Well, I found out from our Arthritis Foundation branch that we have been given another opportunity to go to the Juvenile Arthritis Conference this year!!! I am so excited!
Emily was first officially diagnosed with arthritis on January 10, 2008. We pretty much had to go it alone for the first two years. I had done tons of research, but I never found any blogs or anything for the first couple of years. I found a group, the "JA List", but I had a hard time keeping up because I work full-time and I'm crazy busy. I could read and keep up a bit, but I didn't feel a "connection". Honestly, I ended up spending more time reading the Caring Bridge entries of a woman on this list. She wrote about the horrible battles she and her little girl were fighting, trying to beat her arthritis. For whatever reason, I felt a strange connection to her, to her daughter, and felt somehow that her daughter was similar to mine. Granted, our battle wasn't nearly as tough back then, and it still isn't anywhere near the level that this little one had to deal with, but I really felt they had some crazy bond. Well, anyway, I read those blogs quite often, but still never really felt the full effects of the list.
In March of 2010 I ended up receiving an invitation for lunch with some other parent's of JA kids and a member of our (somewhat local) AF branch. (Luv ya, Tony!) This proved to be a life-changing lunch. This was the gateway that connected me to several of our area families, and a webpage that one had started just for JA families. Facebook started to become a tool for me to connect with these people.
After I met these people, I started to utilize my blog more. I had originally started it anonymously to gripe and complain, but I soon discovered that I didn't really do that. I later found Blogger and realized how easy it was to network. Suddenly I had a small (but growing) collection of blogs to follow, mostly written by families with children suffering from JA. A few of them found me on Facebook. I found a few people from the 2010 JA Conference on FB, wishing that I could have met them in Philly. The week that Emily was hospitalized, one of these FB mom's started a group called "Arthritis Friends". This family has completely changed my life. We now have 204 members, all of whom are amazingly encouraging, helpful, kind, and supportive. Several of us are going to the conference! We're trying to figure out the best ways to meet up :)
At last year's conference, I learned a LOT. Even having already done a ton of research on my own, I still learned a lot. There is truly something for everyone, from newly diagnosed to the fairly well self-taught. Just to be able to go and socialize with other people that understand is amazing. It's a wonderful way to make new friendships! What does it bring for the children?
The children have the opportunity to be with other children just like them. These kids are given the chance to be "normal". They can share and talk about their disease(s), or not. They play, make arts and crafts, have special events, and they have speakers that come to speak to them. They learn a bit about how important advocacy is, which I thought was really cool. Most importantly, they have other people that suffered from JA that offer up hope for their futures, and help them with coping mechanisms.
Who watches these kids? Well, the PALS in Emily's room last year worked for the Arthritis Foundation. Why are they there? To see who they are helping, to see the quiet strength and courage that our children have. To know that they working for a good cause, and to help them recharge and work harder through the year for our children. I am so grateful that this life- changing tool is available to us. I can't wait to go and meet my family that I haven't met yet, and see those that I have! I love you ladies! <3
*** I've met my best friends on FaceBook*** <3
*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, June 9, 2011
JA Conference 2011!
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