Re: More advice Peggy/ Mayleen

[Guest guest]

Mayleen, My Dr. Is the Professor Pulmonary Department at Shands Teaching Hospital at the University of Florida. Fibrosis was explained very clearly, that is how it takes place. The reason for it is not known. "I"pf."Our lungs have had a problem and damage our immune system tries to heal it. Well it doesn't quit and there fore the scaring ie: fibrosis."  Peggy, ipf 6/04 Florida  ♡Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. Which of your Dr told you that??  What area does he specialize in ?  dragonflymcsMayleen 02/07  ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18                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]

I understand that part. i just do not understand why you cannot boost naturally. Not with Vit from the store or a tea from some commercial. He does tell you to eat right doesn't he. That is what I am talking about when I say boost. No phoney stuff.. I do not do that. I went to Cleavland Clinic. However, I want Mayo, because of my left arm.(other thing). I wasn't questioning his integrity, I hope I wasn't misunderstood. However Lou just posted an article about a new trial medication. I have not completed the article but here is a piece of it.

This is what I speak of, see their are foods that are anti-inflammatory, antioxidants. If you knew which veggies were best for you or fruit, would you eat it? That is supplementing.

From The Article: Dr. Ogura said the drug is an anti-inflammatory and an anti-oxidant, but that its key mechanism of action in IPF is anti-fibrotic.

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

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