Wednesday, April 29, 2015

Post #90. Suck it, IBD. Still.

I haven't written a blog post since October. I don't really have a very good reason for it. Mostly, I'm sick of myself and my issues and have nothing new to say. I'm in pain daily. In multiple spots. Abdominal. Rectal from fissures and hopefully not more cuffitis. It has been concluded that all my abdominal pain is from adhesions(bands of scar tissue) from being opened up a bazillion times. They can go in and remove them, but guess what?! It creates the risk of MORE adhesions!!! Woooohoooooo. What an awesome catch 22.

So I starting seeing pain management last week. I can't even believe I need to deal with this. I got some injections on Monday. So there's that. Needles jabbed an inch and a half into my incision scars with the hopes that it'll help the widespread pain. I'm doubtful. My pain is not superficial. It's deep. This is not incision pain spreading out. It's a nice effort to start but screw that shit. I hate when I KNOW because it's MY BODY but my lack of a medical degree means I have no idea. So there's that. It's pretty fun.

My surgeon is not one to just cut. I respect him for that. And he specifically won't just go in for adhesions, but he has told me he may break his rule for me. Which is sweet in a weird surgical, chronically ill kinda way. I actually looked at him when he said it and said, "awwww, you would?". Being sick skews how completely whacked something is. Like what normal person would think someone offering to reopen you midline, was sweet? Uhhhh no one. That would sound like torture. But eh, just another day.

I've been having serious self esteem and motivation issues. I'm just sad that this is what is STILL happening. I went back and read some old blogs recently. Especially the ones immediately after my colectomy. I cried. The optimism in those words is long gone. It almost sounds ridiculous. I really thought this would be an easy peasy fix. JPouches are common enough. Colectomies happen all the time. People move on and live life and are active and happy. And then there's me. Still with this bullshit. My colectomy anniversary is 3 years next month. Seriously WTF. I always knew I'd never be normal but I never imagined I'd still be fighting the pain daily for this long. It's not fair.
I barely eat because it's not worth the pain to do so. My days are clouded from meds. I can't get out of bed. If I have a 9am appointment it is nearly impossible for me to make that happen.
I suck. I'm useless. That's how I feel. My entire existence has become completely inconvenient to everyone around me. For me to be "normal" and get dressed and go out and do things requires a level of will power I can't explain in words. And then that outing wipes me out for 2 days. And when I say outing I mean a day I go grocery shopping and lunch. Going to brunch. Hell, I went to the zoo Saturday and it's Wednesday and I'm still wiped out. And a raging sore throat and body aches have started which is letting me know I over did it. BY WALKING AROUND THE ZOO.
My immune system sucks. I've been over this shit for 2 years. Everyday I have a mantra in my head, "Just get through today". Isn't that the most pathetic thing you've ever heard?! Just get through life. Everyday. I don't know what I'm getting through it for because saying that usually means there's something better after you get through it. I don't feel that anymore. I don't feel that "It'll all be worth it" feeling. It sucks.
This is life with IBD. Real life. Not some stupid Crohns and Colitis foundation ad of people looking all healthy and "managing" their IBD. It's such bullshit. I can't manage a shower much less manage a "normal" daily life. THINKING about doing things exhausts me. So when you see me and I'm put together and dressed and my face is on and I'm smiling, just know how much effort I am putting in to not see my pain. When I'm out or on vacation, know how much it took for me to make that happen. Not eating the day before. A lot of meds. Giving up the next few days. It's hard but I've become a pro. I don't want to be but apparently this is what I have to work with. I'm just tired of doing it but I can't exactly quit. It's like being stuck with some soul sucking job you fucking hate and resent having to go to every single day including unpaid overtime and that's just your lot in life. Suck it Ulcerative Colitis. Just suck it.

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