Guest guest Posted July 10, 2007 Report Share Posted July 10, 2007 Faith: My Rhuemy once told me that one way to explain Stills Disease to those that don't know is to tell them you have Adult On-set Juvenile Rhuematory Arthritis. It's not quite the same thing but more people have heard of that. I've even called the Arthritis Foundation here in FLorida and asked them about Stills and the woman on the phone (very nicely) said she'd never heard of it and thought I was making it up. To say the least I was frustrated but by the time we were done talking she had an education and all I could do was laugh at the lack of information. You've found a home here. Stay, make yourself comfortable, there are big shoulders for rest your head upon, even bigger hearts to help you heal and good friends to get you to smile and show you love and caring. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2007 Report Share Posted July 10, 2007 Faith: My Rhuemy once told me that one way to explain Stills Disease to those that don't know is to tell them you have Adult On-set Juvenile Rhuematory Arthritis. It's not quite the same thing but more people have heard of that. I've even called the Arthritis Foundation here in FLorida and asked them about Stills and the woman on the phone (very nicely) said she'd never heard of it and thought I was making it up. To say the least I was frustrated but by the time we were done talking she had an education and all I could do was laugh at the lack of information. You've found a home here. Stay, make yourself comfortable, there are big shoulders for rest your head upon, even bigger hearts to help you heal and good friends to get you to smile and show you love and caring. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2007 Report Share Posted July 10, 2007 Faith: My Rhuemy once told me that one way to explain Stills Disease to those that don't know is to tell them you have Adult On-set Juvenile Rhuematory Arthritis. It's not quite the same thing but more people have heard of that. I've even called the Arthritis Foundation here in FLorida and asked them about Stills and the woman on the phone (very nicely) said she'd never heard of it and thought I was making it up. To say the least I was frustrated but by the time we were done talking she had an education and all I could do was laugh at the lack of information. You've found a home here. Stay, make yourself comfortable, there are big shoulders for rest your head upon, even bigger hearts to help you heal and good friends to get you to smile and show you love and caring. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 I also tell people it's a cross between Lupus and RA - becuase in many ways it is. They understand those as well. > > Faith: > > My Rhuemy once told me that one way to explain Stills Disease to > those that don't know is to tell them you have Adult On-set Juvenile > Rhuematory Arthritis. It's not quite the same thing but more people > have heard of that. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 I also tell people it's a cross between Lupus and RA - becuase in many ways it is. They understand those as well. > > Faith: > > My Rhuemy once told me that one way to explain Stills Disease to > those that don't know is to tell them you have Adult On-set Juvenile > Rhuematory Arthritis. It's not quite the same thing but more people > have heard of that. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 I also tell people it's a cross between Lupus and RA - becuase in many ways it is. They understand those as well. > > Faith: > > My Rhuemy once told me that one way to explain Stills Disease to > those that don't know is to tell them you have Adult On-set Juvenile > Rhuematory Arthritis. It's not quite the same thing but more people > have heard of that. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 : I wrote that posting at 4 a.m. and forgot to sign it, I apologize. I never thought of that. I have another questions though. The last time I saw my Rhuemy he asked me if I had noticed my nose (inside) was crusty and if the outside was dry where the nostrils meet the face. Am I to gather this is another indication of activity for the dragon? If you don't know, it's OK, I'm seeing him next month anyway and can ask. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 : I wrote that posting at 4 a.m. and forgot to sign it, I apologize. I never thought of that. I have another questions though. The last time I saw my Rhuemy he asked me if I had noticed my nose (inside) was crusty and if the outside was dry where the nostrils meet the face. Am I to gather this is another indication of activity for the dragon? If you don't know, it's OK, I'm seeing him next month anyway and can ask. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 : I wrote that posting at 4 a.m. and forgot to sign it, I apologize. I never thought of that. I have another questions though. The last time I saw my Rhuemy he asked me if I had noticed my nose (inside) was crusty and if the outside was dry where the nostrils meet the face. Am I to gather this is another indication of activity for the dragon? If you don't know, it's OK, I'm seeing him next month anyway and can ask. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 this is what i also tell people . I say " take the fun and games of RA and then add in Lupus fun and game and you can get a good idea what stills is . and for us a good day is this remeber what the flue felt like well that is almost a good day for us . the hurt pain and musscal acking . they seam to understand it this way better or at lest they act it and so if they do not understand then may be we should hand out the golden dragon awards like the oskers for actting like they care the redneck Marty ________________________________________________________________________________\ ____ Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 this is what i also tell people . I say " take the fun and games of RA and then add in Lupus fun and game and you can get a good idea what stills is . and for us a good day is this remeber what the flue felt like well that is almost a good day for us . the hurt pain and musscal acking . they seam to understand it this way better or at lest they act it and so if they do not understand then may be we should hand out the golden dragon awards like the oskers for actting like they care the redneck Marty ________________________________________________________________________________\ ____ Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 this is what i also tell people . I say " take the fun and games of RA and then add in Lupus fun and game and you can get a good idea what stills is . and for us a good day is this remeber what the flue felt like well that is almost a good day for us . the hurt pain and musscal acking . they seam to understand it this way better or at lest they act it and so if they do not understand then may be we should hand out the golden dragon awards like the oskers for actting like they care the redneck Marty ________________________________________________________________________________\ ____ Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Ellen, Never heard of the nose thing - esp in that description. I know some of us have problems - I do, I have ulcers/scabs in both sides of my nose - but no rheumy has ever mentioned it being a part of Stills (though I know it is for me as it showed up when i got sick!). Houston, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Ellen, Never heard of the nose thing - esp in that description. I know some of us have problems - I do, I have ulcers/scabs in both sides of my nose - but no rheumy has ever mentioned it being a part of Stills (though I know it is for me as it showed up when i got sick!). Houston, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Ellen, Never heard of the nose thing - esp in that description. I know some of us have problems - I do, I have ulcers/scabs in both sides of my nose - but no rheumy has ever mentioned it being a part of Stills (though I know it is for me as it showed up when i got sick!). Houston, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 : Maybe it's food for thought then. As I said, when I see my RD next month I'm going to inquire about that. It just never occured to me to ask when he first mentioned it. I think I was shocked by the question. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 : Maybe it's food for thought then. As I said, when I see my RD next month I'm going to inquire about that. It just never occured to me to ask when he first mentioned it. I think I was shocked by the question. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2007 Report Share Posted July 26, 2007 we try to be... Some of us get grouchy when we dont feel well but Im sure u understand that... Great to have ya here Kerry Hello I just joined. I'm from Dayton, OH and I have both RA and lupus. I have been retired for several years. Have been dealing with a lot of pain lately but I think I have been handling it the best I can. After a stint in the hospital a couple years ago, I bought this computer. Have "met" mostly nice people....but one in particular truly disappointed me and now we are no longer in touch. But I decided I would not let that discourage me from reaching out to others. Because I truly feel most people are good at heart.Candy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2007 Report Share Posted July 26, 2007 Hello all, I have been a member for awhile...don't post much...but I read as many posts as I can.....I have so much wrong with me that is not even funny....am a retired nurse....I am supposed to be dead already..lol......well quess what I'm still alive and kicking....I appreciate all the posts ...the fantastic to the lowest of the low...not meaning to enjoy anyone's misery ...heaven forbid...well till next time.~Kerry~ <kerry-lane@...> wrote: we try to be... Some of us get grouchy when we dont feel well but Im sure u understand that... Great to have ya here Kerry Hello I just joined. I'm from Dayton, OH and I have both RA and lupus. I have been retired for several years. Have been dealing with a lot of pain lately but I think I have been handling it the best I can. After a stint in the hospital a couple years ago, I bought this computer. Have "met" mostly nice people....but one in particular truly disappointed me and now we are no longer in touch. But I decided I would not let that discourage me from reaching out to others. Because I truly feel most people are good at heart.Candy Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2007 Report Share Posted July 30, 2007 WELCOME TO THE GROUP CANDACE;; LOTS OF NEAT FOLKS HERE WHO ARE A BIG HELP TO HELP TO DEAL WITH OUR AILMENTS \HUGS DORTCandace <candacedw@...> wrote: I just joined. I'm from Dayton, OH and I have both RA and lupus. I have been retired for several years. Have been dealing with a lot of pain lately but I think I have been handling it the best I can. After a stint in the hospital a couple years ago, I bought this computer. Have "met" mostly nice people....but one in particular truly disappointed me and now we are no longer in touch. But I decided I would not let that discourage me from reaching out to others. Because I truly feel most people are good at heart.Candy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2007 Report Share Posted July 30, 2007 Oh, I remember those olden days when I lived in Chicago and had no lawn, no birds, and the beginning of the internet. We were among the first to get going. Good old days! As much as I love my life and my birds and my lawn now, I am over my limits. I'm so happy to be doing as well as I am, but you know.. Better would always be most acceptable to me. This summer it's been almost no illness because I simply get lazy when I need to. My problem has been itchy rash the last few years. This summer I noticed exactly when it begins, I go into my lazy mode, and then it calms down, before it really gets going. I've done it often enough to know just what to do. But now the birds are way behind, and I'm so glad to have enough pennies to hire a lady to help me catch up with my birds. Anyway. This must be the lady who wanted help with an article. I'm so glad you helped her out, I wasn't even sure if I had your address corrected, luckily I did. I remember you as the person who might help on some important thing, and I'm glad you did. I am so much out of touch these days, that I wouldn't even know what to do, so thank you mucho. I remember the New York Times article and that worked, I have a copy in my website, in case anyone wants to find it, I have no memory of how to get there, but I think it is there, some place. Speaking of memory, my ability to understand and to learn is still there, however slow, but my ability to recall words is really noticeable. It makes good jokes, but sometimes I do wonder. Sometimes I wonder if all these medications and diseases somehow addle the brain. Well, it's still good for a joke, but sometimes I wonder. I just realize that this message can go to the group, so I shall add the group address. Thanks for helping again, Love you all. Home page http://webpages.charter.net/tkufahl/tkufahl/ From: Koenig, Louise (ELS-WSH] Sent: Monday, July 30, 2007 8:56 AM To: Cat Triller; Kufahl Subject: RE: Hello Dear Carole and Tom, Thank you so much for getting back to me. Link had sent me an e-mail also. I have asked to send me one of the images as high-resolution, and he is looking into it. We also have a sister publication, Skin & Allergy News, whose editor would like to use the image in her publication. Would that be okay, and would we have permission to use this image on our websites as long as we credit the foundation? If you give me your addresses, I can send you both several copies of the publications. I can also send you a pdf of the article. Thanks again, Louise (By sending us your image, we will consider that you have the right to grant permission for the use of the material described above and hereby grant such permission. If you are not the owner of the material that we are applying for permission to reproduce, would you please supply the name and address of the person to whom our requests should be directed?) _____ From: Cat Triller Sent: Sunday, July 29, 2007 10:11 PM To: Koenig, Louise (ELS-WSH] Subject: Hello Hi Louise I'm the President of the International Stills Disease Foundation. I'd like to thank you for asking to utilize some of the information on our site. Your e-mail was fwd to me by our Founder Tom Kufahl, and I in tuen fwd your e-mail to . I'm sure he will be in touch soon. He's a great guy and will provide you with what you require. I wonder if we might have a copy, or could you let us know when the publication will be available. Getting the word out about Stills Disease is one of our missions. Thanking you in advance Carole Triller Pres Int'l SD Foundation _____ Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the <http://us.rd.yahoo.com/evt=40705/*http:/mrd.mail.yahoo.com/try_beta?.intl=c a> All-new Yahoo! Mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2007 Report Share Posted July 30, 2007 Oh, I remember those olden days when I lived in Chicago and had no lawn, no birds, and the beginning of the internet. We were among the first to get going. Good old days! As much as I love my life and my birds and my lawn now, I am over my limits. I'm so happy to be doing as well as I am, but you know.. Better would always be most acceptable to me. This summer it's been almost no illness because I simply get lazy when I need to. My problem has been itchy rash the last few years. This summer I noticed exactly when it begins, I go into my lazy mode, and then it calms down, before it really gets going. I've done it often enough to know just what to do. But now the birds are way behind, and I'm so glad to have enough pennies to hire a lady to help me catch up with my birds. Anyway. This must be the lady who wanted help with an article. I'm so glad you helped her out, I wasn't even sure if I had your address corrected, luckily I did. I remember you as the person who might help on some important thing, and I'm glad you did. I am so much out of touch these days, that I wouldn't even know what to do, so thank you mucho. I remember the New York Times article and that worked, I have a copy in my website, in case anyone wants to find it, I have no memory of how to get there, but I think it is there, some place. Speaking of memory, my ability to understand and to learn is still there, however slow, but my ability to recall words is really noticeable. It makes good jokes, but sometimes I do wonder. Sometimes I wonder if all these medications and diseases somehow addle the brain. Well, it's still good for a joke, but sometimes I wonder. I just realize that this message can go to the group, so I shall add the group address. Thanks for helping again, Love you all. Home page http://webpages.charter.net/tkufahl/tkufahl/ From: Koenig, Louise (ELS-WSH] Sent: Monday, July 30, 2007 8:56 AM To: Cat Triller; Kufahl Subject: RE: Hello Dear Carole and Tom, Thank you so much for getting back to me. Link had sent me an e-mail also. I have asked to send me one of the images as high-resolution, and he is looking into it. We also have a sister publication, Skin & Allergy News, whose editor would like to use the image in her publication. Would that be okay, and would we have permission to use this image on our websites as long as we credit the foundation? If you give me your addresses, I can send you both several copies of the publications. I can also send you a pdf of the article. Thanks again, Louise (By sending us your image, we will consider that you have the right to grant permission for the use of the material described above and hereby grant such permission. If you are not the owner of the material that we are applying for permission to reproduce, would you please supply the name and address of the person to whom our requests should be directed?) _____ From: Cat Triller Sent: Sunday, July 29, 2007 10:11 PM To: Koenig, Louise (ELS-WSH] Subject: Hello Hi Louise I'm the President of the International Stills Disease Foundation. I'd like to thank you for asking to utilize some of the information on our site. Your e-mail was fwd to me by our Founder Tom Kufahl, and I in tuen fwd your e-mail to . I'm sure he will be in touch soon. He's a great guy and will provide you with what you require. I wonder if we might have a copy, or could you let us know when the publication will be available. Getting the word out about Stills Disease is one of our missions. Thanking you in advance Carole Triller Pres Int'l SD Foundation _____ Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the <http://us.rd.yahoo.com/evt=40705/*http:/mrd.mail.yahoo.com/try_beta?.intl=c a> All-new Yahoo! Mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2007 Report Share Posted July 30, 2007 Oh, I remember those olden days when I lived in Chicago and had no lawn, no birds, and the beginning of the internet. We were among the first to get going. Good old days! As much as I love my life and my birds and my lawn now, I am over my limits. I'm so happy to be doing as well as I am, but you know.. Better would always be most acceptable to me. This summer it's been almost no illness because I simply get lazy when I need to. My problem has been itchy rash the last few years. This summer I noticed exactly when it begins, I go into my lazy mode, and then it calms down, before it really gets going. I've done it often enough to know just what to do. But now the birds are way behind, and I'm so glad to have enough pennies to hire a lady to help me catch up with my birds. Anyway. This must be the lady who wanted help with an article. I'm so glad you helped her out, I wasn't even sure if I had your address corrected, luckily I did. I remember you as the person who might help on some important thing, and I'm glad you did. I am so much out of touch these days, that I wouldn't even know what to do, so thank you mucho. I remember the New York Times article and that worked, I have a copy in my website, in case anyone wants to find it, I have no memory of how to get there, but I think it is there, some place. Speaking of memory, my ability to understand and to learn is still there, however slow, but my ability to recall words is really noticeable. It makes good jokes, but sometimes I do wonder. Sometimes I wonder if all these medications and diseases somehow addle the brain. Well, it's still good for a joke, but sometimes I wonder. I just realize that this message can go to the group, so I shall add the group address. Thanks for helping again, Love you all. Home page http://webpages.charter.net/tkufahl/tkufahl/ From: Koenig, Louise (ELS-WSH] Sent: Monday, July 30, 2007 8:56 AM To: Cat Triller; Kufahl Subject: RE: Hello Dear Carole and Tom, Thank you so much for getting back to me. Link had sent me an e-mail also. I have asked to send me one of the images as high-resolution, and he is looking into it. We also have a sister publication, Skin & Allergy News, whose editor would like to use the image in her publication. Would that be okay, and would we have permission to use this image on our websites as long as we credit the foundation? If you give me your addresses, I can send you both several copies of the publications. I can also send you a pdf of the article. Thanks again, Louise (By sending us your image, we will consider that you have the right to grant permission for the use of the material described above and hereby grant such permission. If you are not the owner of the material that we are applying for permission to reproduce, would you please supply the name and address of the person to whom our requests should be directed?) _____ From: Cat Triller Sent: Sunday, July 29, 2007 10:11 PM To: Koenig, Louise (ELS-WSH] Subject: Hello Hi Louise I'm the President of the International Stills Disease Foundation. I'd like to thank you for asking to utilize some of the information on our site. Your e-mail was fwd to me by our Founder Tom Kufahl, and I in tuen fwd your e-mail to . I'm sure he will be in touch soon. He's a great guy and will provide you with what you require. I wonder if we might have a copy, or could you let us know when the publication will be available. Getting the word out about Stills Disease is one of our missions. Thanking you in advance Carole Triller Pres Int'l SD Foundation _____ Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the <http://us.rd.yahoo.com/evt=40705/*http:/mrd.mail.yahoo.com/try_beta?.intl=c a> All-new Yahoo! Mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 Hi Glenda, WELCOME! Are you just starting Life Lift? It is so wonderful! Coni Hello LifeLift > My name is Glenda and I am 47, not married, living in > Mississippi...Thanks for letting me join. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 Hello Glenda, Welcome to LifeLift. I feel certain you will love all of the incredible women you will meet here. I am convinced that we have the cream of the crop right here in our group. It is so great to get to know you. I will be away for a short time, but I do try to check in as often as possible. I love this group. Be Healthy and take good care, Rashelle Harness the Powerful Benefits of Oxygen with LifeLift. Oxygen burns fat, tones muscles, reduces stress Be healthier with each breath you take with LifeLift www.lifelift.com Animated animals to entertain your whole family while you workout www.oxygenzoo.com Hello My name is Glenda and I am 47, not married, living in Mississippi...Thanks for letting me join. --------------------------------------------------- Letter content was scanned by WinAntiVirus Pro 2007. No threat detected. Please visit www.winantivirus.com for more details. Quote Link to comment Share on other sites More sharing options...
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