Kiwi

I had my appointment with a Nurse Practitioner. She didn’t really know what to do with my Huntington’s, and had terrible bed side manner. Other than that we are moving in a forwardly direction. She gave me the number of a local neurologist, and I am going to call and make an appointment soon (Have to get some paperwork first; Not stalling).

She also put me on a anti-depressant (Celexa) to see if it will level out my moods some. I am not a fan of taking pills, and I was really scared. I took my first dose last night. I woke up this morning feeling hung over. I also felt dizzy. It lasted until around eleven, and then the haze cleared up.

I read over the side effects and expected the above. I also read that it causes diarrhea which is fun. Already have enough stomach problems from the lactose intolerance that I won’t even notice. However, the side effect I am most worried about is prolonged painful erections. Don’t want one of those. :)

I’m taking half doses for a week and then going up to a full dose. Side effects will clear up sometime in the next few weeks, hopefully. Keeping fingers crossed.

So, I did not get the new job I was hoping for.

It is okay. I am happy with the people I work with now. I would have missed them terribly.

Also, I have officially blamed my religious friend for dropping the ball on this one. I don’t think he prayed hard enough. It is okay, don’t be upset. I have informed him of his fault, and he said he will do better in the future.

The above conversation with my religious friend is an example of how I work with awesome people now, and leaving them would have been lame.

In the end, I didn’t have enough experience with College students to get the job. No big.

:)

For the longest time after receiving my positive test results I was afraid to tell people about it. At first I wasn’t sure why, and then I sort of got over it. This morning, I was thinking about it, and I think I pinpointed the reason.

When I was in Jr. High we did a unit in science on gene mutation. One of the diseases it mentioned was Huntington’s. When the teacher read off that one of the symptoms of this disease was uncontrolled muscle movement the boys in the class thought this was funny. They started making jokes, and punching each other.

I was so hurt I wanted to cry. At this age I didn’t know if I was going to get the disease, but I knew it was a possibility, and my mother had it. I left the room, but I never got over their reaction. I know now that they were just young boys, and had no idea my situation, nor that they even thought about how they could hurt someone else, but I was afraid to tell them about my situation. I held onto that for a long time.

It feels good to let people know now…well some people anyway.

So my boyfriend and I have been having a harder time than usual as of late, but we are both working really hard to pull up out of the problems we are having. I heard this song on my Itunes, and it reminded me of my boyfriend. This is the first song he ever sang to me while playing guitar. Made me remember all the good things we have done, and all the good times we have had. I wanted to share it with all of you.

The World Spins Madly On: By The Weepies

Woke up and wished that I was dead
With an aching in my head
I lay motionless in bed
I thought of you and where you’d gone
And let the world spin madly on

Everything that I said I’d do
Like make the world brand new
And take the time for you
I just got lost and slept right through the dawn
And the world spins madly on

I let the day go by
I always say goodbye
I watch the stars from my window sill
The whole world is moving and I’m standing still

Woke up and wished that I was dead
With an aching in my head
I lay motionless in bed
The night is here and the day is gone
And the world spins madly on

I thought of you and where you’d gone
And the world spins madly on…

I love my cat, but this morning she is driving me nuts! She sat on the floor next to the bed and made throaty grunting noises for ten minutes. When that wasn’t enough to get me out of bed. She climbed on the bed, and meowed in my face for another minute.

I finally got up.

She wanted me to follow her downstairs, so I did. She led me to the kitchen to show me that her cat bowl was partially empty. Not empty, but a quarter empty.

A quarter empty!

She jumped up and looked at it, and then looked at me and then meowed. I put another scoop in her bowl and she was satisfied. I can’t believe she bothered me that much when she still had food.

At least she knows what she wants. Such a head strong cat!

Got in another fight with my boyfriend today. I hate how much we argue. I felt like he was egging me on the entire time, but he says he wasn’t. He also thinks that I am too angry for the situation, but feeling like he was egging me on explains why I’m so mad.

For some reason he is quick to change his emotions to different states, whereas, mine tend to hang around and linger. It isn’t that I want to stay mad. It just happens that way. The fact that I stay mad longer also makes me look like a jerk. He can switch to happy where I can’t.

The last time we argued I felt like we really made some good solutions, but I feel like those got thrown back in my face today. So I guess not.

Now comes the worst part of the entire thing. I am still mad mostly because things are all awkward now. I feel like I can’t say anything or I’m going to start fighting all over again. He is sitting in his office, probably because he is afraid if he talks to me things will just escalate again. But him being standoffish and me not feeling like I can talk makes me angry, which perpetuates things.

This is stupid. I wish it were later so I could just go to bed.

So I have an appointment with a general practitioner coming up on Wednesday. Hopefully that is the right step toward taking an active stance against my Huntington’s.

I might just rock this doctors world. Hope she is ready for me!

I have been pretty upsetty lately, but I think I am finally coming back around to good. Getting out of town was a good start. What made it even better was a got a job interview for a position I really want. I think it went well. It is all crossing my fingers and waiting for a reply now. She said by Tuesday, so everyone send me good wishes. :)

Not even my blown out tire ruined my day. That has to mean I am getting better.

  My boyfriend and I fight a lot, but lately he thinks that our fighting may be a side effect of my anger at my situation, or a side effect of my illness. He also thinks that I should take a more proactive stance against my oncoming symptoms.

I don’t want to; I’m scared.

I decided that it is probably a good idea to start seeing a regular doctor to track my functioning. I also thought maybe this doctor could refer me to a specialist. We’ll see how it goes. I am going to try to get over it, and start working with doctors. I have a long list of things that are wrong.

I might go back to a counselor. If I can find one I like this time.

Just thought that I should share my efforts to move forward and stop pretending that I am going to be fine. This is a big step for me.

  I am so tired of being responsible. I don’t want to go to work and slave away. I want to go out and do things with the time I have left. I feel so cheated. I worked my butt off to pull myself up from the crap town I came from. I went to school, I went to college, I got my Masters. Now I get the crap end of the stick. I’m frustrated that so many jerk-off slackers get everything handed to them, even though they haven’t worked for it, and I get crap. Oh, joy to me.

  I’m sliding into a lasting depression. Getting out of bed every morning is become a chore. Some days it is just too difficult and I want to give up.

  I go to work, and I hang out with my friends, but a lot of the time my smiles are fake. I don’t feel like smiling. Today at work I didn’t fake it. I didn’t smile to make people feel better. Two people even noticed. One of my friends asked what was up, and one of them did silly dances to try to cheer me up.

  I talked to my boss about going to our HR department to get some information. She asked me what I needed, and I told her I had a disease that may require me to start driving to a specialist in Seattle. She asked what disease, and then had no idea what Huntington’s was. She asked if it was genetic and I told her I got it from my mom. She asked how my mom was and I told her she was dead. She got quiet, and then said I looked like I was handling it well.

I look like I’m handling it well? I’m standing in front of her depressed and broken, but I look well. I wanted to scream at her. Instead I walked away.

   I initially started this blog so I had a place to talk about my feelings, and what I was experiencing. I was going to keep in anonymous so that no one would know it was me. It felt empowering to be able to say whatever I wanted in a space where no one I knew could judge me. It was okay with me if no one was even reading it. Either way, I liked it. 

  I later decided that I should tell people that are close to me about my blog so that they could better understand how I feel, and what I am going through internally. I have a hard time expressing myself, and I have a hard time making coherent sentences when I am upset. I thought that this would be a wonderful opportunity for me to express myself to people who care about me, but then I became hyper aware about what I say, and what people might think of me. I had started editing myself, and not sharing certain thoughts, or emotions. It was a good thing with a slice of bummer pie. Now I can’t talk about fighting with my boyfriend, or my twisted depressive thoughts. People may get the wrong idea. I was no longer sharing freely, but informing with limitations.

   Recently a fellow bloggers have reached out to me. They have told me they read my blog. I was amazed, and humbled. It is nice to know that people are reading this even if it wasn’t the initial intent. With this new information I feel like it is important for me to get back to the roots of this blog.

  So I am putting out an all points bulletin. I am done holding in thoughts and feelings. If you don’t like it, I’m sorry. I am not intending to hurt anyone’s feelings. It is also important to mention that any information given will be skewed with my personal bias. I will try hard to share stories that are free from this bias, but I am human, and if I am upset I am extra unaware of any bias. I want this blog to be somewhere I am free to talk about the crazy things that are going on in my head, and how my life has changed, for the better or for the worse, because of my disease. And yes, there have been some positives in my life due to my positive test results.

   Anyone out there in blog land that cares to read this blog I thank you for taking the time to care about someone you don’t know. If you follow me I’ll follow you. If you have any questions I am more than willing to answer them to the best of my ability. If there is anyone out there living in similar circumstances, or dealing with Huntington’s in any way that wants to send me a line to make a connection I am here for you.

I want to reach out and I want to help create unity in the face of a crazy disease. As I always say, there is no reason we should have to deal with this disease alone.

Thank you to everyone who has written to me, read a post, or re-blogged something they have found here. I appreciate you. You have an impact on my life, and any good impact is welcome no matter the size.

I thought that the sunshine would bring better feelings. That however is not the case. I am still having a hard time convincing myself that I need to be at work instead of out doing stuff. I don’t even know what I should be doing, but I feel like my time would be better spent with friends and family rather than working this job. Everyday I get home from work and feel like my days are wasted. I see the little time I have left and it makes me agitated. Then I spend my six hours before I go to bed cranky and irritable. I have tried staying up later to make up some time, but then I am just tired all day and extra cranky.

I really just want to wake up happy rather than worried about work, overtime, and my dwindling time.

The snow made it hard because I wanted to go out, but I felt trapped by the snow and ice. I didn’t want to drive on it, or walk through it. Now that the rain and sun are here I feel worse because I’m still not getting out.

This morning I woke up and laid staring at the clock saying, “You have to go to work or you’ll get fired. Your boyfriend can’t support you both, and shouldn’t have to. Can’t pay the bills if you don’t go to work. Get off your lazy ass and go.” My answer to myself was, “Why shouldn’t I be playing in the rain, driving to see family or friends, painting my soul, or writing a novel?”

I really don’t have a good retort. I am torn and tired. I just want to cry until my fairy god mother shows up with my wishes. I have a feeling she’ll never come. What a bitch.

I had a blast on my vacation. I got to swim, and hike. The sunshine was wonderful, and I’m happy to say I am sun burnt. I got to spend some time taking photos of things I haven’t seen a million times. Made my creative side roll over and get up for awhile. I took so many photos! I have them posted on my photo site. They will show up over the next few days. carriesawesomephotos.tumblr Enjoy them! I know I do.

I had a terrible dream the other night. In my dream all of my friends were gathered around and they were telling me how much they loved me. They were saying they were going to miss me, but it would be better this way. Then they gave me some music to listen to and buried me alive. They had decided the best way to handle my Huntington’s Disease was to lock me away before I got sick.

At first I was okay with my music, and then I started to panic. I couldn’t get out, and no one could hear me. That is when I woke up.

I was so terrified I woke up my boyfriend and made him hold me. I couldn’t shake the bad feelings it gave me. It still sets my heart rate through the roof when I think about it.

So nice to be home after a few days away. I have missed my pets, and my bed. Sleep is going to be awesome tonight.

My boyfriend, his son and I are going to his dad this weekend. I’m excited to have a new place to take photos of. Feel like I never get out of town anymore. It is going to be nice to be out in the sunshine with nothing to do, but take photos.

Well, I went for a long walk. Walked just over a mile and a half. Stopped in and had some dinner and a beer with some friends. It was a good afternoon. I had fun.

It is so nice outside. I just want to be out in the sun. I can’t find a good excuse to go out and be in it though. Everyone is busy but me. I was thinking about walking downtown, but there isn’t really anything to do once I get there. This is lame.