Saturday, October 27, 2012
May I point you elsewhere for a moment?
We arthritis people stick together. I have made some lifetime relationships because of arthritis. It started with blogs. I found a few different blogs around the time that I started blogging. I really didn't know anyone else yet. What I didn't know then was that Florida had its own little JA group going on. Thanks to one of my favorite AF employees, I was introduced to this group. It was really cool that people that lived near to each other could easily find each other on one page! We started meeting up. Sometimes by accident, sometimes at planned events. Actually, it was one of our Florida mom's that started me blogging.
The week that Emily was diagnosed with Dermatomyositis, I logged onto a family computer at the hospital (I wasn't expecting our first visit to the new doctors to last six days) and I found a group invite on my Facebook page. This led to a group of JA mom's all together on one real-time forum. This was like an epiphany. It was just a little bit before this that I met Parker's mom.
They go through so much. I "met" them online first, just after Parker was diagnosed. A few years later and we've shared tears, had our kids (and some of our other favorite families kids) play together. The kids support each other in ways that their well friends couldn't possibly. Parker's mom has become an even larger advocate than me. Their walk team at this past Arthritis Foundation walk raised over $10,000, and Parker had his favorite pro baseball player come hang out with him!
Parker's mom asked a group of us not long ago what one thing we wanted people to know about Juvenile Arthritis. Remember, there are over 100+ forms, and when I say JA, I am also referring to Juvenile Dermatomyositis, Lupus, Scleroderma, Mixed Connective Tissue Disease, Psoriatic Arthritis, Still's Disease, etc. With input from so many different groups, this is the list that she came up with. This explains why I don't make plans, why we always try to see the good in everything, some of the things that we all think about, worry about, and want other people to know. We've all said these things, but when you post them all together in one place like that.... it's powerful. This is one of the best pieces I have personally seen. Please check it out.