Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 *Hi Maura,* *The " Dragon " is our trademark or rather like a mascot. Since dragons are spitting fire and seem to be angry all the time, I guess the person who came up with this thought it very fitting for Still's since it's " angry " all the time--flaring and causing us some pretty bad health issues. Have you seen the Web site for the Still's foundation? It explains it better there.* ** *I have been pplagued with lung problems since I was born! And it is disease related--all of it. I have a deep wheezing and a " rattle " at times but so far all tests have been normal.* ** *At times, I feel so guilty for feeling as good as I do when I come here and see how bad off others are feeling. I have been battling this for 30+ yrs. now, and * *I had been doing pretty well until 2 yrs ago. Now I am living moment to moment, hoping and praying for a remission. And it is a wonderful feeling to find others who know exactly what we feel. * *I mean, it feels good to talk with Caroline the 1st and laugh because it takes us 30 minutes to an hour to put pantiehose on. It is a connection that no one but another Still's patient would understand and find funny.--One important thing to keep is our sense of humor with this dragon.--Or after brushing your hair, you have to lay down which leads to you taking a nap that lasts longer than 2 hours and you wake thinking it's the next day.* *I am glad you found us here. At least now you have people who can relate.* ** *I hope I helped a little with your inquiries.* ** *, Oregon* > > Hi, all. > Has anyone experienced lung involvement with this stupid disease? I'm > having a bronchoscopy on Tuesday relative to some " flattening " they found in > my right lung on a CT scan. I never gave the pulmonary doctor much > information about the Still's, because it didn't occur to me that the two > could be related. Any feedback you can provide would be most appreciated. > > Maura in Texas > > C J wrote: > When you have a FUO (fever of unknown origin) along with rash and body > wide aches and pains, part of the diagnosis of AOSD includes testing for > many auto immune diseases. This is due in part to the fast the AOSD is a > diagnosis of exclusion. Some common tests performed to rule out other issues > are bone marrow biopsies, aspirations and cultures, TB testing, angiotension > tests, and testing for things like cytomeglovirus, Epstein Barr Virus, AIDs, > Cancers, Lupus, etc. > > Here is information on the Lupus testing, what the results mean and > answers to commonly asked questions. By the time you get done with these, > you will know quite a bit on this disease OR just read the first link to > help you understand what the readings on your ANA mean. You did ask your > doctor for copies of your lab tests, didn't you? If not, you can. Keep them > in a file in case you need them for a new doctor in the future. > > I am ANA positive with Anti-dsDNA and speckled pattern. I don't remembe > the rest of the results. Sorry this was late this week. Life got in the way. > You know how that is. > > Smiles, Caroline 1 > > http://www.ghg.net/schwerpt/ASLFAQ/diag.htm This web link breaks down > the ANA tests and explains a bit on what they are and what they mean. Pretty > great link. > > http://www.niams.nih.gov/hi/topics/lupus/slehandout/#Lupus_5 Web link > provided by the National Institute of Arthritis, Musculoskeletal and Skin > Diseases. > > http://www.uklupus.co.uk/ana.html The ANA test and what it means. Be > sure to look at the links on the top of this page. They include things like > information, facts, symptoms, diagnosis / tests, treatment, practical and > other. There are also links at the very top and sides of this page to Lupus > clinical trials, information on Sjogrens, RA, etc. > > http://www.lupus.org/education/faq.html Frequently asked questions about > Lupus. Answers by the Lupus Foundation of America. > > > > (Beautiful Southern Oregon, USA) > > We may not be able to change the direction of the wind, but we can adjust > our sails. > > May you have enough happiness to make you kind, enough trials to make you > strong, enough sorrow to keep you human, enough hope to make you happy. > > > > > > > > --------------------------------- > Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just > 2¢/min with Yahoo! Messenger with Voice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 Hi Maura; I to have lug stuff with this in the form of nodgels and also a bit of what they call harding of the lug mainly the right side but both are into it . I do get more breathless at times but I still carry onas a crazy man most of the days just have to shut down now and then to rest the old man bod so that I can act like a kid again hugs all and lets kick some dragon butt okay! Marty -- New member Question Hi, all. Just joined, and am gobsmacked that there's even a group out there that can relate to what's been " bugging " me my whole life. I have to say bugging " me, because from what I'm reading in your messages, I'm one of the luckier folks. Or at least I have been... Has anyone experienced lung involvement with this stupid disease? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 Marty, and all who have answered today - I can't tell you how grateful I am to know that there are people out there who give a hoot, and mostly who understand !! My whole life I've felt like I've had to explain myself, or why I feel crummy, and if it isn't cancer or MS or something people are more familiar with, you get these vacant looks from people. Bless you all. Also, if you would, keep me in your thoughts on Tuesday. I'm having this bronchoscopy done, and I'm terrified. Plus, it's looking like the man I've been seeing for the last two months doesn't belong on the pedestal I gave him, so that just adds to the list. Nothing I can't handle, but knowing there's a supportive group of folks out there helps immensely. For those of you who celebrate it, Happy Passover, Easter or Pastover.... cheers ! " huntman1958@... " wrote: Hi Maura; I to have lug stuff with this in the form of nodgels and also a bit of what they call harding of the lug mainly the right side but both are into it . I do get more breathless at times but I still carry onas a crazy man most of the days just have to shut down now and then to rest the old man bod so that I can act like a kid again hugs all and lets kick some dragon butt okay! Marty -- New member Question Hi, all. Just joined, and am gobsmacked that there's even a group out there that can relate to what's been " bugging " me my whole life. I have to say bugging " me, because from what I'm reading in your messages, I'm one of the luckier folks. Or at least I have been... Has anyone experienced lung involvement with this stupid disease? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 Maura: well keep you in our prays for Tuesday . And I know what you mean by the blank look you get. Heck I get it from docs even now and then . I know I to all my life have been ill on and off not like the normal things but deferent . Okay am but not PM or the other way around . Even then my own parents who think I was playing games it also made it fun keeping a job some times too. About some one your seeing been there done that to fact stills was a big part of my devorce but after many try's and always hitting the sucker pool I got a winner now been with her for almost two years now and each day is as good if not better then the first . One thing I did learn along the way after I put my ex on one that is . I now never put any one on a pedestal as it only makes if farther for them to fall . We all have our plus's and degs but comparability and simuler likes works the best for my self . Did the deferent ,almost the same ,and well now have as close as the same as I think a man and woman could be and it is wonderful -- Re: New member Question Marty, and all who have answered today - I can't tell you how grateful I am to know that there are people out there who give a hoot, and mostly who understand !! My whole life I've felt like I've had to explain myself, or why I feel crummy, and if it isn't cancer or MS or something people are more familiar with, you get these vacant looks from people. Bless you all. Also, if you would, keep me in your thoughts on Tuesday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 Welcome, Maura, and yes, I'll put you on my " sending positive vibes " list for Tuesday. When you have a minute, please post some " herstory " about yourself to introduce yourself to the group. I know what you mean about the " huh? what? huh? " stuff. Even my own mother in law says, " how's it going with the 'shingles' thing? " or " how's that shrill's disease treatin' you? " I know Bob has brochures available, but I'd really like to make a short, perhaps animated (maybe claymation?) film (we could feature a clay dragon... how cool!) that would include scenes like the pantyhose debacle the other described... the stair climbing/wobbling railing wars... the change-the-sheets-at-2-a.m.-nightsweats-party... the whoops I fell asleep on the couch in mid-afternoon AGAIN and my skirt hiked up and now the neighbors have seen my skivvies through our double french doors adventure... So much material to choose from! in Maine listserv is such a lifevest. > > Marty, and all who have answered today - I can't tell you how grateful I am to know that there are people out there who give a hoot, and mostly who understand !! My whole life I've felt like I've had to explain myself, or why I feel crummy, and if it isn't cancer or MS or something people are more familiar with, you get these vacant looks from people. Bless you all. Also, if you would, keep me in your thoughts on Tuesday. I'm having this bronchoscopy done, and I'm terrified. Plus, it's looking like the man I've been seeing for the last two months doesn't belong on the pedestal I gave him, so that just adds to the list. Nothing I can't handle, but knowing there's a supportive group of folks out there helps immensely. For those of you who celebrate it, Happy Passover, Easter or Pastover.... cheers ! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 Thanks for the advice. This guy is way too different for us to last. C'est la vie... ;o) Thanks, also, for the good thoughts, and kudos on finding someone great. They're few and far between. " huntman1958@... " wrote: Maura: well keep you in our prays for Tuesday . And I know what you mean by the blank look you get. Heck I get it from docs even now and then . I know I to all my life have been ill on and off not like the normal things but deferent . Okay am but not PM or the other way around . Even then my own parents who think I was playing games it also made it fun keeping a job some times too. About some one your seeing been there done that to fact stills was a big part of my devorce but after many try's and always hitting the sucker pool I got a winner now been with her for almost two years now and each day is as good if not better then the first . One thing I did learn along the way after I put my ex on one that is . I now never put any one on a pedestal as it only makes if farther for them to fall . We all have our plus's and degs but comparability and simuler likes works the best for my self . Did the deferent ,almost the same ,and well now have as close as the same as I think a man and woman could be and it is wonderful -- Re: New member Question Marty, and all who have answered today - I can't tell you how grateful I am to know that there are people out there who give a hoot, and mostly who understand !! My whole life I've felt like I've had to explain myself, or why I feel crummy, and if it isn't cancer or MS or something people are more familiar with, you get these vacant looks from people. Bless you all. Also, if you would, keep me in your thoughts on Tuesday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 Welcome Maura. I have to agree with about making an animated short feature. Maybe it would help others to understand (or not) but at least we could all get a little laugh out of it. The 2am night-drench party would be interesting ---been doing it for the past few weeks! I have a couple changes of clothes out so I can change out of the " wet ones " & get back to bed don't want to miss out on ANY sleep if possible Chris wrote: Welcome, Maura, and yes, I'll put you on my " sending positive vibes " list for Tuesday. When you have a minute, please post some " herstory " about yourself to introduce yourself to the group. I know what you mean about the " huh? what? huh? " stuff. Even my own mother in law says, " how's it going with the 'shingles' thing? " or " how's that shrill's disease treatin' you? " I know Bob has brochures available, but I'd really like to make a short, perhaps animated (maybe claymation?) film (we could feature a clay dragon... how cool!) that would include scenes like the pantyhose debacle the other described... the stair climbing/wobbling railing wars... the change-the-sheets-at-2-a.m.-nightsweats-party... the whoops I fell asleep on the couch in mid-afternoon AGAIN and my skirt hiked up and now the neighbors have seen my skivvies through our double french doors adventure... So much material to choose from! in Maine listserv is such a lifevest. > > Marty, and all who have answered today - I can't tell you how grateful I am to know that there are people out there who give a hoot, and mostly who understand !! My whole life I've felt like I've had to explain myself, or why I feel crummy, and if it isn't cancer or MS or something people are more familiar with, you get these vacant looks from people. Bless you all. Also, if you would, keep me in your thoughts on Tuesday. I'm having this bronchoscopy done, and I'm terrified. Plus, it's looking like the man I've been seeing for the last two months doesn't belong on the pedestal I gave him, so that just adds to the list. Nothing I can't handle, but knowing there's a supportive group of folks out there helps immensely. For those of you who celebrate it, Happy Passover, Easter or Pastover.... cheers ! > Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html The materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 Hi . I had to smile at your post re the trials and tribulations of us stills sufferers and know exactly what you mean about getting on the pantyhose etc. I don't know where we would be without our sense of humour. I'm sure between us we could write a best seller !!!!! Hope you are having a good day today. Love Joan U.K. Re: New member Question Welcome, Maura, and yes, I'll put you on my " sending positive vibes " list for Tuesday. When you have a minute, please post some " herstory " about yourself to introduce yourself to the group. I know what you mean about the " huh? what? huh? " stuff. Even my own mother in law says, " how's it going with the 'shingles' thing? " or " how's that shrill's disease treatin' you? " I know Bob has brochures available, but I'd really like to make a short, perhaps animated (maybe claymation?) film (we could feature a clay dragon... how cool!) that would include scenes like the pantyhose debacle the other described... the stair climbing/wobbling railing wars... the change-the-sheets-at-2-a.m.-nightsweats-party... the whoops I fell asleep on the couch in mid-afternoon AGAIN and my skirt hiked up and now the neighbors have seen my skivvies through our double french doors adventure... So much material to choose from! in Maine listserv is such a lifevest. > > Marty, and all who have answered today - I can't tell you how grateful I am to know that there are people out there who give a hoot, and mostly who understand !! My whole life I've felt like I've had to explain myself, or why I feel crummy, and if it isn't cancer or MS or something people are more familiar with, you get these vacant looks from people. Bless you all. Also, if you would, keep me in your thoughts on Tuesday. I'm having this bronchoscopy done, and I'm terrified. Plus, it's looking like the man I've been seeing for the last two months doesn't belong on the pedestal I gave him, so that just adds to the list. Nothing I can't handle, but knowing there's a supportive group of folks out there helps immensely. For those of you who celebrate it, Happy Passover, Easter or Pastover.... cheers ! > Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html The materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 Hi Maura Just to wish you well for Tuesday and the bronchcoscopy. Glad you are finding the group helpful. Take care Best wishes Joan U.K. New member Question Hi, all. Just joined, and am gobsmacked that there's even a group out there that can relate to what's been " bugging " me my whole life. I have to say bugging " me, because from what I'm reading in your messages, I'm one of the luckier folks. Or at least I have been... Has anyone experienced lung involvement with this stupid disease? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Hi Maura nice to meet you. Welcome to the family! I have asthma. I was dx with still's 3 years ago but had ra since I was 11. I am 33 now. I also have chronic sinusitis. I hope this helps. We call still's a dragon. Its very fitting since Still's make us feel like we are being attacked by a dragon...... I hope all is well, Love Sharon xxoo > Hi, all. Just joined, and am gobsmacked that there's even a group > out there that can relate to what's been " bugging " me my whole > life. I have to say " bugging " me, because from what I'm reading in > your messages, I'm one of the luckier folks. Or at least I have > been... > > Has anyone experienced lung involvement with this stupid > disease? I'm having a bronchoscopy on Tuesday relative to some > " flattening " they found in my right lung on a CT scan. I never > gave the pulmonary doctor much information about the Still's, > because it didn't occur to me that the two could be related. Any > feedback you can provide would be most appreciated. > > Also, can someone fill me in on the dragon analogy? For someone > who's had this crummy disease for 48 years, that's new to me. > Thanks !! > > Maura in Texas > > C J wrote: > When you have a FUO (fever of unknown origin) along with rash and > body wide aches and pains, part of the diagnosis of AOSD includes > testing for many auto immune diseases. This is due in part to the > fast the AOSD is a diagnosis of exclusion. Some common tests > performed to rule out other issues are bone marrow biopsies, > aspirations and cultures, TB testing, angiotension tests, and > testing for things like cytomeglovirus, Epstein Barr Virus, AIDs, > Cancers, Lupus, etc. > > Here is information on the Lupus testing, what the results mean > and answers to commonly asked questions. By the time you get done > with these, you will know quite a bit on this disease OR just read > the first link to help you understand what the readings on your ANA > mean. You did ask your doctor for copies of your lab tests, didn't > you? If not, you can. Keep them in a file in case you need them for > a new doctor in the future. > > I am ANA positive with Anti-dsDNA and speckled pattern. I don't > remembe the rest of the results. Sorry this was late this week. > Life got in the way. You know how that is. > > Smiles, Caroline 1 > > http://www.ghg.net/schwerpt/ASLFAQ/diag.htm This web link breaks > down the ANA tests and explains a bit on what they are and what > they mean. Pretty great link. > > http://www.niams.nih.gov/hi/topics/lupus/slehandout/#Lupus_5 Web > link provided by the National Institute of Arthritis, > Musculoskeletal and Skin Diseases. > > http://www.uklupus.co.uk/ana.html The ANA test and what it means. > Be sure to look at the links on the top of this page. They include > things like information, facts, symptoms, diagnosis / tests, > treatment, practical and other. There are also links at the very > top and sides of this page to Lupus clinical trials, information on > Sjogrens, RA, etc. > > http://www.lupus.org/education/faq.html Frequently asked > questions about Lupus. Answers by the Lupus Foundation of America. > > > > (Beautiful Southern Oregon, USA) > > We may not be able to change the direction of the wind, but we can > adjust our sails. > > May you have enough happiness to make you kind, enough trials to > make you strong, enough sorrow to keep you human, enough hope to > make you happy. > > > > > > > > --------------------------------- > Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for > just 2¢/min with Yahoo! Messenger with Voice. > > Quote Link to comment Share on other sites More sharing options...
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