Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Started swelling in my face today, glasses real tight on side of my face, outside of right ear sore. I also feel very bloated tonight & noticed ankles are up a bit. Put in a late call to the Dr. about swelling & soreness, enough to take 2 Darvocets but did not hear back. Have to take cats to vet tomorrow first thing in am, one for check up & one to be fixed & declawed soif I haven't had a call by when I get home, will call back. When you flare do you just put in a regular call & wait. The rheumy told me to leave a message with her nurse on her line. Has anyone had any trouble with their teeth being sensitive. Mine are sensitive to hot & warm. I have been having trouble real bad for the last few months. Just had a check up & the dentist said everything is okay. Internist didn't think they would be affected. Just wondering. My dentist will work with me if there is something to be done. Been going there for 29 years. Started with the dad, see the son now. Thanks for all your help & kind words. It is so good to be able to talk about this with someone that understands. My husband is trying to learn, I should give him credit, he's still in shock over this. My friends have gone on the net to try to learn but unless you're going through it, you can't understand. I guess we will all learn together. Sue P. S. Happy belated birthday gals. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Started swelling in my face today, glasses real tight on side of my face, outside of right ear sore. I also feel very bloated tonight & noticed ankles are up a bit. Put in a late call to the Dr. about swelling & soreness, enough to take 2 Darvocets but did not hear back. Have to take cats to vet tomorrow first thing in am, one for check up & one to be fixed & declawed soif I haven't had a call by when I get home, will call back. When you flare do you just put in a regular call & wait. The rheumy told me to leave a message with her nurse on her line. Has anyone had any trouble with their teeth being sensitive. Mine are sensitive to hot & warm. I have been having trouble real bad for the last few months. Just had a check up & the dentist said everything is okay. Internist didn't think they would be affected. Just wondering. My dentist will work with me if there is something to be done. Been going there for 29 years. Started with the dad, see the son now. Thanks for all your help & kind words. It is so good to be able to talk about this with someone that understands. My husband is trying to learn, I should give him credit, he's still in shock over this. My friends have gone on the net to try to learn but unless you're going through it, you can't understand. I guess we will all learn together. Sue P. S. Happy belated birthday gals. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Sue, this is Judy Ostry. Dawn tells me you live in Des Plaines, I'm in Hoffman Estates! We're neighbors! As hard as this disease is on us, I think it's harder on our spouses, they feel so helpless. They want to help, but what can they really do? My husband, Jim, has the patience of a saint and has had a hard time dealing with my problems, he doesn't know how to help. All of your symptoms are normal, unfortunately, this disease is so rare no one knows what "normal" is. I have problems with my feet swelling, so I take lasix to keep that in check. My problems started in my ears, both, and it was horrible, believe me, I understand the pain. Plus you're scared, you don't know what to expect. Actually, none of us does, we just keep getting surprised over what is happening now! Hang in there, you will both adjust. Have patience, you will both need it. Vent when you need to, it helps. Use the support group, it really helps, because we know exactly what you feel. If you keep having a string of bad days, please ask for help, there are doctors who can help, and if we don't have anything to be depressed about, WHO DOES? Hang in there and pray (that always helps me). My phone # is , give me a call, maybe we can go to lunch and commiserate. Love, Judy O Having a bad day Started swelling in my face today, glasses real tight on side of my face,outside of right ear sore. I also feel very bloated tonight & noticedankles are up a bit. Put in a late call to the Dr. about swelling & soreness, enough to take 2 Darvocets but did not hear back. Have to takecats to vet tomorrow first thing in am, one for check up & one to be fixed & declawed soif I haven't had a call by when I get home, will call back. Whenyou flare do you just put in a regular call & wait. The rheumy told me toleave a message with her nurse on her line.Has anyone had any trouble with their teeth being sensitive. Mine aresensitive to hot & warm. I have been having trouble real bad for the lastfew months. Just had a check up & the dentist said everything is okay.Internist didn't think they would be affected. Just wondering. My dentistwill work with me if there is something to be done. Been going there for 29years. Started with the dad, see the son now.Thanks for all your help & kind words. It is so good to be able to talkabout this with someone that understands. My husband is trying to learn, Ishould give him credit, he's still in shock over this. My friends have goneon the net to try to learn but unless you're going through it, you can'tunderstand. I guess we will all learn together.SueP. S. Happy belated birthday gals.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Sue, this is Judy Ostry. Dawn tells me you live in Des Plaines, I'm in Hoffman Estates! We're neighbors! As hard as this disease is on us, I think it's harder on our spouses, they feel so helpless. They want to help, but what can they really do? My husband, Jim, has the patience of a saint and has had a hard time dealing with my problems, he doesn't know how to help. All of your symptoms are normal, unfortunately, this disease is so rare no one knows what "normal" is. I have problems with my feet swelling, so I take lasix to keep that in check. My problems started in my ears, both, and it was horrible, believe me, I understand the pain. Plus you're scared, you don't know what to expect. Actually, none of us does, we just keep getting surprised over what is happening now! Hang in there, you will both adjust. Have patience, you will both need it. Vent when you need to, it helps. Use the support group, it really helps, because we know exactly what you feel. If you keep having a string of bad days, please ask for help, there are doctors who can help, and if we don't have anything to be depressed about, WHO DOES? Hang in there and pray (that always helps me). My phone # is , give me a call, maybe we can go to lunch and commiserate. Love, Judy O Having a bad day Started swelling in my face today, glasses real tight on side of my face,outside of right ear sore. I also feel very bloated tonight & noticedankles are up a bit. Put in a late call to the Dr. about swelling & soreness, enough to take 2 Darvocets but did not hear back. Have to takecats to vet tomorrow first thing in am, one for check up & one to be fixed & declawed soif I haven't had a call by when I get home, will call back. Whenyou flare do you just put in a regular call & wait. The rheumy told me toleave a message with her nurse on her line.Has anyone had any trouble with their teeth being sensitive. Mine aresensitive to hot & warm. I have been having trouble real bad for the lastfew months. Just had a check up & the dentist said everything is okay.Internist didn't think they would be affected. Just wondering. My dentistwill work with me if there is something to be done. Been going there for 29years. Started with the dad, see the son now.Thanks for all your help & kind words. It is so good to be able to talkabout this with someone that understands. My husband is trying to learn, Ishould give him credit, he's still in shock over this. My friends have goneon the net to try to learn but unless you're going through it, you can'tunderstand. I guess we will all learn together.SueP. S. Happy belated birthday gals.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 This disease is so hard on us and our families. My kids and grandkids don't understand Grammy is not the same person all the time. We have alot on our plates to deal with. Between doctor appointments and trying to get them to understand to medications. Which sometimes I even have trouble remembering how to juggle them.Plus new symptoms and conditions. My husband of 37 years is also very supportive, not knowledable. I do print out emails that pertain to me and my condition and he see's test results. I feel bad for him that after all these years and an active sex life that now things are so different. I still adore him and sometimes want him I don't think he feels real secure. This disease is very difficult on our spouses too and on our self esteem. My opinion....Sue M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 This disease is so hard on us and our families. My kids and grandkids don't understand Grammy is not the same person all the time. We have alot on our plates to deal with. Between doctor appointments and trying to get them to understand to medications. Which sometimes I even have trouble remembering how to juggle them.Plus new symptoms and conditions. My husband of 37 years is also very supportive, not knowledable. I do print out emails that pertain to me and my condition and he see's test results. I feel bad for him that after all these years and an active sex life that now things are so different. I still adore him and sometimes want him I don't think he feels real secure. This disease is very difficult on our spouses too and on our self esteem. My opinion....Sue M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 Dear Judy, my husband is very kind and usually supportive. He's in Tennessee right now boar hunting, he found this place two years ago. He hated being away from me which he never used to do before I got sick. He got really mad at me that I didn't go on this trip but I just couldn't plus not my bag. I need for him to have fun a few days a year to just be himself. We need to realize if we can't do the things they want we have to let them go...Love, Sue M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 Dear Judy, my husband is very kind and usually supportive. He's in Tennessee right now boar hunting, he found this place two years ago. He hated being away from me which he never used to do before I got sick. He got really mad at me that I didn't go on this trip but I just couldn't plus not my bag. I need for him to have fun a few days a year to just be himself. We need to realize if we can't do the things they want we have to let them go...Love, Sue M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 Sue M., you're absolutely right, plus the fear we feel, belts them in the head, they don't know what we're going thru, and they can't fix it! Just like anyone else, you don't know what it's like until you are living it. Jim is so supportive and encouraging, I am very lucky. I wish everyone had that same kind of support. Of course, he's had YEARS of practice, he's gotten to the point where he takes each new thing all in his stride without missing a step. I wish you all a "Jim" to love and support you and baby you. You deserve it Love, Judy Re: Having a bad day This disease is so hard on us and our families. My kids and grandkids don't understand Grammy is not the same person all the time. We have alot on our plates to deal with. Between doctor appointments and trying to get them to understand to medications. Which sometimes I even have trouble remembering how to juggle them.Plus new symptoms and conditions. My husband of 37 years is also very supportive, not knowledable. I do print out emails that pertain to me and my condition and he see's test results. I feel bad for him that after all these years and an active sex life that now things are so different. I still adore him and sometimes want him I don't think he feels real secure. This disease is very difficult on our spouses too and on our self esteem. My opinion....Sue M DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 Sue M., you're absolutely right, plus the fear we feel, belts them in the head, they don't know what we're going thru, and they can't fix it! Just like anyone else, you don't know what it's like until you are living it. Jim is so supportive and encouraging, I am very lucky. I wish everyone had that same kind of support. Of course, he's had YEARS of practice, he's gotten to the point where he takes each new thing all in his stride without missing a step. I wish you all a "Jim" to love and support you and baby you. You deserve it Love, Judy Re: Having a bad day This disease is so hard on us and our families. My kids and grandkids don't understand Grammy is not the same person all the time. We have alot on our plates to deal with. Between doctor appointments and trying to get them to understand to medications. Which sometimes I even have trouble remembering how to juggle them.Plus new symptoms and conditions. My husband of 37 years is also very supportive, not knowledable. I do print out emails that pertain to me and my condition and he see's test results. I feel bad for him that after all these years and an active sex life that now things are so different. I still adore him and sometimes want him I don't think he feels real secure. This disease is very difficult on our spouses too and on our self esteem. My opinion....Sue M DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Sue, that's like my honey too. Even to just go to a football game, he calls as soon as the game is over to ask if I'm OK and if I need him to get anything on the way home, They do have their moments of being absolutely wonderful, and we're lucky to have them. I think God picked Jim just for me and that He knew what he would have to deal with, so He gave him an extra large helping of patience! God bless them! Love, Judy Re: Having a bad day Dear Judy, my husband is very kind and usually supportive. He's in Tennessee right now boar hunting, he found this place two years ago. He hated being away from me which he never used to do before I got sick. He got really mad at me that I didn't go on this trip but I just couldn't plus not my bag. I need for him to have fun a few days a year to just be himself. We need to realize if we can't do the things they want we have to let them go...Love, Sue M DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Sue, that's like my honey too. Even to just go to a football game, he calls as soon as the game is over to ask if I'm OK and if I need him to get anything on the way home, They do have their moments of being absolutely wonderful, and we're lucky to have them. I think God picked Jim just for me and that He knew what he would have to deal with, so He gave him an extra large helping of patience! God bless them! Love, Judy Re: Having a bad day Dear Judy, my husband is very kind and usually supportive. He's in Tennessee right now boar hunting, he found this place two years ago. He hated being away from me which he never used to do before I got sick. He got really mad at me that I didn't go on this trip but I just couldn't plus not my bag. I need for him to have fun a few days a year to just be himself. We need to realize if we can't do the things they want we have to let them go...Love, Sue M DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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