Tuesday, February 19, 2008

MS sucks!!!

I'm sure I am not telling anyone anything they didn't already know. I just had a vent this a little bit. I went to the eye doctor last Tuesday becuase I had been having eye pain and mild blurred vision. Sure enough, I had optic neuritis again. She said it was mild so far, but it could get progressively worse over the next 10 days. I spoke with my neuro and she wanted to just watch it unless it got a lot worse. I had a routine follow up appointment yesterday and she still wanted to watch it although I could tell she was considering doing the IV steriods. She said if I was having a lot of eye pain or the blurred vision was causing a lot of problems, then let her know and she would start the steroids. I almost asked her to start them yesterday because I am having trouble working and doing school with the kids. You never realize how much even a little bit of blurred vision can make life difficult. Today, I kept having to just lay back and close my eyes to relieve the eye pain. I finally called her and asked her to start the steroids. I am still not certain it is what I really want to do. The side effects of the IV steroids are horrible and I am not looking forward to them. I don't think I can handle this blurred vision for the next 1-2 months. We are only going to do 3 days of IV steroids instead of the 5 I had last time. We are going to follow it up with oral steroids. I am so worried I am going to gain a bunch of weight. I have finally been on the right track with my weight watchers. I have lost 4 pounds this month and I don't want to gain it back. I am going to have to be so careful. I am really stressing about this. I am so worried about the side effects. I am beside myself about it. I hope the 3 day course is better than the 5 day course. I guess I'll know if a few days.

Andrew finished up his Webelos badge today. Stan finished up his citizenship requirements last week and I have been working with him on his art requirements this week. He finished the Fitness badge a month ago. Now that he has his Webelos badge done, we can start working on his Arrow of Light. There are a lot of the Cub Scout requirements that he can do for school. They really fit into our school work nicely. Andrew also does his school work much better when he does scouts for school. It is something that he is interested in. It is like he is doing scouts and not school. It makes the world of difference.

I have a friend that has 2 boys. They both have autism. Her oldest is Jeremy's age and the younger one is 3, almost 4. She is always talking about all of the wonderful things they do. She gets so excited about the small things they do. She is so excited that Cal is learning the value of money and thinks it is so funny that he will repeat what his teacher tells him, but when she tries to expound upon that and teach him further, he just repeats to her what his teacher taught him. He can't grasp the value of money in a different way except the way he was taught (his teacher taught him 1 dollar is 100 pennies so therefore 1 dollar can't be 4 quarters). This is a concept that Jeremy understands, but it made me think of how many times I get frustrated with him for not understanding things or I get frustrated at his little quirks. The other night, the tooth fairy visited our house. The tooth fairy is always late at our house. He has been known to show up during the day while we are busy. I guess he gets lost of something. Jeremy was not upset Sunday morning when the tooth fairy hadn't come. He didn't even say a word to me about it. I remembered when I got home from choir practice and asked him if the tooth fairy had come. He said no, and I asked "are you sure?" He went into his room to double check and the tooth fairy had been to our house while we were at church. He got really upset at this. He started crying about the tooth fairy coming during the day. Then, he started crying even more because the tooth fairy put the money in the tooth pocked on his tooth pillow and not in the money pocket on his tooth pillow. I really found myself getting upset at him for this. There was no good reason for me to get upset about it. I feel guilty for it now. I should have just cuddled with him and comforted him rather than getting mad at him. He is really picky about things. I know this about him. I need to just accept it and learn to work with it rather than trying to change him. He does need to learn how to manage when things don't go the way he expected it too, but he doesnt' need his mom getting mad at him. As my health has gone down hill over the past year, his compulsive behaviours have gotten worse. I need to work harder to be there for him and help him. I need to work more on getting less frustrated at all of them. I have been very frustrated at them today.

1 comment:

Corrine said...

i am sorry your health isn't being cooperative :) what a mess, I am soo sorry. I have been having problems with my vision lately, but now that I have my blood pressure under control I haven't noticed it as much.

Don't be so hard on yourself about Jeremy, poor guy, its just hard sometimes to be patient with those little ones...anyway I am tired and babbling....