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.
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.
Saturday, November 29, 2008
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!
Sunday, November 9, 2008
Thank you!
I'm not as young as I was when I used to stay out until all hours of the night so it has taken a good long nap before I feel more normal today. Yesterday and last night were so much fun and I just wanted to say thank you to everybody who kept me from freaking out. Obviously if it weren't for my great husband who doesn't mind taking the kids for a couple days, I wouldn't have been able to enjoy myself. He knew how much this weekend meant to me and he made it very easy for me to go. I met up with Cary and Nicki and Amanda at the hotel. It was lots of fun getting ready together and going to the party and dancing. Ya'll are great dates - much better than some I chose when I was in college! Laura and Meg were also supposed to be there and we missed them. There weren't a lot of people there from our time but it was really great to see Katie and Jen Yates and Jill. Everybody looked so beautiful! I also have Jason to thank for helping me calm my nerves. He is a lifelong friend and we got to catch up Saturday afternoon - which was a good distraction! It made me not worry about the night at all. I know this was just a weekend but it was a big deal to me. I am trying to take advantage of opportunites like these that I might have passed up before. There are so many things that I missed out on doing when I was in college and I don't want that to happen again. I don't want to look back and regret not spending these times with great friends.
Tonight I am thankful for everybody who helped make this a good weekend for me - Chip and my kids, Cary, Nicki, Manda, Katie, Laura and Jason - you are the best!
Tonight I am thankful for everybody who helped make this a good weekend for me - Chip and my kids, Cary, Nicki, Manda, Katie, Laura and Jason - you are the best!
Friday, November 7, 2008
26 years?
Novemeber 7, 1982 is the day that my dad died. It has been 26 years ago today. It really does feel like a lifetime ago.
Tomorrow is the 25th anniversary celebration and I am both nervous and excited. I am looking forward to having a great time but it makes me so nervous just thinking about it! My sweet husband is going to take the kids to the Fall Festival at school and even work my shifts for me so that I can get ready and enjoy myself. I just wish the weather was going to be warm like it has been all week! I am going to go and try to be busy today. Maybe that will take my mind off of being nervous!
Tomorrow is the 25th anniversary celebration and I am both nervous and excited. I am looking forward to having a great time but it makes me so nervous just thinking about it! My sweet husband is going to take the kids to the Fall Festival at school and even work my shifts for me so that I can get ready and enjoy myself. I just wish the weather was going to be warm like it has been all week! I am going to go and try to be busy today. Maybe that will take my mind off of being nervous!
Wednesday, November 5, 2008
In trouble!
So I get a call this morning from Cole's teacher to let me know that he had been in trouble twice today. Once for reading during math class when he was supposed to be working and then again for talking to his friend during reading class. She said that this wasn't like him and she wanted to let me know. I really do appreciate her telling me but part of me wanted to laugh. If she could see what Cole is like without his medication, these things wouldn't seem like such a big deal. Maybe I should send him to school without his medicine one day and then she would see what a difference it makes! It is hard to appreciate it until you see it for yourself. No, I really am glad she called me and is keeping me informed on what is going on with Cole. But I am also thankful for how far we've come - I can handle him getting in trouble for talking! =)
Very glad elections are over! I am glad that my kids have the chance to grow up with an African American as President. They have had many questions about the candidates but none about their color and I am glad about that. I just hope President Obama can live up to the high expectations that everyone has for him.
Very glad elections are over! I am glad that my kids have the chance to grow up with an African American as President. They have had many questions about the candidates but none about their color and I am glad about that. I just hope President Obama can live up to the high expectations that everyone has for him.
Monday, November 3, 2008
WOW!!
This really is my favorite season. While I was driving today, I couldn't help but be in awe of the beautiful colors of the leaves. It's hard to question how much God loves us when you see the amazing colors. He could have had the leaves just turn brown and fall off the trees but instead he gave us a beautiful show before winter comes.
Tomorrow is election day - finally! I will be so glad when the campaining is over. And I will be glad when everyone is not so tense. I do wish our country had chosen better candidates to choose from. Although they have given me some good laughs on SNL! I am going to go and try to vote at 7am before I have to be at work at 8:30. I tried to vote early last week but the wait was 2 1/2 hours long. I guess if I have to wait that long tomorrow after work, I will. But it won't be much fun with the kids! :-(
I am sleepy. It is hard to get used to daylight savings time. I felt like it was bedtime at 7:30!
Tonight I am thankful to live in the USA where we have the privilege to vote.
Tomorrow is election day - finally! I will be so glad when the campaining is over. And I will be glad when everyone is not so tense. I do wish our country had chosen better candidates to choose from. Although they have given me some good laughs on SNL! I am going to go and try to vote at 7am before I have to be at work at 8:30. I tried to vote early last week but the wait was 2 1/2 hours long. I guess if I have to wait that long tomorrow after work, I will. But it won't be much fun with the kids! :-(
I am sleepy. It is hard to get used to daylight savings time. I felt like it was bedtime at 7:30!
Tonight I am thankful to live in the USA where we have the privilege to vote.
Sunday, November 2, 2008
Halloween
It has been a good weekend. Friday night was lots of fun. We had a house full of kids ( 8 to be exact) scaring trick or treaters, playing the Wii and hide and seek. Us parents had a great time eating candy, laughing, and watching the trick or treaters get scared. We are very blessed to have such good friends. One of the families that was there has a special place in my heart. We have been friends for 12 years. We have had children at the same time. We vacation together. She is one of my best friends and he is a good man. They found out on Friday that he lost his job because of "restructuring" and my heart is broken for them. He is great at what he does so I am sure it will not take long for him to get another job but this is a family that does not deserve this. It makes you really think about what you have. These are uncertain times and I am aware that Chip's job is something that should not be taken for granted.
By the way, I found my dress for this weekend and so now I'm excited. I just watched the weather and saw that it's going to be cold that night. My dress is cute but I'm going to freeze! :-)
Tonight I am thankful for Chip's job that has always provided well for us.
By the way, I found my dress for this weekend and so now I'm excited. I just watched the weather and saw that it's going to be cold that night. My dress is cute but I'm going to freeze! :-)
Tonight I am thankful for Chip's job that has always provided well for us.
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