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[selenay]

I saw Awesome GI Guy today. I've not been feeling too positive about things lately, thanks to the continued light bleeding and some very minor cramping at times. It's hard to believe that things are really getting better when I'm still having symptoms despite all the prednisone that's making my life miserable.

Anyway, he was (as usual) very positive and reassuring. It looks like the inflammation is now only affecting a small length of the bottom of my bowel and he thinks there appears to be some normal tissue above it. This is much more positive than he could be even three weeks ago, so it's a bit of a relief. The frustration is that my main symptoms (apart from that super bad patch in January/early February) are bleeding and a bit of cramping. Diahorrea has never really been a problem for me despite the level of inflammation I had. So what I'm experiencing on a day-to-day basis masks what's actually going on inside, making it hard for me to tell whether we're really getting anywhere. After all, it barely bothered me when my guts were falling apart and now I'm actually not feel great (though not in a standard UC way) but my guts are looking better. So insane!

Still, this is the first time there's even been a peek of normal tissue anywhere so that is a good thing. After all, we started out with bad inflammation throughout the colon and now it looks like I may only have a few inches.

And we have a plan, which is even better. Another new med to tackle the remaining inflammation (oh, joy, more drugs!) and start tapering me off prednisone again pronto. I'm not looking forward to going through all that again, but maybe this time it will be better?

I'm still half-afraid to eat most foods and I'm losing weight again thanks to that, but hopefully I'll start feeling better mentally about food soon.

Right now, I've got an office lunch at a local pizza place shortly and I'm trying not to go into full-on panic mode at the thought of trying to find something on the menu that I like and feel happy about eating. ETA: I ordered some pasta. And ate maybe half of it before giving up. It was good, I just wasn't hungry and felt tired and crampy. Ugh.

Awesome GI Guy nixed the no food ever again plan that I suggested and reminded me that I'll still have bleeding and inflammation even if I starve myself. It helps a bit and I know that a lot of what I'm feeling right now is due to the medications (prednisone is evil) and the complete exhaustion from prednisone-induced insomnia.

Of course, once I'm off prednisone I'll be exhausted due to the back pain again and I won't have that nice prednisone-energy-boost anymore. Argh. But at least I won't have the prednisone-induced mood-swings to deal with. All the crazy will be purely my own.

My body is so screwed up sometimes. I just feel like a bit of a useless failure because there is nothing I can *do* to make myself get better faster.


< / moaning >

You know what I'd really like? A long vacation. I'm getting very tired out from all the medical stuff and I really just want to curl up somewhere and read for a very long time right now. Except it's not a good time to take my vacation and I can't really justify even a couple of days of sick time because I'm not actually sick-sick, just worn out and fed up. Eh, I'll get over it.

This week has been filled with meetings, stress and a lot of hurry up and wait stuff. Thankfully I've had some great Tour de France racing to watch in the evenings and today the race hits the Pyrenees, which is going to be amazing.
I'm most of the way through the back of my new shirt, so hopefully tonight I'll get that finished and can start the front, which has a nice little lace motif in places.

Also, I have ticked to Harry Potter. Saturday evening. It's going to be excellent!