I guess today is just one of those days that this effing disease is sucking the life out of me. I am so damn frustrated at how I've been feeling this week. I've been in a lot of pain, laying in bed, and pretty much running in and out of the bathroom because my ostomy is useless. It just doesn't make sense to me at all that no one can seem to give me an answer to explain why it is that I sit on the toilet more times a day than I have to empty my bag. Why do I even have this terrible piece of crap attached to me if it doesn't even serve a purpose?
As twisted and effed up as it sounds, I'd rather continue to feel like shit as I wean off steroids than to be on the dose I was merely feeling "okay". I want it all or nothing. If I'm going to be on 40 MG of steroids and have to deal with the awful side effects, then I should be feeling like a million bucks. And while I did feel a lot better, it wasn't enough.
It can be really frustrating sometimes. I finally felt like I was doing good things for myself and getting back to productivity despite my situation. But now I've spent the past couple of days in bed and I wonder how many times a person is capable of bouncing back after these little set backs. Each time I tell myself I won't be able to do it again, but I always do. It's just not fair. I just want my routine back and some sense of stability.
I really wish sometimes I would be able to be completely, 100% honest with people about what I go through. There are some things I just can't convey. People keep asking me if I'm ready to go back to work and I just have to smile. There's nothing I'd love to do more than get on with my life so when people ask me stuff like that it just makes me angrier that I'm unable to move on right now.
I feel like lately everything has been telling me to have a proctocolectomy so I can move on with my life. There is so much I want to do and the uncertainty of the future with Crohn's is enough to keep me from pursuing my dreams and goals, even if I were to find a medicine that worked for now. I don't want to have to worry about going back to school and getting a job only to get sick again. I don't want to blink and wake up and be thirty and still be sitting in my bedroom angry at all the things I didn't do because I was waiting for a medicine to come along to fix this. And still, knowing all of this, I cannot mentally fathom making that leap and making this permanent, even if it gives me my life back.