Isn't the first day back to work after a long weekend brutal? I could barely get myself up and moving and it took me a good four hours to get myself together enough to actually follow my daily lesson plan. I've been excited about this week's plan! I'm calling it "Weird-o Science Week" and it promises to be lots of fun and also a lot of opportunities to learn and to get our hands dirty. We will be creating a home-made volcano, experimenting with a 2-liter of Diet Coke and a pack of Mento's, creating our own slime that goes from liquid to solid to liquid again and many other experiments. This has been my first week in a long time that I have taken joy in being able to enjoy this with my daycare kids. They rock!
I believe that the key is two-fold. First, the weather is getting to be beautiful and second, I know that in less than 2 weeks, Steve and I are going to Mexico on our vacation. It is a beautiful thing to have something to look forward to. I am also getting inspired with my job. I am coming up with wonderful, educational and fun lesson plans and they all just seem to fall in place. I love that we still have "Daycare Olympics" on the horizon and a new favorite of my kids, "Gameshow Week". It's all good! I'd be lying if I didn't say that my personal favorite theme is "International Foods Week". I have so many ideas in regard to different international dishes to try that I really ought to make it a point to write them all down!
Most of the time I love my job. Where else could I work in an environment that allows me to be a part of a group who aren't just loved by me, but love me in return :) Can you imagine an employer coming up to his employee and giving him a hug and a high five before they left for the day? It might be a little off-putting! That's the beauty of working with children. They never shy away from letting me know how much they love me (or how mad they are at me, depending on their moods!)
There is the flip side, however. Sometimes it takes all that I have inside of me to just get through the day. I really dislike being grumpy and when I am, I feel like I did my kids a great disservice by being so cranky. I don't get crabby with them. I internalize the crabbiness until all of the kids have left for the day. It breaks my heart when I see one of my kids wanting to play with me and I have to decline because I feel so lousy. I can't stand it when I'm not on top of the game. Thankfully, they understand that some days are rough for me and they are great at working with me to find ways to have a fun day. I look at them and see how wise they are, how they can take the good with the bad. They are pretty awesome at adapting to change. I love them for that.
I am also so damn lucky to have married a man who fully understands what my days typically are like and he gives me no grief about it. He just simply loves me, painful body and all. He lets me have my pity party for one when I need it. I love that he doesn't try to "fix" me. I feel loved just as I am and that's a good feeling to have. I have a daughter who still kind of doesn't grasp what SLE is like to have but it doesn't stop her from doing what she can to lighten my load.
Sure, I look peachy-keen on the outside, but on the inside, I'm crumbling. I do what I need to do to juggle all of the responsibilities that I have ownership of. Sometimes I drop the ball and I just get back up and give it another go.
Lupus doesn't get to take everything away from me. There are too many things that I want to do and so many places that I would love to go. I don't delude myself that once this flare ends, then I'll not have to deal with them again. They will come back but the difference will be that I'll be able see the signs of a potential flare and hopefully at least scale back the intensity. I know that there will be a time when Lupus gets the upper hand but until that happens, I'm going to do my best to delight in the simple things that I might not have noticed before. I'm going to do my best to have fun!
Having lupus is a daily struggle and I've had days when I could barely move. I don't remember the last pain free day that I've had. I really don't have any physical symptoms so I look pretty healthy. What I would love to do is to find a way to raise funds, not just for lupus reseach, but for many other illnesses that have no tell-tale signs. I would like to see research done to find ways to determine the origin of lupus.
I believe in God, who has saved my butt on more than one occasion. I believe in science and research because of all of the advances that have already been made. Though I'm not eligible for Benlysta treatment, I hold on to the hope that one day it'll be my turn :)
I'm not going to ne held a prisoner in my body I'm not going to let lupus
call of the shots. Lupus doesn't let up but neither do I!
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