Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Another thing in common, I'm on Cellcept too. Couldn't handle the Azthirpone (sp.) because of my liver. Hope I do as well as you are. Dee Re: Profile Dee, You are ME! When I was finally diagnosed with PF, I was 53. Nearly dead! The docs had done x-rays, ct scans, .... the works. But misdiagnosed it. When I finally drug myself to the doc I have now, he ordered biopsy. It was horrendous, but saved my life. My new lung doc, then, referred me to a new rheumatologist. He and the pulmo worked together and got the PF and Lupus (mixed connective tissue disease, which sounds like your diagnosis, too) under some control. In so doing, the disease process slowed. I had taken Methotrexate before that time and Imuran. I could not tolerate high doses of Imuran (liver/bloodwork abnormality) so the rheumy started me on Cellcept in 1998. It has stalled the autoimmune process and allowed me to live a little longer. I am now in end stage, but the doc said that did not mean it is The End! Like you and everyone with diseases like Lupus, I have So.....I get up every day...do everything that I can....then at night I count that day a VICTORY! I am not totally brave. I shake in my boots like everyone here does. Need a lot of help with that and the wonderful people here provide that. I see such courage from this board. I, too, have the same response to people saying casually, "so, how are you"? I just say, "good".....they look relieved! So, to have you guys to talk to is keeping me sane. You all GET IT! You are me, I am you! Glad you told us a little about yourself. Helps me to know you better. Maybe you could post a photo on the photo page. Hugs, Joyce PF 1997 Bronchiectasis 2004 Indiana >> Hi Beth, Donna, Lynn A., Carolyn, Peggy, Gretel from Dee> > Thanks for the advise, I will follow it.> > Here's a little about me. I am 64 yrs old, married for 42 yrs. live in a 55 + retirement community in Southern Calif., native CA. I have breathed hard as far back as I can remember, been diagnosed with RA, fibromaylaga, pulmonary fibrosis (July of 2006), enlarged right side of heart, mitral valve leakage, lupus, bronchitis, have had kidney stones (surgery to remove them), gall bladder, ulcers, divaticolotis,(sp.), diabetic thanks to the steroids, been on Prednisone 4 yrs. straight. hospitalized twice last year for pneumonia. Other than that I'm in pretty good health. Yeah right. Got to keep a positive attitude otherwise this stuff will get you down and I'm not ready for that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 My name is Barbara R, I am 62 and I have been living in MS since 2000 and have come to like it here. I have 4 children, a son Russ 44, 3 daughters Judith 42, Joy 41, 35 and I have 6 grand children, 3 grandsons Jordan 17, Joshuwa 13 and Jay 2 and I have 3 granddaughters Heaven Leigh 16, DeAndra 13,and Jonna 13 (not twins). I also have 4 children-in-love. I am blessed with a wonderful husband of 25 years who takes good care of me most of the time but who still refuses to talk to me about this disease and the fact that I am in the end stages of the disease and will proberly not make it through 2007. I do know that I will be here as long as God wants me to be here and not one minute longer. I am a Southern Baptist but I do believe in dancing and enjoying life as long as God and Jesus are still honored by what is being done. Until I got sick with the monster I was in the food service business for over 30 years and before that I was in office management. When I was diagnosed I had been working at the best job I have ever had because I got to travel all over the south and the north east as a cook on a tow boat. I was gone from home for 30 to 60 days at a time but my husband got use to my being gone and we did a lot of traveling when I was home. He is a retired teacher and is also retired from Wal-Mart Distribution. He does a good job at taking care of me and he does all of the laundry and the house cleaning. He just has his head buried when it comes to the finality of this disease. I have a little Shih Tzu named Professor Albert Einstein because he looks like a professor. He is the boss of the family believe me. I enjoy reading and I read a lot since I can't do much else. I paint when I am able and still have to finish my oldest daughters Christmas gift because I gave out of steam before I could finish painting my angle. I will get it finished before her birthday in April I hope. I still like to travel but right now I just am not able to travel like I did. I like Christian Music and some of the oldies. I get out of the house for about an hour each day when I feel up to it and I pick one of my grand daughters up from school and take her home. I don't have a favorite movie because I don't like to watch movies for some reason. My husband says I can't sit still long enough to watch one. I have always been a very hyper person and it is driving me crazy that I can not be that person any more except in my mind which is never still. I forgot to tell you that my husbands name is . Ron for short. Well enough is enough so I am off of here. Hugs and Prayers! Barbara R IPF 1/2003 Quote Link to comment Share on other sites More sharing options...
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