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.
Monday, January 16, 2012
Tuesday, May 10, 2011
My List
In the fall, Erika Mannen started a small Bible study at her house and we met every other Wednesday. It was her, myself, Marla, Carol and Julie Moore. The study and fellowship was good...especially since Erika knew that a large bible study setting like at church was too much for me so I appreciated it. We began another book/study in February. The author is Ann Voskamp and the book is about being thankful for the things we have around us everyday that we might not take the time to appreciate.
Monday, May 9, 2011
I need therapy...
So much has happened and changed that I truly haven't wanted to write. But blogging is therapy and I need therapy. I have been/am in a more difficult place these days and maybe it will help just to write them out.
Monday, October 5, 2009
Why I stopped writing...
I know it has been a very long time since I have written. To be honest, I got into a depression, and it once you get down, it is hard to get back up. Then I just didn't want to write about it. And the longer it got, the less I wanted to talk. But I know it will help me move on and catch up if I tell you what was going on last May when I stopped writing. A couple of things happened that will seem pretty insignificant now looking back but it wasn't then. First of all, I got hurt by a close friend that I look up to very much. I felt betrayed and it sent me into a depression. Even though we worked things out, it was very hard to "get over it."
Saturday, May 9, 2009
GREAT NEWS!!!!
For all of you wondering how my younger sister's test results came out...she DOES NOT have the disease!!! Isn't that wonderful!? I am so happy for her. She has so much ahead of her now without this looming over her. As my sister, she is so close to my heart. Every time I even thought about the possibility of her having it, it was worse that me going through it again. I love her so much and am so glad that she is not going to have to face this part of the battle. Granted, HD is a family disease, so she can't ignore it. In fact it's a little funny that she is the least patient among the three of us, and now she'll end up having to help take care of us!!!! =) I really do want to thank all of you for checking on me and for all of your prayers. You all are the best.
Today I am just thankful...
Today I am just thankful...
Friday, April 17, 2009
Updates...
Sorry it has been a while but life has been busy... I hope everyone had a Happy Easter. Ours was very nice! The kid's spring break was wonderful. We didn't go anywhere but we had nice weather the first week so we went to a couple of parks for hiking and biking. And Chip went with us to the zoo. It really does make me wish we never had to get up early and never had homework - it really does make me a nicer mom. =) I'm sure it would eventually get old. Ha!!
I went back to Memphis last week to get more drugs. The drug I'm (hopefully) taking is to help cognitive functioning and the dr. said that some patients who have been on it longer are beginning to see a difference. Now I know those people could be on a placebo and it could be "in their head" but it would be nice to think it is working. I also found out something else that is a bit encouraging. If you have been reading this from the beginning, you know that one of our problems has been finding a good neurologist in the Nashville area. Any movement disorder neurologist will treat you, but most of them deal with primarily Parkinsons patients. Last year I even went to Indianapolis because I liked the one there so much and because she had so much experience with HD. I talked to the neurologist at Memphis who is doing the study and asked him if his other patients saw other neurologists. He told me there would me no need for me to have anything other than my primary care dr and my obgyn. That he would take care of everything else for me. Of course I will be seeing him at least every 6 months so he will know me better that any other dr. would. I was excited about this - you have no idea how frustrating it is going to drs. who don't have a clue what HD is. And even better -- it is free because it is part of the study!!
My younger sister did go to have her genetic test done yesterday and now we wait. She will get her results in 3 weeks. I don't need to tell any of you how much our family could use a miracle so keep praying for one!
I want to end this on a funny note...this is what all of you parents of boys have to look forward to...So I get a call last Thursday, while I am at preschool, from the school that I need to come get Cole. Evidently he had been playing with a rolled up piece up paper and seeing how far he could get it to go in his ear. When it got so far that is wouldn't come out anymore, he decided to use a pencil to try and get it out. Which obviously pushed it much further down...so far down that you could no longer see it. The nurse said it was close to his ear drum and she didn't have an instrument skinny and long enough to get it out. So I was going to have to take him to the dr. to get out the paper. When they called me, Cole was crying, he was convinced they were going to have to cut him or put him to sleep to get it out. It was a little funny. An hour and a half later - after trying to scrape it out and flush it out and scrape it out again - it was out. Since then I have been told to be thankful it was only paper. I have heard horrible stories of peas and beans and candy in noses and ears and it's always little boys. That makes me laugh! What would we do without our boys to make us laugh?
Today I am thankful for my sisters...
I went back to Memphis last week to get more drugs. The drug I'm (hopefully) taking is to help cognitive functioning and the dr. said that some patients who have been on it longer are beginning to see a difference. Now I know those people could be on a placebo and it could be "in their head" but it would be nice to think it is working. I also found out something else that is a bit encouraging. If you have been reading this from the beginning, you know that one of our problems has been finding a good neurologist in the Nashville area. Any movement disorder neurologist will treat you, but most of them deal with primarily Parkinsons patients. Last year I even went to Indianapolis because I liked the one there so much and because she had so much experience with HD. I talked to the neurologist at Memphis who is doing the study and asked him if his other patients saw other neurologists. He told me there would me no need for me to have anything other than my primary care dr and my obgyn. That he would take care of everything else for me. Of course I will be seeing him at least every 6 months so he will know me better that any other dr. would. I was excited about this - you have no idea how frustrating it is going to drs. who don't have a clue what HD is. And even better -- it is free because it is part of the study!!
My younger sister did go to have her genetic test done yesterday and now we wait. She will get her results in 3 weeks. I don't need to tell any of you how much our family could use a miracle so keep praying for one!
I want to end this on a funny note...this is what all of you parents of boys have to look forward to...So I get a call last Thursday, while I am at preschool, from the school that I need to come get Cole. Evidently he had been playing with a rolled up piece up paper and seeing how far he could get it to go in his ear. When it got so far that is wouldn't come out anymore, he decided to use a pencil to try and get it out. Which obviously pushed it much further down...so far down that you could no longer see it. The nurse said it was close to his ear drum and she didn't have an instrument skinny and long enough to get it out. So I was going to have to take him to the dr. to get out the paper. When they called me, Cole was crying, he was convinced they were going to have to cut him or put him to sleep to get it out. It was a little funny. An hour and a half later - after trying to scrape it out and flush it out and scrape it out again - it was out. Since then I have been told to be thankful it was only paper. I have heard horrible stories of peas and beans and candy in noses and ears and it's always little boys. That makes me laugh! What would we do without our boys to make us laugh?
Today I am thankful for my sisters...
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