As always, there's so much going on! The staff at Emily's school has continuously been a huge help & even a source of support. For one thing, I'm speaking to her class tomorrow about her conditions. In the past, more of her classmates than not have known about her arthritis & such. Now she has only a few students that she knows in her class. I want to prepare them, for one thing. I'm not sure how other kids her age react to her turning purple. I don't want them to be scared. I don't want them to think that she's getting special treatment when she learns how to type and gets to write less. Or wonder if she's ok if she's out a week or two.
I've been in touch with their nursing staff all week. They had me call the doctor's office to fax a new note so that they can administer Motrin to Emily throughout the day. The school nurse called me on Friday. It's important to discuss changes in meds, side effects, current problems, etc. I mentioned that the Enbrel just isn't cutting it lately. Emily's been very stiff, and lately she's asking us for her Motrin often. I am hoping that she can hold off on a full flare until her next doctor visit. We discussed that, and changed her status slightly. The new changes will make it possible for her to stay home the next time that she has a flare that incapacitates her. She can then be put on the Homebound Program. I sure never thought that I would have to worry about anything like this years ago. Right now I feel like there's a ticking time bomb just waiting to go off. Her doc didn't think that the dose change on the Enbrel would work long, but it was worth a shot. Anyway, the nurse is going to contact our rheumy's office to see if there's anything else that they think should be changed. It makes me so happy that they are so caring and wonderful about it. I suppose it helps that Em's an absolute sweetheart. Her strength will never cease to amaze me.
Ya' know, I wake up almost every morning with a feeling of excitement! Good things happen more often than most people notice! I'm excited about the kids school year, excited about my school year starting (hopefully) soon, excited about endeavors for the Arthritis Foundation, and for myself to hopefully help some parents of newly diagnosed children. I'm cautiously excited about her next rheumy appointment. I'm hoping that he'll make the change to Orencia now. If it takes 3-6 months to work fully we need to start it NOW. There are so many good things on the horizon. I'm working on preparing for my meeting with Congressman Bilirakis. That's a bit scary, but also very exciting!
If you haven't had a chance please watch the video from the previous post. It hit me hard tonight. I may not be doing my best in all ways 100% of the time, but one of the most important things that I've learned this year is that it's better to fight for some things than just hang passive as I usually do. I've learned that no one else will advocate for our families, for us if we don't. I don't just mean for arthritis. I mean for other health conditions, maybe school issues, health care. There are so many things that we should stand up for, but usually don't until we're pushed into action. We're so content to sit back and watch the world going on around us, but there comes a time when we need to fight for our families. I realize that the song talks about this on a much more personal, intimate level, but honestly when I heard it I thought "Wow. Yes, I am doing what I can. And I have a very happy household." That is awesome. Ashley doesn't really have a religious belief yet. She felt weird and unhappy when I was dragging her with me to church. Far be it from me to push her away. And that's ok. Don't get me wrong... I pray to God that she'll come around. I want her to believe in something, but I can't force her. That said, there is God all over this house. No, not like in paintings and books and magazines. I mean, with Jesus in my heart, He gave me joy. My joy has brought joy to the rest of the family. Ashley says that she laughs more at home than she does at school. How many almost-16-year-olds can say that? Where there is laughter, there is no anger. If you open your heart, try to understand those around you, put yourself in their position... you'd be surprised how much nicer you become. Let go of the little things! Do you think it would matter if your spouse died tomorrow that he or she didn't get the laundry done? Do you think that you should be trying to control their actions? Why should you? To control is in a big way to change. Why try to change those that you love? Everyone has a right to be themselves. I'm messed up & broken & I love it!!! It makes me feel so free to know that we all are! It's ok to mess up, as long as it's not always the same thing over and over. We treat our kids like people because that's what they are. And they're happy, respectful, and sweet children. That's all that I could ever ask for.
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