Some people get to buy new shoes, clothes, maybe get new tires for their car (that I desperately need), with money they make. I on the other hand am spending money to go to Cleveland Clinic and then Mayo I think it will also be. Hotels, travel, food, etc. Fuck. I want to go to the beach for a weekend or get my car detailed. I make ok money a the agency I am currently contracting at but I still don’t have any way of saving any of it. Just goes right back out to bills and trying to fix all my issues I inherited with this damn disease.
So I have my first pain management session on the 8th and hopefully get some relief. I am trying to hold onto this pouch as much as I can physically and emotionally hold out. I said 2 years post op and if things aren’t better than perhaps get a temp ileo to see if I like it and if I do make it an end ileo. I never wanted a bag. I never wanted any of this. If I knew this was the shit I was getting into, literally, I would have never had surgery. I would have stuck with the cancer and gone because this is NOT living. I am so sick and tired of that fucking argument. You can not possibly understand my daily life and how bad it is. Just because you see me with lipstick on or eating at a nice restaurant. Well want to know what that food feels like as I sit at a dinner table with you? It moves through my stomach and then sits, without a real stomach I then wait for this food to move. I break a sweat at that point, then once it moves, or shall I say dumps through into my pouch I get heart palpitations then and gas and stool rips through my gut and bowel and even moves my spinal chord around. I feel like an alien is fighting it’s way out. Once my pouch is full my bladder can’t take the pressure so I have to get up to piss a few times. When food moves through my intestine around my valve it makes my bladder freak out and my urethra starts to burn. I wish I was never hungry because I would live on liquids. I am STARVING all the damn time since food goes through me in 2-8 minutes usually. I was jealous when a girl who just got a kpouch recently said her transit time is 6 hours! Hell… I wish I got 6 hours.
Having my ultrasound done on the 8th as well to see if I can get my tubes yanked out. Might have my blood work done to make sure I don’t need another iron infusion. I feel like I need one. So exhausted and burned out. I need a vacation.
Other than that I am just truckin’ along. Turning 37 in a about 5-6 weeks and hey.. I predicted I would live until 40 🙂