It is hard to believe another year has past. Allison is still in a non-medicated remission and doing amazingly well. This disease does continue to remind us it is still around on occasion. We have learned that when Allison becomes sick with a virus/flu it takes longer for her to fight it off, her joints will ache and sometimes swell when she is ill. When the weather changes she seems to be achey and sore but so far Aleve seems to controls those issues when they arrive. Her body sometimes acts funky and we aren't sure why, but figure it is something with her immune system. In the spring she dealt with breaking out with rashes on her legs and feet each time she showered. The rash was very red and would hurt and burn for up to 30 minutes and then be gone. So, what we have learned is we listen to Allison and her body. We treat symptoms as they occur and document it all. Luckily, nothing has been severe enough to return to the rheumy or to cause great concern. Allison is good about sharing how she is feeling and we encourage her to tell us when her body is giving her cues that something is not right or going on.
Talking with Allison the other night around the fire she confided in us that when she was first diagnosed and so sick she really believed she was going to die. :( Makes me sad to think she thought that. It was a scary time for all. We were telling her about MAS (microphage activation syndrome) that can effect kids who are diagnosed with Systemic JRA and that it can lead to death at times. She told us she was glad we never told her about that because she was scared enough without knowing about MAS.
Our journey with jar continues and thankfully God has blessed Allison to be in good health right now. We do not take that for granted and feel blessed each day she feels good. Especially when there are so many kiddos out there that suffer so much daily with their symptoms from this terrible disease. A cure must be found!!!
