Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Sher I think in total for kids to be as aware of parents medical history as possible is very helpful. At the least it gives them and doctors things to be on the lookout for. If there are tests or symptoms that indicate issues it can point them in the right direction quicker. I know only the major issues of my parents but do believe may have been other undiagnosed causes or conditions. Thats largely medical technology's changed. However, its also lack of more complete communication. I know has been at a huge disadvantage in having virtually no information on her birth parents medical history. Another impact of the selfishness of her birth mother in refusing even contact my letter. Much knowledge may be of little use to us but we never know when one piece of information might be critical. I applaud your desire to give your kids any knowledge you can. > > > > > > 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 I agree with everything below, the "I want to know what caused it," and that your kids should definitely know your history. My daughter spent the night with me last night and she is 27. She is a smoker and has been since the age of 14 or so and she got up this morning with this awful hacky cough. All I could wonder, is does she have UIP, too? My doc did tell me it could be caused from smoking and I did smoke for 10 years at 2 plus packs per day, but have been quit since 1999. Also when I was a kid up until a teenager I was exposed to many chemicals as I lived on a cotton farm and the fields were sprayed by cropdusters right across the road from our house. My mom always made us come inside whenever they would spray, but of course, by the time we got inside we were already exposed. No one thought anything of it back then. Yeah, I would definitely like to know if I have another disease besides UIP, but from what I can gather, most people that have Sjogren's have even other autoimmune diseases, such as lupus and RA, so there may even be more before it is done with. I just take one day at a time. I did go out and try to walk while ago. I made the 4 laps that make a mile, but I am totally exhausted!! I just feel so weak, guess I had better take it easy the rest of the day. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: FamilialTo: Breathe-Support Date: Sunday, July 6, 2008, 12:32 PM SherI think in total for kids to be as aware of parents medical history aspossible is very helpful. At the least it gives them and doctors thingsto be on the lookout for. If there are tests or symptoms that indicateissues it can point them in the right direction quicker. I know only themajor issues of my parents but do believe may have been otherundiagnosed causes or conditions. Thats largely medical technology'schanged. However, its also lack of more complete communication. I know has been at a huge disadvantage in having virtually noinformation on her birth parents medical history. Another impact of theselfishness of her birth mother in refusing even contact my letter. Muchknowledge may be of little use to us but we never know when one piece ofinformation might be critical. I applaud your desire to give your kidsany knowledge you can.> >> >> > 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 thepain> 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 restof> > 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 crapout> > 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 fora> > 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 Bruce... I think I've mentioned it before that I am particularly concerned about Lysa. She has had respiratory problems all her life and when she gets sick it always seems to "settle" in her lungs. A couple of years ago she had a bad bacterial virus that again, "settled" in her lungs and she hasn't totally recovered since. She sees her Dr regularly and Dr seems to think any illness or complaint now "goes back to the virus"... I'm hoping there will be more medical improvements in the years to come. I won't see it but maybe my kids will! 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 restof> > 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 crapout> > 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 fora> > 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 Yes Caro, rest up after your walk. I so admire you getting out and walking even half that far! I just can't do it. But I'm scolding myself for comparing me with someone else. We are all different! 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 restof> > 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 crapout> > 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 fora> > 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 Sher If she had a bad " bacterial virus " that settled in her lungs and hasn't fully recovered and a history of respiratory problems, regardless of PF or anything else, I would say she needs to get to a good pulmonologist. Whatever it is, it needs to be addressed. > > > > > > > > > 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 Yes, I know Bruce. I think she is scared she may have what I have or some form of ILD (an acronym she doesn't even know). I will continue to bring it up carefully. One thing that hurts them too is they can't afford insurance so only Lysa is insured -- dating back to her being so frequently ill since the virus.-- so some medical attention she has to pay herself. Their deduction is so high to be able to afford the premiums. What a crappy world we live in. 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 soupall> > > 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 outsideof> > > 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, andthe> > > second try she did, the vein totally blew and a huge knot poppedup> > > and now I have a dark black and blue bruise on my arm bigger thana> > > 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 dayI> > > have actually tried to chew anything and I can only chew if I eaton> > > the left side and if I take really small bites. I know it could bea> > > lot worse, especially after reading the posts from Vicky andJoyce,> > > and I am not complaining, just simply saying if I had it to doover> > > again, I would have told them just let the blood test be enoughfor> 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 greatFourth> > > 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 areal> > > 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 That's right Mama Sher. Don't scold yourself. We are all different. I am very thankful to not be as far progressed as some of you are already, even though from hearing from you I know what I have to look forward to. I am trying to just enjoy each day as best I can when I feel good and rest as much as I can when I don't. This morning got up to do the laundry and had horrible SOB just trying to get up and down the stairs. Some good days and some bad. It seems when the humidity is high (and is here a lot in Mississippi), that it makes my breathing worse. Seems like it takes more effort to do the slightest things, but I keep trying to push. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: FamilialTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 6, 2008, 12:32 PM SherI think in total for kids to be as aware of parents medical history aspossible is very helpful. At the least it gives them and doctors thingsto be on the lookout for. If there are tests or symptoms that indicateissues it can point them in the right direction quicker. I know only themajor issues of my parents but do believe may have been otherundiagnosed causes or conditions. Thats largely medical technology'schanged. However, its also lack of more complete communication. I know has been at a huge disadvantage in having virtually noinformation on her birth parents medical history. Another impact of theselfishness of her birth mother in refusing even contact my letter. Muchknowledge may be of little use to us but we never know when one piece ofinformation might be critical. I applaud your desire to give your kidsany knowledge you can.> >> >> > 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 thepain> 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 restof> > 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 crapout> > 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 fora> > 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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