Going home is so sad. I missed my family desperately, & Emily was not at all her normal self without her brother, her strength! But the conference was an amazing experience for Emily & I. One can only research so much before feeling "tapped out". Before I went that's the point that I had reached.I couldn't find anything else on JRA that I didn't already know, and I really couldn't find anything on Mixed Connective Tissue Disease at all. My goals for the conference were to find out more about MCTD, talk to some other parents that deal with Raynaud's, try to learn whatever else I could, connect with people- especially the other Florida families, & find out more about advocacy.
On Saturday morning during the general session, they had a group of adults that were diagnosed as children speak. Sometimes I think of how horrible this disease is, then I think of how many years Emily will probably live in pain & it makes me sad. These speakers all agreed that while it has its disadvantages they wouldn't trade it. They all gave us a large measure of hope. They are successful & happy people. Boy, did I cry a lot listening to them! Their words gave me huge comfort. After the break it was time to move on. I chose the Roundtable Session on MCTD's. I wasn't 100% sure we even belonged there, but there was only one way to find out.
Not only did we belong there, but it was only 2 other families, a rheumatologist & myself. What I learned in that session was completely fascinating to me. The little lumps that she sometimes gets that are so painful that she can't walk/ can't hold a pencil? Those are called LUPUS pernia. I need to see if her blood tests positive for an RNP antibody. This doctor places most of her issues in the Lupus family instead of the RA family, though in her case her arthritis would certainly be considered a primary disease. That would also include the Raynaud's, and quite probably would explain her upper GI distress that she's had in the past. (I used to have to carry Prevacid in my purse medical collection). I knew that her nails & fingers would show damage, but I did not know that they can show *risk*. She may even have muscle inflammation. This roundtable was absolutely 100% what I needed. I got to drill the doc on her Raynaud's also. I feel justified now in pursuing medication for it.
Even classes that you're pretty sure you know everything are good to sit in on. Even if only to find out that you really do know everything! (LOL! Just kidding!) I did learn more about some new meds, & I asked about how the doctor in Pain Management feels about magnet therapy. He doesn't really know what to think yet. I think it works so I guess that's all that matters. This doctor seemed really open to new ideas so it seemed very valid to ask. Someone else asked about medical marijuana, but apparently it hasn't been thought about much yet. No, I would not let my child go get high, but the medical version is much different. They keep it clean- it's not laced with additives or chemicals. It can come in pill form, and it's proven to be safer than the narcotic family. Anyway, it was nice to have it come up. I have wondered about that.
Saturday's last class that I chose was on insurance & programs. I learned a few tricks from that as well! The speaker passed out some helpful information, too.
The party Saturday night was awesome, with balloon animals for the kids, face painting, photos and wonderful company! Sunday gave us the awards ceremony where we heard of these ordinary people (many with JRA!) doing extraordinary things. It blew me away how much some of these people have done for the AF &, in turn, the cause. It's exciting to be in the company of these people, and see their accomplishments.
I came to the conclusion this morning that although JA SUCKS & I would never wish it on anyone- especially a little person- some of these children flourish because of instead of in spite of their disease. Some of these children grow up with parents that care, that drag them around to learn how to advocate for themselves, that meet the governor & address Congress, and gain support for the causes that they believe in. Some of these children develop a passion so strong that they don't need their parent's help anymore because they've been led so strongly through the years. These people become teachers, social workers, nurses, or work for the AF. Maybe they'll even become scientists to help make new drugs. They have a HUGE support network in the Arthritis Foundation, people that will stand behind them. They make new friends at the conferences every year, and get to see old ones. These kids "grow up" together & can help support each other. I'm sure that may not help my daughter's legs stretch out on a hard morning, or help her walk deep in a flare. But it can keep her mind above water, her head clear. There is HOPE. There is LOVE. And, with hope, there is PEACE. Could any of us ask for more?
*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!
Monday, August 2, 2010
End of the JA Conference :(
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