blog

Fighting With Huntington's

Thu, 16 Jun 2011 19:20:12 +0100

My sister and I are not speaking. I am angry, sad and pissed. I feel sad and I know she does as well. When I fight with her though, its not her. We have never really fought. She has always insprired in me in so many ways. I know that when we fight now, I am fighting her disease. She has never been disloyal, heartless or unforgiving. But now she is somthing other than what I used to know. She is leaving me just like my mom. Right now I feel like she doesnt care about anything other than how she feels. I feel like she cares less and less about the good things in life. I know that its not her though. I feel as though me speaking to her will make it go away. It wont. In true hinsight she is losing herself and she cant control it. She has to watch my mom take the steps into the darkest part of the disease and watching this is making her angry because this is what her future holds. She is watching out what will happen to her. I cant imagine when looking out my mother I would be looking into a fun house mirror and see myself. I dont know if I will have it but my sister does and all she needs now more than ever is my shoulder. I am scared though. Scared to admit the truth of my future with out her or my mom in it. I cant imagine not being able to call my sister and talk to her about the daily gossip or to call her in tears because I had a bad day. This will not go away and I have to admit that to myself and remeber that as of right now, I am not fighting with my sister, I am fighting the disease and trying to hold it back. Being true to myself about our hand of cards we were dealt will help to move on with her and go through this process of decay. I am burned inside and out, I am falling asleep with my thoughts and I wake up even more angry. I dont know where to look or who to reach to. I am lost but my sister and mom are more lost.

Holidays with Huntingtons...

Tue, 04 Jan 2011 16:17:03 +0100

Welcome 2011.........
When the holidays come around things become more intense, such as making sure we are all together and that the holidays will never be forgotten because the one thing in the back of most of our minds, "Is this the last Christmas." I dont care who you are but when you have someone you love with Huntingtons you often find yourself wondering if its the last anything with this person. I found my self really sad on Thanksgiving. My sister, who has Huntingons along with my mother, was in my brothers kitchen with me cooking and trying to organize. The day seemed like a struggle but that could have been because there was 13 kids and 1 drunk brother. Putting all those things aside I just seemed to be staring at my mom with anger wishing she could get up and start cooking while cool, calm and drinking her ice tea. As I stared at her thinking this all she seemed to do was stare blankly at everyone running around her and trying to talk as much as she could with no response. I feel lonley when I look at her and sad that everything is in the past and thats just it, its in the past and gone, and never coming back.
Christmas came to us real fast this year like it does every other year. This year we had a great family Christmas, one of the best in my opinion. My mom was there and my sister and I cooked. I know she cant cook any more and I know this because at Thanksgiving she tried using non cooked turkey juice to make gravy but she is still able to be there. I know she is listening and watching all of us but I cant help but be sad when I am around her. I cant imagine the pain she is going through or maybe not going through. You can never tell because with this diseise, it wont let you know. Huntingtons doesnt pick its victims but when it has you, it cuts off everything about the person you once were. I am sad but holidays were good, I am sad but I have to be strong, I am sad but I cant make it go away. I am sad.

MARY TREES

Sun, 24 Oct 2010 18:14:25 +0100

I would like to thank my cousin Mary for helping me with the pictures of this website. Mary was diagnosed I believe last year. She should be an insperation to everyone. She fights on through walks, the beach, her puppies and everytime I see a post on her Facebook she is enjoying her family. I love how great she seems to want to make of her time. I live a bunch of states away from her but if I can see her fighting from here she must be. Anyway Mary thank you for sending those photos and being such an advocate for my site. In my heart and with love Jordan!!!!!!!

Blue Ribbon maybe?

Wed, 13 Oct 2010 04:45:53 +0100

Had my mom over for a couple days being I have not had much time with work, school and kids. We had a very nice time.
I am glad that she is still able to enjoy a beer :-) She asked if we could cook steaks because the home does not. Well we found out real fast why that is. She CHOKED!! My husband had to give her the hymlech!! I was a freaked out puppy! I am
aware now that I am going to be a wreck when my mother passes. I knew to some exctente that I would be but just her being that close to not breathing put me in a state of no breathing. I dont want her to go anywhere but she is slipping away right in front of my face. Slowly, day after day. I fear there is never going to be a cure, would I be so wrong to think this. The smart people are to busy curing things like cancer. Imagine a world where people EVERYWHERE cared about Huntingtons. Not likely but if I keep up what I am doing and everyone else affected by this does as well then MAYBE we could have a world wide ribbon just like the pink one or maybe even a pen.....

Happy?

Thu, 19 Aug 2010 06:02:37 +0100

I dont want anyone who reads my blog to misunderstand me. I know that I may seem to be an unhappy and dark person, but that is just when I am talking about the way I feel about this diease. I dont think there is anything happy to talk about when it comes to HD! But I want to tell a little about who I really am. I am a mother of three awsome kids and a wife to the most wonderful and caring husband in the world. I love to laugh, sing and cry when its needed. I love to watch my kids and see them smile. I love planning parties and bbq in the summer. My favorite smell is the smell of my babies when they just wake up. I feel lost in love and happiness with my little family but when I blog I am blogging about the dark cloud ahead of us. The cloud that holds our fears, sadness and guilt. I have alot of pain in store for me that I just dont know I can handle. I know God does not give us anything we cant handle and I am going to hold him to it but funny thing is I think HE thinks I am stronger than what I am. So if you ask, are you happy? I will answer yes I am. If you ask do I have bad days, yeah we all do. And if you ask is there sadness, I would say yes. But happy all the time.....No but I am working on it
:-p

Held Back

Wed, 11 Aug 2010 21:23:23 +0100

I feel held back from time to time. My husband talks about when we get old but the bottom line is I dont know if I am going to get old with him. I want to get tested but I am just not ready. I dont want to have to focus on KNOWING that I do have it when I have three young babies. I really need to keep my head in the game and take care of them. But I dont like those late night talks with my husband that make me wonder will I be there with you when you grow old and will I be there to watch our grand kids grow old? I do feel held behind that but I know that, that can not hold me back from life. I will know when I am ready to know just right now its not the time.

Disabilaty

Mon, 02 Aug 2010 04:58:14 +0100

So I just recieved papers for my sister who is trying to get diability. Since I am a close person to her I have to fill out forms as I did for my mom. I keep wondering how many more of these I will have to fill out in my family. It really hit hard today. Cried for a long time. Was very upset. Feel alone. I know that they are dealing with this and we are going through this but getting things like this make days a little harder then others.

Un Noticed!

Sun, 01 Aug 2010 18:30:41 +0100

The happenings of my life right now are very sweet but also really bitter. I am working, going to college and raising three kids. I love my life I dont want anyone to get it wrong or anything. I love my family and everyone around me. But right now I am dealing with a storm within myself. I dont know how to win the war. And to top things off I am not speaking with my sister. I know she is dealing with alot. But I feel as though my feelings are forgotten. I am in the stands watching this disease compete with my loved ones and ones in the stands are usualy never ask how they feel about it. I planned a trip to the pool and to the home my family used to live in before my parents divorced. Just a simple trip with my sister and mom and my kids.. She had apt so I wanted to wait. Waited for about two hours and then she decided then that she didnt feel up to going. Ok I have been pretty patiente up to this point I cant any more. I waited with three cranky kids to hear that she wasnt going. I would have gone and took my mom but I cant watch my kids and make sure my mom is walking ok all by myself. I cant tell if how I feel is obsered or realistic anymore. I feel mind fucked right now. I still havent spoken to her and I dont think she will call. I wish I was talking to her. I got my job to do a raffle for hotel and food packages over a month and the money will go to her funding to go to China. I found out last night. I still have some more things I am going to do but that will come in time. I am sad. But that will go un noticed.

Selfish

Fri, 30 Jul 2010 00:10:00 +0100

Having a loved one with this disease makes you feel helpless and afraid but another feeling that comes to mind is selfish. For me I feel selfish sometimes for feeling angry about it when I am not the one with it. But I am also going through this as well as my loved ones. I may not be going through the same things they are experiencing but I am going through alot of bad emotions. Sometimes I feel forgotten because I am healthy and all the attention is on the ones that have it. Or that it dont matter how I feel because I do not have it. I get so confused on how I should feel sometimes I wish I couldnt feel for a day. But most of all I feel like the things they do is always blamed on what they have. I am pissed off right now and I feel angry and helpless and sad but also selfish but that is one emotion I will disregard for I am not selfish I am human and can only take so much!!

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Tue, 27 Jul 2010 15:56:58 +0100

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