Yeah, so I am updating on the Droid this post. Why? Because it is in my little girlie hands and I don’t have to sit up. I don’t know if I have girlie hands. Every time the nurses at the Brigham (and yes, it seems it is always at the Brigham they do this) try to start an IV in my hands they tell me how lovely my veins look (I’m dehydrated so they poke up but are unpokeable) and then they whack them hard to make the poke up more. I am bad at showing pain. There are three times I have ever involuntarily screamed in pain at something done… and yes, I had those biopsies and wire positionings without sedation… but the last hand IV got a good yip. Actually, I still have the knot from where it was spanked. That was… three months ago?
So, uh, my brain is working reasonably okay still with 40 mgs of prednisone. I am not going to be doing any quantum physics calculations, but usually I can find the door knob when in a room with a door.
Stamina sucks as much as ever since dropping the prednisone dose. I definitely do have happier kidneys, which might not be saying much… since kidneys aren’t known for being the most emotive organs. Personally, I feel like a big motherhonking angry ass spleen… but who wouldn’t? And last night was awesome in the sweating department, and we can just let imagination take over from there how my skin responded…
I do like having my brain moreso, and you know, I know these things do have their moments. And I know I am feeling really impatient. We know what is going on about as much as is possible with much of this stuff… but truthfully, the stuff science doesn’t know about much simpler things can curl your hair. Well, probably. Or straighten it. But it’s sort of a good idea to try the least crappy, safest, most likely to help things first and that isn’t so clear. I get it. I appreciate the thought being put in… I just friggin’ hate waiting. I hate THIS.
I see the ENT next week (she is an oncologist as well). I don’t know what she’s been briefed on in my case (I am sure she will be… the good part is that at this point, nobody is waiting till appointment time to read up on me). I always felt so bad that my sweet GP would send my records with a letter explaining that it would behoove to at least scan a day or two in advance of me (that’s a great sign… ugh) and it was pretty damn clear her note was shredded or has some stupid ass looking doodles of adrenal glands on it somewhere on the specialist’s desk. This might be the one place it does pay to be interesting medically.
Nah, the pay still sucks.