Guest guest Posted May 21, 2008 Report Share Posted May 21, 2008 Which of your Dr told you that?? What area does he specialize in ? 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2008 Report Share Posted May 21, 2008 Mayleen, I know you were asking Peggy, not me but I've gotten the same information from 3 different specialists in interstitial lung disease and a rheumatologist. I was told not to try to stimulate my immune system with supplements of any kind. I was told I should concentrate on excellent nutrition and minimizing stress. I do take a chewable multivitamin every day and that's it. 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2008 Report Share Posted May 21, 2008 I have had numberous doctors over the years and not one would allow supplements. They are not FDA approved and even if they did have the actual ingredients that are listed on the label, it may not be the correct supplement for any of us. My new pulmo from Duke is the first lung doc that told me that it was o.k. to take NAC. Then, he specified the company that he felt was most trustworthy. They had been in business over 100 years. Many of us have overactive immune systems that do not need stimulation. One size fits all......? We need to be smart, don't let the scam artists make thier fortunes by hawking worthless products to the sick and dying.....and we need to always ask our doctors. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> 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> Quote Link to comment Share on other sites More sharing options...
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