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April 2009

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Anne: Pity,Party Of One

Life is full of whirlwinds and roadblocks. I’ve grown nauseous from the consistent twists and turns.

Judgment helps no one,
And it belongs in the court
and the court alone
and I have never claimed to be ready for the witness stand.
Please don’t put me on trial, for merely living the life I have been given.

Judgment doesn’t help me. It does not heal me or anyone else. It does not assist in my journey. All it does is make me feel defensive, for an overall situation that I cannot change right now. I am essentially a forced housewife, with two degrees I cannot apply to anything, right now. I am destined to sit inside the walls of my humble abode day in and day out. So to escape the monotony, the minutia, the bland walls of this everyday home, I go out to the bar. This is something to look forward to every week. A star in my sky made of neon, and those neon saloon lights are the only things that even begin to breathe some life back into my often lifeless body. Please understand that if something beyond your control were to take your job away from you. Take your education away from you. Take your car and your essential freedoms away, that you too wouldn’t want to jump at any chance for some semblance of freedom. Some chance just to feel normal, even if it’s just for a few hours.

My walls are closing in around me. I fight my demons every day. The darkness covers me and suffocates me as I fight to break free. And I do fight, even if you don’t see it. My heart beat slows. My oxygen level drops. As I force another hand full of pills down my throat, and I wish this pill-stuffing monotony could all just end. But it can’t right now. It’s where I’m at. And it’s true that I’m sick of the paper-shuffle dance I do every day. It’s true that my feet hurt. That I am disgusted by county pharmacies and clinics full of IV drug users, people without tact and manners who are coughing all over me, and people who are bleeding on the floor and the chairs and the wall next to me as I wait. I am immune-suppressed. I should not be here. I am an educated member of this society. And I am fighting for my health.

I am fighting to “stay” healthy, so someday I can utilize the education I’ve spent so much time (while sick) earning.

And I am sick of fighting.

For something that should be obtainable.

Something as simple as my health.

Please know that when you see me smiling, when you see me have a drink, when you see me laughing on stage singing Eminem at karaoke, that THIS is one of the few moments I have to smile. Everyday is a mountain of paperwork, phone calls, and ridiculous hoops that I have to jump through like a trained lion - just to insure that I stay healthy. I cannot climb the corporate latter, nor make a wealth of money for my future planned retirement, right now, as it stands, I must do these things to try and stay well enough just to “live” each day. I’m not trying to change my appearance. I’m not trying to get over the flu. I’m not trying to stay off work. I am trying to get my body to do what many people’s does naturally. Just trying to keep my body from feeling like a train is running over it every hour that the hands shift on that never-ending, time ticking, son-of-a-bitch watch-hand. My body cannot process foods. It does not absorb minerals and nutrients from the foods that it does attempt to process. And on the off chance that there is a day when I can actually eat (like a somewhat normal human being) I am in so much excruciating pain that the thought of eating for the next week absolutely scares me to death. It scares the shit out of me. And a night at Mary’s or Face’s or (insert club name here) after 6 days of this fight, gives me fours hours, four coveted sweet smiling hours of reprieve.

My treasured friends who have known me for any period of time know that in the last YEAR alone I’ve lost almost 50 pounds, gained almost all of it back, and I’ve again lost almost 30 of that. In a year. I’m not dieting. I’m not exercising. This is what I deal with on a daily basis, due to where I am at, on the long-road journey that is this illness. I have pants in sizes that range from 7 to 12, and some men’s jeans, just to ensure that I can wear suitable clothing on a daily basis. My shirts range from medium to extra large. And my bras? From a size 34 C to a size 38 DD.

Since I moved into this house I’ve been to the ER multiple times. I’ve been in a doctor’s or clinic office at least twice a month on average (usually more.) A few weeks ago while sitting in, yet another waiting room, I realized that most everyone only goes to the doctor when they are sick. Which happens… once a year? When it’s not the normal cold and a little vitamin c will just kick it out? Most people only go to the doctor when they are sick enough to need their intervention. And think back to the last time you were at the doctor, when you were so sick you needed his/her help to get better - how horrible did you feel? I feel like that almost every single day.

Now realize that my doctor knows me by my first name, I have his personal pager number saved in my phone in case of emergencies… even the nurses know me (and my life story) by first name. My treatment nurse today called me (about paperwork!) and asked me personal questions relating to her daughter because of the CMISP hoops she knows I jump through. And all I gave her was my first name. No medical record number. No last name.

“Hi Maria, it’s Sara….” That’s all she got.

Please, take a second to think that through the next time you want to give unsolicited advice. I’ve tried sleeping. I’ve tried special foods. I’ve tried cutting foods out of my diet. I have tried exercise. I’ve tried aromatherapy. I’ve tried homeopathic remedies. I have tried temporary disability and I’m now applying for permanent disability…..at the tender age of 27! I don’t need things to try, all I need is compassion, understanding and unconditional love that so many of my truest friends supply.

I generally hold myself together. Everyone has seen my painted-on smile and knows that I run my circus like the best ringmaster out there. I handle my shit. I have things together and I have a ton to offer. I’m there for anyone at anytime and I try to be the best friend a person could have. I can be snarky sometimes. I have a little bit more attitude than I used to. But you handle persistent pain for over a year and tell me you wouldn’t do the same. I have amazing people in my life who remind me to laugh. We joke about the pain. We make light of the situation. It’s the only way to get through it that I’ve found. Sure, I could wallow. I could sit at home and not get out of bed for weeks on end. I could think, consistently about the fact that my body is potentially shutting down on me.

Or I could go out. Sing a few songs. Surround myself by people who love me and cherish me and whom I cherish too. I can be social and I can laugh.
Genuine laughter because I’m actually enjoying my life.

Give me those minutes. Those hours. Allow me to enjoy the parts of my life that I can. I will enjoy those times. And please know that if you don’t want to give me the freedom to do this without judgment, then I ask you to try to manage someone else’s life. Anyone’s.

Just not mine.

Thank you but I’ve got it under control,

All on my own.