Round three of Humira is tomorrow. Over the past few weeks, I've been seeing improvements in some areas, so I think it's working!! I had been running a fever constantly, but I've been fever-free lately, I have an appetite and I'm not nauseated, my joints are less stiff, and my stomach doesn't hurt at all! And, I'm absorbing what I eat, so I've even gained some weight. All these things are very, very good. I'm making progress and taking baby steps towards getting healthier!
GI Dr and I talked about the worsening pouchitis. Really, it's not super inflamed or bad at all right now. Twitchy is just living up to his name. ;) But we really don't want it to get bad again, and we're trying to avoid antibiotics right now, if possible. The other options are ridiculously expensive, so I don't want to fill the new prescription for them. I have a couple days of medicine left over, so I'm just using that. Hopefully it will beat down the pouchitis until Humira fully kicks in.
I saw a new doctor - an internist, who theoretically is supposed to kinda oversee my care at UTSW. It was, alas, a total waste of time. Basically, I listed my issues, she asked a lot of questions without being able to answer any of mine, then shook my hand and said, "Great to meet you. I'll see you again in three months." Like I feared, instead of being able to look at the big picture, she answered any question I asked with, "I don't know. You need to ask your X specialist about that." It doesn't even seem like I would be able to get in to see her quickly if I got sick (like normal person sick - strep throat or something). So I'm not really sure what the point of this doctor is... oh well. Didn't really think adding another doctor into the mix would help. The worst part was that I didn't even get a lollipop at the end! Sad day.
I'm still having issues off and on with the adrenal stuff, but it's not terrible. My pain is still bad, but the new sleeping med plan is helping, so I've been sleeping a little better, which is great!!! Most mornings, it literally takes me a couple hours to be able to get out of bed and get moving, but it's summer - I don't have to be anywhere, so it's not a problem! I just take my time (and a lot of drugs). ;)
Overall, I truly believe that things are finally starting to move in a positive direction! I am so thankful. Seems like every week since January, I've been hitting rock bottom. Then the next week, when I thought it wasn't possible to feel any sicker, I'd hit an even lower rock bottom as something else would go wrong or get worse! Now, I'm seeing improvements and starting to slowly climb out. I still feel crummy, and I still have a very long way to go, but I really think things are going to get better. It's just gonna take a lot of time and patience. I'm trying so hard to NOT be frustrated or disappointed on days when all I can do is lay in bed. I used to see this as personal failure, me not being strong enough, instead of seeing it as God revealing that His will for me for that day. So, I'm learning to not fight God - to honor Him by submitting to the limitations He gives me. I'm choosing to be thankful that God is giving me the opportunity this summer to be still and pray and listen to my body and rest when I need to. And I pray that this will bring Him glory!