I am so incredibly excited about
this!!!!! She switched practices because her old one was preventing her from truly taking care of her patients. But she took a two month break before she started at the new practice, so for the last few months I'd been kind of on my own with my PCP in trying to manage my health. I ended up firing him because he was just way out of his league.
Unfortunately, though, things weren't so great. I was hospitalized 4 times while she was gone, and since I was still having problems with the thrush from breastfeeding (which caused mastitis, which caused a flare, which caused an abscess, which caused sepsis, which caused c. diff., and then we were back to the thrush which never went away because of the prednisone and antibiotics through all this) my PCP wouldn't let me get my Remi infusion. We got caught in a vicious cycle of the thrush getting worse and more painful (plus throw in a urinary tract infection this last week, just for kicks
) because of the prednisone, but I couldn't go off it because I was flaring, but I couldn't get Remi because of the thrush.
Anyway, I finally got to see her this week! We had done a Prometheus test at week 7 (the week of the last one that got postponed for 3 weeks) and there was no Remi in my system at all. So we're moving to every 6 weeks with the 5 mg/kg. She said I needed to do the Remi ASAP so we could get off pred, and then we could worry about
the thrush.
So I got the infusion yesterday! Unfortunately, the thrush went crazy so now here I am back in the hospital (5th admittance since Halloween, with about
4-5 additional ER visits for pain and bloody BMs, dehydration, the typical....)
But I was so just super excited to have her back. She is just as awesome as I remembered. She rolled her eyes when I told her the PCP thought the D and stuff was anxiety.
Anyway, just thought I'd share the update! Now if I could just get these doctors here at the hospital to understand that oral benadryl is NOT effective on me (nothing oral really is) and I WILL itch all night long and be unable to sleep. *sigh* I have to "wake up" in 90 minutes to pump again, even though I've haven't slept yet tonight. So I am just browsing pictures of my baby girl who turned 6 months old yesterday. Isn't she a cutie??
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