Wow! Priscilla, WOW! OWWW!!! a bone marrow biopsy? They must have suspected something worse than lupus in order to do one of those. My sister had to have one for diagnosis on her Waldenstrom's. She equated it to a shattered bone, only worse. She'd know, since she shattered her leg in a fall a few years ago, which is what started the process toward them finding the cancer.
Like Steve, I do NOT recommend quitting meds, especially without medical supervision. Finding that 'balance' as Steve mentions, is key to your situation. It might take quite a while to accomplish, and may involve changing doctors and/or altering your lifestyle and/or meds/therapy. Steve decided to quit work. Me, I'm 4 years from being able to do "early" retirement (60), and that's my goal, but I might not make it there. If I do, my financial situation, both monthly income and medical insurance will be much better, but I do have alternative plans that can be implemented, though they're much less desireable. But I'll do what necessary. Planning is part of the process, but I do NOT have plans that allow for *any* of my medical stuff to "rule" me. They might limit what I do, how I do it, etc., but I'm the one that makes the choice. One foot in front of the other, one at a time. Don't just give up. Talk with your doctors about how you feel. Then tell them again. If you don't get anywhere with them, change doctors. I know each person's finances and insurance play a major part in their decisions, and you may have to find yourself an 'advocate' to help you with this all.
Welcome to the forums, and be sure and check-out all the "stickie" threads at the top of most sections of the board. btw, This is an excellent place to 'vent'. Lot's of good listeners.
"There but for the grace of God, go I."
"... His mercy endureth for ever."