Guest guest Posted September 29, 1999 Report Share Posted September 29, 1999 In a message dated 09/29/1999 2:57:44 PM Eastern Daylight Time, susan.burdick@... writes: << guess this is just the beginning and I want to thank all of you for your support, knowledge, and prayers. I hope all that are going through bad times recieve the strength, the courage, and God's support needed to combat this. >> B what is the name of the motrin type drug she did prescribe? I hope it does work for him. I wish I knew how he ignored the pain of inflamed ears and nose though cause I know when my ears are inflamed the slightest breeze is enough to make me cry. The lab work she ordered is all normal stuff, so don't read anything into that, she needs a comparison range for future lab tests. and until she knows his kidneys and liver are OK she may get more aggressive in treatment then. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 1999 Report Share Posted September 29, 1999 Hey I just thought of something what happened with the hole pillows? Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 1999 Report Share Posted September 29, 1999 In a message dated 9/29/99 8:35:28 PM Central Daylight Time, AngieCATW1@... writes: << Hey I just thought of something what happened with the hole pillows? Angie >> I know... I have been sitting on the porch waiting for the ups man every day, all he does is just waves and goes right on by......: ( LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 1999 Report Share Posted September 29, 1999 In a message dated 9/29/99 10:53:56 PM Central Daylight Time, Lu1953@... writes: Hey Guys Had a rough few weeks LOL, I promise this weekend they are going out< I am so Sorry! P << Hey I just thought of something what happened with the hole pillows? Angie >> I know... I have been sitting on the porch waiting for the ups man every day, all he does is just waves and goes right on by......: ( LOL >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 1999 Report Share Posted September 30, 1999 Hi , Thank you for your thoughts. That's exactly what we are planning on doing - one day at a time, but with as much love, laughter, prayer and good times as we both can share. I'm sure Brett felt the 'why me' and some anger but he didn't really dwell on it. His belief in God is very strong and it's his nature to try to overcome obstacles. He also was in a very busy work mode when he was diagnosed in April so he didn't have much time to dwell on it. He was very happy with Dr. . He felt she was very knowledgeable on RP. I don't know if I mentioned this but Brett and his family were subjected to Chromium 6 in the water tables in Barstow CA when he was growing up - his sister developed 5 malignant brain tumers, his brother tumors in his mouth and Brett a white cell problem (maybe this?). His sister survived 5 operations and leads a very active life. His brother is now fine. I'm the one who tends to think the worse is going to happen. Brett and I will keep learning - from this group and from the doctors here. I hope that in the future we see RP research stepped up somehow. Love, Burdick At 04:40 PM 9/29/1999 EDT, you wrote: >From: Idigflower@... > >In a message dated 9/29/99 1:57:46 PM Central Daylight Time, >susan.burdick@... writes: > >, >Hi there, again, I know and feel you thoughts! Hang in there and take >it 1 day at a time, and YES the doctors are just as baffled with this as we >are. It sounds like now Brett is going to get the best treatments available >to him and the Doctor most likely wants to see if the NASD's will work 1st >before the Steroids. Now remember to write down ALL your question on paper >for next appt, and if his ears are not getting any better call the doctor >sooner and just let her know. What is Brett's thoughts on all this? and >does he feel any better now knowing more about the disorder? and do you think >he is at peace with it? I ask because I was devastated when I found out about >the disorder and to know how long I truly had it for, I had so much anger >inside of me, and I had to see someone help me come to terms with things, >which I truly recommend, It made a world of difference for me, I am a much >better person now for doing it and I also think becoming as educated as >possible with our disorder also helps a lot. This disorder also has brought >out a much stronger love between my husband and myself. If you ever need to >talk please feel free to call me any time! > >Love, > P................. > > ><< All in all we really liked her, but wished > we could get answers that everyone on this list has probably asked when > first diagnosed. But I guess the doctors can't really answer some of these. > > > I guess this is just the beginning and I want to thank all of you for your > support, knowledge, and prayers. I hope all that are going through bad > times recieve the strength, the courage, and God's support needed to combat > this. > > Burdick > > > >From: Idigflower@... > > > >, Did you take Brett to the Doctor yestaerday, I thought his appt was > >yesterday? If so what did they say and do? > > > > > >How is Brett? > > > > > >Love P....... > > >> > >>hi and welcome. maybe we can come up with answers that our doctors can't > Burdick Circulation / ILL Yale Divinity Library phone : 409 Prospect Street fax: : (203) 432-3906 New Haven, CT 06511 USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 1999 Report Share Posted September 30, 1999 Thanks , Yes the Doctor even said that she is available and reachable at ALL times..in case he is feeling worse or develops something new. But from what I've read I thought a dose of Pred was in order...at least to stop the immune system for the present. I hope that the motrim is not just a 'mask' over til she gets the test results. I keep you posted. B. At 08:00 PM 9/29/1999 -0400, you wrote: > > >Hi B, >I agree with you on the Pred thing. Motrin is just gonna give Brett some >relief from the pain, not slow down his immune system which of course is in >overdrive, thus the flare-ups. >When I first went to my Primary doctor she took one look at my ears and >immediately started me on a high dose of Pred. No nose involvement at all >then. >I guess it really does just depend on the doctor. As we all know, there is >no set protocol for treating RP. >If Brett gets any worse at all though, I would get back on that phone ASAP >to your doctor. >Good luck and I hope the Motrin at least gives him some relief from the >pain. > >>>>>>>>>>>>>>>>>>>>> >For treatment she said that since Brett hasn't really been on anything yet >she wanted to start him (for a month) on a very strong 'motrim type' >prescription medicine. She wants to see him back on Oct. 26 to see if that >is working at all. If not she will put him on prednisone (sp?). I asked >her why isn't she putting him on that now since she can see the damage that >is already there and couldn't it get worse....she said she like to save >Pred. for a last resort treatment. She also said we couldn't tell how >quickly it will progress. I said it seemed very quick since Nov. of last >year and that's why I thought Pred. would be prescribed. She said she will >re-evaluate on Oct. 26. I didn't want to be too pushy since this was our >first visit. I told her I was on a listserve for the disease and she >thought that was a good idea. All in all we really liked her, but wished >we could get answers that everyone on this list has probably asked when >first diagnosed. But I guess the doctors can't really answer some of these. >I guess this is just the beginning and I want to thank all of you for your >support, knowledge, and prayers. I hope all that are going through bad >times recieve the strength, the courage, and God's support needed to combat >this. > Burdick > >>hi and welcome. maybe we can come up with answers that our doctors can't > Burdick Circulation / ILL Yale Divinity Library phone : 409 Prospect Street fax: : (203) 432-3906 New Haven, CT 06511 USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 1999 Report Share Posted September 30, 1999 Hi Angie, The name of the drug is relaben 750mg. #60 two tabs daily and she gave him 4 refills. As for the pain I'm like you, but Brett is different. When he was a speed cycling champ he would train by putting 50lbs weights in a knapsack on his back and bike uphill in one gear for two hours at a time. It seems he has a high tolerance. I hope you're right and she does become more aggressive when all the tests are in ! I'm sorry that you have been feeling poorly. I hope you'll be feeling better very soon. B. At 09:25 PM 9/29/1999 EDT, you wrote: >From: AngieCATW1@... > >In a message dated 09/29/1999 2:57:44 PM Eastern Daylight Time, >susan.burdick@... writes: > ><< guess this is just the beginning and I want to thank all of you for your > support, knowledge, and prayers. I hope all that are going through bad > times recieve the strength, the courage, and God's support needed to combat > this. >> > B >what is the name of the motrin type drug she did prescribe? I hope it does >work for him. I wish I knew how he ignored the pain of inflamed ears and nose >though cause I know when my ears are inflamed the slightest breeze is enough >to make me cry. The lab work she ordered is all normal stuff, so don't read >anything into that, she needs a comparison range for future lab tests. and >until she knows his kidneys and liver are OK she may get more aggressive in >treatment then. >Angie > >>hi and welcome. maybe we can come up with answers that our doctors can't > Burdick Circulation / ILL Yale Divinity Library phone : 409 Prospect Street fax: : (203) 432-3906 New Haven, CT 06511 USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 1999 Report Share Posted October 1, 1999 Thanks Angie for your words of wisdom, you're a breath of fresh air in stormy weather. Take care of yourself !!! B. At 07:45 PM 9/30/1999 EDT, you wrote: >From: AngieCATW1@... > >In a message dated 09/30/1999 9:49:21 AM Eastern Daylight Time, >susan.burdick@... writes: > ><< He felt she was very knowledgeable > on RP. I don't know if I mentioned this but Brett and his family were > subjected to Chromium 6 in the water tables in Barstow CA when he was > growing up - his sister developed 5 malignant brain tumers, his brother > tumors in his mouth and Brett a white cell problem (maybe this?). His > sister survived 5 operations and leads a very active life. His brother is > now fine. I'm the one who tends to think the worse is going to happen. > >> >Damn B his family has lived in hell haven't they? I pray the worse >isn't with Brett or any other of his family. I hope it is all over now. >Do not be surprised at not learning too much from the doctors. They are >clueless. We are a product of them not knowing what to do so keep informed >and don't be afraid to disagio with them > > > >Love and Gentle Hugs, >Angie > >http://members.tripod.com/lvngwell/Angiesplace2.htm >http://hometown.aol.com/RLR1999/HomeRP.html >http://members.tripod.com/~autoimmune > >>hi and welcome. maybe we can come up with answers that our doctors can't > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 1999 Report Share Posted October 1, 1999 In a message dated 9/29/1999 8:53:49 PM Pacific Daylight Time, Lu1953@... writes: << . I have been sitting on the porch waiting for the ups man every day, >> Put some clothes on, he might stop. : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 1999 Report Share Posted October 1, 1999 In a message dated 10/1/99 10:39:45 PM Central Daylight Time, Rlr1999@... writes: << . I have been sitting on the porch waiting for the ups man every day, >> Put some clothes on, he might stop. : ) >> LOL cute real cute LOL......I think that's way he didin't stop I had my clothes on, but hey that's a thought.....LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 In a message dated 10/01/1999 11:39:44 PM Eastern Daylight Time, Rlr1999@... writes: << >> Roy don't come to the reunion! you will probably leave in a body cast when we all get done with you, now your messing with yet another RP sister no where to hide there Roy! LOL Love and Gentle Hugs, Angie http://members.tripod.com/lvngwell/Angiesplace2.htm http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 In a message dated 10/2/1999 10:07:20 PM Pacific Daylight Time, AngieCATW1@... writes: << don't come to the reunion! you will probably leave in a body cast when we all get done with you, now your messing with yet another RP sister no where to hide there Roy! LOL >> Just cause I may leave in a body cast doesnt mean I might not have fun. I am sorry Angie, what did I say to you? I think this might have been about what I said to Lu. I thought Lu was already lining up with . Ummm just thinking about that body cast. That would mean I would meet some nurses! Sounds good already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 R it is over what you said to LU LOL! You are just toooo much thinking of ways to meet nurses! Geez I swear men! Love and Gentle Hugs, Angie http://members.tripod.com/lvngwell/Angiesplace2.htm http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/3/99 5:57:06 PM Central Daylight Time, Rlr1999@... writes: << You say it like it is a bad thing. LOL >> It is... they will tell you turn over pull those pants down I have an injection for you : ) Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/03/1999 10:37:16 PM Eastern Daylight Time, Rlr1999@... writes: << with white stocking. Her hair pulled back and a bottle of lotion in her hand. Roy >> Thats why Pete married me I fulfilled his wildest fantasy.LOL Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/3/99 9:37:13 PM Central Daylight Time, Rlr1999@... writes: << Roy- I do believe trying to meet nurses shows alot of good taste and class Janet >> Why thank you for recognizing my refined side Janet. These others are not aware the intelectual disireablitly of a woman in a starched white uniform, with white stocking. Her hair pulled back and a bottle of lotion in her hand. Roy >> OH my goodness ! An a needle in her other hand LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/3/99 9:42:33 PM Central Daylight Time, Baaboo19@... writes: << Roy >> Thats why Pete married me I fulfilled his wildest fantasy.LOL Janet >> LOL Janet...tell us more LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/3/1999 7:42:31 PM Pacific Daylight Time, Baaboo19@... writes: << Roy >> Thats why Pete married me I fulfilled his wildest fantasy.LOL Janet >> OK, SUSAN. Any more questions about why I was looking for a nurse? LMAO Janet. Thank you. : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/3/1999 7:42:44 PM Pacific Daylight Time, Lu1953@... writes: << a woman in a starched white uniform, with white stocking. I am trying to keep tonights discussion medically related. : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/3/1999 7:44:08 PM Pacific Daylight Time, Lu1953@... writes: << LOL Janet...tell us more LOL >> Lu, I dont really think that was nice to ask. But Janet since she did. NO I AM ONLY KIDDING!!!!!! LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/3/1999 7:44:08 PM Pacific Daylight Time, Lu1953@... writes: << LOL Janet...tell us more LOL >> Janet,,, Email it directly to me ok. LOL J/K ROy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/03/1999 10:37:14 PM Eastern Daylight Time, Rlr1999@... writes: << Her hair pulled back and a bottle of lotion in her hand. >> what kind of lotion? motion lotion??? Love and Gentle Hugs, Angie http://members.tripod.com/lvngwell/Angiesplace2.htm http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/03/1999 10:47:24 PM Eastern Daylight Time, Rlr1999@... writes: << I am trying to keep tonights discussion medically related >> what a crock of crap you are! Love and Gentle Hugs, Angie http://members.tripod.com/lvngwell/Angiesplace2.htm http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/3/1999 8:28:07 PM Pacific Daylight Time, AngieCATW1@... writes: << what a crock of crap you are! >> LMAO ANgie. Good one. I think said about the same thing. Quote Link to comment Share on other sites More sharing options...
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