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Busy, Busy, Busy!

My goodness...I just realized that I have not posted anything in just over a week! Things have been so busy around here with my son starting football and going back to school....not to mention trying to keep up with all of that given the level of fatigue I have had recently.

For the most part everything has been going well...just really busy. Nathan started grid kids football a couple of weeks ago and had his first game on Saturday. It was actually a jamboree and they did great. His team played against two other teams. They won the first game and lost the second. I got some great pictures of the first game..but thanks to the wonderful HEAT (yuck!) and being out in the sun my MS decided to show its ugly face by time the second game rolled around. I had to go sit in my dad's van with the a/c on and watch from there. It can be so frustrating to not be able to even do simple things like watching my son play football because of this illness. I think I can deal with most everything (as long as I am not taking Avonex...see previous post) that this illness gives me. I mean, I have accepted that I am going to have good days and bad days and I just pray that the good outweighs the bad, but it would be nice if I could do more outside. Apparently my body just can't take it.

I really over did things on Saturday too because not only am I still trying to recover from my latest flare...but I did go sit in the heat to try to watch my son's football game and then after coming home and relaxing for a bit (actually several hours) Justin and I took Nate and his friend Isiah to the fair. We had tickets for it and Saturday was the last night. I figured it would not be so bad because I was taking my walker with me and I have one of those walkers that have a seat on it...so I could sit when I got tired. Plus, we waited until it got dark and cooled off. Problem was that when we got to the fair and I looked in my trunk (because I thought I had it in there) it was gone. Me and my memory! Turns out that when we got home from the football game I brought it in the house and then forgot I had done that so I never put it back in the car. This made the fair a bit of a challenge as there were so many people there. Nathan and Isiah only got to ride about 5 rides because the lines were so long (I did go on the fairis wheel...as much excitement as I could handle at that point, lol). Anyway..the kids had a ton of fun and talk about a long day. They came home and went right to bed! That makes it all worth it! Unfortunately I then was unable to function come Sunday and Monday. Used up too many spoons, but that is okay....I was happy to do so if it meant having some fun with my son!

Nathan started school yesterday. He has such a busy schedule and I hope he does okay. The school rotates between an A day (M,W,F) and a B day (T,Th). In otherwords there are certain classes he will have each day (Math, Science, Reading, Language, Social Studies, and Technology) and then there are some that will rotate (PE and Band). Then you add the 2 hours of football practice 4 times a week and Boyscouts on Wednesday nights (when he does not have football)....he is going to be crazy busy. I am hoping that with him following a structured schedule this will not overwhelm him. I am sure he will be just fine...and the best part is that he will be so busy doing all of this that this is bound to keep him out of trouble and teach him some responsibility. I have made it very clear.....if he doesn't keep up with his school work and chores there will be NO football as that is a privilege!

So I was supposed to go in to see my neurologist next Tuesday and they called to reschedule. Now I am set to go in this Friday. I understand that things come up and so I don't mind but it would have been better for me if I could have kept the Tuesday appointment as we have to travel to Seattle to take my grandma to the airport that day (she is going back home to Arizona). My sister has decided to go to Seattle with my dad on Tuesday though so it works out okay...just a lot of driving for him. I am nervous about my appointment on Friday because I know that I am still not doing the best when it comes to my MS. I am sure she is going to want me to go back on some kind of medication to slow the progression...which I am all for as I don't want to be more disabled, I just don't tolerate any of the ABCR's and so I am not sure what other options are out there. I did read on Dave's blog an article about a cancer drug that is showing some help for people with MS.....Rituxan. I am not sure if this would be a good option for me, however it does state that it is used to treat Non-Hodgkin's B Cell Lymphoma....which is a major plus for me! I have complete trust in my neurologist however, and so I know everything will be just fine. She is a wonderfully brilliant doctor and I know that she will do whatever she can to help me get better! :)

I have a question for everyone! Have any of you ever gotten what looks like a malar rash from taking any of the meds? I don't know what is going on but for the last couple weeks or so my cheeks and nose are a reddish color, almost like a rash....only it is not a rash. I am not sure what that is all about. It gets really bad...almost looks as if I have a sunburn when I go out in the heat too. I am thinking that maybe it is a side effect from the steroids I was on...but I am just not sure. I guess I will find out on Friday. It is all just strange....always something to deal with! And this flare has been a bunch of new symptoms for me, so I would not be too surprised if it has something to do with that. I am sure it is not anything serious though as I have great doctors that I am sure would have figured out if something else was going on with me. After all I have had my blood drawn like 10 or more times in less than a month.

Well, I hope that all of you are doing well. Please take care of yourself and have a great week (lol, it's already Wednesday...week is half over).

2 comments:

matt said...

i don't start school until the 7th because of some law they made because they wanted more tourism in the wisconsin dells or something. so i still have another week to sit at home all day. :P

last year i had some classes that only met every other day. there would be some classes on monday and wednesday and some other classes that met on tuesdays and thursdays. fridays alternate with "A weeks" and "B weeks."

i used to do boyscouts. but then i quit for a few reasons. partly because i disagreed with a lot of their policies about religion and their attitude about homosexuality. over here they have a rule that bans openly gay people and they require prayer/bible reasons. i'm a hardcore liberal agnostic democrat and was offended by that, so i quit. (also i just didn't... like it.)

i kinda wanna meet nathan. does he have an AIM screenname or something? (it's cool if you don't wanna give it to me because of like... internet saftey and stuff. or just because i say too many bad words. :P)

Jaime said...

Matt~
You are funny! Nathan actually doesn't have an AIM account because he is just starting to get used to the computer. He just started 6th grade this year and has a computer class. One of these days when he gets better at it I will have him contact you! :) Take care of yourself.
Jaime


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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