Oh Yeah...

I was so wrapped up in bitching about waiting room manners, I totally forgot to discuss my actual appointment. 

I was very happy with the amount of time my doctor spent with me, and he was very thorough and attentive.  He wasn't as impressed with my progress as I'd hoped, and he's quite concerned with getting me off of the Prednisone as soon as possible.  Today I'm going down to 45mg for the next week, so hopefully that won't rock the boat too much.  The most startling thing for me was realizing that my leg weakness is from the Prednisone itself and not muscle atrophy from being in bed for so long.  I was also surprised to realize the colitis (specifically a cytokine called TNF) is responsible for sapping my energy- something I had previously blamed on malnutrition and, again, being in bed for so long.  So that was a bit upsetting, but I made it all the way to the Dr.'s office without incident and didn't need to take a nap when I got home so I'm still feeling optimistic. 

My blood tests indicate my hemoglobin is low (11.1 down from 11.13) meaning I have anemia from the blood I lost, but I was expecting that.  I'm going to try to pick up some slow release iron from the pharmacy, and eat more iron in my diet as well.  The big thing I have to think about now is what we're going to do next-  I'm meant to call and check in with him each week for the next month and then go back for a follow-up.  In the meantime we're going to continue the cortifoam and try to steadily reduce the Prednisone.  The question is, what after Prednisone?  He's suggesting Remicaid is less dangerous as a long-term treatment than Prednisone, but I'm effing terrified of it.  I don't want cancer or lupus or sores or infections or any of that other scary shit, but that's what I've said about pretty much every medication I've ever taken.  I'm always terrified of the potential side-effects, and in the end I cave because what other choice is there?  I didn't think of it while I was there, but Budesonide got me off of Prednisone the first time around, so I'll have to ask him about that when I call in next week.

I'm trying to get back to work for a half day today, which I think will go okay.  My doc's office is farther away than my job, and I made it there and back without incident so I'm feeling positive.  I'm about to have a turkey salad sandwich for lunch with a small glass of coke to pep me up (I'm trying to wean off of my soda dependency, but it's the only way I'm comfortable drinking caffeine right now).  I bought a ton of groceries to try and make healthier food for myself and plan to do a lot more cooking for myself.  I've got about half an hour before I have to head out, so I'm going to get a move on and hope not to crap myself or pass out between now and when I come back home.