She emphasized that instead of focusing on how much longer it will take to get off steroids (or if it's even possible to get off steroids), we should celebrate successes. I'm functional again. I'm not having to go get IV fluids every few days. I'm not feeling like I'm in adrenal crisis all the time. I made it through surgery and tapered back down off the post surgery high dose steroids successfully. And we've achieved a reasonable dosing plan for the steroids to make this work. I very clearly am not getting too much steroids - my face looks normal and I'm not gaining weight - so we know I'm on (usually) enough but not too much. We made plans for how to taper should I feel ready to try again. And I don't have to come back for SIX MONTHS!!!!
Yesterday I had either a blockage or a touch of the flu... and didn't keep my steroids down. Thankfully, God protected me, I took them again, and they stayed down, so the story has a happy ending. But it very well could have ended with me in the emergency room with dehydration and steroid problems. So we discussed that I could get a steroid shot to keep around the house in case that happens again.
I talked to ID Dr's nurse. I may be changing ID doctors so that I can be with one who has a more regular schedule. My ID doctor sees patients only during certain phases of the moon, and it's very challenging to coordinate our schedules. So I was supposed to see him this week, and we've been unsuccessfully trying to set up the appointment since the last time I was in two weeks ago. The coordination thing is clearly not working out, so I told his nurse I'd be happy to follow up with anyone in the office; I'm not particularly attached to "my" ID doctor. Hopefully I get in to see someone this week so we can decide if I need to be on antibiotics or not! I must admit, I was feeling quite sore in the area of the abscesses, but since starting antibiotics, this is much improved. Hopefully they are doing/have done the trick!
Next I went over to the internist. I have been highly disappointed with internal medicine people. They have not been helpful to me, so my expectations are pretty low. But yeah, I was still disappointed. This is my second try at finding an internist - this is the "new" one I got this fall. Unfortunately, she isn't helpful, either. We keep hoping to find someone to coordinate all my doctors, but she is pretty unwilling to play that role. She just went over my meds, asked me if I was depressed, listened to my heart, etc. At the end, she said, "Is there anything else I can help you with?" I didn't know what to say, since she had replied either "I don't know" or "You need to ask Dr. X about that" to all my questions... Oh, then she offered my the pneumonia shot. It's kind of a running joke with my mom and me how the internists are always pushing this shot on me! I decided that I will not be following up with her as I'm unsure as to why I'm supposed to see her in the first place! ;)
I think it's so easy for me to get caught up in all the mess of doctors and pills and feeling bad that I forget to step back and look at the big picture... Endo Doc was right. I have come so very far since I started seeing her in April. I have come so far since my surgery in August. And of course, not just physically, but spiritually... I wrote an end of the year post about this, but forgot to publish it (whoops! It's coming soon, but you'll have to look back at January 1 for it). So, as frustrating as my whole health adventure continues to be, I'm thankful for the reminder of how much better things are now than they were! And sort of convicted to quit whining! ;)