Guest guest Posted April 13, 2001 Report Share Posted April 13, 2001 Dawn, you have a wonderful weekend and enjoy all of those beautiful things. Getting away will do you a world of good. Gee, I wish i was going with you. Have a real Happy Easter and just rest and relax. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2001 Report Share Posted April 15, 2001 I've been on plaquinil for 18 months, don't know that it does any good but we're all different. Maybe I'd be more messed up without it. I'm going through the skin problems now so who knows. I've always had weird stuff going on but please go on it. Who knows if it helps its worth trying. I sure do get sick of visiting my drug store.....Good luck and happy Easter....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 In a message dated 04/15/2001 3:31:40 AM Central Daylight Time, Idigflower@... writes: << have recently got some rp problems with my Kiddneys from the RP (I am also thought to be in remission) I was told to start Plquanal (sp), I am picking it up tomorrow. I never had Kidney involvement, is this normal? and do you think the Plaqunal will work? I was told >> , I am so sorry this is happening to you. Does the dr have any idea why? All I keep wondering is could the mega doses of prednisone have caused this? I'm sure you'll here from others who know a heck of a lot more than I do, maybe will know, have you asked her? And you were doing so great! I'm really sorry this happened. How serious is this? I will keep you on my prayer list (not that you were ever off it), and hope and pray for the best> Hang in there! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 In a message dated 04/15/2001 3:31:40 AM Central Daylight Time, Idigflower@... writes: << have recently got some rp problems with my Kiddneys from the RP (I am also thought to be in remission) I was told to start Plquanal (sp), I am picking it up tomorrow. I never had Kidney involvement, is this normal? and do you think the Plaqunal will work? I was told >> , I am so sorry this is happening to you. Does the dr have any idea why? All I keep wondering is could the mega doses of prednisone have caused this? I'm sure you'll here from others who know a heck of a lot more than I do, maybe will know, have you asked her? And you were doing so great! I'm really sorry this happened. How serious is this? I will keep you on my prayer list (not that you were ever off it), and hope and pray for the best> Hang in there! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2001 Report Share Posted April 23, 2001 Dear Sherry, I started out by looking at Merck.com and Nord.com for the research. Its a very confusing disease because no two people are alike. I'm sorry this is happening to your family but stay with us and we'll do what we can to help you....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2001 Report Share Posted April 23, 2001 Sherry, Welcome to the RP list. Ask any questions you want, there is lots of info here. What other health problems does your Mom have? Sandy > My mother suffers from RP . I am looking for any information on the > diease .She has a lot of other health problems . Please help. Sherry > > > > 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 April 23, 2001 Report Share Posted April 23, 2001 In a message dated 4/23/01 11:55:10 AM Pacific Daylight Time, sabrina@... writes: << My mother suffers from RP . I am looking for any information on the diease .She has a lot of other health problems . Please help. Sherry >> Sherry, welcome to the best support group. So sorry to hear that your mother has RP. How long has she had it? Please tell us a little about her and please feel free to ask all the questions you want. I think the first thing I would do is to find a good rheumy. One who can get her on the right medications. The sooner the better. A lot of the information that you will read is outdated and really scarey. RP is controlable with the right care. Just let us know what kind of information you need and someone will guide you to the right place. It is just as hard on family members, if not harder. Feel free to vent. We are all here for you. Believe me.....we have lots of shoulders... hugs C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2001 Report Share Posted April 24, 2001 In a message dated 04/23/2001 1:55:10 PM Central Daylight Time, sabrina@... writes: << My mother suffers from RP . I am looking for any information on the diease .She has a lot of other health problems . Please help. Sherry Sherry, since you've found us, you've found a great source of information. Hope we can help your mom. How long has she had RP? What are some of her other problems? Not (just) being nosy, I'd like to help in any way I can, even if it is only moral support. Love,Judy O >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2001 Report Share Posted April 24, 2001 In a message dated 04/23/2001 1:55:10 PM Central Daylight Time, sabrina@... writes: << My mother suffers from RP . I am looking for any information on the diease .She has a lot of other health problems . Please help. Sherry Sherry, since you've found us, you've found a great source of information. Hope we can help your mom. How long has she had RP? What are some of her other problems? Not (just) being nosy, I'd like to help in any way I can, even if it is only moral support. Love,Judy O >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 gobo though we've never met I'd like to say thank God for angels like you. You truley are a blessing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 gobo though we've never met I'd like to say thank God for angels like you. You truley are a blessing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 gobo though we've never met I'd like to say thank God for angels like you. You truley are a blessing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 Gobo, I am not sure a joke is a good idea for but if you feel it might help, you can tell her this one that I just came across. She might like it but laughing during recovery is sometimes contraindicated. Love and healing and a few smiles, !! Janice in Texas Paint My Porch One day a blonde comes out of the tanning salon. She wants to make some money so she goes to one of the rich neighborhoods. She rings the door bell and says, " HI, is there anything I could do for your house or you??? " The man thinks and says, " Sure, can paint my porch. You will find all the stuff in the garage. " The girl says, " O.K., How much will you pay me? " The man says, " How much does fifty bucks sound? " The blonde quickly agrees and get straight to work. The wife who had heard the conversation inside says, " 50 bucks, I hope she knows the porch goes all around the house! " 25 minutes later the girl knocks on the door and says, " O.K. I am done. Can I have my money now? " Surprised the man replies, " O.K. Let me get the money " He comes back and the girl says as she is leaving, " By the way, it's a Ferrari, not a Porch! " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 Gobo, I am not sure a joke is a good idea for but if you feel it might help, you can tell her this one that I just came across. She might like it but laughing during recovery is sometimes contraindicated. Love and healing and a few smiles, !! Janice in Texas Paint My Porch One day a blonde comes out of the tanning salon. She wants to make some money so she goes to one of the rich neighborhoods. She rings the door bell and says, " HI, is there anything I could do for your house or you??? " The man thinks and says, " Sure, can paint my porch. You will find all the stuff in the garage. " The girl says, " O.K., How much will you pay me? " The man says, " How much does fifty bucks sound? " The blonde quickly agrees and get straight to work. The wife who had heard the conversation inside says, " 50 bucks, I hope she knows the porch goes all around the house! " 25 minutes later the girl knocks on the door and says, " O.K. I am done. Can I have my money now? " Surprised the man replies, " O.K. Let me get the money " He comes back and the girl says as she is leaving, " By the way, it's a Ferrari, not a Porch! " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 Gobo, I am not sure a joke is a good idea for but if you feel it might help, you can tell her this one that I just came across. She might like it but laughing during recovery is sometimes contraindicated. Love and healing and a few smiles, !! Janice in Texas Paint My Porch One day a blonde comes out of the tanning salon. She wants to make some money so she goes to one of the rich neighborhoods. She rings the door bell and says, " HI, is there anything I could do for your house or you??? " The man thinks and says, " Sure, can paint my porch. You will find all the stuff in the garage. " The girl says, " O.K., How much will you pay me? " The man says, " How much does fifty bucks sound? " The blonde quickly agrees and get straight to work. The wife who had heard the conversation inside says, " 50 bucks, I hope she knows the porch goes all around the house! " 25 minutes later the girl knocks on the door and says, " O.K. I am done. Can I have my money now? " Surprised the man replies, " O.K. Let me get the money " He comes back and the girl says as she is leaving, " By the way, it's a Ferrari, not a Porch! " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 .. The whole situation would be funny if it wasn't so sad! I'm sorry that I told ANYONE at work that I was having this done. Dorian, Sorry to hear about your coworkers. I don't work outside the home at this time ( 8 kids at home ) but I too have not told many people for the same reasons. I am already ( even before surgery ) sorry that I told anyone at all. I wished I had told no one at all. I hate that people can be so rude. These people at your job may be jealous the more you lose, unfortunately not everyone rejoices when someone gets victory over a lifelong problem. I bet if you had cancer and were beating it everyone would rally around you, but for some reason especially women like when others around them are worse than they are so they can feel better about themselves. If I was near you I would certainly congratulate you on a job well done. Don't let them get you down, keep up the great work and take care of youself. Kathy Dr. Elariny June 7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 .. The whole situation would be funny if it wasn't so sad! I'm sorry that I told ANYONE at work that I was having this done. Dorian, Sorry to hear about your coworkers. I don't work outside the home at this time ( 8 kids at home ) but I too have not told many people for the same reasons. I am already ( even before surgery ) sorry that I told anyone at all. I wished I had told no one at all. I hate that people can be so rude. These people at your job may be jealous the more you lose, unfortunately not everyone rejoices when someone gets victory over a lifelong problem. I bet if you had cancer and were beating it everyone would rally around you, but for some reason especially women like when others around them are worse than they are so they can feel better about themselves. If I was near you I would certainly congratulate you on a job well done. Don't let them get you down, keep up the great work and take care of youself. Kathy Dr. Elariny June 7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 .. The whole situation would be funny if it wasn't so sad! I'm sorry that I told ANYONE at work that I was having this done. Dorian, Sorry to hear about your coworkers. I don't work outside the home at this time ( 8 kids at home ) but I too have not told many people for the same reasons. I am already ( even before surgery ) sorry that I told anyone at all. I wished I had told no one at all. I hate that people can be so rude. These people at your job may be jealous the more you lose, unfortunately not everyone rejoices when someone gets victory over a lifelong problem. I bet if you had cancer and were beating it everyone would rally around you, but for some reason especially women like when others around them are worse than they are so they can feel better about themselves. If I was near you I would certainly congratulate you on a job well done. Don't let them get you down, keep up the great work and take care of youself. Kathy Dr. Elariny June 7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 Meli, I hope it is me Kathy B. you were talking to. My surgery is Tuesday, the 15Th of May. If there is another Kathy that is having hers tomorrow, good luck. I'll pray for you. Kathy Bazzi Dearborn, MI Patiently waiting....paid off Dr. Mustafa Hares surgery date May 15 8am 354 lbs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 Meli, I hope it is me Kathy B. you were talking to. My surgery is Tuesday, the 15Th of May. If there is another Kathy that is having hers tomorrow, good luck. I'll pray for you. Kathy Bazzi Dearborn, MI Patiently waiting....paid off Dr. Mustafa Hares surgery date May 15 8am 354 lbs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 Meli, I hope it is me Kathy B. you were talking to. My surgery is Tuesday, the 15Th of May. If there is another Kathy that is having hers tomorrow, good luck. I'll pray for you. Kathy Bazzi Dearborn, MI Patiently waiting....paid off Dr. Mustafa Hares surgery date May 15 8am 354 lbs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2001 Report Share Posted July 5, 2001 In a message dated 7/3/01 11:11:15 PM Pacific Daylight Time, peggophx@... writes: > Hi all. I'm new to this group and hope to get some answers. I was > diagnosed with rosacea about 10 yrs. ago. In the last year or so I > have had a problem with dry scaley skin around my nostrils. This > comes with the flare ups and clears up when the acne clears up. Does > anyone else have this symptom? Also, it seems to me that my flare > ups are very much hormonally influenced....can this be so? Thanks, > Peg, I get dry skin around my nostrils although I do not have an acne problem. I have been moisturizing with pure jojoba oil after washing and/or shaving, and it has been terrific. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2001 Report Share Posted July 5, 2001 Hi, I get a similar symptom with dry scaley patches near my nose and just below the corners of my mouth. I have good luck with Florasone, a topical you can buy at Whole Foods. It is a homepathic plant-based cream that acts like a steriod without the nasty side effects or backlash associate with cortisone, etc. Suzi __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 Ruthie what a difficult situation to be in... My suggestion would be to write to her. You have a bit more time to think about what you want to say and she doesn't have to respond in any way. I suppose that it might take longer than you would like to get there airmail, so maybe email would be an alternative? I have a friend who has recently written a book about her experiences of cancer - she was the sufferer of course - and one of the things she mentioned was how important it was to have letters, just to know that people cared. I also know that her parents who are *intensely* private people appreciated the concern others expressed to them. -- jennifer@... Vaudin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2001 Report Share Posted August 18, 2001 > Ruthie what a difficult situation to be in... > > My suggestion would be to write to her. You have a bit more time to > think about what you want to say and she doesn't have to respond in > any way. I suppose that it might take longer than you would like to > get there airmail, so maybe email would be an alternative? Thanks for the idea, ; the thought had crossed my mind to write her an email, problem is, she's not the type to check her email very often, that's if she has an email connection altogether; (I think she must have, for the business, but she's not really into computers that much) What I have done this week is to get my daughter in London who is staying in my house (and whose 4 kids are busy wrecking it!) to send her a bunch of flowers with a note saying " thinking of you, love from Ruthie " . It doesn't say much but I have talked to her in the past in more detail so she does know what I want to say. Ruthie Quote Link to comment Share on other sites More sharing options...
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