Sunday, October 27, 2013

Broken. Just broken. For now.

I guess my goal lately is to go at least a month in between posts. Not intentionally but it keeps happening. Pretty much health wise things are chugging along. Got another scope by a different doc to tell me the same thing as last time. Severe ulceration still. Some nasty fissures causing pain. Muscle spasms are back to piss me off. Couple that with the abdominal pain from my engorged fallopian tube and I'm just in pain daily. Basically nonstop. Discomfort in so many areas. There are days I'm not leaving the house unless necessary. My pain pills dull it and I'm content to be under my electric blanket and zoning out. Some days it takes everything out of me to go to class. Running errands wipes me out for the day. It's just so pathetic and ridiculous. I had to take Daughter #1 to the doctor and it struck me how much time in the last four years has been eaten up by my medical issues. I've put in some solid time. Time I could be traveling. Reading. Hell, vacuuming would be better. Ok, maybe not, but it's just such bullshit. I was driving along thinking what do I have to show for four years? Let's not reduce the importance of having my child, naturally, but really. Not much. A lot of laying on my ass with zero drive or with too much pain to accomplish anything. I got pissed. Just that angry, upset pissed and the tears just come.
I'm 36. My time has slipped through my fingers. So much of it without any joy in it. Just days of pain. Hospitals. Doctors. Driving to doctors. Filling scripts. Getting tests. I've fucking had it. There's nothing I can do either but keep going and keep thinking that there will be a point where I'm just real and whole and healthy and not broken anymore.
As shitty as it's all been, that is still MY intention. I don't look at myself as this sickly, forever disabled person who will be trapped with this crap forever. My reality speaks to the contrary but maybe I'm an idiot. I do feel broken many, many days. It makes me sad. It's this weird feeling of losing life. Your 30s are FAR from old. This is prime time baby, and I don't have the body to make it happen. That pisses me off more than I can describe. You know when you get so drunk on Friday night and you sleep all day Saturday and all of a sudden it's Sunday and you are pissed that you basically missed your whole weekend? Well, that's my life. Saturday night I went out for a friend's birthday. I laid around all day to conserve energy so I would actually make it out(Yes, if I had so much as gone out to eat, run to the store etc... there would have been a good chance it just would have used my reserves and I would have bailed). We met for food(I didn't eat. Just not worth the risk) and then went to a bar with a DJ and a band for 80s night. We all had crimped hair and looked crazy and it was fun. We get there and the music was just so great. Those of you who know my drinking/partying/out all night/dance all night days know I loved it and it was my favorite thing to do. We would go dance for hours! Well, seriously two songs in and I'm lightheaded. I've got pain shooting through my abdomen. I'm just trying, trying to smother it and be ME and have fun. But I can only fake it so much. There were a couple points I thought I may hit the floor either from pain or exhaustion. In the middle of all those people smiling and dancing and drinking and LIVING, I was HATING myself. I just felt so broken. Like who the hell am I kidding? I almost left in that moment but I couldn't. I wanted to make it as long as I could because me being there was so rare. I don't go out and I don't even mean drinking or whatever. I don't really have many friends here or go to dinner or happy hour or yoga class or book club or whatever else normal, social people do.
Not too many years ago I had things to do every night. I was either out doing things with Dillan or out doing things with friends. I was rarely home. I have NEVER been a sit at home person. I was actually surprised I got invited because I had only met everyone once prior to being invited out. It felt nice. I didn't want to be lame and let my defective body win. So I milked my Captain and coke and danced as much as I could and had a lot of fun. I'm glad I went. I miss that part of me but indulging in the old me just casts resentment on the bullshit I deal with now.
Three years after filing for SSDI and being denied three times, I finally won at my hearing in August. So in two years my case will get reviewed to see if my heath has changed. It's a weird feeling. It felt good to win after fighting so long and them being so stupid in denying that IBD can affect a person's life so much. On the flip side, I don't think of myself as being so useless. Even though it's reality. I tried to work part time and I was in so much pain and it was so hard. To be this young and have the smallest things drain you is so difficult. <sigh>  But I guess it's nice to be justified in this way. I expect in two years at the review I'm going to be perfect, and healthy and as figured out and normal as possible and pick up my life where I left off a few years back. I have vacations to take and shit to do, people. Big time. I'm less than a month out from another surgery. I've got issues separate from that that I don't see resolving before then. So this should be interesting to say the least. Nothing I can do but meet it head on but it doesn't mean I have to like it. Thanks for listening to my boo-hooing. I've had over 10, 000 hits on my blog now. That amazes me, so thank you! XO


  1. Hi Lisa,
    I've read a few of your posts and I'm so sorry you are struggling so much right now. My husband has UC and had a colectomy a year ago. We are hoping he can be reconnected at some point but his remaining 8 inches of colon is still bleeding and its not looking like we can save any of it. We're also not sure its even worth it to try the J-pouch considering the severity of his rectum pain and inflammation. He is doing okay without a colon and we've finally adjusted to the ostomy but his new GI is now saying his disease looks more like Crohn's and we need to keep a close watch on his small intestine too.
    I hope you can find something small to smile about today. I hope you can savor a hug to your children or a conversation with a friend. Keep your chin up. This too shall pass. My husband wrote a book about his experience and it may help...its free on Kindle and a pretty quick read if you want to check it out.

    1. Thank you thank you thank you. Yes, in the middle of all the "woe is me", my children make my heart want to burst and my husband makes me laugh so hard I hurt even more. I have great friends and family and wonderful strangers all over the world who read my words and know they are not alone. I will check out your husband's book. Thank you.