I have been having issues for about year, slowly built up, really had no idea, many doctors said I was fine, and so I just beleived them, and moved on....then some docs started to become enlightened...took some blood work, and it ends up I have SLE....If you asked me this summer, I would say I was feeling poorly, but now that I look back this summer was pretty good....Sept onward has been real tough on me...it just seems like things are worsening, not bettering...I know remission is the goal, but now it has been 3 months since an official diagnoses and treatments, and I am not really improved, if anything I feel worse physically...

mainly it is the fatigue, such utter fatigue that there should be another word to describe. It is more than just tired. It is like I have been hit by truck...The second issue is pain, pain in the joints, but now the doctor says a lot of the pain I describe sounds like an overlapping secondary condition of fibromyagia, on top of the Lupus joint/muscle pain. I don't really care what you call it, I hurt, I feel literally bruised, but have none really, and my hands are the worst, my hands really bother me, but then again so does so many other places...Rashes...they come and go, you know the "mylar rash," it has improved from before diagnoses, back then it was the rash was like my number 1 complaint and it drove me batty, but since the Prednisone and Plaquenil I have much much improved skin, though sometimes it flares up, when I have been out in the sun for sure it does, or at night, after a long day....at night sometimes I also have fevers, nothing crazy, like 100 or so, and not always, but like last week two days in a row, the fever and the rash seemed to come back a bit, but then like the next day it seemed a bit better, advil does help, and I also am on the Prednisone and Plaquenil which helps...but I still got that darn awful fatique and joint/muscle pain....and the fevers and rashes are not completely extinct either...

anyways, I had to quit work...it got that bad...you know it is bad, when you decide you got to quit work...I loved work.

I see the rheumatologist, but I have also just delved into chiropractic care, and acupuncture, and phsyical aquatic therapy...I am desperate, I grasp at straws...I just want to start feeling better...

I have found people have this need to ask how you feel, even the nurse on the phone from the doctor's, and they have this tone like they just want you to say you feel some improvement, and I even catch myself appeasing them....I know it is wrong, but I can tell they so want to hear the word improvement...and I even sometimes think maybe I can convince myself I am feeling better, and I will feel better, though it doesn't work, I think many positive thoughts, and the truth is, I am very sorry, but I don't feel improved, I surely don't feel like normal....
Living like this is quite the challenge...

I have decided to apply for a handicapped license plate. I just have so little energy and if I could just save some, by being able to park closer and such, perhaps I will not run out as quick...perhaps everyday things would be a little easier to do...

I have no idea what support is out there...
I mean financially this is devastating...
Had to quit my job...
I know there is SSDI, but I have heard nightmare stories about qualifying, and you got to wait 6 months anyways, and how do I get by til then? Is there any support services out there? Assistance? And I hear 6 months is rare, some people fight years....Then you get people who throw all this positive talk, like you will get better, yada yada, give it time, and I am all for positive talk, I really am trying it, but I know how I feel, and I know what I can and cannot do, and while I want nothing more but to be at work, I know it is not something I can do now. Then I meet these Super Lupus People, I say that with respect but frustration. There just seems to be that I have had the opportunity to meet all these people with Lupus who go about their lives like they are fine, and then there is me, and I am just like I don't know how you do it...It is beyond my capabilities and it may continue to be, and I think I need to face that reality as much as the idea of positive talk...

What is out there? Is there anything?

Oh, i am so overwhelmed....