IT'S NOT LUPUS!! Ok... Then What?

    I went back to the rheumatologist yesterday--headache and all.  I've dug my heels (and bank account) in this far and I want a diagnosis.  Except now it's getting scary.  It's one thing to know your body enough to know something is wrong and have your gut know that this isn't just fibromyaglia and a virus, but to have not one, not two, but  three doctors agree with you while they try to figure it out, well... yeah.  The third, the new rheumatologist is determined to figure out just what "it" is, considering it definitely isn't neurological, tests confirmed it wasn't tick borne, hepatic, and most likely wasn't viral (unless today's test said otherwise), so off we go to autoimmune and the "other" category.  Unless it's Lyme--again.  The doc sent my test to a special private lab just to be on the safe side with that one.
     Turns out, no, it's not viral at all. I've been tortured with doxicycline for the past few years for NO reason because odds are the past few positive Lyme tests were false positives (dumbass doctors and their cheap ass, corner cutting tests!), and well, IT'S NOT LUPUS!  Sounds like something straight out of House, right?  Welcome to my life..but it gets better!  Okay, not really.  Kind of.
      I've been misdiagnosed for over a decade now.  I don't have Fibromyalgia (yay!).  I have an autoimmune disorder.  (Um. Yeah) Of that, the doc is 100% certain of.  Another 15 pages of lab results (but there were only like 8 vials, if that--nice!) ruled out RA, Lupus (I also have over a decade of labs to support those claims), anything involving my thyroid, muscle proteins, and a bunch of other stuff (I started to get really nervous as she checked off what it wasn't).  What is it?  I don't know. Well, we don't.  Not yet.  I have to go in for a CT scan of my chest and abdomen to either confirm sarcoidosis or send her to the next on the list (something similar, but she refused to tell me--I'm not sure if I know that's a good thing or not).  But I do know that I am that much closer to having a diagnosis.  Unfortunately, after dealing with it for over a decade, odds are, it's going to be something that I'm going to have to manage, instead of hope for remission of some sort.  And another bonus?  Glad I stopped taking the muscle relaxers that really weren't working--as we were talking about my prescriptions--what the doc would and wouldn't take over (and which doc should take over) it turns out that the muscle relaxer my still soon-to-be-fired rheumy (have to wait to straighten out the rx thing, which'll be another 6-8 weeks)  gave me fell out of favor because of its possible toxicity and highly addictive properties.  It's not SO toxic that the FDA pulled it off shelves (worse drugs are out there at the moment), but it fell out of favor years ago for a reason.  So he not only misdiagnosed me from the start, he tried to kill me.  Great. (I'll rant about his sorry arse later).
     But now reality is starting to sink in.  This is real.  It's one thing to learn about these diseases, to want to help others.  To have an invisible illness that you know isn't degenerative, but understand how hard it is to live a normal life just the same and raise awareness for all of them.  It's like looking through a window, feeling their pain, but at the same time thinking "thank God that isn't me."  Except now it is.  And now the stakes are higher.  Because before there was that tiny bit of hope that this was maybe just a virus--a series of lab errors.  But it's not. It's real. And it has a very real consequence.  I found out a few years ago I'm a match to be able to donate a kidney to my mom.  Having an autoimmune disorder like this--like most of them--automatically disqualifies me.  Nothing could be done earlier because I kept screwing up my knees and had to have surgery (or a few dozen stitches) and her blood pressure wasn't under control enough, but now it's too late.  But somehow she knew that already and already accepted it.  I wish it was that easy for me.  I can accept anything else that's thrown at me after a bit of processing, but this is definitely going to take awhile.