She took my history, and said, "Oh my goodness, for someone so young, you've been through a lot of health problems! Let me go talk to the doctor!" She came back, and told me what he said. He thinks that my body has just stopped making its own steroids. I'm starting a new med. I asked her how it worked and what it did, and she said, "I don't really know, but I think it will help you." Sorry, lady. That's not gonna cut it. I made her look it up. ;) It's a med to help balance out my fluid volume and electrolytes so I won't be blacking out/getting dizzy and shaky. It should allow me to cut back to 10 mg of steroids. Basically the plan is to try the new med + 10 mg steroids for a week, then reevaluate. The goal is to slowly (over months) try to wean back off steroids.
I was sort of disappointed that she wasn't exactly the sharpest scalpel, so to speak. I felt like I had to drag answers out of her. I don't think she really knew what to tell me. I asked her what I should do if I get like I was on Sunday. She suggested I call the office. I asked her what they would tell me, and she said, "Well, it depends on what your symptoms are." As I had just described my symptoms to her, this was not very helpful. So I repeated myself - "If I feel lightheaded, can't see, heart races, body hurts really bad, what will they tell me?" She said, "Well, I guess you should probably just go to the hospital." Like I said, she wasn't very helpful... hopefully the new med will settle things out quickly! I did talk to TCU Dr, who agreed to give me IV fluids in his office if I need them. That way I can avoid the hospital!
Also, I'll be getting scope #10 + biopsies on Thursday. GI Dr usually only does procedures on Fridays, but he agreed to come in on Thursday just for me. ;) See, it pays to be your doctor's favorite! What a nice guy.
I'm still very tired and my joints are really weak and swollen today (probably due to the weather). The splitting headache comes back every afternoon. The good news is: I'm not really shaky today! I got refills on meds and new antibiotics today, so hopefully Twitchy will settle down. Goals for the week: survive, no hospital, work on gaining weight.