Guest guest Posted July 5, 2008 Report Share Posted July 5, 2008 Yeah RIGHT..NUTHIN HA.....I'd be asking that Doc when HE last fronted up for the exact same procedure! SGIO> >> > Hi all,> > > > Well, I had the biopsy of my salivary glands on Tuesday. They gave > > me Versed for the procedure so I was pretty out of it for the rest of > > the day. My dad drove me back. As soon as the numbness wore off, > > OMG!! It was horrible!! If anyone told me again that I would need > > this done to diagnose Sjogren's, I would not do it!! I have been > > living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all > > week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? > > Only 1 pound!! So I still have 19 pounds to go before I go back to > > the pulmo in 3 months. I guess 1 is better than none, but I have > > been starving all week!! Even though I have been on so many pain > > pills I really haven't been hungry anyway. My lip was so swollen > > when I got up Wednesday, I looked like somebody had beat the crap out > > of me. By Wednesday night, I had started bruising on the outside of > > my lip. By Thursday, still had fat lip with more bruising on the > > outside, plus the nurse had to try 3 times to get the IV in, and the > > second try she did, the vein totally blew and a huge knot popped up > > and now I have a dark black and blue bruise on my arm bigger than a > > silver dollar. I have been surviving on Lortab and Lorcet for the > > whole week since Tuesday. I haven't done any exercise at all this > > week. I had fever Wednesday and Thursday. Today was the first day I > > have actually tried to chew anything and I can only chew if I eat on > > the left side and if I take really small bites. I know it could be a > > lot worse, especially after reading the posts from Vicky and Joyce, > > and I am not complaining, just simply saying if I had it to do over > > again, I would have told them just let the blood test be enough for a > > diagnosis for me. I am very hesitant now to even go to the eye > > doctor and get the tear duct study done. I don't have a clue how > > painful that will or will not be. > > > > Well that is how my week has been. I hope you all had a great Fourth > > of July. I didn't get to do any cooking out or anything cuz I > > couldn't eat, but I sure wanted to.> > > > At least today I can drink without using a straw and that is a real > > plus!! > > > > Hope you all have a great night!!> > > > Caro> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 - Caro, You have gone througha lot, I hope your lip heals and your pain lessens over the week end, My prayers are with you.- - In Breathe-Support , " carowade4444 " wrote: > > Hi all, > > Well, I had the biopsy of my salivary glands on Tuesday. They gave > me Versed for the procedure so I was pretty out of it for the rest of > the day. My dad drove me back. As soon as the numbness wore off, > OMG!! It was horrible!! If anyone told me again that I would need > this done to diagnose Sjogren's, I would not do it!! I have been > living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all > week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? > Only 1 pound!! So I still have 19 pounds to go before I go back to > the pulmo in 3 months. I guess 1 is better than none, but I have > been starving all week!! Even though I have been on so many pain > pills I really haven't been hungry anyway. My lip was so swollen > when I got up Wednesday, I looked like somebody had beat the crap out > of me. By Wednesday night, I had started bruising on the outside of > my lip. By Thursday, still had fat lip with more bruising on the > outside, plus the nurse had to try 3 times to get the IV in, and the > second try she did, the vein totally blew and a huge knot popped up > and now I have a dark black and blue bruise on my arm bigger than a > silver dollar. I have been surviving on Lortab and Lorcet for the > whole week since Tuesday. I haven't done any exercise at all this > week. I had fever Wednesday and Thursday. Today was the first day I > have actually tried to chew anything and I can only chew if I eat on > the left side and if I take really small bites. I know it could be a > lot worse, especially after reading the posts from Vicky and Joyce, > and I am not complaining, just simply saying if I had it to do over > again, I would have told them just let the blood test be enough for a > diagnosis for me. I am very hesitant now to even go to the eye > doctor and get the tear duct study done. I don't have a clue how > painful that will or will not be. > > Well that is how my week has been. I hope you all had a great Fourth > of July. I didn't get to do any cooking out or anything cuz I > couldn't eat, but I sure wanted to. > > At least today I can drink without using a straw and that is a real > plus!! > > Hope you all have a great night!! > > Caro > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Caro... oh my golly I'm so sorry to hear about the procedure and results! I had no idea the results could be as you say. I hope the pain doesn't last long and you soon will recover. When you can do this Hear me talk! then we know you are ok! MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Salivary gland biopsy Hi all,Well, I had the biopsy of my salivary glands on Tuesday. They gave me Versed for the procedure so I was pretty out of it for the rest of the day. My dad drove me back. As soon as the numbness wore off, OMG!! It was horrible!! If anyone told me again that I would need this done to diagnose Sjogren's, I would not do it!! I have been living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? Only 1 pound!! So I still have 19 pounds to go before I go back to the pulmo in 3 months. I guess 1 is better than none, but I have been starving all week!! Even though I have been on so many pain pills I really haven't been hungry anyway. My lip was so swollen when I got up Wednesday, I looked like somebody had beat the crap out of me. By Wednesday night, I had started bruising on the outside of my lip. By Thursday, still had fat lip with more bruising on the outside, plus the nurse had to try 3 times to get the IV in, and the second try she did, the vein totally blew and a huge knot popped up and now I have a dark black and blue bruise on my arm bigger than a silver dollar. I have been surviving on Lortab and Lorcet for the whole week since Tuesday. I haven't done any exercise at all this week. I had fever Wednesday and Thursday. Today was the first day I have actually tried to chew anything and I can only chew if I eat on the left side and if I take really small bites. I know it could be a lot worse, especially after reading the posts from Vicky and Joyce, and I am not complaining, just simply saying if I had it to do over again, I would have told them just let the blood test be enough for a diagnosis for me. I am very hesitant now to even go to the eye doctor and get the tear duct study done. I don't have a clue how painful that will or will not be. Well that is how my week has been. I hope you all had a great Fourth of July. I didn't get to do any cooking out or anything cuz I couldn't eat, but I sure wanted to.At least today I can drink without using a straw and that is a real plus!! Hope you all have a great night!!Caro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Hi Mama Sher, I am feeling much better today. I am actually going to try and eat some solid food. I still can't open my mouth very wide but most of the soreness has gone and nearly all of the swelling has gone down, so that is good. Still is something I never want to go through again!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Salivary gland biopsyTo: Breathe-Support Date: Sunday, July 6, 2008, 10:50 AM Caro... oh my golly I'm so sorry to hear about the procedure and results! I had no idea the results could be as you say. I hope the pain doesn't last long and you soon will recover. When you can do this Hear me talk! then we know you are ok! MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Salivary gland biopsy Hi all,Well, I had the biopsy of my salivary glands on Tuesday. They gave me Versed for the procedure so I was pretty out of it for the rest of the day. My dad drove me back. As soon as the numbness wore off, OMG!! It was horrible!! If anyone told me again that I would need this done to diagnose Sjogren's, I would not do it!! I have been living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? Only 1 pound!! So I still have 19 pounds to go before I go back to the pulmo in 3 months. I guess 1 is better than none, but I have been starving all week!! Even though I have been on so many pain pills I really haven't been hungry anyway. My lip was so swollen when I got up Wednesday, I looked like somebody had beat the crap out of me. By Wednesday night, I had started bruising on the outside of my lip. By Thursday, still had fat lip with more bruising on the outside, plus the nurse had to try 3 times to get the IV in, and the second try she did, the vein totally blew and a huge knot popped up and now I have a dark black and blue bruise on my arm bigger than a silver dollar. I have been surviving on Lortab and Lorcet for the whole week since Tuesday. I haven't done any exercise at all this week. I had fever Wednesday and Thursday. Today was the first day I have actually tried to chew anything and I can only chew if I eat on the left side and if I take really small bites. I know it could be a lot worse, especially after reading the posts from Vicky and Joyce, and I am not complaining, just simply saying if I had it to do over again, I would have told them just let the blood test be enough for a diagnosis for me. I am very hesitant now to even go to the eye doctor and get the tear duct study done. I don't have a clue how painful that will or will not be. Well that is how my week has been. I hope you all had a great Fourth of July. I didn't get to do any cooking out or anything cuz I couldn't eat, but I sure wanted to.At least today I can drink without using a straw and that is a real plus!! Hope you all have a great night!!Caro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Caro... so if the bio is positive what is the treatment and if you had not had the bio what would have been the treatment? MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Salivary gland biopsy Hi all,Well, I had the biopsy of my salivary glands on Tuesday. They gave me Versed for the procedure so I was pretty out of it for the rest of the day. My dad drove me back. As soon as the numbness wore off, OMG!! It was horrible!! If anyone told me again that I would need this done to diagnose Sjogren's, I would not do it!! I have been living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? Only 1 pound!! So I still have 19 pounds to go before I go back to the pulmo in 3 months. I guess 1 is better than none, but I have been starving all week!! Even though I have been on so many pain pills I really haven't been hungry anyway. My lip was so swollen when I got up Wednesday, I looked like somebody had beat the crap out of me. By Wednesday night, I had started bruising on the outside of my lip. By Thursday, still had fat lip with more bruising on the outside, plus the nurse had to try 3 times to get the IV in, and the second try she did, the vein totally blew and a huge knot popped up and now I have a dark black and blue bruise on my arm bigger than a silver dollar. I have been surviving on Lortab and Lorcet for the whole week since Tuesday. I haven't done any exercise at all this week. I had fever Wednesday and Thursday. Today was the first day I have actually tried to chew anything and I can only chew if I eat on the left side and if I take really small bites. I know it could be a lot worse, especially after reading the posts from Vicky and Joyce, and I am not complaining, just simply saying if I had it to do over again, I would have told them just let the blood test be enough for a diagnosis for me. I am very hesitant now to even go to the eye doctor and get the tear duct study done. I don't have a clue how painful that will or will not be. Well that is how my week has been. I hope you all had a great Fourth of July. I didn't get to do any cooking out or anything cuz I couldn't eat, but I sure wanted to.At least today I can drink without using a straw and that is a real plus!! Hope you all have a great night!!Caro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Thanks Gita. Much better today. I am actually thinking of getting out and walking some today. I haven't tried all week. I think I will enjoy just getting out of the house!! Am going stir crazy up in here!!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi>> Hi all,> > Well, I had the biopsy of my salivary glands on Tuesday. They gave > me Versed for the procedure so I was pretty out of it for the rest of > the day. My dad drove me back. As soon as the numbness wore off, > OMG!! It was horrible!! If anyone told me again that I would need > this done to diagnose Sjogren's, I would not do it!! I have been > living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all > week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? > Only 1 pound!! So I still have 19 pounds to go before I go back to > the pulmo in 3 months. I guess 1 is better than none, but I have > been starving all week!! Even though I have been on so many pain > pills I really haven't been hungry anyway. My lip was so swollen > when I got up Wednesday, I looked like somebody had beat the crap out > of me. By Wednesday night, I had started bruising on the outside of > my lip. By Thursday, still had fat lip with more bruising on the > outside, plus the nurse had to try 3 times to get the IV in, and the > second try she did, the vein totally blew and a huge knot popped up > and now I have a dark black and blue bruise on my arm bigger than a > silver dollar. I have been surviving on Lortab and Lorcet for the > whole week since Tuesday. I haven't done any exercise at all this > week. I had fever Wednesday and Thursday. Today was the first day I > have actually tried to chew anything and I can only chew if I eat on > the left side and if I take really small bites. I know it could be a > lot worse, especially after reading the posts from Vicky and Joyce, > and I am not complaining, just simply saying if I had it to do over > again, I would have told them just let the blood test be enough for a > diagnosis for me. I am very hesitant now to even go to the eye > doctor and get the tear duct study done. I don't have a clue how > painful that will or will not be. > > Well that is how my week has been. I hope you all had a great Fourth > of July. I didn't get to do any cooking out or anything cuz I > couldn't eat, but I sure wanted to.> > At least today I can drink without using a straw and that is a real > plus!! > > Hope you all have a great night!!> > Caro> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 That is a good question and I am not sure what the answer is. The only thing he told me was that if it is positive, it should respond to stopping the prednisone and increasing the Imuran up to 150 mg a day from the 100 mg a day I am taking now. I am now down from 30 mg a day of prednisone to 5 mg and still have not lost any weight like he said I would, except for the 1 pound in 2 weeks, even with the not being able to eat solid food all week. BUMMER!! My pulmo said not to increase the Imuran before they check my liver function tests again, which they did last Monday and I will call tomorrow to see if it is okay to go ahead and increase the dosage. I go back on the 15th to get the biopsy results, so guess I will go from there. I really don't see why I had to go through all of that just to increase the Imuran by 50 mg a day if that is all he is going to do. Do you? Well, guess I am not the doc. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: Sher Bauman <bofuswbcable (DOT) net>Subject: Re: Salivary gland biopsyTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 6, 2008, 10:50 AM Caro... oh my golly I'm so sorry to hear about the procedure and results! I had no idea the results could be as you say. I hope the pain doesn't last long and you soon will recover. When you can do this Hear me talk! then we know you are ok! MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Salivary gland biopsy Hi all,Well, I had the biopsy of my salivary glands on Tuesday. They gave me Versed for the procedure so I was pretty out of it for the rest of the day. My dad drove me back. As soon as the numbness wore off, OMG!! It was horrible!! If anyone told me again that I would need this done to diagnose Sjogren's, I would not do it!! I have been living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? Only 1 pound!! So I still have 19 pounds to go before I go back to the pulmo in 3 months. I guess 1 is better than none, but I have been starving all week!! Even though I have been on so many pain pills I really haven't been hungry anyway. My lip was so swollen when I got up Wednesday, I looked like somebody had beat the crap out of me. By Wednesday night, I had started bruising on the outside of my lip. By Thursday, still had fat lip with more bruising on the outside, plus the nurse had to try 3 times to get the IV in, and the second try she did, the vein totally blew and a huge knot popped up and now I have a dark black and blue bruise on my arm bigger than a silver dollar. I have been surviving on Lortab and Lorcet for the whole week since Tuesday. I haven't done any exercise at all this week. I had fever Wednesday and Thursday. Today was the first day I have actually tried to chew anything and I can only chew if I eat on the left side and if I take really small bites. I know it could be a lot worse, especially after reading the posts from Vicky and Joyce, and I am not complaining, just simply saying if I had it to do over again, I would have told them just let the blood test be enough for a diagnosis for me. I am very hesitant now to even go to the eye doctor and get the tear duct study done. I don't have a clue how painful that will or will not be. Well that is how my week has been. I hope you all had a great Fourth of July. I didn't get to do any cooking out or anything cuz I couldn't eat, but I sure wanted to.At least today I can drink without using a straw and that is a real plus!! Hope you all have a great night!!Caro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Caro... I don't understand much of what happens here on the board. Especially with all the different procedures/meds. Keep getting better! MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Salivary gland biopsy Hi all,Well, I had the biopsy of my salivary glands on Tuesday. They gave me Versed for the procedure so I was pretty out of it for the rest of the day. My dad drove me back. As soon as the numbness wore off, OMG!! It was horrible!! If anyone told me again that I would need this done to diagnose Sjogren's, I would not do it!! I have been living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? Only 1 pound!! So I still have 19 pounds to go before I go back to the pulmo in 3 months. I guess 1 is better than none, but I have been starving all week!! Even though I have been on so many pain pills I really haven't been hungry anyway. My lip was so swollen when I got up Wednesday, I looked like somebody had beat the crap out of me. By Wednesday night, I had started bruising on the outside of my lip. By Thursday, still had fat lip with more bruising on the outside, plus the nurse had to try 3 times to get the IV in, and the second try she did, the vein totally blew and a huge knot popped up and now I have a dark black and blue bruise on my arm bigger than a silver dollar. I have been surviving on Lortab and Lorcet for the whole week since Tuesday. I haven't done any exercise at all this week. I had fever Wednesday and Thursday. Today was the first day I have actually tried to chew anything and I can only chew if I eat on the left side and if I take really small bites. I know it could be a lot worse, especially after reading the posts from Vicky and Joyce, and I am not complaining, just simply saying if I had it to do over again, I would have told them just let the blood test be enough for a diagnosis for me. I am very hesitant now to even go to the eye doctor and get the tear duct study done. I don't have a clue how painful that will or will not be. Well that is how my week has been. I hope you all had a great Fourth of July. I didn't get to do any cooking out or anything cuz I couldn't eat, but I sure wanted to.At least today I can drink without using a straw and that is a real plus!! Hope you all have a great night!!Caro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Caro... whoops. I forgot to respond to your "making sense to want to know what caused fibrosis" Sure that makes sense to me. Somehow, knowing does make a difference. And I find other people want to know "how" too. I never thought about it being caused by something I did. Hmmmm. Well, if I caused it, it certainly was not intentional that's for sure! You too right? MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Salivary gland biopsy Hi all,Well, I had the biopsy of my salivary glands on Tuesday. They gave me Versed for the procedure so I was pretty out of it for the rest of the day. My dad drove me back. As soon as the numbness wore off, OMG!! It was horrible!! If anyone told me again that I would need this done to diagnose Sjogren's, I would not do it!! I have been living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? Only 1 pound!! So I still have 19 pounds to go before I go back to the pulmo in 3 months. I guess 1 is better than none, but I have been starving all week!! Even though I have been on so many pain pills I really haven't been hungry anyway. My lip was so swollen when I got up Wednesday, I looked like somebody had beat the crap out of me. By Wednesday night, I had started bruising on the outside of my lip. By Thursday, still had fat lip with more bruising on the outside, plus the nurse had to try 3 times to get the IV in, and the second try she did, the vein totally blew and a huge knot popped up and now I have a dark black and blue bruise on my arm bigger than a silver dollar. I have been surviving on Lortab and Lorcet for the whole week since Tuesday. I haven't done any exercise at all this week. I had fever Wednesday and Thursday. Today was the first day I have actually tried to chew anything and I can only chew if I eat on the left side and if I take really small bites. I know it could be a lot worse, especially after reading the posts from Vicky and Joyce, and I am not complaining, just simply saying if I had it to do over again, I would have told them just let the blood test be enough for a diagnosis for me. I am very hesitant now to even go to the eye doctor and get the tear duct study done. I don't have a clue how painful that will or will not be. Well that is how my week has been. I hope you all had a great Fourth of July. I didn't get to do any cooking out or anything cuz I couldn't eat, but I sure wanted to.At least today I can drink without using a straw and that is a real plus!! Hope you all have a great night!!Caro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Caro/Sher Making Sense and the Cause Now, if my fibrosis is caused by one of the dozens of things normally suspected and it makes no difference in treatment, then I don't care, except do care globally so others might avoid it. However, if its caused by another condition which might be treatable in some way or which would call for different steps to take care of myself best going forward, then I definitely want to know. For instance, MB and I have different forms of PF but share the Possible Undifferentiated Connective Tissue or Polymyotisis diagnosis. Well, definining that is important to me. It may not change my course of treatment but does at least cause more thought in that regard. However, it absolutely tells me future things to look out for and to expect. While we might not today have a full blown and obvious autoimmune disease at least we would be aware as it does develop. It could also explain a lot of other symptoms we have. In my case this would include some neuropathy, swallowing difficulties, and muscle weakness. It would sort of tie things up in a much neater package. My neurologist suspected it 5 years ago but rheumatologist found nothing. I now know I should have gone to a better rheumatologist and had more extensive testing at a medical school. So, simply, if the cause is second hand cigarette smoke, which can't be determined, it wouldn't help me at this point anyway. But if the cause is another disease, then that knowledge does shed a lot of light and information which can be very important and useful. > > > From: Sher Bauman bofuswbcable (DOT) net> > Subject: Re: Salivary gland biopsy > To: Breathe-Support@ yahoogroups. com > Date: Sunday, July 6, 2008, 10:50 AM > > > > Caro... oh my golly I'm so sorry to hear about the procedure and results! I had no idea the results could be as you say. I hope the pain doesn't last long and you soon will recover. When you can do this > > Hear me talk! > then we know you are ok! > > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums > Don't fret about tomorrow, God is already there! > > Salivary gland biopsy > > > Hi all, > > Well, I had the biopsy of my salivary glands on Tuesday. They gave > me Versed for the procedure so I was pretty out of it for the rest of > the day. My dad drove me back. As soon as the numbness wore off, > OMG!! It was horrible!! If anyone told me again that I would need > this done to diagnose Sjogren's, I would not do it!! I have been > living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all > week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? > Only 1 pound!! So I still have 19 pounds to go before I go back to > the pulmo in 3 months. I guess 1 is better than none, but I have > been starving all week!! Even though I have been on so many pain > pills I really haven't been hungry anyway. My lip was so swollen > when I got up Wednesday, I looked like somebody had beat the crap out > of me. By Wednesday night, I had started bruising on the outside of > my lip. By Thursday, still had fat lip with more bruising on the > outside, plus the nurse had to try 3 times to get the IV in, and the > second try she did, the vein totally blew and a huge knot popped up > and now I have a dark black and blue bruise on my arm bigger than a > silver dollar. I have been surviving on Lortab and Lorcet for the > whole week since Tuesday. I haven't done any exercise at all this > week. I had fever Wednesday and Thursday. Today was the first day I > have actually tried to chew anything and I can only chew if I eat on > the left side and if I take really small bites. I know it could be a > lot worse, especially after reading the posts from Vicky and Joyce, > and I am not complaining, just simply saying if I had it to do over > again, I would have told them just let the blood test be enough for a > diagnosis for me. I am very hesitant now to even go to the eye > doctor and get the tear duct study done. I don't have a clue how > painful that will or will not be. > > Well that is how my week has been. I hope you all had a great Fourth > of July. I didn't get to do any cooking out or anything cuz I > couldn't eat, but I sure wanted to. > > At least today I can drink without using a straw and that is a real > plus!! > > Hope you all have a great night!! > > Caro > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Hi Bruce... well of course I was writing to Caro of my own personal dx. I'm at IPF and already know the cause is not known. Yes, I too would like to know "the cause" and so would my family but not to be known right now. BTW I did contact the number for familial lung disease and a lady called me very promptly and I will receive another call after the holiday weekend. I really don't want to open this next "bag" but think I must, for my kids. Although, even if, there may be nothing they can do to prevent or treat. DAMNIT! MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Salivary gland biopsy>>> Hi all,>> Well, I had the biopsy of my salivary glands on Tuesday. They gave> me Versed for the procedure so I was pretty out of it for the rest of> the day. My dad drove me back. As soon as the numbness wore off,> OMG!! It was horrible!! If anyone told me again that I would need> this done to diagnose Sjogren's, I would not do it!! I have been> living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all> week. AANDDNDD I only lost 1 freaking pound!! Can you believe it?> Only 1 pound!! So I still have 19 pounds to go before I go back to> the pulmo in 3 months. I guess 1 is better than none, but I have> been starving all week!! Even though I have been on so many pain> pills I really haven't been hungry anyway. My lip was so swollen> when I got up Wednesday, I looked like somebody had beat the crap out> of me. By Wednesday night, I had started bruising on the outside of> my lip. By Thursday, still had fat lip with more bruising on the> outside, plus the nurse had to try 3 times to get the IV in, and the> second try she did, the vein totally blew and a huge knot popped up> and now I have a dark black and blue bruise on my arm bigger than a> silver dollar. I have been surviving on Lortab and Lorcet for the> whole week since Tuesday. I haven't done any exercise at all this> week. I had fever Wednesday and Thursday. Today was the first day I> have actually tried to chew anything and I can only chew if I eat on> the left side and if I take really small bites. I know it could be a> lot worse, especially after reading the posts from Vicky and Joyce,> and I am not complaining, just simply saying if I had it to do over> again, I would have told them just let the blood test be enough for a> diagnosis for me. I am very hesitant now to even go to the eye> doctor and get the tear duct study done. I don't have a clue how> painful that will or will not be.>> Well that is how my week has been. I hope you all had a great Fourth> of July. I didn't get to do any cooking out or anything cuz I> couldn't eat, but I sure wanted to.>> At least today I can drink without using a straw and that is a real> plus!!>> Hope you all have a great night!!>> Caro> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Caro, I have been diagnosed by bloodwork and symptoms. I just think all that torture that you went through was unnecessary....but, then I am not a doc. I am so glad that they never did this and I will never let them, now that I know. Sometimes I think the medicos just sit around dreaming up torture methods. I for one am tired of suffering. I will pray for your pain relief and fast healing. Just take those pain pills and sleep. 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 >> Caro... oh my golly I'm so sorry to hear about the procedure and results! I had no idea the results could be as you say. I hope the pain doesn't last long and you soon will recover. When you can do this> > Hear me talk! > then we know you are ok!> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!> > Salivary gland biopsy> > > Hi all,> > Well, I had the biopsy of my salivary glands on Tuesday. They gave > me Versed for the procedure so I was pretty out of it for the rest of > the day. My dad drove me back. As soon as the numbness wore off, > OMG!! It was horrible!! If anyone told me again that I would need > this done to diagnose Sjogren's, I would not do it!! I have been > living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all > week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? > Only 1 pound!! So I still have 19 pounds to go before I go back to > the pulmo in 3 months. I guess 1 is better than none, but I have > been starving all week!! Even though I have been on so many pain > pills I really haven't been hungry anyway. My lip was so swollen > when I got up Wednesday, I looked like somebody had beat the crap out > of me. By Wednesday night, I had started bruising on the outside of > my lip. By Thursday, still had fat lip with more bruising on the > outside, plus the nurse had to try 3 times to get the IV in, and the > second try she did, the vein totally blew and a huge knot popped up > and now I have a dark black and blue bruise on my arm bigger than a > silver dollar. I have been surviving on Lortab and Lorcet for the > whole week since Tuesday. I haven't done any exercise at all this > week. I had fever Wednesday and Thursday. Today was the first day I > have actually tried to chew anything and I can only chew if I eat on > the left side and if I take really small bites. I know it could be a > lot worse, especially after reading the posts from Vicky and Joyce, > and I am not complaining, just simply saying if I had it to do over > again, I would have told them just let the blood test be enough for a > diagnosis for me. I am very hesitant now to even go to the eye > doctor and get the tear duct study done. I don't have a clue how > painful that will or will not be. > > Well that is how my week has been. I hope you all had a great Fourth > of July. I didn't get to do any cooking out or anything cuz I > couldn't eat, but I sure wanted to.> > At least today I can drink without using a straw and that is a real > plus!! > > Hope you all have a great night!!> > Caro> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2008 Report Share Posted July 7, 2008 Thanks Joyce. I really don't see the point, either, but I know I had an awful week and will never do it again!! At least I can somewhat chew now!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Salivary gland biopsyTo: Breathe-Support Date: Sunday, July 6, 2008, 1:11 PM Caro, I have been diagnosed by bloodwork and symptoms. I just think all that torture that you went through was unnecessary. ...but, then I am not a doc. I am so glad that they never did this and I will never let them, now that I know. Sometimes I think the medicos just sit around dreaming up torture methods. I for one am tired of suffering. I will pray for your pain relief and fast healing. Just take those pain pills and sleep. 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 >> Caro... oh my golly I'm so sorry to hear about the procedure and results! I had no idea the results could be as you say. I hope the pain doesn't last long and you soon will recover. When you can do this> > Hear me talk! > then we know you are ok!> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!> > Salivary gland biopsy> > > Hi all,> > Well, I had the biopsy of my salivary glands on Tuesday. They gave > me Versed for the procedure so I was pretty out of it for the rest of > the day. My dad drove me back. As soon as the numbness wore off, > OMG!! It was horrible!! If anyone told me again that I would need > this done to diagnose Sjogren's, I would not do it!! I have been > living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all > week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? > Only 1 pound!! So I still have 19 pounds to go before I go back to > the pulmo in 3 months. I guess 1 is better than none, but I have > been starving all week!! Even though I have been on so many pain > pills I really haven't been hungry anyway. My lip was so swollen > when I got up Wednesday, I looked like somebody had beat the crap out > of me. By Wednesday night, I had started bruising on the outside of > my lip. By Thursday, still had fat lip with more bruising on the > outside, plus the nurse had to try 3 times to get the IV in, and the > second try she did, the vein totally blew and a huge knot popped up > and now I have a dark black and blue bruise on my arm bigger than a > silver dollar. I have been surviving on Lortab and Lorcet for the > whole week since Tuesday. I haven't done any exercise at all this > week. I had fever Wednesday and Thursday. Today was the first day I > have actually tried to chew anything and I can only chew if I eat on > the left side and if I take really small bites. I know it could be a > lot worse, especially after reading the posts from Vicky and Joyce, > and I am not complaining, just simply saying if I had it to do over > again, I would have told them just let the blood test be enough for a > diagnosis for me. I am very hesitant now to even go to the eye > doctor and get the tear duct study done. I don't have a clue how > painful that will or will not be. > > Well that is how my week has been. I hope you all had a great Fourth > of July. I didn't get to do any cooking out or anything cuz I > couldn't eat, but I sure wanted to.> > At least today I can drink without using a straw and that is a real > plus!! > > Hope you all have a great night!!> > Caro> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Hi .... haven't connected with you personally for awhile and want you to know I read your posts and still wonder how you cope with so many things. I guess the way the rest of us do...me included. One day at a time, one situation at a time. Keep on keepin' on friend. MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Salivary gland biopsy> > > Hi all,> > Well, I had the biopsy of my salivary glands on Tuesday. They gave > me Versed for the procedure so I was pretty out of it for the rest of > the day. My dad drove me back. As soon as the numbness wore off, > OMG!! It was horrible!! If anyone told me again that I would need > this done to diagnose Sjogren's, I would not do it!! I have been > living off of Fat Free Jell-O Pudding, Fat-Free Jell-0 and soup all > week. AANDDNDD I only lost 1 freaking pound!! Can you believe it? > Only 1 pound!! So I still have 19 pounds to go before I go back to > the pulmo in 3 months. I guess 1 is better than none, but I have > been starving all week!! Even though I have been on so many pain > pills I really haven't been hungry anyway. My lip was so swollen > when I got up Wednesday, I looked like somebody had beat the crap out > of me. By Wednesday night, I had started bruising on the outside of > my lip. By Thursday, still had fat lip with more bruising on the > outside, plus the nurse had to try 3 times to get the IV in, and the > second try she did, the vein totally blew and a huge knot popped up > and now I have a dark black and blue bruise on my arm bigger than a > silver dollar. I have been surviving on Lortab and Lorcet for the > whole week since Tuesday. I haven't done any exercise at all this > week. I had fever Wednesday and Thursday. Today was the first day I > have actually tried to chew anything and I can only chew if I eat on > the left side and if I take really small bites. I know it could be a > lot worse, especially after reading the posts from Vicky and Joyce, > and I am not complaining, just simply saying if I had it to do over > again, I would have told them just let the blood test be enough for a > diagnosis for me. I am very hesitant now to even go to the eye > doctor and get the tear duct study done. I don't have a clue how > painful that will or will not be. > > Well that is how my week has been. I hope you all had a great Fourth > of July. I didn't get to do any cooking out or anything cuz I > couldn't eat, but I sure wanted to.> > At least today I can drink without using a straw and that is a real > plus!! > > Hope you all have a great night!!> > Caro> Quote Link to comment Share on other sites More sharing options...
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