwood, Texas> Age 47 DX with PF due to lupus/scleroderma/ rheumatoid arthritis> November of

1999> > > > > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive >