OK... until recently I have been really happy with the care I've gotten from my Rhumey and Pulmy. NOT so happy with Rhumey lately. As many of you know I have to discontinue Cytoxan in early December because it attacked my bladder.

Rhumey trying to get me approved for Rituxin (long story, most of you know it... not happening right now). So... we've doubled the Pred (back to 15mg since discontinuing Cytoxan).

I feel pretty much like I've been hung out to dry at this point. Rhumey doesn't seem concerned about keeping up with bloodwork and until December problems we were doing blood every 2 weeks. I was feeling pretty good before the problems cropped up, but now feel the back-slide. Getting the fatigue again, joint pain, headache, low back pain, cough (treated with antibiotics by GP for resp and sinus infection about 10 days ago). While there I TOLD GP we were going to do CBC and forward to Rhumey. At this point I don't know if Rhumey just doesn't know what to do, or is just ignoring me and my disease. I've been fighting this for almost a year and felt we were closing in on 'remission'. I don't want to end up extremely ill again and having to start over. I've lost half my hair, my career, most of my froiends... was it all for nothing? Feels like it at this point.

I'm pissed, frustrated, depressed... I talked to hubby last night and we decided it's time to look for a specialist. I got on the VF website this morning and found Dr. Stephen Capizzi in Nashville. It's only about 175 miles from me... I can't really afford to travel right now, nor do I feel up to it, especially since depending on the appt time it may end up being an overnight trip. But at this point I feel like I have to do this. *this revelation should please Sangye *

I feel safe telling you folks here that part of me is ready to just throw away all the meds, stick my head in the sand and ignore everything... letting whatever happens happen. I know this isn't rational, I'm just so frustrated, and the doubling of the Pred isn't helping. I'm all emotional again. I spent most of yesterday and so far all of this morning in tears.

Anyway... the point of all this rambling... has anyone seen Dr Capizzi, or heard anything about him? I'd like some info from a patient before I call and try to get in to see him.