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Stuff To Do....NO Energy

I am having a day today....you know the kind....there is a number of things that I really wanted to do today and I am just SO tired. I have some housework that I would like to do, I need to do laundry, I wanted to go grocery shopping (although this can wait a few days). I have a feeling not much will actually get done.

I did not sleep well last night. It was not that I was sick or that I was having a lot of problems with my MS.....I was just wide awake. I have been doing better with my fatigue over the last couple of weeks, but I think maybe I have been over doing things....I am just not sure. Today it seems that it is all catching up to me. Fortunately I don't HAVE to do a lot today. It will not take much for me to pick up around the house (basic house cleaning) and the laundry and grocery shopping CAN wait for a couple more days.

Tomorrow I will be traveling to Seattle for an appointment with my neurologist. It is a follow-up to see how things are going with the Novantrone. I have noticed some improvements, some symptoms that have stayed the same, and some that have gotten worse. I think with any new medication it can take time for things to get better. It takes time to really know if it is working.

I feel as if my level of fatigue has gotten better, as I seem to be able to get more done without being completely wiped out.....now I just have to learn not to over do it when I have energy. That is much easier said than done. I also don't seem to be having as many headaches or eye pain. All good news. :) I still seem to be getting sharp pains and spasms however, but they are not any worse than they were. What I have noticed getting worse is my numbness in my legs and my balance. It feels like I am walking on an air mattress (does that make sense to any of you?) I will do my best to describe it. When I step down it feels as if I don't actually hit the ground and my legs are a bit wobbly. I am not really dizzy, but I feel off.......maybe it is my depth perception. I am not sure. I also notice that when I get up from sitting that my body seems to freeze. It hurts to stand up. Is this MS related? I don't know, but it seems to me that maybe it is more in the bones......like arthritis or something. Whatever it is it seems that the cold weather only makes it worse. Hmm....what is with our health and the changing seasons? Always something.

It will be nice to have an appointment where I am able to report some positive effects of the medication I am on. That has not happened in quite a while. Really, the only thing I need to worry about is the weather. I checked the road report and it is supposed to be raining and snowing on the pass. The report shows an accumulation of 4-8 inches of snow tonight and the temps in the high 20's to low 30's. Fortunately the snow level is supposed to be around 3000 ft and the top of the pass is 3100 feet, so we should be okay. :) We just might have to take it slow, and for that reason we are leaving at 7am (which will give us 4 1/2 hours to get there......it normally takes 3 1/2).

Plus, I am picking up Nate's Christmas present while I am there....I am excited to see how it turned out. When I was in Seattle in February I met a guy (Dan) who does custom art work and designs skateboards. I bought Nate a pin on that visit and then took him to the market (His stand is at Pikes Place Market.....1976 Art....if you go to Seattle check it out!) Nate thought it was really cool. So, I decided to get Nate a custom skateboard. Dan is doing all original artwork on the bottom of the board and putting Nate's name across the top. I just know Nate will love it! :)

Well, I hope all of you are doing well and having a great week. Take care of yourself and have a happy Friday.

2 comments:

Charles-A. Rovira said...

Like, dude, that's gonna be an awesome skateboard.

Good luck with the neuro.

Jaime said...

Charles,
Skateboard turned out great! I am gonna have to take a picture of it and get it up for you all to see. Dan did a reall great job. :) The neuro appointment went good as well...but it turns out I much have jinxed myself because the trip back seemed to have put me into a relapse. I spent all day in the hosptial yesterday and am back on IVSM. Just my luck!

I hope you are doing well. Take care.
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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