Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 I associate with you. That's why I remember your thyroid. I bet what you swallowed was the same I-131 I took. I just took it 3 different times. I can never have radiation again I had so much, unless it is a definite life or death decision. I've seen in a couple of places that radiation is a possible trigger for the NSIP. But it's non specific. LOL Oh come on. LOL Anything specific? Not so much. I'm still on the Prednisone although I am weaning down on it. I have decided it is simply a quality of life issue. I am not going to take steroids for the rest of my life. After getting past the thyroid cancer I started losing weight. I had lost from almost a 24 down to a 16, which isn't skinny by any stretch but I sure thought it was. Then this happened and I've been on Prednisone since 12/2006. A lot of it. I am happy in my fluffiness now and am obviously not a 16 anymore but I am terrified of the 24 happening again. I am tired of being tired and paranoid and bitchy and not feeling like me. And the steroids have caused me to be type 2 insulin- and medication- dependant diabetic. I want off all that stuff and can't do that on the Pred. Maybe. OH! And my teeth have started deteriorating. One broke on a kernel of rice Sunday night. More fun stuff. I see my dentist in the morning. I work all week and rest all day Saturday so I can go to church on Sunday and get ready to do it all again on Monday. I use my O2 if I feel even slightly SOB. Now that we know my heart is a little enlarged I am even more careful. I learned to say NO I cannot do that. Boy that was hard. I learned about Tussinex in March when I had bronchitis. That's the GOOD STUFF. My doc says I cannot feel my lungs because there are no pain receptors in there. He is wrong. I can feel what is going on. I pay close attention and if I even suspect something is going on I call and get a steroid blast & some sort of antibiotic. And I keep a bag packed for the Big House so I don't have to think about it. We are doing a CT scan again in June to check the fibrosis to compare to 12/2006 scans. I have had 2 flare-ups since my DX. My pulmo still thinks there may be lupus but I do not have RA. I currently have 4 different auto-immune diseases so there is some reason my body is mad at itself. I had 1 positive test & 1 negative test for lupus. We'll see how that plays out. The pulmo had mentioned he may want to run a course of cytoxan. But we'll see. I'm sorry to be so wordy tonight. I just got on a roll. Besides, I like talking to you. You are way cool. Hope tomorrow is a good day for you. S > > > > Hi Jane...I saw my pulmonologist today and she changed my Dx to > NSIP from IPF. > > I've been fairly stable since '06 when I was first Dx and she says > IPF just doesn't act like this. She said she did not think a lung bio > would be of any great benefit right now...and we discussed trying > Imuran...deciding not to. We will just watch and see what happens as > this year goes by. > > She also explained the reason I'm SOB is because I have a lung > disease! > > She also told me that if my SATS are not below 88-89 I don't need > to use the O2. I think it helps tho' when I am SOB..... > > Now I'll have to learn a little more about NSIP specifically. I > know it's a strain of pulmonary fibrosis......... > > Thanks for asking Jane! > > > > Mama-Sher, age 69. IPF 3-06, OR. > > Don't fret about tomorrow, God is already there! > > > > Mama-Sher > > > > > > > > Mama-Sher, > > > > How are you doing? > > > > Toodles! > > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 S. ....Radiation: isn't x-ray radiation? I never thought of it until now. When I swallowed that gunk I was told not to attempt to fly for 72 hrs. I was "so radiated" that I could bring down a plane! haahahaa.Funny then but makes me wonder now. I also lived at Camp Hanford WA where they manf'ed Plutonium. In 1955,56. I can't help but wonder about that radiation too. Then no one thought twice about that junk blowing in the wind. Why did you take it 3 X? I know. The side effects of what you take is almost worse than the cause isn't it! I'm not on any of that stuff and I still feel tired and bitchy and not like me. I think our bodies use up way more energy then we think just fighting our disease/s. Good for you to say 'no' . It's not being mean or uncaring....it simply means, 'no, I can't do that right now'.Saying no to babysitting was the biggie. I really like doing it but it's just to tiring now. The business of little ones absolutely wears me out.... My recent labs show I have NO immune disease. Another Whoopee! Lupus seems to run in my maternal side of family so I have been concerned but guess I'll stop worrying over nothing now. I think you are way cool too dude! hahahaa. My granddaughter called me a 'dude' and I said, "Isn't a dude for boys only?" She said, "Not if you're cool gramma!" Kids. I don't think you're wordy....you can always email me at bofus@... if you want. Please feel gooder this evening. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Mama-Sher> > > > > > > > Mama-Sher,> > > > How are you doing?> > > > Toodles!> > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 Sher, Want to hear a funny? About 10 years ago Don was taking a load of scrap iron to the iron junk yard. and they tested the whole truck for something with radiation. It came across as having radiation. Don said "There is nothing here that has radiation". They wanded the whole load of junk iron ------ nothing. So a bell went off in Don's head---- He told them to wand him. He had had some kind of a test and had to drink the stuff and he was the one that was full of radiation. Since he wasn't staying, they let him dump the iron. Isn't that funny? Think I'll ever get through all the emails? I still have 200 to go. I think I like emailing from my email, but it sure is work. K IllinoisSher Bauman wrote: S. ....Radiation: isn't x-ray radiation? I never thought of it until now. When I swallowed that gunk I was told not to attempt to fly for 72 hrs. I was "so radiated" that I could bring down a plane! haahahaa.Funny then but makes me wonder now. I also lived at Camp Hanford WA where they manf'ed Plutonium. In 1955,56. I can't help but wonder about that radiation too. Then no one thought twice about that junk blowing in the wind. Why did you take it 3 X? I know. The side effects of what you take is almost worse than the cause isn't it! I'm not on any of that stuff and I still feel tired and bitchy and not like me. I think our bodies use up way more energy then we think just fighting our disease/s. Good for you to say 'no' . It's not being mean or uncaring....it simply means, 'no, I can't do that right now'.Saying no to babysitting was the biggie. I really like doing it but it's just to tiring now. The business of little ones absolutely wears me out.... My recent labs show I have NO immune disease. Another Whoopee! Lupus seems to run in my maternal side of family so I have been concerned but guess I'll stop worrying over nothing now. I think you are way cool too dude! hahahaa. My granddaughter called me a 'dude' and I said, "Isn't a dude for boys only?" She said, "Not if you're cool gramma!" Kids. I don't think you're wordy....you can always email me at bofuswbcable (DOT) net if you want. Please feel gooder this evening. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Mama-Sher> > > > > > > > Mama-Sher,> > > > How are you doing?> > > > Toodles!> > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 K... that junk we swallow must really be powerful!! I've always wondered what it did to the "rest" of me... Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Mama-Sher> > > > > > > > Mama-Sher,> > > > How are you doing?> > > > Toodles!> > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 Well OK. I took the I-131 3 times because supposedly if the thyroid takes up the radiation like it's supposed to and all the cells die the cancer is dead. Well I went back 1 1/2 yrs later to recheck for cell growth and of course they found more that lit up so it had to die as well. That was X2. Well then about anther year 1/2 later we had to repeat the testing and they thought they saw cell growth in the lymph glands on my right neck. We can't have THAT so that was #3. It was enough that I was told I cannot donate my organs or give blood again ever - who would want anything removed from me now anyway??? It was almost enough to begin destroying the bone marrow. It's why I take so much calcium. I still think the thyroid cancer and radiation will be what gets me in the end. That's what happens with thyroid cancer. Look up Crenna and Gene Siskel. It isn't the thyroid cancer it's the next thing that comes after it. > > > > > > Hi Jane...I saw my pulmonologist today and she changed my Dx to > > NSIP from IPF. > > > I've been fairly stable since '06 when I was first Dx and she > says > > IPF just doesn't act like this. She said she did not think a lung > bio > > would be of any great benefit right now...and we discussed trying > > Imuran...deciding not to. We will just watch and see what happens > as > > this year goes by. > > > She also explained the reason I'm SOB is because I have a lung > > disease! > > > She also told me that if my SATS are not below 88-89 I don't > need > > to use the O2. I think it helps tho' when I am SOB..... > > > Now I'll have to learn a little more about NSIP specifically. I > > know it's a strain of pulmonary fibrosis......... > > > Thanks for asking Jane! > > > > > > Mama-Sher, age 69. IPF 3-06, OR. > > > Don't fret about tomorrow, God is already there! > > > > > > Mama-Sher > > > > > > > > > > > > Mama-Sher, > > > > > > How are you doing? > > > > > > Toodles! > > > > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > > > > > > > > > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 K you don't want to think about it too muh. > > > > > > Hi Jane...I saw my pulmonologist today and she changed my Dx to > > NSIP from IPF. > > > I've been fairly stable since '06 when I was first Dx and she > says > > IPF just doesn't act like this. She said she did not think a lung > bio > > would be of any great benefit right now...and we discussed trying > > Imuran...deciding not to. We will just watch and see what happens > as > > this year goes by. > > > She also explained the reason I'm SOB is because I have a lung > > disease! > > > She also told me that if my SATS are not below 88-89 I don't > need > > to use the O2. I think it helps tho' when I am SOB..... > > > Now I'll have to learn a little more about NSIP specifically. I > > know it's a strain of pulmonary fibrosis......... > > > Thanks for asking Jane! > > > > > > Mama-Sher, age 69. IPF 3-06, OR. > > > Don't fret about tomorrow, God is already there! > > > > > > Mama-Sher > > > > > > > > > > > > Mama-Sher, > > > > > > How are you doing? > > > > > > Toodles! > > > > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > > > > > > > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > -------------------------------------------------------------------- ---------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
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