Monday, February 28, 2011

I'm Still Recovering

My open heart surgery was 19 months ago, almost 2 years. But I'm still recovering. Not heart wise. My heart is as good as it can be. But mentally.

Before my open heart surgery, I never had sleep issues. I never had to sleep with the TV on, or with my Ipod on. I never had the nightmares about heart lung transplants, or terribly painful deaths. After OHS I dreamed the earth was crushing me. Weird, I know.

The past three days have been an experiment for me, trying to sleep with no noise. No TV or no Ipod on. Plus I've been off sleeping pills for a while now. The experiment is okay, but its hard. I can't fall asleep til at least 3 AM. The noise is hard. I don't like the silence. But I've done it. 3 nights with nothing.

But my heater has been on because I'm always freezing, so that noise has been there and I truly believe that has helped. So I'm trying, but its a slow process.

As I have said, I am still recovering. Not heart wise, but mentally.

Sunday, February 13, 2011

The blog post.

I will not apologize for my status. I know you think it was a bipolar moment, and you know what, maybe it was. But I will not apologize for it.

My status wasn't about anyone in particular so I don't know why so many are taking it as I trashed them personally. I have never once, and will never trash a CHD parent. Or belittle what they have gone through. Because I do know, for them it is hard. I don't know how hard, and I can't imagine what it's like to have a child with a fatal illness.
But I do know what it is like to live with one.

I am not looking for attention. Even though I know that what you all think this blog post is for.

I am a CHDer. And your right, I was too young during my first surgeries to remember them. But I do remember the doctors appointments. I remember all the blood draws. I was terrified of needles. I remember waiting in the waiting room, hearing other kids crying, knowing that I was next. I remember the echo techs who pushed to hard, and made me cry. Knowing its what they had to do. But even though its something that needed to be done, that doesn't make the pain any better. I remember waiting in the ex rooms. Man I hated them, it was always cold in there, and I always had to take my shirt off. I hated having to take my shirt off. I hated the waiting. The tests. The horrible tasting medications.

I am also bipolar and at the moment, have a concussion. Do I complain? Sometimes, but it is my facebook and I can post whatever the hell I want.

Sometimes I don't know how to deal with this stuff. I don't know how to deal with the bipolar, I keep upping my meds and it doesn't seem to help. This post concussion syndrome is so very new to me. I don't know how to deal with it either! So do I vent on my facebook? Yes sometimes. Because I gotta get it out some how.

What I'm trying to say is this. I am not looking for attention (though I know you'll think this is my way of trying to get it. I'm not stupid) I post my feelings because it is MY facebook. I have a right to my opinions. I am a survivor, I am the one living with a life threatening illness. I am not going against any parent or research. The fontan was new when I was a baby, now its a common thing. I helped with that research! So how can I not be for it? I am not belittling what a parent goes through either. I know its hard on them.

I make the pictures/videos for awareness and awareness only. I do not have any hidden motive.

So trash me all you want. Your just making yourself look bad.

Tuesday, February 8, 2011

What kind of daughter am I????

I'll answer this question. A bad one. A very bad one!

I'm trying to find a background for a tag of my dad. And I can't remember anything he would like. I remember 2 things. Off Roading, he did alot, and he was out doorsy. But ever picture I look at I also find a question.

Did he hunt? Did he like hiking? I know he's been hiking but did he like it? I know he was been canoeing, does that mean he liked water? I know he liked trucks, but what kind? What was his favorite color? I know he liked guns, but what kind?

I didn't even remember that he hated sports until my mom told me about it a few days ago. I know he liked the song "where did all the cowboys go" by Paula Cole. But I don't know what his favorite music is. I know he liked horror movies. But what kind!? What was his favorite monster truck? What was his favorite thing to make??? What did he absolutly love doing?

Coming to the realization that I don't remember him, I think its a little hard then his actual death.

Thursday, February 3, 2011

My request.

Okay as I posted on the status before this, I feel really selfish. I feel like I'm wasting everyone's time on this little insignificant request. I feel selfish, because this wont help anyone but me. But I really need this.

As many know, I have CHD. Tricuspid Atresia, VSD, ASD, Mitral Valve Prolapse. I only have 1/2 a heart. I've had part of my heart removed and I've had issues with bradycardia, tachycardia and atrial fibrillation. I had my 6th heart surgery July 24, 2009, and I now have a pacemaker.

My parents fought for me as a child. They supported me, and raised me. They did everything they possibly could for me. Which is amazing, and what parents are suppose to do. But they shouldn't have to when their child is 21.

I can't work and I don't have any income. My dad died when I was 11 so its just my mom and brother here now to help me.

I live with my brother rent free. Which I feel terrible about daily. He has a new wife, and a new baby. They can barely make it themselves. They don't need me also.

My mom helps with groceries and pills and drs appointments, but shes barely making it through herself. My grandparents also try to help with money. But it just all makes me feel horrible.


I know they love me and are doing it because they do care. But still. I'm just a burden.

I make angel collages for parents. But I can't ship they out because I have no money. I have over 500,000.000 (I stopped counting at 1/2 a mill) in medical debt. I can't help out with groceries, or bills. I pretty much cant do shit to help anyone.

I can't get insurance or any government help. I've been denied for disability at least 5 times and am now waiting to plead my case in front of a judge. I don't know how much longer I will need to wait for this. But wait I will, its already been over a year.

Okay, so I wrote all that as background. This is my request.
I need prayers, good thoughts, whatever.

Please pray I get my disability. So I can have them back pay all my medical bills and be out of debt. So I can help out my family a little, like they helped me. So I can get insurance and better health care. So I can finally support myself and mail those angel collages. So I can move, and finally start my life.

Just sitting here hasn't been good for me. I need to start my life soon.
I need this. And I feel bad for asking for the prayers when there are people dying.
But I really do need this. I need a life.