Austin MS Walk

Thursday October 28, 2010 - Sunday was the Austin MS walk. Thank you to my parents and mother-in-law for coming and walking with us.

You can still donate until November 24th. Just visit the link. http://main.nationalmssociety.org/site/TRC/Walk/TXHWalkEvents?pg=peditor&fr_id=14611&px=6864140

No amount is too small. The money that is raised helps with research and also helps provide people that need assistance with equipment and other necessities.

Jerry and I went to a dinner on Tuesday evening where my neurologist was speaking. We learned some new things about research and about medications. Some things were good and some where not so good. The one thing that I am fearing right now is the cost of medication. I have been on a program with no copay for my medication because my insurance will not cover it but I am not sure how much longer that will last. All MS medication is very expensive. My medication costs about $35,000 a year and the new oral drug that came out is $50,000 a year. We are not sure what will happen when insurance and drug companies decide not to help pay for these anymore. I am not sure about you but I can't afford $35,000 a year for one medication on top of all the other medical expenses.

I hope everyone is enjoying some fall weather. Have a great weekend!

Amanda

Happy Friday

Friday October 22, 2010 - I hope everyone has been doing well. We have been busy here with school, work and fall activities. We went to a pumpkin patch at the beginning of the month and the weather was perfect. We all had a good time.

I have been feeling good most days. I am still tired and some days just have to take a two or three hour nap to make it through the day. I have started medication for my panic attacks and they have stopped. Thank God!!!! Some days I was having two or three attacks a day and I have not had one in weeks. It feels great to not have that feeling.

The Austin MS walk is this Sunday and the kids are looking forward to the food. ;) Leave it to the kids to only care about food.

Dylan and I talk about MS occasionally and it is so hard to explain to him what it means to have MS and what it really is. We have been talking about it for over a year and the idea of having something that does not go away and that you can't give to someone else by coughing on them is so hard for him to understand. It is also very frustrating for the kids for me to have to rest all the time. They always complain that I am always tired. I feel so bad that I don't have the energy to do as much as I would like and that they have to suffer because of that.

Okay, I guess enough rambling. I hope everyone has a great weekend.

Amanda

Eat At Chili's

Friday September 24, 2010 - Monday is Eat at Chili's Day!!!! 100% of Chili's profits will go to St. Jude Children's Research Hospital. As many of you know my nephew Austin lost his life at the age of two to cancer. The money raised will help fund research to hopefully some day find a cure for childhood cancers.

EXHAUSTED

Tuesday September 21, 2010 - That is the one word to describe how I have been feeling. No matter how much sleep I get I am still just dragging. Some days I get all the kids off to school and then come home to take a three hour nap and then go to bed at night just fine to just start the routine over again the next day.


It has made it very hard to get anything done at home. I can't finish cleaning or laundry. It just sits there and piles up. I started to clean the house this weekend and got one room done and then laid down at 4:30 and fell asleep for about an hour. You would think I would have not been able to go to sleep a few hours later but I had no problem.

I have medication that my neurologist gave me for days when my fatigue is debilitating but I am afraid to take it right now for fear of triggering a panic attack. I will go to my general doctor on Thursday to figure out what to do about my attacks and hopefully once that is resolved I can think about taking the other meds. I HATE taking medication but I also HATE not being able to function every day.


I hope everyone is doing well. Cross your fingers for cooler weather.



Amanda

Austin MS Walk

Wednesday September 15, 2010 - It is that time of year again. The Austin MS walk is next month. I would love to have everyone come out and walk with me. Without these types of fundraisers there would not be funds to help people living with MS and help fund research projects.

When: Sunday October 24, 2010 @ 9 a.m.
Where: Dell Diamond in Round Rock

You can go to my fundraising page
http://main.nationalmssociety.org/site/TR?px=6864140&pg=personal&fr_id=14611&et=gJqeYTmYPBkcz1ydNlFbqw..&s_tafId=159858

Amanda

Where to Begin

Thursday September 9, 2010 - It has been a crazy few weeks! First, is a picture of Dylan on the first day of school at our brand new school. We don't have to drive over the highway or through three neighborhoods to get to school anymore!!!!!!!


Dylan likes his school but has been having a very hard time adjusting to his fourth school in four years. I think the fact that it is a brand new school and everyone is trying to figure out the routine and rules is very frustrating for him. Thankfully, he will be at this school for four years. I think it will get much easier for everyone as time goes on.

I have had good days and bad days as far as my fatigue goes. I may spend a day or two in bed and then have a few good days and then be in bed again. I am having a lot of spasms. I have always had spasms, but they are much more frequent now. I actually had one in my leg the other night and I could not straighten my leg for several minutes. I am hoping cooler weather will be here soon.

Our dog was in the pet hospital for a few days last weekend and nearly died. Thankfully, he is back to his normal self. He needs to learn not to eat everything in sight.

Emily has started school and likes it but then changes her mind everyday about going. She would just rather stay at home with me. I am not sure why. I think she has a lot more fun at school than with me.

Jerry is still working two jobs, so we don't have a lot of family time or time for anything else. We are hoping that will change sooner than later.

I am just waiting for life to slow down but I guess it never really does. I hope everyone is doing well.

Amanda

Sunday August 22, 2010 - We have been busy with school stuff. Dylan's teacher came to our house early last week and then we had supply drop off on Friday. Friday we went to get school shoes and that was a bad idea. We went to Target late morning and it was worse than any weekend day I have seen. There were people everywhere. Then I had to get more school supplies for Dylan that was unexpected so I went to get that stuff yesterday. Thankfully, it was not as bad at the grocery store. I guess by that point everyone was shopping for school clothes. I think we are all ready for school now. Dylan is excited and I am ready for the routine. Emily does not start for another two weeks and I am not sure she will be ready. She is never ready for school to start.

I have been trying to get the house and all my paperwork in order so I can start my in home childcare again. I have tried to get a job at Dylan's school and the preschool with no luck. I think part of the issue is that there are still so many people looking for jobs. So for this school year I will be providing childcare and then may go back to school in the spring and then reasses the situation next year.

I hope everyone is doing well and staying cool.

Amanda