Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Hello Judy!! My name is and I am from Texas, 23 years old. I was diagnosed with Adult onset stills disease two months ago. I also have thyroid problems on top of everything else. I just wanted to welcome you to the group and if you ever need to vent or ask questions this is the place to be. There are alot of friendly people here. Hope you are having a good day. > > > Hello, > My name is Judy and I live in SE Lower Michigan. > I will be turning 59 on 06/21. > > I was originally diagnosed with UCTD in 1998, after a total hysterectomy and > then with full blown Lupus SLE in Aug. of 2000. > > I am trying to figure out the difference between Stills and Lupus. > It sounds so similar from the bit I have read about it. > > I stopped working in 2003. Got an attorney and went on SSDI. > That helped a lot. Luckily, It only took 5 months. > Nice not to HAVE to be somewhere at a certain time when you can barely dress yourself. > My worst problem seemed to be my wrists and hands. > Then tops of feet and ankles started swelling. > > I was told it was the Pred. > Made working quite difficult because I walked a lot.. > Then knees started locking up...... > > I also have mitral valve prolapse since the early '80's. > Later on, the fast heart beat seemed to turn into an irregular heartbeat and then atrial fib. > For some reason, I had several bouts of that in late 2003 and early 2004. > I ended up on Coumadin which made my Rheumy happy as he had tried to put me on it in 2000 because of being high risk for, I forget " ...thick blood???? > and was afraid I'd get clots. > > I am also on low dose Pred ( 6-7 mg. daily) and Plaquenil (400mg. daily) and other assorted meds for this n' that. > > I have a very good sense of humor which I think has seen me through a lot of this " crap " ... > > At this time, I seem to be pretty stabilized. I have managed to keep myself out of the ER and hospital for several years. (knock on wood) > In all honesty, I haven't seen a Rheumy in 2 years as the one I liked was replaced with one I didn't care for. > I really couldn't handle the hour and a half drive there and then back again. > After sitting in a car that long and usually with the sun coming in on me, I was miserable by the time I got there. > Feet swollen, stiff, walking like a 90 year old... > And the next day, I hurt even worse. > > So, I stopped going. > > I see my local PCP and he does blood work from time to time and refills my meds. > He told me he is working on getting a Rheumy to come to our town a couple times a week at least. > > I do have some bad days, especially when we are having these 45º, chilly, cloudy, rainy days. > Achy knees, wrists and hands. Stiff neck, achy lower back. > I seem to be a lot cooler than most people. Probably the Coumadin.. > Hate AC. Makes me ache. Never use mine. > > I sometimes get weird looking lumps on the top of my hands and sometimes bottoms of feet feel like I am walking on marbles. > PCP taught me how to adjust Pred for these times and I do pretty good. > Sometimes they go as fast as they came. > > Mostly, I try to ignore a lot unless it is something I haven't experienced or puts me in a whole lotta of pain. > I usually go out in the evenings if I have to go anywhere. Being in the sun, well, I pay for it the next day by hardly being able to move. > > Currently I take one 50mg Ultram for pain. But, there have been days when I have taken two. > I consider myself to be very, very fortunate to not be as sick as a lot of others. (knock on wood again) > I have never dealt with depression and feel bad for those who have to. > > I like to keep reading and learning. > > I guess that is about it. > Judy > > > > > Quote Link to comment Share on other sites More sharing options...
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