Kiwi

My mother had Huntington’s Disease. She had me when she was 30. My parents got a divorce when I was little, and I don’t remember her having symptoms at that time. After the divorce she disappeared for several years. In fact, I didn’t see her again until I was a teen. When I saw her as a teen she was obviously sick already. She had very sever symptoms.

I have started wondering how old my mother was when she first started having symptoms, and how fast they manifested. This was difficult to do when I wasn’t around. Lucky for me, my half-sister was with my mother through a portion of this time.

My sister said that our mother started showing signs when she was in her early thirties, and that they didn’t progress quickly until my mother was in an accident and broke her back. After that injury she progressed very quickly. My mother had to be put in a home for the last few years she was alive. I was too far away to be of any help. I went to college on the other side of the country. My sister took care of her for awhile, but my sister had twins, and two babies plus mom was too difficult for her. My mother died at age 50.

I was hoping that finding out how my mother progressed would help to set my mind at ease, but it hasn’t. Now I worry that thirty might really be my cut off before I become obviously symptomatic. That is a terrifying thought at age 27. The good news from all of this is that my mother didn’t progress  quickly until her accident, so, I can look forward to that at least.

I taught my step-son how to do a tumble roll that he didn’t already know. It was hilarious watching him try to master the roll. See this is why kids need cool step-moms. How else do they learn weird rolling maneuvers they can do in the living room to annoy their birth parents with?

My step-son was playing hide and seek with our corgi today. He would throw the ball down the hall, and while the dog was chasing it, he would hide from her. She would come back with the ball and start looking for him. She could usually find him right away. The only time she was really confused was when she stopped to lick her pawn and then forgot what she was doing.

At the end, he hid in the bathroom. It has two doors. Every time she would run to one he would shut it and go open the other. The dog ran back an forth between the doors probably eighty times before she got too tired to keep running. She had to take a water break.

They are so cute.

We just told my step-son about my Huntington’s Disease. He is 9. We decided that he was old enough to know the basics of my upcoming condition. I was afraid if we waited to long he would think we were hiding it from him. I didn’t want him to think I ever lied of hid anything from him.

I was really worried that he would react in a negative fashion, but he seems to have taken it really well. I know that he understands the symptoms, but we didn’t do a very good job of explaining the dying aspect. I feel like that is something that he will have to ask about directly.

I have left it open to him. I told him if he has any questions that he can ask me and I will answer him honestly. I hope we made the right decision in telling him now.

Well, the good news is now I can give him one of the Awareness bracelets that I just bought! He is going to love that!

I’m having a really rough day. My emotions seem to be all over the map. I go from wanting to be alone, to lonely, to mad, to crying. I don’t know what I am supposed to do to control them. I’m already on medication, and it helps a lot of the time, but days like today make me wonder if I need something stronger.

On the other hand, I’m afraid that if we keep increasing the dosage than we will run into other problems. I’m really just at a loss. I feel like days like today push away my family because they don’t know how to handle me either. I’m just frustrated all over.

I’ve been having a really twitchy couple of days. It makes me upset. Every time it happens I want to jump up and run away screaming. The worst part is not knowing if they are related to my HD or if they are just twitches. There sure does seem to be a lot of them over the last week.

We are going to tell my step-son about my Huntington’s this weekend. I know it is a good idea. He is eight; he has a right to know. We don’t want to wait too long, for fear that he will think we were hiding it from him. I know that I was pretty upset as a kid that I did not know about my mother’s condition sooner.

I have to admit that I am really worried about it. I’m afraid that he is going to treat me differently than he does now. Right now we have a great relationship. He treats me like his best friend, and I love that. I’m afraid that he is going to pull away from me. I’m afraid he is going to start treating me like I’m sick.

I’m also afraid of the questions he is going to ask. I don’t want to stress him out about it. I don’t want him to think I’m dying, right this moment. I also don’t want him to think that I am broken or something.

I feel like I’m stressing way too much about this, but I don’t know how else to feel. In the beginning, when I first got my diagnosis, I didn’t tell anyone really. I was worried about how they would treat me. I was worried people would pull away from me, and some of them did. One of my best friends pulled away so much I rarely even hear from him now. 

This is my fear with my step-son. My boyfriend tells me that I am giving him too much adult behavior in this worry of mine. I hope he is right. I hope this goes well. I’m crossing my fingers!

My dryer is working! Right now! I am drying clothes as we speak. Have three weeks of laundry to catch up on. At least I’ll have something to do tomorrow! Poor boyfriend and step-son are going to be putting away laundry for the rest of their lives!

Put out an application to a job that actually sounds good! Could be making quite a bit more than I was, and potentially more than my boyfriend is making at NASA! Wish me luck!

Laid down in my bed to make my head stop aching. Wanted to lay down for ten minutes of piece. Instead, my boyfriend decided he needed to mess with me and the take a nap. I fell asleep too. My ten minute rest turned into a forty-five minute nap.

My head still hurts, and I was so comfortable that I didn’t want to get back up. I could have stayed in the sheets for the rest of the evening slipping in and out of consciousness, but it is almost dinner time, and I have laundry to do.

Why do so many people online have to be creepers? I can’t even play a game on pogo without some weirdo trying to get my personal info! I just want to play a game of backgammon. I don’t want to be your girlfriend. Forgive me!

Having my boyfriend going to work, and having nothing to do at the house but clean has proven to be boring. It also makes me lonely. I miss having friends I could call up and go out with at a moments notice. I feel isolated over here.

This weekend we went and picked up my step son. I’m hoping that having him around will pick up my spirits some. I’m definitely starting to slip into depression. He will definitely keep me busy, and that is a good thing. I really hope he likes it in our new place. We already have more kids in the new neighborhood than we did in the old neighborhood. That has to be a good start!

Working on getting my loans deferred while I look for a job. Did one online and it was really easy, but the other one is being a pain. Had to request the forms via email. Hope this works out well.

I’m standing in my kitchen on one side of the bar, when I see my cat on the other side about twenty yards from me. I make a shocked face and duck behind the bar so she can’t see me. I wait a second of two and then look at her again. I wait till she sees me and duck back under the bar. I do it about five times with no reaction from the cat. I decide to stop looking silly alone. I stand up to look, and the cat is gone. I have just enough time to register that she is no longer across the room when she jumps onto the bar stool that is across from me. All I can see is her eyes and her ears. She startled me so much I almost shouted in surprise.

This is what I get for trying to mess with the cat!