Christmas has come and gone. Whether or not my children actually slowed down enough to appreciate the real reason we celebrate the season, I am not sure. No matter how much we remind them, they are always ready to move on to the next presents. We all have colds now so we are slowing down whether we want to or not. =-) More than last year, it seemed that we noticed how much we missed my grandparents and my dad. But it made us appreciate our familes and we enjoyed being together this Christmas. I am glad the busyness is over for a little while. We have New Years in a couple of days but I am glad we have this week before we start back to school and work.
We had to start Shelby in counseling a few weeks ago for her anxiety. She has always had really bad anxiety and it peaked a few weeks ago. She started having thoughts she shouldn't be having and so I started taking her to a counselor. My psychiatrist has been telling me for a couple of years that each of us need to be seeing a counselor so that we have someone we already trust when things get bad. Which is a great idea and I knew Shelby needed it the most but I just kept putting it off. And even during the 1st session, with several - and I do mean several- worries for her to talk about - Shelby told the counselor that her main worry was losing me. She said she doesn't want to be the only kid in college who can't call their mom. And she said that Cole wouldn't be able to make it without me. That is a lot of stuff for an 11 year old to worry about. But I am praying that the counselor will give her some ways to deal with her worries. She told me that we might still have to give her meds but we would not do that for a while. Unfortunately, Shelby is not worrying for nothing. I can't tell her everything is going to be "okay" and that is very frustrating as a mom because I want to make it okay. So when you think about Shelby, say a little prayer for her - that her mind and her heart would not be anxious. I am feeling horribly guilty about being the cause of Shelby's anxiety. When I take her to counseling, I sit in the waiting room and think "we wouldn't be here if it weren't for me." But I know I will have much more to feel guilty for before this is over. And so for now I will just be thankful that I have found a counselor that Shelby likes and trusts.
I did not intend for today to sound so depressing because I am not sad today. Today I am very thankful for the sunshine. I feel so much better when it is not gloomy outside!
Living with Huntington's Disease Sucks...for everyone it touches. The way each family & each member deals with it can change daily. I/We are no different...There have been many days when I would rather die than face my guilt. I am convinced that I would not still be here if it were not for the grace of God.
Sunday, December 28, 2008
Monday, December 22, 2008
Only 3 days left!?
Okay, so this weekend I had a couple of better days and I am very thankful! Not great but definitely better and I'll take what I can get. Friday, I got to go to both of the kid's Christmas parties at school. It makes me sad to know that was Shelby's last Christmas party in Elementary school! Saturday, I actually went out shopping with my family - and enjoyed myself! This sounds silly but I haven't been able to do that lately. I even felt pretty good on Sunday. Good enough to do my Christmas cards! Maybe this is the beginning of me feeling better. I don't want to be depressed at Christmas.
I am glad we don't have to travel far like so many people do. We will have Christmas Eve at my Mom's and Christmas day at my older sister's house. Then on Friday we will go to Clarksville and spend the night at Chip's parents house. Spending the night is not my favorite thing to do. All of Chip's family spends the night so you can imagine how much my nerves love the chaos. But the kids love it so it is worth it. :-)
Today I am thankful to have my kids at home. I love having them home. We're going to go get Chip's gifts. It's always fun to see what they pick out for him!
I want to thank everybody for their encouraging words. I really do have great friends!
I am glad we don't have to travel far like so many people do. We will have Christmas Eve at my Mom's and Christmas day at my older sister's house. Then on Friday we will go to Clarksville and spend the night at Chip's parents house. Spending the night is not my favorite thing to do. All of Chip's family spends the night so you can imagine how much my nerves love the chaos. But the kids love it so it is worth it. :-)
Today I am thankful to have my kids at home. I love having them home. We're going to go get Chip's gifts. It's always fun to see what they pick out for him!
I want to thank everybody for their encouraging words. I really do have great friends!
Saturday, December 13, 2008
Bah Humbug!
There is a very good reason I haven't written for a while now. It is because I don't want you to know that I don't feel "merry." I don't want you to know that I actually feel more like a grinch. =) I have nothing in partcular to be depressed about but I am. I am dreading the holidays to the extent that my family finally had to put up the decorations. I haven't done any of the shopping that I'm supposed to do. I have bought a few things online - I have bought the things from us for my children and I have bought teacher gifts (very important!) and I've bought all the kids in my classes a gift and that is it. After all, I reallly don't care about anything else at this point. Every year my mom wants me to get gifts for my children from her and Chip's mom wants me to get gifts from her for the kids. And I have 2 sisters and an aunt that want me to get them something for the kids. In theory, this isn't a bad idea because then I get to make sure that the kids are actually getting the gifts they want and I get to make sure they're not getting 2 of everything. I usually have these gifts out of the way before Thanksgiving so I can finish my own shopping. But considering that I am having a little case of the Christmas blues, that hasn't happened yet. And so on top of feeling yucky, I am also beginning to panic. Chip is going to help me some this weekend and he is going to take off on Moday so that we can shop together. This will probably get our kid's gifts out of the way so that we can shop for our parents, neices and nephews, our grandmothers, aunts,ect... Well you get the picture. I am behind and I'm torn between panic and not caring at all!
I am sorry that I am one big pity party right now. I hate feeling this way at Christmas. I usually don't get depressed until after Christmas. I do hope the rest of you are having wonderful holidays! I saw on Facebook today that Meg was going to 3 parties in one day! Girl, I am so glad that is you and not me!! There is not enough medication in the world to make me go to 3 parties in a day! I am thankful for my family even thought they have decided it is great fun to play UNO EVERY NIGHT at dinner!
I am sorry that I am one big pity party right now. I hate feeling this way at Christmas. I usually don't get depressed until after Christmas. I do hope the rest of you are having wonderful holidays! I saw on Facebook today that Meg was going to 3 parties in one day! Girl, I am so glad that is you and not me!! There is not enough medication in the world to make me go to 3 parties in a day! I am thankful for my family even thought they have decided it is great fun to play UNO EVERY NIGHT at dinner!
Saturday, November 29, 2008
Thank goodness it's over!
I can't believe it's been almost 2 weeks since I have blogged. It's not been because I haven't wanted to, trust me - I have needed to vent, I just haven't had time. I wish I could tell you that had a wonderful Thanksgiving and I got to spend some much needed time reflecting on all that I am thankful for. But to be honest, it was hectic, stressful and I'm glad it's over. That's terrible isn't it!!?? This is only the 2nd year without my grandmother and the 3rd year without my dad and grandfather. Up until 2 years ago, we always had Thanksgiving at my grandmother's house and so for the past 2 years I have done it at my house. I enjoyed last year but this year was a different story. The biggest mistake was letting the people come to install my new shower this week. But I ordered it in June and when they called last week and said that they could have it done by end of day on Tuesday, I let them. To make a long story short, when they finally left, it was 10:00pm on Wednesday night. We had to call in a plumber/HVAC guy to move 2 large pipes into my already small closet which was an extra $800 we weren't planning on spending. All of this was going on while I needed to be cleaning and cooking! I was totally behind and stressed by the time Thanksgiving Day actually arrived. There were only 15 of us, so it's not like I had a whole lot of people. My cousin and his wife brought their dog that isn't completely potty trained and it peed on my BRAND NEW CARPETS!-twice I don't mind dogs coming to my house - I've got 2 of my own, my mom usually brings hers, and both of my sisters usually bring theirs -but at least theirs are potty trained. I was pissed!! After that, it was hard to enjoy myself. But I went to bed as soon as everybody left and have slept for almost all of the past 2 days!
Do you know what I have thought about a lot over the past couple of days is the fact that if my grandmother were still here, I wouldn't be having Thanksgiving at my house. You never appreciate the little things about the people you love until they're gone. I have also thought about the many things that we have had to have fixed at our house and that my dad could have done so easily. And it makes me sad that he won't be around to teach those things to Cole. So I guess if I am thankful for anything/anyone today, it is my grandmother and grandfather and my dad and all that they have meant to me.
Do you know what I have thought about a lot over the past couple of days is the fact that if my grandmother were still here, I wouldn't be having Thanksgiving at my house. You never appreciate the little things about the people you love until they're gone. I have also thought about the many things that we have had to have fixed at our house and that my dad could have done so easily. And it makes me sad that he won't be around to teach those things to Cole. So I guess if I am thankful for anything/anyone today, it is my grandmother and grandfather and my dad and all that they have meant to me.
Monday, November 17, 2008
The Notebook
I know better than to watch it but it was on TV last night and I just couldn't help it. It is one of the most beautiful love stories I have ever read in a book or seen on a movie. Besides being a beautiful story it is also heart breaking. Even though I know how it ends, I start crying when her parents make her leave and can't stop until it's over. But I got to thinking last night about how nice it would be if Alzheimer's and even HD could be that "pretty." Chip told me that no one would want to see the movie if it showed what disease really looked like and he's right. If I thought that I could finish my days in a beautiful place where I still was able to be dressed every day and could go outside, it wouldn't be so bad. But if any of you have a grandparent with Alzheimer's, you know that it's not always like that. Huntington's Disease definitely isn't because it robs you of your mind and your body. So I guess I have a new view of the movie. Instead of being a heartbreaking love story, it is actually a love story with a pretty good ending considering the circumstances. Does that make me sound very cynical??
I got a letter today requesting that I participate in my first HD research trial that includes taking a drug. The drug is actually a supplement - Coenzyme Q10 -but it is at huge amounts - it is not something they think is a cure but a treatment. This is kind of sad for me because I have never qualified for these studies because I was considered early symptomatic but now I am eligible. I am excited because I like when I get the opportunity to contribute to research. HD is a disease that makes you feel very helpless and participating in trials is one way to fight that. I have a couple of concerns, however, one of them being that it will include 600 people and half of those will receive a placebo. So for 6 1/2 years, I could be taking nothing! I know that all trials have to have them - I just wouldn't want it to be me! And it is also a lot of traveling - 1 to 2 times every 6 months to Memphis. I know that's nothing for most of you but you're talking about me!! :) Anyway, it is something exciting to think about. I am about to finish my 6th visit to Atlanta this year so I might as well start a new one huh?
Today I am thankful for the HD researchers.
I got a letter today requesting that I participate in my first HD research trial that includes taking a drug. The drug is actually a supplement - Coenzyme Q10 -but it is at huge amounts - it is not something they think is a cure but a treatment. This is kind of sad for me because I have never qualified for these studies because I was considered early symptomatic but now I am eligible. I am excited because I like when I get the opportunity to contribute to research. HD is a disease that makes you feel very helpless and participating in trials is one way to fight that. I have a couple of concerns, however, one of them being that it will include 600 people and half of those will receive a placebo. So for 6 1/2 years, I could be taking nothing! I know that all trials have to have them - I just wouldn't want it to be me! And it is also a lot of traveling - 1 to 2 times every 6 months to Memphis. I know that's nothing for most of you but you're talking about me!! :) Anyway, it is something exciting to think about. I am about to finish my 6th visit to Atlanta this year so I might as well start a new one huh?
Today I am thankful for the HD researchers.
Saturday, November 15, 2008
We need a Michael J. Fox
So I see on the internet the other day that they think they have cured a man of his HIV through a bone marrow transplant. He also had leukemia and they did the transplant and now he has been 20 months without leukemia or HIV. And while I think that is awesome for that man, I also think it is a little unfair. If more people had Huntington's Disease (God forbid) or someone like Michael J. Fox had it, there would be a lot more exposure and a lot more money available towards research. Do you want to know who the most famous person is that we talk about at convention? Woody Guthrie!!?? And his very old family members are always there. Impressive, huh? :) Oh well, that is just one of my many gripes. Not that I don't think people with HIV don't deserve to be cured because I do. I just think it is sad that HD has been around so much longer and yet they are so much further on research on HIV.
Okay, I'll get off my soapbox for now and stop complaining. So here's my laugh for the week. Thursday at preschool was another very difficult day. My sweet boy was extra hard and so were all of the others. It didn't help that we were trying to cram in everything for our Thanksgiving program - making placemats, headbands, shirts as well as Christmas gifts. So just as nap time is about to be over and the day was finally coming to an end do you know that the fire alarm went off!!?? Our church is very large and since we didn't know if it was false or not, we had to get them all outside. This meant I had to get up sleeping children, get their shoes on and get them outside while some were crying. I can laugh about it now but Thursday it wasn't so funny!! =) Needless to say, I needed a serious nap when I got home!
Shelby had to have a tooth pulled on Monday and didn't realize how numb her cheek was. By Tuesday morning, it was so swollen where she had chewed on her cheek - she was hurting! So she had to stay home Tuesday and Cole had pink eye Friday and he had to stay home.
So today I am thankful for 2 healthy kids and I'm praying that I don't get pink eye!!
Okay, I'll get off my soapbox for now and stop complaining. So here's my laugh for the week. Thursday at preschool was another very difficult day. My sweet boy was extra hard and so were all of the others. It didn't help that we were trying to cram in everything for our Thanksgiving program - making placemats, headbands, shirts as well as Christmas gifts. So just as nap time is about to be over and the day was finally coming to an end do you know that the fire alarm went off!!?? Our church is very large and since we didn't know if it was false or not, we had to get them all outside. This meant I had to get up sleeping children, get their shoes on and get them outside while some were crying. I can laugh about it now but Thursday it wasn't so funny!! =) Needless to say, I needed a serious nap when I got home!
Shelby had to have a tooth pulled on Monday and didn't realize how numb her cheek was. By Tuesday morning, it was so swollen where she had chewed on her cheek - she was hurting! So she had to stay home Tuesday and Cole had pink eye Friday and he had to stay home.
So today I am thankful for 2 healthy kids and I'm praying that I don't get pink eye!!
Monday, November 10, 2008
Thankful
I am not usually one to pass on forwarded e-mails but my younger sister sent this to me and I wanted to share it because so many of the things relate to me. And since it is the Thanksgiving season and we have SO much to be thankful for, here it is.
I am thankful for the wife that says it's hotdogs tonight
because she is home with me and not with someone else.
I am thankful for the husband who is on the sofa being a couch potato
because he is at home with me and not out at the bars.
I am thankful for the teenager who is complaining about doing dishes
because it means she is at home with me and not out on the streets.
For the taxes I pay
because it means I am employed.
For the mess to clean after a party
because it means I have been surrounded by friends.
For the clothes that fit a little too snug (I hear you sister!)
because it means I have enough to eat.
For my shadow that watches me work
because it means I am out in the sunshine.
For a lawn that needs mowing, windows that need cleaning and gutters that needs fixing (I guess that means even my money pit!)
because it means I have a home.
For all the complaining I hear about the government
because it means we have freedom of speech.
For the parking space I find a the END of the parking lot =)
because it means I can walk and I have been blessed with transportation.
For my huge heating bill
because it means I am warm.
For the lady behind me in church who sings off key (that would be me!)
because it means I can hear.
For the PILE of laundry and ironing
because it means I have clothes to wear.
For the weariness and aching muscles at the end of the day
because it means I have been capable of working hard (not nessecarily very hard in my case!)
For the alarm clock that goes off in the early morning hours
because it means I am alive. Amen!
And for the crazy people I work with
because they make life interesting and fun.
Just a few things to be thankful for today!
I am thankful for the wife that says it's hotdogs tonight
because she is home with me and not with someone else.
I am thankful for the husband who is on the sofa being a couch potato
because he is at home with me and not out at the bars.
I am thankful for the teenager who is complaining about doing dishes
because it means she is at home with me and not out on the streets.
For the taxes I pay
because it means I am employed.
For the mess to clean after a party
because it means I have been surrounded by friends.
For the clothes that fit a little too snug (I hear you sister!)
because it means I have enough to eat.
For my shadow that watches me work
because it means I am out in the sunshine.
For a lawn that needs mowing, windows that need cleaning and gutters that needs fixing (I guess that means even my money pit!)
because it means I have a home.
For all the complaining I hear about the government
because it means we have freedom of speech.
For the parking space I find a the END of the parking lot =)
because it means I can walk and I have been blessed with transportation.
For my huge heating bill
because it means I am warm.
For the lady behind me in church who sings off key (that would be me!)
because it means I can hear.
For the PILE of laundry and ironing
because it means I have clothes to wear.
For the weariness and aching muscles at the end of the day
because it means I have been capable of working hard (not nessecarily very hard in my case!)
For the alarm clock that goes off in the early morning hours
because it means I am alive. Amen!
And for the crazy people I work with
because they make life interesting and fun.
Just a few things to be thankful for today!
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