Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 *Hello and Welcome Jaqueline,* *I am sorry that you have reason to be here but I am glad you found us. It's a lonely place when you have no one that can relate to your feelings and what your body is doing to you.--You have taken the first step in finding friends who share this dragon with you, and you have came to a great place for information.* ** *Do you have an appointment set up to see your Dr. soon? Is this a GP or a Rheumatologist? Are you currently taking medication for this? Sorry for the questions but the more we know the more supportive we can be and help in giving the right information to you.* ** *Again welcome and I'm looking forward to getting to know you. Once you find others who can relate to what you are going through and know exactly how you feel emotionally & mentally, it really does make you feel better.* ** *, Oregon* > > My name is Jaqueline Alvarez, I'm a new patient; just left the hospital on > March 24th , after the diagnosis was given. > > > -- SPEEDY :-) " Love endures all things. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Welcome Jaqueline; We hope you will make new friends here. It is really scarry at first but you can write to us any time night or day. We do offer free brochures that help explaine the disease in a one page pamphlet. If you would like some of these feel free to email Bob at Oldgoat378@... and give him your mailing address and he can send some for free. Hope your day is comfortable, Melt ----- Original Message ----- From: Jaqueline Alvarez My name is Jaqueline Alvarez, I'm a new patient; just left the hospital on March 24th , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Hi Jaqueline, welcome to the group. Sorry that you recieved that awful diagnosis of Stills. You have found the most comprehensive site available on the subject, most members have walked in your shoes, so we understand the changes you have gone through and will go through in the future. Feel free to ask questions, vent, rant or share in your good times here. Watch for the messages labelled " EDU " educational messages. These come from our research dept. and they are very helpful in answering questions. You can also go and look up past messages by searching using EDU as topic. Welcome once again... Lorie in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Welcome . I am Diane from Dallas, Texas. I'm glad you've found us. Hang in there; you will have better days. I was diagnosed in Nov. 2003. It took them 8 months to diagnose me and I just wanted to die before I had found out what was wrong with me because I was in so much pain and had rashes and high fever daily. I promise you it will get better with the right meds and the right rheumy. Take care. (P.S. Hi gang. I haven't been on for awhile. My mother passed last year and it has been a long road but I am back and feeling better). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Welcome Jaqueline I also was just diagnosised it is a bit scary but we aren't alone. Jaqueline Alvarez wrote: My name is Jaqueline Alvarez, I'm a new patient; just left the hospital on March 24th , after the diagnosis was given. I feel like I'm not the same person, everything about me has changed and would like to talk to other people like me, I have so many questions but I have only seen my dr. once since he gave the diagnosis. --------------------------------- LLama Gratis a cualquier PC del Mundo. Llamadas a fijos y móviles desde 1 céntimo por minuto. http://es.voice.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 NEW PATIENT My name is Jaqueline Alvarez, I'm a new patient; just left the hospital on March 24th , after the diagnosis was given. I feel like I'm not the same person, everything about me has changed and would like to talk to other people like me, I have so many questions but I have only seen my dr. once since he gave the diagnosis. --------------------------------- LLama Gratis a cualquier PC del Mundo. Llamadas a fijos y móviles desde 1 céntimo por minuto. http://es.voice.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Hello and welcome to the group Jaquelin.This is the place to ask questions ,not all are easy as it can be an unpredictable disease.Im soon turning 34 and was diagnosed in Oct 2002,and currently in drug free remmission.I hope you feel better soon,take care. d.Canada NEW PATIENT My name is Jaqueline Alvarez, I'm a new patient; just left the hospital on March 24th , after the diagnosis was given. I feel like I'm not the same person, everything about me has changed and would like to talk to other people like me, I have so many questions but I have only seen my dr. once since he gave the diagnosis. --------------------------------- LLama Gratis a cualquier PC del Mundo. Llamadas a fijos y móviles desde 1 céntimo por minuto. http://es.voice.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 Hi : Thanks for e-mailing me back. I just saw my doc. for the first time last friday, he is a Rheumatologist. I'm taking prednisone 30 mg, every day, plus ibuprofen 800mg, for pain. Every day I wake up feeling new things. This morning I wanted to go downstairs because I couldn't sleep (they had me taking ambien, but I just stopped them) and when I tried to give the first step, I felt a horrible pain in both ankles, thought it was going to be temporal, but the rest of this day have been even worse. I'd really like to keep having contact with you guys, like I said, I'm not the same person any more and all I've been doing since I got sick, is worry and feel sad. Thanks again, Jackie --------------------------------- LLama Gratis a cualquier PC del Mundo. Llamadas a fijos y móviles desde 1 céntimo por minuto. http://es.voice.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 Hi Jackie, It gets better, really it does. Unfortunately, the standard protocol seems to be trying prednisone for a while to see if you're going to have the type of still's that goes away quickly. Next step will probably be adding methotrexate and dropping to a lower dose of pred (my rheumy waited 3 months before adding this). Third step is usually an Anti-TNF drug like Enbrel. I think most docs like to hold off of these because of potential risks/side effects, and also because they can take several months to actually work. I would definitely ask for a stronger pain med if you feel the ibuprofen isn't cutting it. I take hydrocodone (sp?) (generic vicodin) which works well for me, although some people don't tolerate it well. What I like is that I can take a half to take the edge off mildish pain, or a whole one for more moderate, or two if I just want to knock myself out on a really bad day. Also call your insurance company and ask for a referral to a therapist when you're feeling up to it--ask for one who specializes in chronic illness and pain management. I read this message board but rarely posted for the first 6 months for the same reasons you list--I was just overwhelmed with sadness and worry, found myself weeping all the time. Now I still feel sad and teary eyed on occasion about being sick, but am much more hopeful most of the time. Maybe you'll be one of the lucky ones who goes into a quick, permanent, natural remission, but if not, remember that the first months are the hardest. Really. in Maine > I'm taking prednisone 30 mg, every day, plus ibuprofen 800mg, for pain. Every day I wake up feeling new things. This morning I wanted to go downstairs because I couldn't sleep (they had me taking ambien, but I just stopped them) and when I tried to give the first step, I felt a horrible pain in both ankles, thought it was going to be temporal, but the rest of this day have been even worse. I'd really like to keep having contact with you guys, like I said, I'm not the same person any more and all I've been doing since I got sick, is worry and feel sad. > Thanks again, > Jackie > > > > > --------------------------------- > > LLama Gratis a cualquier PC del Mundo. > Llamadas a fijos y móviles desde 1 céntimo por minuto. > http://es.voice.yahoo.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Jaqueline: welcome to our home and now yours . we are here and will help you all we can .. I also will say at lest for my self yes it has changed my life and in many more ways it is a better life then before . I have had stills for over 5 years now and still enjoy life better now then as I said before I had stills so welcome Home to an understanding place and warm people hugs all and lets kick some dragon butt okay! Marty -- NEW PATIENT My name is Jaqueline Alvarez, I'm a new patient; just left the hospital on March 24th , after the diagnosis was given. I feel like I'm not the same person, everything about me has changed and would like to talk to other people like me, I have so many questions but I have only seen my dr. once since he gave the diagnosis. Quote Link to comment Share on other sites More sharing options...
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