Guest guest Posted December 22, 2011 Report Share Posted December 22, 2011 Hi ; Welcome to The group. You will be pleased with what you are giong to recieve from these wonderful people here on this site. I'm in this Still's disease now for over 4 years and have learned so much, I come and read almost every day that I can. I post once in a while . I wish the best for you and your daughter. You are going to have a great exchange with this group of people . You will get the compassion , kindness, careing, support here from people who know this disease very well. Please ask any question, because there are no question out of bounds and no wrong questions either. Again welcome, and very glad to have you with us. Â >________________________________ > >To: Stillsdisease >Sent: Thursday, December 22, 2011 4:42 PM >Subject: Hi, I'm a new member. > > >Â >Hellow everyone. I'd like to introduce myself. I'm Gins Spencer. I have a 29 yo daughter who has been diagnosed with AOSD for approx. 5 years. The first time they gave her a diagnosis of Lupus. Her ANA kept coming back alternating between pos. & neg. I suffer from other auto-immune disorders. I'm here to learn more about Still's to support her. Learn more about my illness, (which is very similar), and to help support others if I can. I am a 54 yo single Mom living with my almost 11 yo Brindle Boxer, Lucy. I've been to the Still's disease International Converence in Las Vegas in 2008. So I have had the opportunity to meet several of you. My daughter and I share the diagnosis of fibromyalgia. We also share Asthma and > >Â > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2011 Report Share Posted December 22, 2011 Thanks so much !! I'm looking forward to it although I flunked my first attempt at chat. I got there late and whoops! My heart goes out to each and every person who deals with this illness and other debilitating illnesses. Looking forward to learning the ropes, and making this a positive experience. [] > > Hi ; > Welcome to The group. You will be pleased with what you are giong to recieve from these wonderful people here on this site. I'm in this Still's disease now for over 4 years and have learned so much, I come and read almost every day that I can. I post once in a while . I wish the best for you and your daughter. You are going to have a great exchange with this group of people . You will get the compassion , kindness, careing, support here from people who know this disease very well. Please ask any question, because there are no question out of bounds and no wrong questions either. Again welcome, and very glad to have you with us. > Â > > > >________________________________ > >From: ginabomp ginabomp@... > >To: Stillsdisease > >Sent: Thursday, December 22, 2011 4:42 PM > >Subject: Hi, I'm a new member. > > > > > >Â > >Hellow everyone. I'd like to introduce myself. I'm Gins Spencer. I have a 29 yo daughter who has been diagnosed with AOSD for approx. 5 years. The first time they gave her a diagnosis of Lupus. Her ANA kept coming back alternating between pos. & neg. I suffer from other auto-immune disorders. I'm here to learn more about Still's to support her. Learn more about my illness, (which is very similar), and to help support others if I can. I am a 54 yo single Mom living with my almost 11 yo Brindle Boxer, Lucy. I've been to the Still's disease International Converence in Las Vegas in 2008. So I have had the opportunity to meet several of you. My daughter and I share the diagnosis of fibromyalgia. We also share Asthma and > > > >Â > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2011 Report Share Posted December 22, 2011 Thanks so much !! I'm looking forward to it although I flunked my first attempt at chat. I got there late and whoops! My heart goes out to each and every person who deals with this illness and other debilitating illnesses. Looking forward to learning the ropes, and making this a positive experience. [] > > Hi ; > Welcome to The group. You will be pleased with what you are giong to recieve from these wonderful people here on this site. I'm in this Still's disease now for over 4 years and have learned so much, I come and read almost every day that I can. I post once in a while . I wish the best for you and your daughter. You are going to have a great exchange with this group of people . You will get the compassion , kindness, careing, support here from people who know this disease very well. Please ask any question, because there are no question out of bounds and no wrong questions either. Again welcome, and very glad to have you with us. > Â > > > >________________________________ > >From: ginabomp ginabomp@... > >To: Stillsdisease > >Sent: Thursday, December 22, 2011 4:42 PM > >Subject: Hi, I'm a new member. > > > > > >Â > >Hellow everyone. I'd like to introduce myself. I'm Gins Spencer. I have a 29 yo daughter who has been diagnosed with AOSD for approx. 5 years. The first time they gave her a diagnosis of Lupus. Her ANA kept coming back alternating between pos. & neg. I suffer from other auto-immune disorders. I'm here to learn more about Still's to support her. Learn more about my illness, (which is very similar), and to help support others if I can. I am a 54 yo single Mom living with my almost 11 yo Brindle Boxer, Lucy. I've been to the Still's disease International Converence in Las Vegas in 2008. So I have had the opportunity to meet several of you. My daughter and I share the diagnosis of fibromyalgia. We also share Asthma and > > > >Â > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 Hey ! I am certainly glad you found us and welcome! I have had AOSD " officially " for seven years; although, I suspect I have had it all my life. I have found this group to be better to me, more understanding, compassionate, and even to set me straight when needsbe....in other words...a great FAMILY! Better than my own biological family. Like you, i have developed or discovered various side-effects along with Still's. The disease and ceratain meds have attempted to take me out twice....in 2008, i had to relearn to walk, talk, even sit up all over again. I average two weeks a year as my vacation in the Horsenpital! Yep, too much fun! You have a host of challenges to deal with...seems as if your daughter does too.....stay with us! Again, welcome ! With Much Love! Larry B. ________________________________ . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 Hey ! I am certainly glad you found us and welcome! I have had AOSD " officially " for seven years; although, I suspect I have had it all my life. I have found this group to be better to me, more understanding, compassionate, and even to set me straight when needsbe....in other words...a great FAMILY! Better than my own biological family. Like you, i have developed or discovered various side-effects along with Still's. The disease and ceratain meds have attempted to take me out twice....in 2008, i had to relearn to walk, talk, even sit up all over again. I average two weeks a year as my vacation in the Horsenpital! Yep, too much fun! You have a host of challenges to deal with...seems as if your daughter does too.....stay with us! Again, welcome ! With Much Love! Larry B. ________________________________ . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 Hi and welcome. I'm also kinda new to the group. I am glad you are here and I hope you and you're daughter are getting along ok this time of year. I also have similiar diagnosis as you, lupus, fibro, S'Jogrens, osteoarthritis and osteoporosis, and so on. I come on everyday to read posts but I don't post a lot. I am hoping to learn what other peoples histories of illnesses are and where I fit in the whole picture of things. I have learned a lot, and can relate to many. You will find lots of interesting things, some you already know and a lot that you don't, or didn't consider. Welcome again. Have a wonderful holiday to you and you're daughter and Lucy. Debi > > Hellow everyone. I'd like to introduce myself. I'm Gins Spencer. I have a 29 yo daughter who has been diagnosed with AOSD for approx. 5 years. The first time they gave her a diagnosis of Lupus. Her ANA kept coming back alternating between pos. & neg. I suffer from other auto-immune disorders. I'm here to learn more about Still's to support her. Learn more about my illness, (which is very similar), and to help support others if I can. I am a 54 yo single Mom living with my almost 11 yo Brindle Boxer, Lucy. I've been to the Still's disease International Converence in Las Vegas in 2008. So I have had the opportunity to meet several of you. My daughter and I share the diagnosis of fibromyalgia. We also share Asthma and Allergies. I have osteoarthritis, osteoporosis (using Forteo), degenerative disc disease, herniated C5-6, degenerated L-4. I have a left leg neuropothy. My daughter and I share a diagnosis of horrific migraines. I have had several injections of either Synvisc, and more recently Euflexxa in my knees and shoulders. My daughter has had gastroparisis, heart involvement, kidney involvement, skin ulcers (mostly on her face), skin rashes, joint pain, swollen lymph nodes all over, neuropathy all over her body. Her treatment is Kineret for 2 years. She has tried MTX for a brief time. Her weight is currently down very low with many flare ups from stress of moving to a new condo, from Northern California so she is close to me now. Her fiance is staying up there, but visits quit often. I am not convinced that I or my daughter have the correct diagnosis, but it is as close as it gets I think. I have Celiac, adrenal insufficiency and I have taken and take daily Cortisol injecitons which has caused many side effects. We both are loving and caring people with kind hearts and would give you the shirt off our back. One small problem, we need the energy! Fatigue and shortness of endurance is a huge problem. I will stop for now, but I hope this summary helps to initiate dialogue and forming new relationships/friendships that will lead to a positive experience for all parties. My daughter does not currently use the internet for social networking, but I hope she will soon. In the mean time, nice to meet all of you! Sincerely, ginabomp@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2011 Report Share Posted December 30, 2011 Hello , I am happy to meet you but I wish it was for a better reason. I just joined this group this year and I am so happy I did. I feel like a normal human being with everyone here. People without illness have a hard time understanding. Everyone here is so caring also and has lots of helpful ideas. I feel like I have a more positive attitude since I joined and if I do get down which we all do I know I can vent and everyone will understand and never complain because I vented. I hope you daughter will participate also. I think just the support makes a big difference in life!!!! Val ________________________________ From: Stillsdisease [mailto:Stillsdisease ] On Behalf Of ginabomp Sent: Thursday, December 22, 2011 6:42 PM To: Stillsdisease Subject: Hi, I'm a new member. Hellow everyone. I'd like to introduce myself. I'm Gins Spencer. I have a 29 yo daughter who has been diagnosed with AOSD for approx. 5 years. Moderated RH Quote Link to comment Share on other sites More sharing options...
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