Re: More advice Peggy, Beth

[Guest guest]

Beth,

We are all adults here. I am sure no one is going to go running and try something without consulting their Doctor first.

I am talking about nutrition here. I do not take anything. Eating the right food, drink good tea, My doctor recommended the Emergen-C if not I would not take that either. I am doing as my doctor says. not all Doctor's think alike. As a matter of fact the rhemmatologist I saw suffered something like me. Had five surgeries because of it. My supplements are in my foods. Except for what I mentioned. Which is organic. Hospitals are beginning to use GSE for many things. This is about the science of immuno-toxicology. Not those supplements sold at local pharmacies, Big name grocers, or any like that. Like you said your Doctor said to eat right. It is more than eating vegetables and fruits, it is about eating the right ones for your particular situation. The colors in fruits and vegetables change depending on what they provide. It is an

individual decision what you eat that is how to supplement your diet.

Rooibos is a tea like Green tea is a tea. it is not a created supplement. That's why our bodies are so poor, all this artificial stuff over the last 50 years. have you seen the Immune Website?

There is a story in there called " Diseases Like Mine Are a Growing Hazard". The Autoimmune Epidemic.

http://www.aarda.org/blog/index.php

For example, I have to have a glass (not Plastic) needle not plastic, bottle of Vit C before any anesthesia or procedure, It helps my body fight the chemical reaction I can get from it. (Hope I never get their) my last hospitalization led me here. Also the anesthesia is limited to only certain ones, even then I could still have a serious problem. That is how seriously impaired my immune system is. I can have an anaphalactic reaction to almost anything. I know how serious immune problems can be. I am The New People In The Bubble. Do you remember the movie Bubble Boy? That is us.

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