Here's the latest after having an appointment with my Rheumologist this afternoon:
I'm not out of the woods yet, "by far." Doc is going to ease me back onto my meds, starting one at a time, with each new one starting at 4 week intervals. He's holding off on the iv med indefinitely because if my kidney isn't fully healed/there's still some infection left over in it/if I've suffered kidney damage from the infection/surgeries, putting me on the iv med now could permanently damage my kidney to the point of losing function.
To rebuild my muscle loss (which is extensive) and stop my hair from falling out (I haven't mentioned that one, I know), I need to add more (animal) proteins to my eating. (Only reason this will be difficult is because I still don't have much of an appetite). (In addition to cutting back my sodium even more and watching foods like leafy greens & tea (as well as others like beets, chocolate, coffee, cola, nuts, rhubarb, spinach, black tea and wheat bran some of which I don't eat anyhow) because I get calcium oxalate kidney stones. My calcium levels are fine per my Urologist - it's the other foods & sodium which I have to worry about).
The only exercise he recommends indefinitely is walking and lifting no more than 2lb weights (if I want to), no yoga etc because I can injure very easily right now (and possibly not even know it right away) and don't want to permanently damage anything (else).
I had blood drawn today to check my kidney function levels, my vitamin D level and other things. (Kidney function will now be monitored every 4 weeks as well indefinitely).
Under no circumstances am I to get any kind of vaccines either (since I don't get the flu or pneumonia vaccines already because they make me seriously ill with flu/pneumonia, I doubt that leaves many others) because they could kill me (given my 100% tendency to only get flu/pneumonia when I get the shots).
Oh, and I discovered that my overall actual diagnosis is Rheumatoid (specifically Psoriatic) Arthritis/Ankylosing Spodilitis (spinal arthritis)/Fibromyalgia (forgive my spelling, I'm not sure that last one is correct). I knew about the PA and the AS but not the Fibro. (We had talked about it in the past, I remember that much, but I don't remember there being an official diagnosis - the nurse left my chart on the pc screen while I was waiting for him in the room and I saw it there). It makes so many things that go on with me make more sense!
Today (and literally every day) I am thankful for my husband and his amazing love for me.