Monday, October 6, 2014

I have purple hair and am not at my best.

Hello interweb friends. I hope everyone had a glorious end to their summer. Mine went by really fast even with recovery. It is now "fall" here in Texas at 80 degrees.
It's been way too long since I've written for various reasons I am too tired and too drained to recount here. For those that don't know me personally, my summer after surgery was a struggle, my trip was AMAZING with my family at the beach and school started with little fuss.
I have purple hair because, why not? If not now, when? So let's do this. 
I just had my 2 year anniversary of my original JPouch connection. So many mixed emotions and struggles continue to this day. Never having answers. Daily pain. Not feeling like I can plan or do what I want way too often and just continuous issues. Well, I am missing a major organ so my surprise is pretty naive. Life and your body functioning just can't work correctly missing something like a colon. My Jpouch is a slight replacement for it. The shittiest of substitutes and lacking functionality. It's annoying. I'm pissed. I'm tired. My pouchitis was/is back along with another fissure. So that would be approximately 3 months post op. Way too fast for that to have happened. Again. Considering my last ostomy was to rest my guts from chronic pouchitis. Discouraging isn't quite the word for any of it. In fact, I have nothing in my vocabulary arsenal to adequately describe my feelings to all you "normal" people.
I went into this blog post considering whether to express my positive "go get 'em" face or the real shit I have been struggling with the last 6 months or so. Not to say everything was great prior, but the last 6 months have just been eating at me. In terms of therapy, getting to be with my parents and siblings and all the nonsense that goes with our families was above and beyond anything else I could have tried. That week went too fast. I think I needed two. If I had to move back to the beach and breath the salt air daily it would be so great. I felt so much better too. Salt air fixes everything. And a giant, insane Italian family.
Anyway, I feel like I'm in this shitty, dark place in my head. I don't like myself much. After being out here almost 5 years, I have a handful of acquaintances who are great and I see now and then but don't have that support system of people that everyone needs. I don't have girls I go out with or call to whine or complain to or go get my nails done with or shop with. I don't have a hobby bc honestly after the time I put into school, my pain, my kids, the house, a hobby is more energy than I can spend.  I don't even know who I am anymore many times. I say "me" but in my head I'm referring to this pre-sick person not the current person. The current me is no where near the me in my head that I refer to in a delusion. It's maddening. It makes me sad. Illness aside, I went from always jumping at opportunity and being busy living, to not living my life. To limiting my experiences. And I hate it to my core.
I will never get my sick time back. I feel like I need to double down on time now. Make up for time in the hossie, time recovering from surgery and time where pain just wore me out. There's way too much I want to do. Too many places to see and things to experience. Laughter to be had and people to meet. I don't know. I feel like my life has been in limbo for quite a while. It was one thing being really sick, or in the hospital or with surgery recovery, but now it's just "chronic every single day, I can't win" pain and issues that impact my life. The mental exhaustion from the realization of how long it's been going on, what things I've missed or what I avoid, is huge. 
I don't mean to be a Debbie downer but it is exhausting trying to be "ok" all the time. To smile and make small talk when you want to lay in bed and wait for five minutes of feeling ok. It just sucks the life out of you. So there you have it. I really would love to always be upbeat and positive and looking forward to things but in all honesty that's rare and I'm miserable and life can suck it, big time. In the best way possible of course. I see my surgeon Thursday to tell him things still suck. Trying to live while in pain is the biggest suckfest. I think about going to Europe one day and it's depressing because of all the food I will not enjoy because if I do my trip will be ruined.  I swear there are days I could scream. But I'm too damn tired. 

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