Wednesday, June 27, 2012

Patience is a Virtue

That I just don't have. Not anymore anyways. I want to say I use to be patient, at one point in time. But I'm just not anymore. I can't be. I would love to be but I just cant. Not anymore. 

I've given up on patience and replaced it with stress, worry, tears, anger. 
I got the call telling me I am most likely going to lose my medicaid, the DAY BEFORE my appointment with the electrophysiologist to decide if I need surgery to fix my pacemaker lead or just wait some more.
Nothing ever seems to go my way. 

I cant just patiently sit and wait for a court date anymore. There is not a day that their isn't some sort of worry. I truly understand why people go crazy and shoot places up. When you need help and no one cares, no one helps, well it begins to look like a very good idea. 

I worry, a lot, I cry, a lot. 
I'm so stressed and so angry I just cant talk to most people anymore. 
It's crossed my mine many times to just yell at people, seriously shut up and look at yourself. You have a good life. But I don't I know they need to vent too.

But honestly though, if I have one more person say to me
"I wish I could get food stamps"
"I wish I didn't have to work"

I honestly might shoot them. 
Do you honestly think this is how I wanted my life?
Do you honestly think I like not being able to work? Not being able to support myself?

Seriously now people! This just truly sucks. It's not what I wanted! Feeling bad all the time, relying on others all the time. I'm not a lazy person who just doesn't care, who is willing to be taken care of by others.

I am sick. I have half a heart, I will need a heart transplant, I am in pain daily. And it kills me knowing others have to pay my way.

I've tried to do things to pass the time. My mom bought be a bunch of new books to read, and no matter how good they are, I just cant sit forever and read. There always comes a point where the worry and the pain, It all comes rushing back 

I just don't know what to do anymore. I don't know how to be okay. I don't know how to stop the worry  the pain, the guilt, the fear. 

Saturday, June 23, 2012

Pain is inevitable.

Suffering is optional.

I love being able to hang out with my brother and his family. I love living right next door to them. Family is very important to me. So of course when I got the call asking if I want to go firework shopping and to the car show with him, I said yes. The Fourth of July is our favorite Holiday. We always put on a huge show and have a lot of fun. We have been told many times by people around town that they love our show and ours is better then the towns. But I digress. 

So even though I was hurting, I woke up hurting, I got dressed and went out with him. I don't really like car shows but I decided to go, get out of the house for a bit and get a little exercise. I knew right away while at the store looking at fireworks that the pain was gonna be bad, but I didn't say anything. 

After shopping Dan decided we where gonna pick up Nate. Nate is like a second brother to me, so I was cool with it. Nate's family. I should have realized, getting two guys together at a car show, it was gonna be a long day. 

We walked around stood at each car and talked, twice. My lower back and my left hip where killing me. I needed to sit. When Dan finally asked are you ready to go, I was excited. Getting in the car and going home sounded like heaven. So we walked to our car, why they put the blockades so far away so you have to so far away is beyond me. I think they wanted to torture me.  But we finally made it.

I knew I'd be in pain, I knew there wasn't a way to get all my pain to go away, and I have accepted that. But I never got to be sad. I went from the diagnosis to acceptance right away. There's gotta be an in between. I need to be able to cry and as THIS SUCKS! So I'm going to go back and let me self do just that. 

THIS SUCKS! I hate this, I have a high pain tolerance thank god, but this hurts! I know it's not the worst pain out there. I know there are others worse off then me and I should be grateful. But right now, I'm going to let myself breakdown. Because sometimes, you have to breakdown before you can put yourself back together again. And I'm going to allow myself just that.

Today I'm gonna cry a little, and mope and pout. 
Tomorrow I'll go back to accepting it.

Friday, June 22, 2012


Am I the only one who can't stand dreams? 
Ever since surgery my dreams have been strange. Beyond strange. They are random, scary, confusing and heart breaking. I'm use to have terrible nightmares after surgery, now not so much. But damn, I'd give anything to have those nightmares back. Anything is better then the dream I had last night. 

Last night I dreamed of being pregnant and having a beautiful baby girl.
Something I know will never happen. 
And it's heart breaking!
Why must my dreams tease me?

This isn't the first time I've had dreams of being pregnant and having babies. I've had quite a lot. And it hurts each time. To dream of having that beautiful baby, feeling the love of a mother and her child. Then waking up and its all torn away. It sucks. 

This is the first time I've had a girl in my dreams, it's usually always a boy. My Shawn David. 
I can't decide if it hurts more or less.
Probably the same.

Monday, June 18, 2012

I'll Never Be Whole

And I'm okay with that.

I had a discussion tonight with a fellow CHDer who thought I had a bad attitude. Tempers flew and we each got a little pissy. I also found I enjoy pissing people off a little to much and might need anger management. But I digress.

Before I go on to tell you why I don't have a bad attitude, let me say something. I have had a bad attitude. I've been a negative Nelly before. I'm not perfect, no one is. 

So we where discussing my recent Psoriatic Arthritis diagnosis and I was telling him how I am in pain. He said he hopes I get better, and I say there is no cure. That's when he goes into tell me not to think that way, and I need to talk to people who have been healed. I had no idea how that would help, the people who where healed probably didn't have what I had. That's when tempers flew and we started getting bitchy at each other. 

But eventually we both cooled down and I got to explain my point. And that's really what this post is about. I want to share this with whoever, if any, read this blog. 

My heart, it will never be whole. I've come to accept that over the past 3 years. I'm okay with it. I know I, and my doctors, are doing everything we can to take great care of it. I know I have a few limitations, but I do live an almost normal (whatever normal is) life. 

My pain, it will probably never fully go away. I've accepted that, I'm okay with that. At this moment me and my doctors are working to manage it as best we can. And it's working. It's well managed. 

Accepting that I'll never be healed, that doesn't mean I have a bad attitude. Accepting it has helped me live a normal life. I'm not waiting for a cure and constantly being disappointed. I accepted it, I am happy. I have a great life. If a cure ever does come, well then I'll just be all the more happier. 

But right now, I am happy. I'm not waiting, I'm living, and accepting.