Saturday, October 2, 2010
And the roller coaster rolls on
Well, once I found out that the Orencia dosage was cut in half for her second infusion, I wondered what was going to happen. I doubted that she would feel as well the second day, and I doubted that she would feel as well for as long. Instead, the day after she did fabulously after the morning, but now that we're on day 5 she's reverting. It actually started last night. She told me that her back was hurting, then it was fine, then it started again. She kept telling me that this hurt, or that hurt, but it was mostly just quick pains that went away in a few minutes. I hoped for the best, but suspected the flare was coming because I also noticed what look like new nodules popping up on her hands.
Today after I got home from work I found that she wasn't doing so well. Not only does her back hurt pretty badly but now her neck hurts, her shoulders, her arm, both legs and a finger. That's all that she has admitted to, anyway. A little before it was time for her next round of Motrin we kept hearing little moans coming from her. She's trying not to get up from the couch at all unless she has to. Because that alone apparently isn't bad enough, her Raynaud's is acting up again even inside of our house. Usually she doesn't have too many episodes at home. I had to grab her blankie, & her housecoat and Kevin grabbed her mittens for her. She stayed bundled up for quite some time. It's so frustrating to see her good for a few days, then very bad for a few. I knew to expect it, but still... Once it fully kicks in in another couple of months it should be worth every minute, but right now it's just very hard for her to deal with and for us to watch. We may have to keep her out of school this week. We shall see. One day at a time. We'll just have to see what Monday brings.