Guest guest Posted May 21, 2008 Report Share Posted May 21, 2008 Two thumbs up.........................way up !!!!!!!!!!! Do not let it destroy who you are inside !! You are bigger than the monster !!!! God Bless !!!!!!!! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18 Re: More advice to the new folks...and Welcome! Babs...and all newbies, Babs diagnosed in 99, Jane in 98, myself in 97......there are others with long survival rates. Saying this to agree with Babs. Don't dispair too soon. Never give up. Continue to seek better care. I have seen 5 different pulmonologists. Like Babs, I have multiple health issues. But, my spirit is about living, not dying. Make the best of these days that the Lord has allowed you and enjoy living. You can't change your diagnosis, but you can change your own attitude and make your life a happy productive one. 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...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Joyce, I have no immune system. I could not take any of those silly suppplements. i never fell for those when I was healthy, not falling for it now either. I take real food to supplement. Oh My I cannot believe everyone has misinterpreted that. Ohhhh Myyyy !!! Food is supplemental. The right foods. There are alot of things that are not regulated that people use. for example cosmetics. Not regulated. I only eat real food. I only eat organic USDA the highest standard in organic. I eat nothing artificial if I did I could die. No it is not that kind of supplements. God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18 Re: More advice Peggy 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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