I don't think that I'll ever get used to this roller coaster. Emily just rolls along most of the time seeming pretty much unfazed, but I'm all over the place. I try really hard to just expect things to happen, so I don't get as upset as I could, but try as I might I can't predict the way that I'd like to, and I don't always think of the right questions.
After the first full week on Orencia being an AMAZING change for her, by about day 9 the effects started wearing off. Gradually, but bad enough. At first it was in her back. I had read that back pain was a side effect, and she accepted that. She had 2 days of only back pain when her arm and leg started hurting. Her leg was bad enough that she didn't want to walk. Thank God it waited until the weekend to get bad. By Monday she was ready for her infusion. She didn't argue, fuss or cry this time, which was a relief. This time she knew what to expect, and she knew that it worked. She was pretty happy watching "Hotel For Dogs" while her medicine coursed through her. She also distracted herself by making a bracelet in the hospital. I had asked the nurses about more meds for her pain. They called her rheumy, but of course, we didn't get a call back. They are always so busy. At that point I had figured that it could wait. I suspected that by the next day she would be running around again, and she was! I had really worried because I found out Monday that the elevator at her school had broken down again. She's on the second floor, and there would be no way she could get up & downstairs if she was still hurting as badly as she did on Monday. She had help getting up on Tuesday morning, but apparently sometime Tuesday afternoon the Orencia kicked in! She came back home running! She also very happily told me that she didn't need her gloves on Tuesday!
My best guess is that until it fully kicks in she will have several days before the next dose that are just plain bad. I panicked when I found out that this bag only held 250mg compared to the first dose of 500mg, but she's doing very well. We are breathing sighs of relief for sure. I have faith that this is the right medicine for her. I feel that once it is working at max she will feel really good again, in a way that we haven't seen her since March or April. I can't wait for that. These children are so amazing, so special. And so smart! She told her teacher that her back hurt, but don't worry- it's only a side effect and it will go away. It's the things that I don't think she's listening to that she'll repeat. In any case, I'm just happy that we're in a good stretch, and hoping that the bad stretch will only be a day or two. If this helps for the Raynaud's also, I will be thrilled. That would mean that she wouldn't need calcium channel blockers or any other meds for that. The less medication the better.
She's getting very excited for the fall! This is her favorite time of year! It's been an interesting school year so far. We've had a lot going on. We've gotten more involved in Cub Scouts. Last year I could take it kind of easy since it was only 2 boys for quite some time, and then just mine after the other one moved away. We currently have 6 boys! I've been busy the last 2 nights planning for the next couple of meetings, and getting things printed out to keep track of achievements. Emily has been enjoying her Brownie nights. Thank God for Michelle!!! I have so much to use for Cub Scouts, but Brownie's had me pretty lost. Michelle is a teacher and all of this has been pretty easy for her to figure out. I went from going it alone to having her take over the part that I felt incompetent at. Any which way, that has kept us busy. I'm trying to be on the kids more with homework. Ashley is actually trying to achieve Honor Roll status!!!!! She wants to be an honor student. Works for me! We've gotten Emily to chill out a bit with her math anxiety and frustration, and I was actually able to teach her something. We have to keep on Zachary. He'll try hard to get out of doing his homework.
And in the middle of all of that, we lost two people in our division last week at work. The first man I didn't know. I believe I've met him once or twice, but that's about it. Through no fault of his own, he was killed in a horrific accident with his store's work truck while on the clock. So many people were affected by his passing, including several people from my store. It was very shocking and very sad. As if that wasn't bad enough, a driver from the store just a few minutes away from me passed two days later. He had a stroke and then a blood clot in the brain. That, too, was shocking and unexpected. What a horribly sad week. We all knew him, and loved him. I can't say that I knew him well or that we were close, but he was a good man and he will be missed. Our division is like a family in many ways. When one hurts, the rest hurt for it and with it. Just to rub salt in the wound, the A/C system at my store went out. It's been like 90F in there all week. It was a very trying, emotional, up & down week. We have many things to look forward to this week! Just having my little girl walking again is enough to make my week. I hate the uncertainty of RA. You just don't have any idea how any given day will be. Every day is a gift, however! I will try to have her looking for the positive things in a day like I try to do. We all complain so much, myself included. We have so much in this life. We take so much for granted. But truly, every day is a gift.
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Thursday, September 30, 2010
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