Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Lyle, Angie, Lu, Arto, Sandy, , Mimi, Kim, , , Mike, , H, L, , Cheryl, , , Shanin, Sue B, Sue W, Sue P, Jo, Janet, and all the rest who have called and sent me " Uplifting posts " , you don't know how good you all made me feel, you are the " ONLY " ones who understand what I just went through this last 2 weeks, I feel guilty posting when I am real sick and Know I should not feel that way, but you know what I mean there is always someone worse off then others and I feel bad sometime when I post what I feel. My RP is becoming " Refractory " meaning the Pred is not working like it should and we did the " FAB 5 " Metho, Arava, Immuran, Dapasone and Enbrel. I am now going with the show, I will be going on the Cyclosporin or Cytox in about a week as soon as the mouth clears up (Severe Yeast) From the 3000 pulse Meth Pred, which did not work at all. They will be looking at the heart tomorrow again to look at the Tricuspid to see if there is more regurgitation and also a scan of my nose which is swollen and painful. No joke when I say I had a Mental time after the 3rd day of the pulse MethPred till day 5, I was convinced I was going to die, My mind went array, although I am mentally better now, I just freaked when I found out it did not work and I have to take the Toxins now, see in my mind I thought the Pulse was going to work. anyways I am thinking straight now and know I have to do it and I will, I just have to keep thinking nothing will happen to me! and I will be OK, its just I feel I am getting worse and worse and see no end to this then they add another bad drug. I never in my life knew such pain is possible all over the body all it once, its like a bad nightmare but in reality it is a living nightmare, the fear alone is bad in it self. I am not coming to terms with just having to lay in bed like a vegetable, so something has to go right sooner or latter I just hope soon. On Friday we will have the new plan of action and I will post it for you all to read, and my doctor told me that I need to worry more about my disorder more then the Meds, which I am now doing, So please do not worry, I am getting a grip on things and will post on Friday, pending the heart Echo will determine the Med they will palace me on, Cytoxin or Cyclosporin A. P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2000 Report Share Posted February 29, 2000 My God , You are one tough lady! My prayers as with everyones are with you always! Nancie --- cath2000 wrote: > : > > You have the right to " go mental " . I'm sure I would > have much sooner > than you. Do you still have the Oxycotin for pain? > Is that helping at > all. They have many various strenghts for you to > use. Are you on water > pills for the swelling, if so make sure they have > you on a potassium > supplement. > > Let us know how your tests today go. Hopefully when > things calm down > AND THEY WILL!!!! everything will reset itself and > you'll find some > relief. > > We are with you and praying with all our might so > things are gonna get > better. Remember take just one day at a time cause > your body has been > through so much. Thank God for the little > accomplishments as they come > even though it's hard. > > Hope today turns out ok but even if it doesn't, > God's and Jesus love > have worked miracles in many ways, yours is just > going to be another > one!! > > Love ya, > > > > > > > Idigflower@... wrote: > > > From: Idigflower@... > > > > Lyle, Angie, Lu, Arto, Sandy, , Mimi, Kim, > , , Mike, > > , > > H, L, , Cheryl, , , > Shanin, Sue B, Sue W, > > Sue P, > > Jo, Janet, > > > > and all the rest who have called and sent me > " Uplifting posts " , you > > don't > > know how good you all made me feel, you are the > " ONLY " ones who > > understand > > what I just went through this last 2 weeks, I feel > guilty posting when > > I am > > real sick and Know I should not feel that way, but > you know what I > > mean there > > is always someone worse off then others and I feel > bad sometime when I > > post > > what I feel. > > > > My RP is becoming " Refractory " meaning the Pred is > not working like it > > should > > and we did the " FAB 5 " Metho, Arava, Immuran, > Dapasone and Enbrel. > > > > I am now going with the show, I will be going on > the Cyclosporin or > > Cytox in > > about a week as soon as the mouth clears up > (Severe Yeast) From the > > 3000 > > pulse Meth Pred, which did not work at all. They > will be looking at > > the > > heart tomorrow again to look at the Tricuspid to > see if there is more > > regurgitation and also a scan of my nose which is > swollen and > > painful. No > > joke when I say I had a Mental time after the 3rd > day of the pulse > > MethPred > > till day 5, I was convinced I was going to die, My > mind went array, > > although > > I am mentally better now, I just freaked when I > found out it did not > > work and > > I have to take the Toxins now, see in my mind I > thought the Pulse was > > going > > to work. anyways I am thinking straight now and > know I have to do it > > and I > > will, I just have to keep thinking nothing will > happen to me! and I > > will be > > OK, its just I feel I am getting worse and worse > and see no end to > > this then > > they add another bad drug. > > > > I never in my life knew such pain is possible all > over the body all it > > once, > > its like a bad nightmare but in reality it is a > living nightmare, the > > fear > > alone is bad in it self. > > > > I am not coming to terms with just having to lay > in bed like a > > vegetable, so > > something has to go right sooner or latter I just > hope soon. On > > Friday we > > will have the new plan of action and I will post > it for you all to > > read, and > > my doctor told me that I need to worry more about > my disorder more > > then the > > Meds, which I am now doing, > > > > So please do not worry, I am getting a grip on > things and will post on > > > > Friday, pending the heart Echo will determine the > Med they will palace > > me on, > > Cytoxin or Cyclosporin A. > > > > P > > > ----------------------------------------------------------------------- > > > > [ o n h e a l t h ] > > [ o n h e a l t h ] Servings of fruit a day: 0 > 1 2+ > > > > > ----------------------------------------------------------------------- > > hi and welcome. maybe we can come up with answers > that our doctors > > can't > > > ===== " A real friend is one who walks in when the rest of the world walks out. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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