Today was supposed to be my release date after almost 3 weeks in the hospital. I've spent maybe two weeks of 2011 at home with my family and I was barely present to say the least. I had no energy, I would just stay in bed. I was withering away. I lost 30lbs over that 2 week period of being at home. I started seeing a new doctor on March 7th. He said the way I was looking, he would've been embarrassed to release me from the hospital and he quickly admitted me "for a few days." Well, today I got a fever, and cold sweats so I couldn't leave. I'm tired of this. I'm tired of sleeping all day because that's all there is to do in a hospital, and then cry all night because I remember my life and it wasn't ever this way.
I remember being a young girl, crazy for Michael Jackson. My friends can attest to it. I was obsessed. I knew all his dances, was the first to buy the cassette tapes of his music. And I would listen to my dads records over and over again. Remember those anyone? Records and cassette tapes?! Then of course as all children do, they grow up and go off to college. I swore away from love and put myself in my books and of course into music. I majored in history. And of course the love thing went down the drain the day I met my husband. I just "knew" that this wouldn't be something that ever went away. He verbally said it out loud to me first and I just kind of let it hang in the air. We had our ups and downs but we're still here. We got married, have a family. We found financial stability almost. He works days because that's the only option for middle school teachers. And I work nights. It worked out for us. We'd call each other on breaks, text, email, and chat online to make up for the difference in schedules. And we always had our days off. Now thanks to this disease, I've spend the last few months in the hospital. Nearly dying several times. Withering away more and more each time.
They are on an aggressive approach with feeding tubes. I got the first one on Monday, and I am in pain. It hurts so badly. It looks so ugly hanging out of me. I can't stand to look at it, and I am supposed to go home and take care of it? I don't know what to do. I think the fever is my body rejecting this piece of medical hell. I get a second tube at some point in the next couple of weeks. See, the tube I have now, isn't exactly a feeding tube. It's to drain fluid that keeps building up in my stomach, making me severely nauseated. Yet, the tube itself makes me severely nauseated. I'd rather be nauseated without it. I don't know how to hide this from the kids. From my husband. From myself. It's hard. I wish this would end, but it looks like I'm stuck with it as it is "chronic."
I remember just wanting to be diagnosed. I thought removing my gall bladder would fix it all. When I didn't have an attack in September, I was optimistic. Then the end of October came along and I had an attack. Another in November. The worst of them in December. I hate what it's doing to my family. The heartache it's caused all of us. I miss them so much. Seeing them once a week just doesn't cut it at all.
I wish things were different. My somewhat normal life that I've always had is gone and I want it back.
"Say good bye. These days are gone. And we can't keep holding on when all we need is some relief through these hard times. There's something missing. You'll never feel it but you'll feel it when it's gone." Matchbox Twenty. "These Hard Times."