Sunday, May 16, 2010

I. Hate. This.

Have you ever gone to the gym and did a full body workout? Then proceeded to run a marathon followed by a couple of laps in the pool? My guess is probably not, but if you have, then I tip my hat to you, because you know what it feels like to be me all day, almost everyday. I have never done any of those things either, but with Scleroderma, it sure as hell feels like.

I have muscles in my body that ache, that I didn't even know existed. I ran out of my pain meds yesterday and didn't get to the pharmacy in time today so I'm in a lot of pain, all over. Not in enough pain to not be able to do things (I was able to do like four loads of laundry...woohoo) but just enough pain to piss me off and make me depressed. My knees are acting funny, my fingers hurt which they hadn't in like almost over a year, and I got really tired walking from the front door to the car earlier today. Blah.

Looks like I should just get over the idea of going into remission anytime soon if all the pain and discomfort comes back after just one day of no meds. frustrating. I'm sure some of the stress from work and personal life don't help my cause either but I really wish I could count on SOMETHING to be constant and dependable. (sigh) No more bitching, it is what it is.

I ask for Serenity. Courage. And wisdom. I can't change the fact that I have Scleroderma, but I CAN change how I feel about it and how I deal with it.

I feel stronger inside already by sharing my stories and my poetry. I attended an arts show this weekend where I was able to read my poetry and even impacted some people so much they bought my poetry CD's and picture poetry. It felt good to put myself out there and take a risk like that, and I'm really glad people were able to appreciate it and relate to it. That alone made for a successful weekend, even if today I felt practically useless.

I do believe (even if falsely) that one day this will all be some distant memory that I can look back on and remember as a time of spiritual, mental, emotional and artistic growth. It is definitely shaping the woman I am to become I just hope that in the process it doesn't manage to consume me.

(Another version of "me")- excerpt from memoir:


There is a woman who opens her drapes every morning to let the sunshine in. She unlocks her back door and opens it to hear the street sounds and feel the breeze on her unwashed olive brown face. Her hair is always a mess, usually a large afro that could be sexy if society allowed it to be. She always smiles at the trees and looks around outside hoping someone will notice her. She leaves her drapes open almost all day, even when it’s cloudy. Her silhouette passes by the back door ever so often, and she pauses momentarily by the window, takes a peep and truly believes that someone is looking in on her. She smiles at the possibility of being watched. Most days, when she showers, she forgets her towel in the other room and has to run across the open window in the nude. This daily routine excites her and she is sure that at least once, someone has caught a glimpse of her breasts. She always runs back across the room, laughing, with a towel covering only a portion of her body, on purpose. When she finally returns to the window clean and acceptable, she has a conversation with the wind and sighs, unsure of where the day will take her. She doesn’t know yet if she will drink coffee this morning or eat an apple instead, but she knows she has a choice. In truth this woman is lonely, but this woman is beautiful, and this woman is free. On Tuesdays, this woman is me.

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