Yesterday I gave in and asked my Rheumatologist what my expectations on pain should be. Should I be expecting to be pain-free with treatment, or is pain-free the (non-attainable) goal that treatment is constantly working towards? 

It's something I needed to ask, and I was pretty sure I knew the answer... but it's not really what I wanted to hear. She said that realistically we will probably be able to reduce the pain in my back, sternum, hips, and knees, as well as reduce the amount of time I have with a fever. However, it is uncommon to be able to get rid of the constant fatigue, and my hands will probably always hurt.

The part that upset me the most is that it's probably not going to be possible to get my hands to stop hurting, and that they are only going to get worse. Most of my joints (but especially the joints in my hands) are hyper-mobile. The joints in my fingers can bend in exciting ways, and often the only thing preventing certain movements is that it stretches the skin to the point that the skin hurts (but the joint never really protests). ASo apparently they aren't just "a bit more flexible than usual" like I always thought, but weird enough to make the rheumatologist look a little freaked out (the doctor tried really hard to hide her horror when I rotated my pinky 120-ish-degrees, but didn't succeed that well). Anyway, so what this means is that apparently even if I didn't develop spondylitis my hands were going to start hurting *eventually*, but that the spondylitis will absolutely make that worse and happen much quicker. So that's lame. 

I also have fucking carpal tunnel on both wrists, and am ordered to sleep with wrist braces for 6-8 weeks. This is further contributing to the hand pain. 

And she said that my disease is "progressing" which sounds super unpleasant, and she has put me on more medication because what I'm taking is not sufficient to control what's going on. I still have "uncontrolled inflammation" primarily affecting my hands and sacroiliac joints, but also occasionally making other joints and tendons go "what the fuck".

So yeah, I'm just really upset about this. I need to type to be able to work. Mobility issues wouldn't be as big a blow as this is. And just... having it confirmed that I'm always going to be in pain for the rest of my life, AND that it's my precious hands that will be hurting the worst.... is not nice. I thought I had a little bit longer than this.