K. So anyone out there with chronic disease who has figured out how to live with chronic illness and NOT let it consume you when you pretty much can't do anything but sit on the couch, or lay in bed. Hmmm??? Anyone? Bueller?
Ug. So sick of this. So sick of judgement and people looking at me like I'm crazy because I'm ready to do some higher risk stuff in order to feel better. Obviously what we've been doing isn't working, so....what choice do I have? I will not sit by and let this disease take me away from my family without a fight. Because I WILL.NOT.LIVE.LIKE.THIS.ANYMORE!!! I'm not going to sit around while my son is at someone else's house 4 days a week because I can't take care of him. To he!! with that. I'm going to get better or die trying. I'm DONE.
I'm feeling a little better right now...my brain isn't quite so foggy. (I'm getting my fiesty back, if ya hadn't noticed.) I'm tired though. Go figure. We ended up taking Jacob to the ER Friday night (after plasmapheresis) because he was screaming that his ear hurt. He NEVER complains about that. Got some antibiotics. Still has a yucky nose a bit, but his ear is "almost better."
So now it's a waiting game with the insurance company to see if they will pay for the Rituxan. If not, we have to think about the chemo/stem cell option, because the chemo is actually super cheap compared to the Rituxan. Nice.
So. Happy Monday. Whoo.