Stuff and things

Am I the only one that is jealous over people in wheel chairs? For me I am jealous because if it was me in their place maybe I wouldn’t feel the pain my pouch causes, the nerves that are wrecked that control my bladder. Just the movement in my small intestine. Yes, I can safely say I am jealous over people in chairs.

I will never understand other people’s illnesses or anything actually that I have just not experienced. What I wish I could do is get over the phantom “limb” rectum syndrome. I watched an episode of Grey’s Anatomy and it was about phantom limb and she felt like she was losing her mind, night terrors, pain, etc. Same shit but mine isn’t a limb. I lost a long ass tube and the exit that goes with it. Having a barbie butt (asshole sewn) is really not fun. I don’t give a fuck who loves it, they are lying. When you squat, stretch, etc. You have that feeling that “HEY YOUR ASS IS SEWN SHUT, NO STRETCH.”

Someone messaged me on FB who is recovering in the Palms after getting their BCIR and asked if I had certain things going on down there like sores, or pimples I believe. I had to think back to last year when I had this surgery. I remember after 20 days you are allowed to shower. That is the first time I ever washed my ass basically. At that time it was like a drawstring bag. Only way I can really describe it. Puffed out and just what you picture is what I had. Now that area is just a lump. Sort of like a corset is sewn shut. 

First time I took a shower and touched at non-rectum area I almost passed out. A Nurse blew it off as I just hadn’t showered in awhile and the motions blah blah blah. No, I know my body and I pretty much almost passed out in the shower and had to sit on the stool that was provided really quick. The constant dreams I have of stupid stuff like taking a shit like a normal person or farting really mentally fucks with you. I get flutters in that area when I have gas in my pouch. If my pouch is super full it feels like I have to take a shit like I have a colon. A lot of ostomates say years out they have this and the only relief they get is from sitting on the toilet and pushing like you are taking a shit.

I am not sure what other people who experience war and have PTSD go through but my PTSD is really bad. My original PTSD was from the major car accident I had, reason my road rage is nuts and I drive like a rally car race driver in a saloooon. (Yes Top Gear addict here). I need to do yoga and rolfing. I think the yoga part makes me weirded out. My guts can be REALLY loud and my torso is tight and hurts so thinking of yoga just makes me cringe. I have been talking about Yoga for years now, losing a colon isn’t anything new.

Other than all that shit. I am going to the Rare disease conference and lobby on Capitol Hill. Signed up. I want to do the NIH open house but I get paid hourly and losing the days as is I want to take will break my wallet.
Tomorrow I am heading to Georgetown Lambardi center to meet with a breast oncologist. I have a new lump. YAY! I am hoping it is the same calcification that NYC cancer center swore was cancer and biopsied me twice and was just that, calcification from surgery when I chopped my boobs down 😉 My disease doesn’t cause breast cancer and I am not in menopause so it isn’t likely it is cancer but since I am considered “high risk” they won’t take chances and got me in the next day to see a nurse practitioner.  Driving into DC is going to blow! Leaving at 7:30 am for a 8:45 appointment.

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