(no subject)
I really suck at this posting every day thing. I realized pretty quickly that 1) I don't have enough substantial topics to talk about and 2) I don't really have the concentration to sit and actually write for an extended period of time. I'm having trouble forcing myself to do it. I can manage it when I'm ~in the mood~, but not if I have to force it.
But I have something to write today. :)
As most of my readers know, my 13 year old cousin has lupus. She was diagnosed when she was just nine years old, after several months of low energy, muscle and joint pain, that sort of thing. We were all pretty relieved that it wasn't leukemia, though we quickly discovered that lupus has its own challenges. My aunt & uncle have done a great job regulating her symptoms and meds so that she's on low doses of steroids and things like that. This summer was hard, and her blood work came back not so great in August - probably because of how much time she spent in the sun. She's only 13 and wants to be able to do the things that the rest of her friends do, but unfortunately, she also has to learn all of this on her own, now. She's old enough to realize the consequences of some of her choices. If she decides to spend a lot of time in the sun without covering up properly? She's going to feel like crap and the doses of her meds will probably go up. But she's done things to try to help out, aside from the medicine stuff. They eat all organic stuff, trying to avoid pesticides and other gross stuff that might negatively affect her disease, and she stopped eating meat. No idea if there's really any evidence to suggest that this will help, but I'm not the one who has done the research. All in all, it's tough on her sometimes because she desperately wants to be a normal kid with the rest of her friends, but she shouldn't be out in the sun as long as the average kid, her joints hurt when she has flare ups, she gets tired more easily.
For the last few years, she's been attending this great camp in Northern California called Camp Milagros. It caters specifically to kids (8-13) with juvenile arthritis. My cousin does have some arthritis because of lupus, so. Anyway, because this camp is designed specifically for kids like her, it's a fantastic place for these kids to not only have a fun time and act like normal kids, but to also get to spend time with kids like them. They spend a long weekend with other kids who have the same medical problems they do, who really understand what it's like to maybe not be able to do everything that their "normal" friends get to, who understand what it's like to take meds and who understand the side effects because they've been there, they have to go through it too. My cousin has been keeping in touch with some of the girls she met there. As supportive as her family might be, we can't replicate the feeling she can get from talking to someone who has been in her shoes. We can be there for her, but we don't know what it's like. Her friends at home are incredibly supportive, too, and for the last few years, they've participated in a Walk for Lupus with her in the Bay Area to raise money for research.
Camp Milagros is sponsored by the Northern California Chapter of the Arthritis Foundation and private donors, and unfortunately, this year was my cousin's last. My uncle sent us an email with a link to a video that was created this year, so that's what I'm going to share with everyone now! You can see the video HERE. It's a pretty special place.
But I have something to write today. :)
As most of my readers know, my 13 year old cousin has lupus. She was diagnosed when she was just nine years old, after several months of low energy, muscle and joint pain, that sort of thing. We were all pretty relieved that it wasn't leukemia, though we quickly discovered that lupus has its own challenges. My aunt & uncle have done a great job regulating her symptoms and meds so that she's on low doses of steroids and things like that. This summer was hard, and her blood work came back not so great in August - probably because of how much time she spent in the sun. She's only 13 and wants to be able to do the things that the rest of her friends do, but unfortunately, she also has to learn all of this on her own, now. She's old enough to realize the consequences of some of her choices. If she decides to spend a lot of time in the sun without covering up properly? She's going to feel like crap and the doses of her meds will probably go up. But she's done things to try to help out, aside from the medicine stuff. They eat all organic stuff, trying to avoid pesticides and other gross stuff that might negatively affect her disease, and she stopped eating meat. No idea if there's really any evidence to suggest that this will help, but I'm not the one who has done the research. All in all, it's tough on her sometimes because she desperately wants to be a normal kid with the rest of her friends, but she shouldn't be out in the sun as long as the average kid, her joints hurt when she has flare ups, she gets tired more easily.
For the last few years, she's been attending this great camp in Northern California called Camp Milagros. It caters specifically to kids (8-13) with juvenile arthritis. My cousin does have some arthritis because of lupus, so. Anyway, because this camp is designed specifically for kids like her, it's a fantastic place for these kids to not only have a fun time and act like normal kids, but to also get to spend time with kids like them. They spend a long weekend with other kids who have the same medical problems they do, who really understand what it's like to maybe not be able to do everything that their "normal" friends get to, who understand what it's like to take meds and who understand the side effects because they've been there, they have to go through it too. My cousin has been keeping in touch with some of the girls she met there. As supportive as her family might be, we can't replicate the feeling she can get from talking to someone who has been in her shoes. We can be there for her, but we don't know what it's like. Her friends at home are incredibly supportive, too, and for the last few years, they've participated in a Walk for Lupus with her in the Bay Area to raise money for research.
Camp Milagros is sponsored by the Northern California Chapter of the Arthritis Foundation and private donors, and unfortunately, this year was my cousin's last. My uncle sent us an email with a link to a video that was created this year, so that's what I'm going to share with everyone now! You can see the video HERE. It's a pretty special place.