Time seems to have stopped moving yet the anticipation is getting greater for the JA conference! It is all that I can think about. Emily is pretty excited as well. What a busy time! We very rarely get the chance to travel. In her 8 years we've only had two family vacations, and for those we drove. (Not the best idea but we didn't know what was happening to her at the time.) I've had so many questions that I've had to figure out answers to! For instance, bring the wheel chair or the stroller? How to get from the PA airport to the hotel? Silly stuff for those that travel often, but of huge concern for someone that has to anticipate potential problems. I try so hard to keep her comfortable, but every once in a while lack of preparation on my part proves to be difficult for her. Hopefully I have now thought of everything!
I'm so excited to meet other Florida Mom Squad families, and some others that I have met now through Facebook. What an awesome, powerful tool that site has become for us. Three years ago before her diagnosis, and for a bit after I was so lost. I had to work on finding the real personality inside of my daughter whom we thought we had known so well, only to find that most aspects of her personality were a result of the great pain that she was in. I was angry at arthritis, and wanted to do something. But what? I threw myself into research. I contacted the AF a few times, and started doing some of the advocacy, but it didn't feel like enough. Yes, we had our local walks and fundraising efforts for that, but still there was something missing.
Through the Florida AF's Facebook pages & a few other pages as well, I was able to offer and share all that I had learned. (I have also met some amazing people because of it.) I could help to support people- some of whom had children that were newly diagnosed and sort of lost like I had been. That is exactly what I was looking for in June of 2007 when our pediatrician told us that she suspected JA. Since then I have lost track of how many hours I have put into JA & other rheumatological mysteries. At the time, I felt that I could have some sort of control through research, that maybe I could help Emily by learning all that I can. Learning how & where to find important info, learning that I would need to be an advocate for her in ways that I never expected, & learning how to be that advocate all took a while. Remembering every time that she went to the pediatrician for an infection that she couldn't have Sulpha antibiotics because of her Methotrexate, remembering that she couldn't have Motrin for her fever when she was already on Naproxen... things like that. I'm sure I saved her a few really bad times because of little things like that. I had always been a sheep before, blindly following what the doctor's said unless I read something later when I got home that said otherwise. I learned that to have a good appointment I needed to be on their level to the best of my ability, and pointing out a potential interaction was not by any means considered "challenging" the doctor. I learned that even the doctor's that feel that you can't possibly know anything will feel otherwise if you are patient enough to hear them out but prove that you understand exactly why & what they are saying... even if you don't agree. And so, that said, I am absolutely thrilled to have this opportunity. The AF was amazing enough to give us a scholarship because- as many parents of a child with medical problems would agree- we just couldn't afford to go otherwise due to medication costs, lab copays, doctor visit copays, etc. Even just the costs of the silly things that other people would stare at you blankly for deeming vital add up. Things like electric blankets, hand warmers, under shirts. We need hand warmers even in the summer with her Raynaud's, though it hasn't come up as often this summer since she's been home more than anywhere. All of this has prepared me to have an amazing experience that I can bring home and share with others! It will also give Emily the opportunity to learn, and to share time with other kids that are in the same boat. This is part of what the Arthritis Foundation does. I have always hated fundraising in the past, and before I always wondered about the intentions of the reciprients. I don't have that worry with the AF because I know that they give scholarships to people for the conferences, but they also donate to the camps for sick children. This year they were able to send EVERY CHILD that applied to camp in Florida for rheumatology session!!! In today's economy I think that's amazing. If you are looking for a good organization to help support they are it.
17 days to go! Wooohooo!!!!!!
*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, July 12, 2010
Are we there yet?
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I hope that you guys have an AWESOME time at the conference. Be a sponge, absorb EVERYTHING, and bring all the info back to us families that couldn't go. BTW - miss you!ReplyDelete