Guest guest Posted September 13, 2011 Report Share Posted September 13, 2011 Okay. I too have been bad about posting lately. I think the last time I posted was about cracking teeth. I have had 4 crack in the last month. I saw a new rheumy last week and he wants to start testing from scratch again. He thinks it is not Still's that I have, because the rash wasn't the right color in his office. Now, he thinks it might be Mixed Connective Tissue disease. I am so frustrated. So, anyway I don't know if I still technically belong with this group, but I hope I can stick around, because I feel like I have so much in common with you all. You are all like family to me. I don't know what you call my disease but it is about to wear me down. I had been in a semi-remission but now it is all flared up again and I have a fever and can barely move. I brought this last flare on myself, I went hiking with my husband and children to look for sharks teeth. I am miserable now, but I still say it was worth it. I refuse to let this get me down, and I will continue to push myself to spend quality time with my family. Hugs, Tracie in D.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2011 Report Share Posted September 13, 2011 Dear Traci and anyone suffering illness,We haven't cared what you suffer from and if you have Still's or your dignoses has changed we have always welcomed those into our family that want to be here. A few of our members have been with our family for years without Still's and we value them as much as anyone else.My heart goes out to you and I totally understand doing what is happy and it being worth it. I have done just that many many times over the years. I hope this passes for you soon and you'll be back out looking for something else just as fun and interesting.Many thoughts to feeling better and thank you for checking in. Btw, some I have emailed privately so no one is being left out just so you understand.Good evening From: wareaglefamily@... Subject: RE: About Posting I saw a new rheumy last week and he wants to start testing from scratch again. He thinks it is not Still's that I have,. So, anyway I don't know if I still technically belong with this group, but I hope I can stick around, because I feel like I have so much in common with you all. You are all like family to meHugs, Tracie in D.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2011 Report Share Posted September 14, 2011 Hi , I hope you feel better soon. I so understand your frustration. I am sorry you are going through this and your doc isn't sure what you have, but when it comes right down to it, it doesn't matter what you have. It's an auto-immune disease and it's chronic and it makes you feel cruddy! When I talk to my best friend and she has been really down lately (in the last two and a half years she has lost 5 people (3 immediate family members)) and we talk about how she needs to just focus on one day and sometimes one hour at a time instead of looking at what she has to do for the week, because she gets overwhelmed and that makes her even more upset. I had to do this and still do it whenever I have to spend long periods of time in bed. If I don't, I start to lose it and my patience goes out the door. This may or may not help you, but I know when I remind myself to do this it helps me. When I forget to do this, I get all wound up and even more frustrated and upset with being sick. We have the right to be frustrated, don't get me wrong, but I know with me that if I let it linger to long that the stress of that frustration builds up and makes me worse. I don't know if that happens with anyone else, but it does with me. So I have to let it go because the stress is not good for me. Anyway, I am glad you are a part of the family, and I hope you feel better soon. Hugs, Alli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2011 Report Share Posted September 19, 2011 Oh Tracie stay strong. It is so frustrating to do a little something fun and then pay. I just hate the fevers. I can feel them coming on about 30 minutes before it is high. I get a weird feeling in my forhead. When I was in the hospital I always amazed the nurses because I would say I am getting a fever and sure enough here it was. Any how I hope you are better soon Stay well Val RH Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2011 Report Share Posted September 19, 2011 Oh Tracie stay strong. It is so frustrating to do a little something fun and then pay. I just hate the fevers. I can feel them coming on about 30 minutes before it is high. I get a weird feeling in my forhead. When I was in the hospital I always amazed the nurses because I would say I am getting a fever and sure enough here it was. Any how I hope you are better soon Stay well Val RH Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2011 Report Share Posted September 19, 2011 Alli I completely understand. My anxiety goes out the roof and there is not enough meds in the world for it. I find my self living in denial a lot and just dealing with things when I really have to because I cant take it. Oh well a person just does what works and copes as best as we can. Stay well Val RH Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2011 Report Share Posted September 19, 2011 Alli I completely understand. My anxiety goes out the roof and there is not enough meds in the world for it. I find my self living in denial a lot and just dealing with things when I really have to because I cant take it. Oh well a person just does what works and copes as best as we can. Stay well Val RH Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2011 Report Share Posted October 7, 2011 Hi! everyone I send a post a couple of days but I think it didnt went through. Is not easy for me to post because I dont have a computer at home but I found a library near me and hopefully I would try to post more often. Okey so my name is and I would like to ask a question, Im having so much pain in my legs, and Im just tired that I cant enjoy to do my shopping. I would like to know if somebody in the group has ask for a wheel chair and if it has had the same problem as mine. What is it that I have to do to apply for one who should I ask? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2011 Report Share Posted October 7, 2011 Hi! everyone I send a post a couple of days but I think it didnt went through. Is not easy for me to post because I dont have a computer at home but I found a library near me and hopefully I would try to post more often. Okey so my name is and I would like to ask a question, Im having so much pain in my legs, and Im just tired that I cant enjoy to do my shopping. I would like to know if somebody in the group has ask for a wheel chair and if it has had the same problem as mine. What is it that I have to do to apply for one who should I ask? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 Hy i wan to ask u guys if wen you get a flar do all the bones of your body hurt and the head and back i ask cus my wife wake up today wit feaber and pain she have stills for 5 years but she was doing ok untill now. Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 Hy i wan to ask u guys if wen you get a flar do all the bones of your body hurt and the head and back i ask cus my wife wake up today wit feaber and pain she have stills for 5 years but she was doing ok untill now. Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 Hi, When I have a flare I have high fevers and joint pain all over. Sometimes I feel as if I cannot even stand up. Everything hurts from my head to my feet. I hope your wife feels better soon. Angie Sent from my iPhone > Hy i wan to ask u guys if wen you get a flar do all the bones of your body hurt and the head and back i ask cus my wife wake up today wit feaber and pain she have stills for 5 years but she was doing ok untill now. > > Sent from my iPhone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 Hi, When I have a flare I have high fevers and joint pain all over. Sometimes I feel as if I cannot even stand up. Everything hurts from my head to my feet. I hope your wife feels better soon. Angie Sent from my iPhone > Hy i wan to ask u guys if wen you get a flar do all the bones of your body hurt and the head and back i ask cus my wife wake up today wit feaber and pain she have stills for 5 years but she was doing ok untill now. > > Sent from my iPhone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 What internal organs does stills damage? Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 What internal organs does stills damage? Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 for most cases, possible to liver, spleen, heart, lymph glands, joints. Less common, kidney. However, sometimes hard to tell what might be due to Stills and what might be due to drugs we are on. Tom > > What internal organs does stills damage? > > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 Hi, Tom........btw, Hadz doc said that it affects all organs - skin included. (Fyi, she was diagnosed officially with Systemic JIA...many feel that Stills/systemic JIA is not the same. I don't really see a difference.) But it's true, many issues can be complicated due to severe meds. B. West Re: About Posting for most cases, possible to liver, spleen, heart, lymph glands, joints. Less common, kidney. However, sometimes hard to tell what might be due to Stills and what might be due to drugs we are on. Tom > > What internal organs does stills damage? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 Hi, Tom........btw, Hadz doc said that it affects all organs - skin included. (Fyi, she was diagnosed officially with Systemic JIA...many feel that Stills/systemic JIA is not the same. I don't really see a difference.) But it's true, many issues can be complicated due to severe meds. B. West Re: About Posting for most cases, possible to liver, spleen, heart, lymph glands, joints. Less common, kidney. However, sometimes hard to tell what might be due to Stills and what might be due to drugs we are on. Tom > > What internal organs does stills damage? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 How long does a flare last Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 How long does a flare last Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2011 Report Share Posted October 9, 2011 ,  There's not really an answer as it varies so much.  In my experience flares can come in clusters, often lasting days or weeks and the 'gaps' between can be months or years.  Carole UK >To: " Stillsdisease " <Stillsdisease > >Sent: Saturday, 8 October 2011, 21:54 >Subject: Re: Re: About Posting > > > >How long does a flare last > >Sent from my iPhone > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2011 Report Share Posted October 9, 2011 ,  There's not really an answer as it varies so much.  In my experience flares can come in clusters, often lasting days or weeks and the 'gaps' between can be months or years.  Carole UK >To: " Stillsdisease " <Stillsdisease > >Sent: Saturday, 8 October 2011, 21:54 >Subject: Re: Re: About Posting > > > >How long does a flare last > >Sent from my iPhone > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2011 Report Share Posted October 9, 2011 Hi ,So good to hear from you. I hope you're ok these days besides the bad legs. I used to ask my doctor and depending on my insurance they would pay for the rental because I didn't have to have a permanent one.Good luck, I would like to know if somebody in the group has ask for a wheel chair and if it has had the same problem as mine. What is it that I have to do to apply for one who should I ask? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2011 Report Share Posted October 9, 2011 Hi ,So good to hear from you. I hope you're ok these days besides the bad legs. I used to ask my doctor and depending on my insurance they would pay for the rental because I didn't have to have a permanent one.Good luck, I would like to know if somebody in the group has ask for a wheel chair and if it has had the same problem as mine. What is it that I have to do to apply for one who should I ask? Quote Link to comment Share on other sites More sharing options...
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