I know that title may seem strange. Really strange. But, H is having a good day. He is a vet. He served in the Army for about 3 years. Because of my job and link to the networking world I came across all the Veteran's Day freebies and discounts. I relayed them onto H and he planned to take his Dad (who is HD+ and a 20 yr vet) around town to soak them all in.
He left early this afternoon excited. Ready to spend the day hanging out with his dad and feeling respect for the time he did serve.
On the agenda: Free car wash, free meal at Applebee's, discount at the Sporting store and a free Bloomin' Onion. I hope he and his father both are smiling and enjoying this day. It is about them, but in a good way for once.
Thank you to all the Veteran's! I salute you, your families and your fight!
Thursday, November 11, 2010
Monday, November 8, 2010
Maybe I'm the Crazy One...
Sometimes I wonder if I am the crazy one here. Really, there are days I can't think of anything else other than HD and our current and future situation. I don't necessarily worry, just wonder, dwell, make-up scenarios in my head. I hope that H doesn't think that way all the time. He says there are some days he hardly thinks about HD. I really hope so!
My first couple posts were kinda negative. Here is a positive post for ya.
Today H awoke, after noon like usual. Watched tv for a while and then got the idea to go to the book store. What a change! He is reading the last 3 books of the Left Behind Series. He realized today he doesn't have them so off he went to the used book store. It makes me smile when he gets excited about things.
Last night we put the kids to bed an hour early (thank you time change) and instead of sitting quietly watching Monday Night Football I asked him to play a board game. I love board games! We have quite a collection but don't play nearly often enough. We played ESPN DVD Scene It. He beat me, big surprise there, LOL Then we opened up a new game the kids got last year. It's a kids against parents trivia type game. Whoa, the parent's questions were hard! Can't wait to play it with the kids! It was so nice to sit and enjoy our time together. Lately it feels like we sit in the same room yet don't talk, share, heck, most of the time even touch. We aren't mad, just tired and worn out. So here is a suggestion for you, when you and your spouse are having a hard day, put the kiddos to bed, turn on some music and get out a board game. Best night we've had in a long time!
If you're reading this post go ahead and follow me! Let me know you are here. Do you have a blog? Please let me know so I can connect to you as well. We aren't alone, whether it's HD or any other disease or disability. There are spouses out there with the same situations and feelings we have.
My first couple posts were kinda negative. Here is a positive post for ya.
Today H awoke, after noon like usual. Watched tv for a while and then got the idea to go to the book store. What a change! He is reading the last 3 books of the Left Behind Series. He realized today he doesn't have them so off he went to the used book store. It makes me smile when he gets excited about things.
Last night we put the kids to bed an hour early (thank you time change) and instead of sitting quietly watching Monday Night Football I asked him to play a board game. I love board games! We have quite a collection but don't play nearly often enough. We played ESPN DVD Scene It. He beat me, big surprise there, LOL Then we opened up a new game the kids got last year. It's a kids against parents trivia type game. Whoa, the parent's questions were hard! Can't wait to play it with the kids! It was so nice to sit and enjoy our time together. Lately it feels like we sit in the same room yet don't talk, share, heck, most of the time even touch. We aren't mad, just tired and worn out. So here is a suggestion for you, when you and your spouse are having a hard day, put the kiddos to bed, turn on some music and get out a board game. Best night we've had in a long time!
If you're reading this post go ahead and follow me! Let me know you are here. Do you have a blog? Please let me know so I can connect to you as well. We aren't alone, whether it's HD or any other disease or disability. There are spouses out there with the same situations and feelings we have.
Thursday, November 4, 2010
Living in no where land...
Ya know, living out in no where land is hard. There really aren't any services available. I have been looking up support for caregivers and there really isn't much. Yeah, there are some elderly care, memory loss this and that but come on, I am not even 30! We are a young couple with a rare disease affecting us. Times like this living in a huge city would help. I have been searching for blogs of younger couples facing illnesses. I can't seem to find many. What about the earlier stages of HD.... where are those people hiding out?
It's hard to talk about how I feel with family members or friends. Why? Because they DON"T get it. They just don't. And it's hard to be supportive about something you don't even understand. And you know what, If I hear someone say, "Oh it's going to be ok" I might strangle them. Really. Isn't that about the dumbest thing to say to someone who is obviously hurting? You might as well just say, "You know, I don't care and in 5 mins I will have forgotten all about your problem." So no, I don't waste much time venting or sharing with those close. I'd rather talk to a stranger who blogs on the Internet, at least they can relate. And.... it's not always fair to share with those close to us. They know him too. It is kind of like 'talking behind his back'. They are his relatives and friends as well. I stay so bottled up.... then I blow up. The last few months have been different though. Maybe I'm depressed. I don't know. But, of course I don't have medical insurance so I won't be going to my Dr. Oh how the world works...
It's hard to talk about how I feel with family members or friends. Why? Because they DON"T get it. They just don't. And it's hard to be supportive about something you don't even understand. And you know what, If I hear someone say, "Oh it's going to be ok" I might strangle them. Really. Isn't that about the dumbest thing to say to someone who is obviously hurting? You might as well just say, "You know, I don't care and in 5 mins I will have forgotten all about your problem." So no, I don't waste much time venting or sharing with those close. I'd rather talk to a stranger who blogs on the Internet, at least they can relate. And.... it's not always fair to share with those close to us. They know him too. It is kind of like 'talking behind his back'. They are his relatives and friends as well. I stay so bottled up.... then I blow up. The last few months have been different though. Maybe I'm depressed. I don't know. But, of course I don't have medical insurance so I won't be going to my Dr. Oh how the world works...
Wednesday, November 3, 2010
Planning for the future...
Hubby and I talk about the future a lot. HD is not a pink elephant in our house. We speak openly about it almost daily. Especially lately. H has not been able to work consistently for, well, since I've known him. Since we have a large family money is kind of important. He has been adamant that I not work and stay home and care for the kids. Besides, I have no schooling so working would be almost useless. I will be starting school in Jan for the 1st time ever. As of now I have a plan to get my degree in Respiratory Therapy. That could change slightly. I do know I want to be in the medical field (not a nurse or Dr.). I am interested in that field, it makes good money and it is a position open all over the country. I will one day be the bread winner and I need to pick a field that is going to support my family and I enjoy.
He did just apply for SSI/Dis and to have his V.A. % adjusted. Both his psychiatrist and I thought it was time. He can still finish his degree and even help start the HD foundation we are planning. But since his mood/energy/concentration are always changing holding a steady job just does not work. No reason for him to continue to fail in that aspect over and over. It's hard to have money on our mind along with everything else. But somehow we always make it. God makes sure of it.
He did just apply for SSI/Dis and to have his V.A. % adjusted. Both his psychiatrist and I thought it was time. He can still finish his degree and even help start the HD foundation we are planning. But since his mood/energy/concentration are always changing holding a steady job just does not work. No reason for him to continue to fail in that aspect over and over. It's hard to have money on our mind along with everything else. But somehow we always make it. God makes sure of it.
Monday, November 1, 2010
What's to come...
So, it's Friday, my daughter's birthday. Kids are out of school and we plan on hanging out and having fun all day. Hubby gets a call from his dad's step-daughter. They have thrown his dad out of their house. Says he is yelling, semi-violent and taking the door knobs off. Hubby gets on the phone with his dad now and he is pretty much out of control. So angry and upset you can barely understand him. He is being very unreasonable and driving around mad. The rest of the day catered around the FIL and his family drama. They were going to call the police on him so we had to intervene (and couldn't just ignore it all). They don't understand the real effects that HD has on a person. They read the wikipedia description and are 'all knowing'. I'm not condoning his actions and I do think he needs more help, but geesh, he is sick people. You knew that when you married him a year ago. We tried to warn you it would be hard, especially since she (the new wife) still has kids to raise. My FIL is usually happy, kind of in a child-like, naive way. But when he gets angry watch out, he goes on horrible rampages. He makes dumb decisions like turning in family members to Child Services just to get back at them. He wastes money, forgets he's married, and acts like a fool. I hope that when my hubby gets older it will be different because of our strong support system. We have a big group of people who care for him and us.
It's just hard. Hubby says he will never get violent or angry and yell or throw things but I know it is a possibility in the future. I know he doesn't want to do those things but one day his mind is going to think about it differently. I look at my FIL and see H in 20 years. Although they are 2 diff people the disease will grip hold of him in a lot of the same ways. I can't picture him a mean and hateful person but it seems the disease can do it to the best of them.
Do any of you look at older parents or family members and wonder the same thing ?
Any insight or opinion from spouses would be appreciated.
Thanks.
It's just hard. Hubby says he will never get violent or angry and yell or throw things but I know it is a possibility in the future. I know he doesn't want to do those things but one day his mind is going to think about it differently. I look at my FIL and see H in 20 years. Although they are 2 diff people the disease will grip hold of him in a lot of the same ways. I can't picture him a mean and hateful person but it seems the disease can do it to the best of them.
Do any of you look at older parents or family members and wonder the same thing ?
Any insight or opinion from spouses would be appreciated.
Thanks.
Monday, October 25, 2010
Welcome, unfortunately
I say unfortunately because if you are reading this then the horrible disease Huntington's has made it into your life somehow. Although the people affected are our loved ones, beautiful inside and out, the disease is not.
I'm B and I'm married to H who is + for the Huntington's gene. We are a young couple with children. I have started this blog as a way to share my feelings about HD in my own way. I will be upfront with my readers, I am keeping this away from my husband so I can be completely honest without hurting his feelings. I would ask that only caregivers and loved ones continue, not HD+ people. There are 2 sides to living with HD and I fall on the caregiver side and will write from that perspective.
I like my life, I am very thankful for all my blessings, I am not angry with God. I generally can be found with a smile on my face. However, I am not going to sugar-coat anything I write and hope to be both educating and honest. I apologize if some days are negative but hey, that's life sometimes. I welcome any feedback, questions or discussion from other CG's as well.
-B.
I'm B and I'm married to H who is + for the Huntington's gene. We are a young couple with children. I have started this blog as a way to share my feelings about HD in my own way. I will be upfront with my readers, I am keeping this away from my husband so I can be completely honest without hurting his feelings. I would ask that only caregivers and loved ones continue, not HD+ people. There are 2 sides to living with HD and I fall on the caregiver side and will write from that perspective.
I like my life, I am very thankful for all my blessings, I am not angry with God. I generally can be found with a smile on my face. However, I am not going to sugar-coat anything I write and hope to be both educating and honest. I apologize if some days are negative but hey, that's life sometimes. I welcome any feedback, questions or discussion from other CG's as well.
-B.
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