Kiwi

   I think I got the raw end of this whole finding out I am going to get sick deal. I think that I should have been able to act the way that the counselors all fear I would. I should have been able to go out and drink the world away, crash my car, spend all my money, go on some crazy spree that left me vehicle-less in a state that isn’t my own, and getting to tell every one off that bothers me at any point for the next 25 years. 

   However, that is not what I got. I had instead to be responsible. I went to class not even an hour after getting my test results. I took my finals, and went to my job. I didn’t freak out on anyone, I barely even cried until days later. Instead of binge drinking I quit drinking, and since I was in a car accident a few weeks before I got my results I didn’t end up on any crazy car journey.

   The truth is, short of having depressed days and sad days, nothing has really changed. I like that things are more or less the same, but I feel like maybe it should have been made into some sort of big deal. I should have at least freaked out on the guy who gave me my results right? Nope. Nothing.

   In the end celebrating each year that I am symptom free seems good enough. The first anniversary is coming up fast; tomorrow night. I have friends going out with me for random fun on a week night. While everyone else is drunk, I am going to wear a silly hat, take photos, and have a genuine good time. I’m excited. It is sort of like a birthday only less obligatory.

This felt appropriate for today. This is Lonely Day by System of a Down.

Such a lonely day
And it’s mine
The most loneliest day of my life

Such a lonely day
Should be banned
It’s a day that I can’t stand

The most loneliest day of my life
The most loneliest day of my life

Such a lonely day
Shouldn’t exist
It’s a day that I’ll never miss
Such a lonely day
And it’s mine
The most loneliest day of my life

And if you go, I wanna go with you
And if you die, I wanna die with you

Take your hand and walk away

The most loneliest day of my life
The most loneliest day of my life
The most loneliest day of my life
Life

Such a lonely day
And it’s mine
It’s a day that I’m glad I survived

   I have had a good couple of days. I got some time off work, got some sleep, and got to spend extra time with the family. Today on the other hand is not going so well. Now that I am at home all alone I am feeling lonely and vulnerable.

   Isn’t it interesting how I spend so much time working to get alone time when there are people here, and now I am hoping that 9:30 gets here faster so I can spend some time with my boyfriend. I love that I am so fickle. It keeps life interesting.

   I want people to be here, in the house, just not in the same room with me. Does that even make sense? Anyway, this is a very lonely day, and I can’t wait for it to be over with.

This song is called How Soon Is Now? It is by the Smiths.

I am the son
And the heir
Of a shyness that is criminally vulgar
I am the son and heir
Of nothing in particular

You shut your mouth
How can you say
I go about things the wrong way
I am Human and I need to be loved
Just like everybody else does

There’s a club, if you’d like to go
You could meet someone who really loves you
So you go, and you stand on your own
And you leave on your own
And you go home
And you cry
And you want to die

When you say it’s gonna happen now,
When exactly do you mean?
See I’ve already waited too long
And all my hope is gone

   Since my positive test results, I have been weary of making new friends. I worry that most of my friends are going to fade away as my symptoms show themselves and progress. I know, from watching my mother, that being there to watch someone deteriorate is difficult to do. I figure that most of the friends I have will not want to do that. I don’t blame them. It is hard. Really, I wonder if making new friends is not just more heart ache in the end. The more friends I have the more people I have to lose. 

   I am afraid of dying alone. I am afraid that no one will care when I die. Making and losing friends feels like the first step toward that. However, I am not good at not having friends. I am social by nature, and get cabin fever if I have to stay in alone all the time. Feels like a catch 22.

   In the mean time I will try to make good friends, rather than any friends who’ll have me. Hopefully the time we can spend together now will make up for the time I am alone later.

   The one year anniversary of me getting my positive test results is just around the corner. I found out on December 1st of last year. I think that it would be nice to celebrate that a year later I am healthy, around, and doing well. I think I am going to invite my friends along to celebrate with me. I don’t drink anymore (to explain: Huntington’s causes a person to have more addictive issues than people without. I don’t want to be an alcoholic so I quit drinking. My last drinking opportunity is going to be my birthday this year.), so I am thinking that going somewhere that is not the bar would be fun. I live in a college town so the bar scene is really the only scene, but I will think of something. Maybe we can go to dinner, or go out for pizza. I don’t know. I’ll figure something out.

This is a P!nk song that I really like. It is called Leave me alone (I’m lonely). I think it speaks well to how I feel about my boyfriend some of the time. It is so bad then when we are fighting I want to walk away, but I don’t want to leave him there angry. Therefore, I sit in the same room as him and fume. Healthy I know. Anyway, I hope you like it too.

Leave Me Alone (I’m Lonely):

Go away
Give me a chance to miss you
Say goodbye
It’ll make me want to kiss you
I love you so
Much more when you’re not here
Watchin all the bad shows
Drinking all of my beer

I don’t believe Adam and Eve
Spent every goddamn day together
If you give me some room there will be room enough for two

Tonight
Leave me alone I’m lonely
Alone I’m lonely
I’m tired
Leave me alone I’m lonely
Alone I’m lonely tonight

I don’t wanna wake up with another
But I don’t wanna always wake up with you either
No you can’t hop into my shower
All I ask for is one ***kin’ hour
You taste so sweet
But I can’t eat the same thing every day
Cuttin off the phone
Leave me the ***k alone
Tomorrow I’ll be beggin’ you to come home

Tonight
Leave me alone I’m lonely
Alone I’m lonely
I’m tired
Leave me alone I’m lonely
Alone I’m lonely tonight

Go away
Come back
Go away
Come back
Why can’t I just have it both ways
Go away
Come back
Go away
Come back
I wish you knew the difference
Go away
Come back

• Scuba Dive 
• Learn to be more patient
• Learn not to judge as easily
• Learn to control my anger
• Learn to be more patient
• See all fifty states (Stepping foot in counts on this one. I am about a fourth of the way there right now, so it is a possibility.)

   I am very thankful this year. I have so many good things in my life to be thankful for. I have a wonderful boyfriend who works hard in school and at his job. He also works hard to make sure that I am happy and well taken care of. I love him so much, and I am so lucky to have a man who loves me as much as he does.

   I am also thankful that I have the privilege to help raise my boyfriends wonderful son. He is a great kid and I wouldn’t give up being with him for the world. I love him so much.

   I am thankful that I am symptom free this year. Another year is a blessing.

   I am also thankful for my family. My grandmother, my aunt, and my father in particular are always there when I really need them. They call me constantly to make sure I am okay, and my grandmother even follows my blog. That is amazing. I love them all so very much.

   I am thankful for my job too. In a time when a lot of people are jobless I am working full time. I get benefits, and I work hard. It is not my ideal job, but it is a good job, and I am happy.

   I am also thankful for my friends. They are a weird bunch of people, but I wouldn’t have it any other way. I have friends that I have had for years, and friends that I have just made at work, but all of them are amazing and supportive. They all care about me, and I care about them. I would never trade them out. I love them all.

  HAPPY THANKSGIVING EVERYONE! No matter how bleak things are there is always something to be thankful for. Look into your life and see how much good there really is. I am truly blessed and I am thankful for that too.

There are parts of this song that I really relate to. It makes me think a lot. Thought I would share it. This song is called Infected, and it is from the movie Repo! The Genetic Opera. (Love this movie. If you don’t mind gore you should check it out.)

SHILO: I’m…infected
I’m infected…by your genetics

Shilo I’m the doctor
Shilo I’m your father
Oh Shilo that was close…take your medicine

I’m infected, by your genetics
I’m infected, by your genetics
And I don’t think that I can be fixed,
No I don’t think that I can be fixed,
And tell me why oh why are my genetics such a bitch?

It’s this blood condition,
Damn this blood condition,
Mother can you hear me? THANKS FOR THE DISEASE!
Now I am sequestered, part of the collection,
That’s what is expected when you are infected

That’s what is expected, when you are infected,
That’s what is expected, when you are infected,

How much of it’s genetics? How much of it is fate?
How much of it depends on the choices that we make?
He says I have her eyes, did I also inherit his shame?
Is heredity the culprit, can I stop it or am I a
SLAVE?

I’m infected, by your genetics,
I’m infected, by your genetics,

What hope has a girl who is sick?
My dream of a life past this fence,
It really makes no difference,
Cause I know that I’ll never be fixed!

Tell me why oh why are my genetics such a,
Bitch

    I told a co-worker today about my Huntington’s Disease. She is a really out going woman who makes me laugh a lot, and today was no exception. Her reaction to my news was this: “Oh really? That can’t be right you are such a fun person.” I couldn’t help but laugh. Her reaction was so funny, and genuine. She made my day.

My Huntington’s is a mutation. Why couldn’t I get a fun mutation. Throwing fire would have been cool (until I got angry), or being invisible would be fun (I already feel that way half the time anyway). Huntington’s is a lame superhero power. I got the short end of the super stick, and that is super dumb.

   When do I reach the point when it is okay to use my disease to make jerks feel bad? Honest question. When some jerk says something about me being clumsy or whatever I want to say, “Oh, sorry. It is a side effect of my terminal disease.” I want to see what face they make.

   I know, I know. I won’t really do it, but it would be nice to pull someday. :)

   I’m mad. I woke up mad, and I have been mad all day. I just don’t know why I’m mad. When I don’t know why I am mad, it makes me scared. Being scared makes me feel vulnerable so I get more mad. Explains how I can be mad for so long, but doesn’t give me much on not being mad. It also makes me fight with my boyfriend, which makes me more mad. I’m tired of feeling mad.

   I have started compiling all of my posts into a journal. I think it would be nice to have in a paper form somewhere in my office. It also gives me a project. Now I can spend time printing, cutting, scrap-booking etc. Projects are good.

   I also have decided that I am going to put all of the songs that I mention on my blog onto a CD. I’m going to call it What HD Sounds Like.

   This way if I ever become famous I have a book and a CD to put out. If they are already done it will save me time later. Being famous…that should go on my bucket list. Perhaps being a rock star should go on there too. I have always wanted to rock out a crowd and hear them chant my made up stage name. I can’t sing or play an instrument, but being a rock star would still be a lot of fun.

    Whenever I am in a bad mood and we get in a fight, I fear that my boyfriend is making the wrong decision. I don’t want to fight with him, and I know he doesn’t want to fight with me. However, when I am going to have mood swings and be combative, as a side effect of my disease, I fear we are going to be in a constant state of arguing. This is not how I want my boyfriend to remember me. I do not want to spend the end of my life making his difficult and no fun. I hope that he knows what he is doing. I always make sure he knows that he can leave anytime he needs to. Even though this would break my heart, and I would be devastated, it would hurt less then knowing I was hurting him everyday of my existence.

Check it out.

http://projectsignatures.tumblr.com/

    I thought I would share some of the photos I take online. It is a hobby I really enjoy. So here is my shameless plug. Check out my photo blog @ carriesawesomephotos.tumblr.com I hope that you will all enjoy them as much as I do.

This song is Bad Day by Fuel. I feel this song hits it on the head.

Had a bad day again
She said I would not understand
She left a note and said “I’m sorry, I had a bad day again.
She spilled her coffee, broke her shoelace.
Smeared the lipstick on her face.
Slammed the door and said “I’m sorry, I had a bad day again.”

And she swears there’s nothing wrong
I hear her playing that same old song
She puts me off and puts me on

And had a bad day again
She said I would not understand
She left a note that said, “I’m sorry, I had a bad day again.”