I do apologize, this post is kind of piece meal... by the end maybe you'll know something you didn't before. Or maybe not, who knows. All I know, is I felt like I had something important to say. I'm going to get on with it now. Yeah.
I went to the EDNF conference in Northern Kentucky this past weekend, and it was AMAZING. Really. There were so many things to learn, and so many people with EDS, it was crazy. Everybody had some little trick to teach you. Not only that, but all of the seminars were really informational and such, and it was great to talk to the experts about how they treat patients with the same problems that I have.
The Silver Ring Splint company was there, which was pretty amazing in itself. I ended up being fitted by the woman who actually owns the company. I was there for going on three hours trying to figure out the solutions to the finger problems that I have been having. My pointer fingers and my pinkies have been dislocating lately, once it was even just by setting my hand down the wrong way. I picked out all kinds of splints that way I won't have a bunch of my hand problems anymore, the pointer finger thing unfortunately doesn't have a splint, but I ordered all of the other ones and I'm really excited to get those soon.
The other thing that I learned a lot about during the conference was wheelchairs. Mostly because me and the Instigator (another member of the Bendy Rebels from cripple camp...) took turns in the one that he brought with him. The first day of the conference I ended up rotating my left hip and the next day he ended up rotating his right, so we were pretty messed up that weekend... Anyway.
So when the conference was over I came home and relayed all of these things to ma madre, who was not thrilled that I spent so much money at the conference. Not to mention the 200 dollar shoulder brace that I bought for myself while I was there... Yeah I did that. I tried the thing on, and I thought that it was so amazing that I had them hold it there for me, and I just bought it. I was very happy about it too... :)
I learned all kinds of things about why I can't sleep too, and about disautonomia in general, which is what most likely causes my sleeping problems. Apparently my body basically doesn't know how to regulate my adrenaline output and my heart rate (in the simplest terms) because I'm just wired funny, and so I wake up all of the time because my heart rate wakes me up, and I'm sure some of the time pain does too. But I learned that, and I learned how to set up a 504 plan at my high school which I am in the process of doing right now, and I learned all about scary shoulder surgery.
And the sunday after I learned that if you pay attention to your surroundings you can find perfectly fine wheelchairs sitting outside of fire stations with huge "FREE" signs on them. So yeah. That definitely happened. I thought that my mom was crazy when she turned the car around too. It was pretty great. She pulled into the church across from the fire station and I was like "What the hell mom??" and she said nothing, and then I saw the chair and I said "Woah!" followed by several expletives that represented my shock well. :) It was a pretty amazing five minutes, I'm not going to lie. I mean, we already ordered me a wheel chair but I won't have it until next week. It was pretty good to know that the universe is watching out for me.
In other news, I would really like to get a pet.
That is tacked on there just in case my mom is stalking my blog. She needs to know that I should be allowed to get a female pet rat, and name her Rose, and let her roll around my room in a hamster ball.
So if any of my mom's friends are stalking my blog, put in a good word for Rose the rat. So yeah.
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