senior pics and the failure of an architect...

Hello internet. :) I have a few video posts that I'm working on getting up here from several days ago... I just don't know if I like a vlog format or not yet. Anyway.

I figured since I did some more senior pics of myself I would go ahead and post them because they're really fun.

This one is my favorite in this batch... I think I'm going to do another set before I get them printed.

They turned out really well I think.

In other news, I got my ring splints, and my new wheelchair. I love both things. :) My ring splints are amazing, because they really help with everything... The chair is wonderful because its compact, and light, and it makes my life a whole lot easier. :)

The unfortunate thing is when I use it at school, some of the time I don't even really need it. The reason that I use it so much is preventative. Sometimes at my school the people in the halls can be really rude, and by that I mean they will run into you for no good reason and push you down and then you fall backwards spin around and land on your kneecap, dislocating it. Not that something like that happened to me... freshman year... I'm not bitter.

But yeah. So some of my wheel-y chair use is really because I would much rather not be run into and dislocate things. Its just easier, unless I'm trying to get back from the Manchester building. You see, some designer a long time ago decided it was a really good idea to put a second building on my school, and not attach it to the main campus. The second building is called the Manchester building, and there is a road, a parking lot, and an onning that separate it from the actual school. It takes about 1/4 of a mile to get there walking. The problem herein lies that the someone who decided it was a good idea to put a California style school in the Midwest forgot that it snows. A lot. And there are kids in wheelchairs that will eventually have to wheel themselves through the snow. So yeah. This is NOT my happy face right now... And just you wait. It gets worse!!

You know how there are laws that govern things like how steep wheelchair ramps are supposed to be? Well there are. And those regulations say that wheelchair ramps in Ohio should be a 1 inch rise to 12 inch run ratio. Which is about barely sloped. So at my school there is this ramp, and its pretty much the steepest ramp I've ever seen that wasn't in a skating park, and it is PHYSICALLY IMPOSSIBLE to roll yourself up the damn thing. You end up getting stuck, and then you realize that you can't go up any further without tearing the skin off of your hands, and then at that point, you realize that you can't really move because if you do you'll tip backwards... Its a very delicate balance and no matter how you do it none of the methods end in being at the top of the ramp in the hallway that everyone has to go down to get ANYWHERE in the school. Can you tell I'm more than a little bit miffed by this predicament that I've been in multiple times? Every day I have to wait for some kind soul to walk out of the adjacent bathrooms and hope that whoever it is is having a really generous day, and that they can take three minutes out of it to push my chair. Anyway...

Gabrielle

not enough about EDNF

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. 

boots

So yesterday I got a pair of boots. I had been looking to get a pair for a while, but then at the camp there was another EDSer who wore them all of the time, and he explained all of the awesome things that boots do, so I got a pair, and you know what? He was definitely right. Completely. :)

So firstly, the boots are adorable, and I'm okay with wearing them all of the time. Second, I can't really walk without my inserts anymore anyway, and even on top of all that, they are beyond helpful. They stabilize my ankles, which is pretty amazing. I got out of the car yesterday wearing them, and I turned too much, and I heard two consecutive pops, one in my knee and then one in my ankle, and all I did was take my weight off of that left leg. Thats all. I had never realized that there was a pop when I subluxed my ankles before because my face is normally flying in the direction of the ground. It was just amazing to feel my ankle sublux but not become close personal friends with my driveway. :) 

My boots definitely hold my ankles in place, and they are making it a lot harder for me to hyper-extend my knees when I walk because it means that my legs are more correctly aligned. Its pretty great. Now I need to get some really cool socks to wear part of the time... :)

Brie

wheelchair rant. yup.

Well, I finally have a little time to talk a little more about nationals. I qualified in Student Congress (this was high school speech and debate nationals... anyway.) and I was the first alternate Western Ohio district in Drama, which is my actual category. Imagine that. Me, dramatic. Anyway. 


The unfortunate thing about nationals wasn't that competing in a category that I had only ever done once stunk, it wasn't that I didn't get to sleep in my own bed, and it wasn't even that going all around Indianapolis because we didn't stay in the hotel where congress was hosted was inconvenient. The most unfortunate thing about nationals was that after three days I ended up stuck in the wheelchair that we brought with us. And in all honesty, hindsight being 20/20 we almost didn't even bring the thing. We had to tie it down to the roof of the "intermediate SUV" that we rented for the trip. It was quite the sight  when we were putting it up there too, one of my coaches was running boy scout knots through his head trying to make sure we wouldn't lose it at the side of the highway... It was craziness. 


Needless to say, the boy scout knots were pretty effective, because we I had to do the rest of the weeks competition in the wheelchair after I was done with congress. During the last 3 hour session I subluxed my hip, so I couldn't really put weight on it, especially in the not-so-super sensible shoes I was wearing at the time. (Speech and debate is strictly business attire...) The staff was really nice about it though, that was the one thing that really surprised me. They were definitely really accommodating, which I really appreciated. One of the guys from TAB (those are the people who tabulate all of the results from the tournament) came to my congress chamber with a wheelchair for me to use until I could switch to the one that we brought, and then he wheeled me into the common area because the thing was terrible to try to roll on carpet. Oh!! Soap box time!!!


So, handicap accessible bathrooms? I wanted to shank whoever decided that all you really need to be able to get into a handicap stall is 6 more inches of space in width and a foot in length. Totally. Because it is SO easy to get a wheelchair in the three by three space that is most likely the legal state minimum size for the restroom to be handicap accessible. Want to hear some more? Thats not even all of it. This hotel... UGH. The bathroom door was one of those that was perpendicular to the wall it was on, with one of those little indented areas. that you have to pass through to get to the door. It was IMPOSSIBLE to turn the wheelchair at a sharp enough angle to get it in there with me in it, so I had to stand up and limp in there, shrink the wheelchair down and then pull it in with me, and then expand it by myself (not a simple task, let me tell you...) and sit down, only to look up and see the slightly larger than normal stalls handicap stall. I was not thrilled, if you didn't notice that already. Honestly, if I'm ever a politician one of the first things I will do is make the world just a little more fair for all of us disabled people... I just can't believe that it is legal to have that little of a difference for the stals. There was just no way to possibly get into that bathroom without getting out of the chair, which begs the question, what about all of the people who are in wheelchairs who CAN'T limp like I can?? What about amputees who didn't get prosthetics, or people with degenerative spinal diseases so they really physically can't get out of their chair. What are they supposed to do?? Crawl on their hands and knees?? Honestly it was cruel and unusual punishment. I would love to meet the guy who drew up the final blueprints for that hotel and kick him in the kneecap so hard he would have to be in a wheelchair, and then he'd understand exactly how difficult the world is when the bathroom stall is six inches wider than the normal ones. 


The thing is, its like that everywhere. Doors without handicap buttons? You better be sure someone is going to hold the thing open for you, because if not you are just shit outta luck my friend. The pull ones are the worst, because you have to open it about a foot, then move your chair without letting go of the door because if you sit your chair too close to the door you're pulling then (obviously) the door won't be able to open because you're in its way. Its a very complicated task. Hotel breakfast counters? I needed a flippin' periscope to see the doughnuts. It was ridiculous. OOO!! The really awkward one. Being in a public restroom that has four normal stalls, and the only one in use is the handicap one and the girl in there is perfectly fine. So at that point you have to wait there, awkwardly in your wheelchair until the girl comes out. This specific girl went white as a sheet and felt so bad that I had to wait that the only thing that came to her mind to say was "Oh my God, I'm so sorry, I feel like I parked in a handicap space! I'm so sorry..." I thought the whole thing was pretty funny after I got over the fact that I had to wait for about ten minutes. See, then there's the really embarrassing stuff, like rolling over peoples toes. I felt terrible when I did that, and I wasn't rolling my own chair so I don't blame myself totally... Anyway, there was this really narrow hallway that we had to go through, and there were people sitting on either side and some guy didn't move his feet. I apologized profusely, but get this. He was VERY adamant that it was definitely his fault, and that I shouldn't be sorry at all. Eventually I looked at the guy and I said "Look, I'm the one in the wheely-chair. Its my fault, I'm sorry." I just felt to bad. 


Wanna know something else great about wheelchairs? There are two basic healthy-people reactions: 


1. I'm going to really awkwardly stare at you until I figure out what is wrong with you because you are obviously not wearing a cast. I will also make a sympathetic face that implies I know what you are going through, that way when you notice that I am obviously staring at you it won't seem rude. 


and 


2. I'm going to pretend to completely ignore you. No really. I'm not looking. Okay, maybe I'm looking but just out of my peripheral vision, so you can't tell. Maybe you can't tell because you're mentally challenged? Yeah... You're not wearing a cast and you obviously have healthy looking legs... You're probably mentally challenged. Oh! I could say something casually and see if you're normal or not... 
*healthy person:"Odd weather we're having." 
*disabled person: "Yeah, looks like it will rain. Those cumulo-nimbus clouds are starting to look really ominous."
Well damn. 


Seriously though, those are the two reactions. The "sympathetic" people, and the ones who are obviously trying to assess your intelligence because you look like one of those people who is in a wheelchair because they don't have the mental capacity to walk. And don't get me wrong, I have no problem with those people, Thats not what I'm saying. My problem is that people are all so nosy that they feel the need to know exactly what is wrong with disabled people. Even myself. I catch myself doing it sometimes, like when I see someone who looks perfectly healthy park in a handicap parking space and they have the tag in their car. In my head I go "Seriously dude? Seriously. That 80 year old woman there could have used that space but no. Now she's going to have to walk three miles to get into Elder-Beerman. Good job." Even though they have the handicap tag, in my head I'm thinking about how they don't look like they're disabled so they don't look like they should be able to use that parking space. Since I've been diagnosed with EDS I have stopped questioning it as much though, now in my head I go through all of the invisible things that could be the reason behind that person parking in the space. Maybe they even have EDS like me... Anyway. 


TANGENT. Back to what I was saying earlier. There are two reactions that you get from people, and neither of them are particularly thrilling. People really don't know what to do around disabled people, especially disabled kids. And realistically, with the way that prosthetics are these days its not a long shot to say that normally the only people who end up in wheelchairs are those with genetic diseases, and those with broken bones. Thats not all inclusive, but its pretty close. The thing is most people these days don't encounter people in wheel chairs, so they don't know how to act around us. They just don't get it. I really don't need help. Sometimes I do, but I will ask if I really need it. Doors, okay, maybe that would be helpful, but I can definitely press the button for the elevator, and drink from the drinking fountain (I learned on that trip that the short water fountains aren't that size for very small people. I had no clue that they were for people in wheelchairs. I got really excited when I realized thats what it was.) and I can carry things, and I can definitely take care of myself. Healthy people don;t know how to react to that. They tend to assume that people in wheely chairs wither want their help, or need it. I don't quite understand the logic... Anyway. 


Its time for this snarky EDSer to go to bed... 


Brie

nats?

In the past ten minutes I remembered that I haven't posted anything about nationals on here yet, and Nats was over a month ago. I feel like I have deprived all of my non-existant loyal readers... Anyway. Nats went really well, and I didn't have much time for photography while I was there, but here are a few pictures from one of the days we went out. :)

 

This is a really cool mural in Downtown Indianapolis that I saw when I was on the way to the market. 

 This was a really pretty archway that I thought I would take pictures of. It was really pretty. :)

This was the restaurant that I got my lunch at when we went to the market downtown. Their logo is an elephant so it makes me really excited. They had all kinds of elephant related things to photograph. 

This was the side of one of the vendors booths. It went on forever, but there wasn't any room left to write anything else on it so I didn't get to doodle. :(

This is my favorite picture that I took the whole trip. I really liked the effect that I got by looking in the window. It was really weird for me to look back on being in the chair too... It was so strange to be so dependent on other people for that longs. I didn't like it that much. 


I guess I'll post some more stuff about Nats when its not one in the morning. :)


Caesura