limitations

"I can do all things through Christ who gives me strength."

Philippians 4:13

*For the sake of anonymity for those who I'm going to talk about here, I'm not going to name any names, and I'm not going to give any relationships that aren't necessary to the main point of the story, because that could potentially be hurtful and being hurtful isn't the point.*

A few days ago on a family trip I was talking to someone with whom I am not terribly well acquainted. This person did though, know about my disability, because everyone does. I have NO problem talking about it in an informative and open way, because it's a big part of me and I understand that. Anyway - we were sitting and talking, and this person asked me what I plan on doing after I graduate. There are many things that I could have said. I could have told them that I was going to go to grad school and get my masters, or my doctorate, or go directly into research before pursuing a graduate degree. I could have told them about how I intend to go into teaching, because I have been most profoundly influenced by my professors and I want to be able to influence young people in that same way. Buuuuuuuut that's not what I said. I said the one thing that I DO know for CERTAIN - when I graduate, I want to be a mom. I want to have kids. I have wanted that since I was about 7 years of age, back when I couldn't tell people those things because they would have thought that I was crazy. 7 year olds want to be astronauts and super models, not moms. So I told this person that I wanted to be a mom, because that has been my dream. 

Normally when I tell people this they awkwardly embrace my surprising response. 

Not this person. 

This person said, "Are you sure that's a good idea?" 

And I said, "Excuse me?" 

And with quite the attitude they said, "Your disease - it's hereditary, isn't it?" 

I was shocked. I responded with, "Well there is a 50/50 chance that it will be passed on." And that was the end of that. (BOY do I feel better putting this in writing...)

It also happened to be pretty much the last time that I voluntarily spoke with this person, because anyone who could be that presumptuous was not someone I wanted to speak with freely. 

When I was a child, my mom told me that if I couldn't say something nice, I shouldn't say anything at all. I'm sure a lot of people have been told that at one point in time by a parent or guardian or just an adult. If I was speaking with someone I had barely just met, I would never dare to make the judgements that were made that day, and I would certainly have never stated them the way that the person I was talking to did. They were blunt beyond belief - but one can be blunt without being rude. There is a difference. 

What I really learned from this experience is that the easiest way to bother me is to remind me that I'm disabled. It's not like I forget. Honestly. I'm constantly reminded that I'm different, without people telling me. So the easiest way to get to me, and really fire me up, is to act as if you know what is going on in my life. To act like you know what is best for me. I'm the one in this body, with the limitations that I have been given, and therefore I am the one with the job of sharing what those limitations are. If I don't tell you, you don't know. 

It's the same way with the issue of walking. My mom and I now have this unmentioned understanding (Well... I guess it's mentioned now...) that she doesn't ask me how I'm feeling. She will ask me if I want to do a particular activity, and depending upon my response, she knows how I'm doing. If she asks if I want to go hiking, she lets me pick the trail. I pick whether we walk one mile, or two, or five. She doesn't just PICK the shortest trail because I sometimes don't walk so well. That's the magic of my mom - she lets me make my own limits, and she lets me make those choices and own my disability, as opposed to making it own me instead. 

The moral of this story is this - do not limit other individuals because you think you are doing what is best for them. You have the best intentions, I know. But everyone has insecurities, and it's a shame when those insecurities are used to hold people back against their will. This is especially true (in my opinion) when it comes to people who are similar to myself. So next time, before you try to be sensitive to someone's situation, consider whether you are helping or hurting with that attention that you are paying them. Are you limiting their choices, or are you empowering them to show you what they need - to learn things about themselves that they didn't know? To take ownership of their situation? 

I know that when I am a mother, because someday I will be, if my children inherit my condition there will be a point probably shortly before they are the age that I am now, when I will have to let them learn for themselves what they can and cannot handle. When they learn that, and learn to effectively communicate it to others, I will know that I have been successful. 

Me, Justin, and my sister Megan starting the Hope Furnace trail at Lake Hope State Park. It's a 3.8 Mile trail, and I walked it with them and my mother that day.  Just sayin'.

if you judged them with only your eyes, chances are you're wrong.

You know what I never posted about? An experience that I had over Christmas break from school. I was working my day job at the mall, and I got off of my shift at about two o'clock I would say, (It's been a while so I don't completely remember the time...) and I had been having a particularly difficult morning on the EDS side of things. 

By the time I got done with my shift I was exhausted and I was limping rather badly because I had somehow managed to injure my left knee. My left side is my bad side, and if I can get through a day without injuring something on that side of myself, it's seriously a miracle. Anyway - I'm limping out to my car, which is parked in handicap parking, because I'm handicapped. 

Lets talk about that for a minute, since I'm ranting. 

I went through the arduous process of acquiring a prescription for a handicap placard from my geneticist because when I started driving I realized that walking from the south-end-of-east-parking-lot was really awful with misaligned hips. I can't tell you the number of times I tried to go to Kroger and had to sit down by the time I got to the front of the building. I'm basically an 80 year old woman - but I digress. I went through this almost two-month process because I wanted to make my life slightly less painful. I didn't do it because it would make my life more convenient, or because I wanted to play the system or anything like that. I did it because walking hurts, and no body likes pain. Agreed? Agreed. Moving on. 

So I was parked in handicap parking, with MY state issued placard displayed clearly, hanging from the rear-view mirror. I finally reached my car after limping through the packed mall parking lot, (since it is Christmas season, after all) and I get in, start my engine, and begin to pull out of the space. 

I see movement to my right. 

There is a woman, looks like she's in her late 40s early 50s, standing next to my passenger side window. She knocks on it. I open it. I look at her questioningly and ask if I can help her, not thinking anything of it. 

This woman looks at me with all the loving kindness of an upset crocodile and practically spits "You don't look very disabled - you take Mommy's car today so you wouldn't have to walk?" 

I can only imagine what my face looked like after she said that. I was half pulled out of my parking space, blocking traffic, and this woman is waiting for my response. I was so upset that I burst into tears and said, "This is MY placard ma'am, from MY doctors - I have a joint disorder that causes serious pain. You don't have to be OLD to be disabled - if that's what you mean. Maybe you should think about other people's situations before you judge them - If I could have walked from the edge of this parking lot, I would have. But I can't." She shook her head as if she didn't believe me, and I continued to sob as I rolled up my window and finished vacating the parking space so that whoever she was saving it for could park. 

Not all young people are self absorbed. Not all young people have no respect for authority. Not all young people think they can take advantage of systems that are there for people who need them. 

Not all old people are disabled. 

Not all people with disabilities are old. 

Some of them are 5'4", 18 year old brunettes who can't believe that the handicap space is so far from the employee entrance. 

If I had been 50, would anything have been said? 60? Maybe even 45? 

What about gray hair? Would that have done it? If I had been wearing a brown scarf instead of the hot pink one my co-worker had just given me? Something more mature? Older? Would that have made me look "disabled"? 

Do 30 year old men with cardiac problems walk with limps? Do they wear joint braces? Can you see their disability? No, you can't. 

Would that woman have said anything to a 30 year old man, using HIS handicap placard? Probably not. Maybe he would have been old enough to be disabled, old enough to warrant respect. 

Clearly my hair wasn't gray enough, my face not wrinkled enough, and my back not hunched enough. That experience has obviously effected me quite a bit, because I'm still talking about it three months later. Three months later that interaction is still etched into my mind, and I can't seem to get rid of it, because it taught me something about myself, and it taught me something about people. 

I give those around me the benefit of the doubt. All the time. I think that I would want them to give it to me as well - I give people respect initially, because they have done nothing to me that warrants my behavior being anything but kind. 

Most people don't give those around them the benefit of the doubt. People are judgmental, to a degree that I didn't think possible. It was severely naive of me, I know, but I didn't realize that everyone is always judging everyone else's motivations. I thought that kind of thing existed in the hallways of high schools where unfortunate kids were forced to spend four years of their lives - I thought the trivial drama stopped when you graduated. Boy was I wrong. Not only does it not stop, but it gets worse. It gets worse because after school sometimes your job, your livelihood is relying on the resolution of those petty dramatic moments. Sometimes conflict doesn't happen in parking lots, it happens in cubicles. 

The point is, I was affected much more by the encounter than I would like to admit, and it's been bothering me. Someone who I personally thought would be a very nice lady was very unkind. Someone who she thought was a self absorbed young person was really a young person dealing with pain. Maybe next time she'll think twice about saying something. 



If you've judged someone with only your eyes, you're probably wrong. 

i'm a fish, and we don't climb trees.

"If you judge a fish by it's ability to climb a tree, it will live its whole life believing that it is stupid."

I won't get in to whether or not I actually believe that this is something Einstein said, because I don't care. What I care about is that it's true. I don't mean that in the way that most people mean that though. Don't get me wrong, I'm all for being unique and not judging books by their covers and accepting people for who they are and all that jazz, but that's just not specifically what I get out of this quote, so here's your context.

I sometimes complain. Sometimes I'm a really awful person to be around - shocking, I know. But everyone complains sometimes, because everyone has their own burden to carry. Some people are in debt, some people are in a rough relationship - it just so happens that I have a chronic pain disorder. Yay me. That's not the point though. The issue is, just because my complaining about my chronic pain is a different subject than you complaining about not being able to figure out what kind of car you want to buy when you get your tax return does NOT mean that you should lecture me about my kind of complaining because somehow mine is more annoying than yours. 

News flash. 

My complaining is more annoying to you than your complaining is to you because mine has nothing to do with your life. You could likely listen to yourself complain about your car purchasing troubles just as long as I could listen to myself complain about my dislocated ribs, because our own lives are far more interesting to us than the lives of those around us. I'm definitely not saying that's how things should be, it's just the reality. 

Everyone complains - if you don't I seriously envy your ability to let things roll off your shoulders. Really. Pass some of that patience over here. I could use it. But I'm willing to bet that you do complain, because every once and a while, everyone needs to let things out. Stuff builds up in a person and either you let that sit and fester and turn into something much bigger than it is, or you let those little things out when they happen and it makes us all a little easier to deal with in the end. At least that's my judgement of the whole thing, I could be wrong. It happens. 

But the point is, it will do no one in the situation any good to listen to (or give, for that matter) a lecture about how certain people (namely myself) just need to accept that "life is just the way it is" sometimes, and that you just need to "let things happen the way they happen. Pain happens, and you move on," obviously I just need to "Get over it." 

Pain happens?? It just gives me the urge to yell "Run Forest RUN" when people give me that cliché response. It's not just that generally the people saying it have no idea what I'm actually going through, it's mostly that I'm normally expecting a completely different response. When we complain (especially if the "we" here is referring to women) we generally don't want you to fix it. We don't want advice. We want you to say "Well that sucks... I'm sorry." and have that be the end of it. No one asked for a lecture. 

And maybe you didn't ask to hear me talk about how my knees are really killing me because the weather doesn't understand how to calm down, but you know what? I don't care what car you're getting when you get your tax return either. Do you hear me telling you about all the other, more useful things you could be doing with that money? Preaching to you about how many needy kids could be fed with that money? Nope. You don't. Am I thinking about telling you all of those things? Yup. But because that's not what you want to hear, I keep my mouth shut, and make up an imaginary scenario that is close to but not exactly what our actual conversation was about, so that I can put it on the internet and make myself feel a little better. (Hence perpetuating the cycle of complaints...)

If maybe we could all just judge the fish by their ability to swim and the birds by their ability to fly, then we would all be a little better off. Maybe we should stop holding ourselves to a lower standard than we hold those around us. Don't you think it might be a little bit easier for all of us if we gave people the benefit of the doubt? If we let people complain every once and a while? Loosened up? Said "Man, that sucks... I'm sorry," and just let people do what they need to do, even if it's a little bit annoying for all of about two minutes of your time? Can't you maybe, just maybe, give two minutes to help someone else feel just a little bit better about something they're going through? I'll try to do it for you too - promise.  

I'm a fish. I can't climb trees. I'm okay with that. 

I'm not asking you to be okay with it, I'm just asking you to respect that my swimming is just as relevant a mode of transportation as your climbing. Different does not equal lesser. 

Plus I'd probably dislocate something if I tried to climb trees anyway. 

just to catch you up...

So today I got to go to the ER and learn that I'm not pregnant. Which was quite pointless considering everyone and their mom KNOWS that I'm not pregnant. So yeah. 

Geeks don't have time for that ish.  ANYWAY. 

What I should have been learning while in the ER was what is wrong with my hip... Which is still up in the air. Apparently ignoring my PTs (while making me feel a whole lot better about myself and lose all kinds of weight and generally making my life wonderful) made me start doing things that I maybe shouldn't do... Like things that generally end by me hurting myself. I don't really know what I did, but my right hip is in the wrong place, and it keeps rubbing against something that it shouldn't be rubbing against when I'm walking or running or existing. When things bother me no matter what I do though, I tend to just leave them be and go about business as usual assuming that they will go away on their own eventually. This didn't. Obviously. 

So this morning I went to the school nurse when I got to school to drop off my wheelchair with him, and I realized that I really needed to go see what was going on with the hip. I mean, I pretty much sat around in his office trying to pop the thing back, to no avail. I tried everything. Then he suggested that it might not even be that the hip isn't back in the right place, it could be that I've damaged soft tissue around the joint and that I really probably should go get MRIs done so that we can see what is really going on in there as opposed to just assuming that everything is fine like an idiot... AKA me. So I listened for once, called my mommy, and went to the hospital. And as previously stated, all I learned is that I'm not pregnant. Yay. 

I'm pretty sure I made some people's days though. Like the nurses in admissions, and the registration lady and such. Everyone there thinks I'm funny because my attitude is great when I'm injured. I don't know why, but thats generally what happens. I end up in a really good mood, for some reason or other, and it is much to the amusement of everyone around me. Whatever works I guess. Plus when they have to take my weight, it takes me about a total of three and a half years to take my shoes off because I still have to wear those awful boots everywhere so that they keep my ankles in place when I'm walking. Honestly though. Three years is a long time for them to find out that I still weigh 64 kilos. (Which is odd because I've been losing weight...? Oh well.) 

IN OTHER NEWS

I got my Canon T3i!!! It's wonderful. It can do everything under the sun and I'm still learning how all of the amazingness works. There are all these menus and options, and there are accessories that I still need to get for it. I'm so excited though!! Hopefully soon I'll have a cover up on youtube using it as the camera. I'm so excited about that!! Seriously. No more dinky camera from my ipod for videos of me singing. XD 

Oh! And I sent in the senior pic that I'm using in the yearbook. I edited it and everything, and I'm pretty proud. It though, was taken by a T2i that belongs to my mom's best friend, Jen. the camera is wonderful, she is wonderful, and the pic was wonderful for me to edit. So I guess wonderful was the theme that day? 

Can you guess which one is for the yearbook?? 

It's the first one. In case you didn't notice. 

That second one is me in the most awesome outfit ever, at the hospital this morning. That's my "I'm so thrilled to be here" face. This one was after they finally gave me the second gown to wear backwards so that my behind wasn't flappin' around everywhere in my blue undies... seriously. Someday I'm going to invent a cheap hospital gown that actually covers your butt. How hard is it really to do that?? Not hard. Maybe a teeny tiny bit more fabric. Plus, they make those gowns cover so little, and then make the rooms so cold!! IT makes no logical sense what-so-ever... ANYWAY. Apparently dots are the new thing in hospital apparel. Who knew? 

Brie

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

debbie downer

I'm in a really bad mood today. Most of it probably has to do with the fact that I've barely been sleeping ever, and the fact that I've been looking at my work schedule and my school schedule, and everything is so jam packed I feel overloaded with things to get done and things to plan for and its CRAZY. 


I guess the other thing is all of my friends are starting to really think about college and all I know is that I want to go into social work. Thats all I got. I want to work with kids, and I want to be more on the counseling side of the social work spectrum, so I know what degree I need I just don't know where to get it. I also don't know how I want to go about getting my degrees, like if I want to do a major and a minor... Ugh. I just don't know what will be easiest, and the other problem is the fact that Ehlers gets in the way of me getting things done a lot of the time. I make a serious effort not to let it effect me the way that it could, but I worry that it might become less manageable when I'm all by myself or even sharing a dorm. I don't share well... Also wherever I go will have to be REALLY handicap accessible. There are all kinds of things that I will have to think about that normal teens don't have to think about when they're picking a school. It gets so complicated, and I really don't like it much right now. Anyway... 


I don't know what to do exactly when it comes to school yet... I guess I kind of ranted here, didn't I. Whoops. :)


In other news, I worked this morning at this really neat product brainstorming session for some company that I don't even know the name of because everything is really top secret. They hired my boss and I to teach the people a little about henna tattoos for their workshop thing... It was really neat. Odd, but neat. 


Just felt like sharing. 


Brie

gastro, senior pictures, and chili. not in that order.

I already remembered something else to babble about. 


My gastro problems have been getting worse, and the doc is actually trying to keep a close eye on me because I lost some weight between appointments, and because my symptoms have been getting worse. Guess what we think the problem is? Wait for it... Milk. >:(




So we think I'm lactose intolerant, which really stinks because in my house ice cream and milk each get their own food groups. I mean, the house has three women, so basically we eat salad, macaroni, ice cream, and chicken when we need protein. Its not exactly as if we keep all kinds of food in the house, because we don't eat that much. But now Brie has to branch out and she likes it so little that she is writing about it in angry third person. I mean, I made eggs for breakfast, I've been eating bananas like crazy... I tried to eat a greek gyro last night, but that didn't agree with me. From what I've read lots of EDSers will develop gastro problems, especially if they're on naproxen like me that tears up your stomach. 


The other thing that I just love? My mom made chili for dinner. Yeah. Chili. And I know that chili has nothing to do with lactose, but there is no way I'm going to be able to eat spicy chili... I hate the "find-food-that-Brie-can-actually-eat" game. I'll just throw together fruit salad... 


Oh! And something else to update about, I did my senior pictures. I'm not done with all of them yet, but I figured that I would put what I have done up here because I'm kind of proud of them. :) 

If you can believe it, these are all taken in places in my yard and my house so far... 

Most of my friends think this on is their favorite now. 

Well, thats all for now folks... 

the bendy rebels

Its been quite a while since I posted... I keep forgetting to get on here. 


Anyway, I briefly mentioned that camp I was going to do in my last post, and thats what I've been so busy doing for a while so I figured I'd talk about that for a minute. It lasted two weeks, and was hosted at Cincinnati Childrens' Hospital. There ended up being four people in my group. Me, another girl and two guys. We were the first co-ed group that they ever did, and we were also one of the oldest groups, between 13 and 18, so in other words, we were the most fun. :)


At first I was kind of cautious, because I have this really bad habit of coming on a little strong with people (I know, surprising, right??) and I was nervous that they wouldn't like me. In all honesty, part of the nerves came from the fact that the first day we didn't talk much, and everyone was pretty mellow, including me. Well, I was as mellow as I was going to get, lets just say that. I was still a little out there. 


We had pain management psychology first that day, which was odd because our parents all went back with us the first day, and my mom ended up talking quite loudly to the other girl's mom about some very personal problems... You should have seen my face. I was appalled. Then we had PT, which was exhausting. I'm pretty sure I learned about 40 muscles I didn't know I had that first day. Everything was hard to do, except for the ones that I had already been doing at home with my home exercise program. We also worked on making our playlist that day a little. Thats when our nicknames started to surface too, in the end we had Sunshine, Instigator, Babycakes, and Whiny Baby. Guess which one was me? Whiny Baby. Yup. I'm not bitter... Anyway. 


After a week of PT and Pain Psych, on Saturday we went to Kings Island and rented wheelchairs, because none of us are really supposed to walk around too much without taking breaks. We all took turns being rolled around the park, and Sunshine and the Instigator almost got me to ride a roller coaster. I didn't do it, but they definitely got me closer than I had been before... I almost got in line! Maybe they should have started calling me the scare-dy cat instead of the whiny baby... Anyway.


I guess the next eventful thing would be me getting kicked out of the Ronald McDonald house... I'm boycotting McDonalds. Their food is bad for me anyway. But as I was saying, they kicked me out. The only thing I've ever been kicked out of was my freshman english class, so I was pretty shocked. Honestly it was more for security purposes because I didn't have a background check done because we didn't know I would be staying there. They told us guests were fine, and even gave me a family lanyard, but you know. Protocol. So wanna know the worst part of all that?? When I got kicked out we were at the movies up towards my house so my mom just went ahead and drove me home. My meds were all at the Ronald McDonald house, so I missed three whole doses before I could get them back to me. It was insane. I felt horrible, and I couldn't eat anything because everything made me feel really sick which lead to quite a fiasco. (Heres the part you were waiting for - the teenage drama.) 


The girl in my group has POTS mix, so she has POTS symptoms with seizures and a couple of other associated symptoms. Anyway, remember that doc who told me I had something normal? The Neurogardiogenic Syncope? Yeah about that... Thats not what I have. I have POTS. Don't you love it when doctors make you feel crazy?? Its so great... The point here is on Monday morning after I had been without my meds for three doses, and couldn't eat anything because everything made me feel sick, I had a disautonomic episode. Clammy skin, hot sweats, cold sweats, dizziness, blurred vision, nausea... The list keeps going. I felt terrible. Ever since that doc told me that I had the normal teenager thing, I had been ignoring all of those symptoms because as I said, he did a really great job of making me feel like those symptoms were made up in my head or something. Heres where the drama comes in. So I'm ignoring this episode, and Babycakes (the one with POTS) is trying to get me to listen to her about what I need to do to get my body to calm down, and I basically let everything she says go in one ear and float right out of the other, because I don't want to hear it because I was convinced I didn't have what I have. So yeah. She ended up pretty heated with me, and I wasn't in too great shape either because the horse disease turned out to be a zebra after all. I'm tellin' ya - the zebra isn't our symbol because we're like zebras trying to keep our stripes, (I read that somewhere...) it's to remind every doctor that you ever see to think zebras when they hear hoofbeats. Guess I'll have to go in to get a second opinion sometime. 


We had a pretty crazy week. The strangest part of the whole thing is that I ended up becoming really great friends with everyone. I thought that it would be neat to be able to talk to people like me for a little bit, but I never anticipated how great it would be to hang out with people who have the same limitations that I do. It was pretty great... We could all talk about anything because we all understood eachother. IIts all pretty crazy. We started calling ourselves the Bendy Rebels, and we had teeshirts made. I'll have to put up some pics... :) Anyway. 


So those were the adventures of the Bendy Rebels. I'm sure I'll remember something else to babble about later. 


Caesura

updates

Well, I'm not going to complete that post I promised about my birthday, because Andrew broke up with me... and stuff. So everything that he did for me that day now means nothing to me, and that sucks. But anyway, in other news, I'm going to be participating in a camp for Ehlers kids next month... That will be cool. I guess. Anyway... 


Sorry. Everything seems so strange now that this all is happening. My family is in shambles because of some complicated stuff with my sister, and we're turning the house upside down, and then my best friend decides to leave me with nobody to talk to. I just don't feel comfortable talking to most people... People are petty and scary... and mean. They're really really mean most of the time, and I really don't want to expose myself to them usually... I always feel so nervous. 


So now, in all of this mess, I have nobody to talk to about it, except for you. My loyal readers, oh yeah. I don't have any of those either, because in the past four months, there have been no subscribers to my blog. 


So thats great. And stuff. 

zebra month

HAPPY ZEBRA MONTH EDSERS!! :) Its EDS awareness month, which (as my mother has pointed out several times in the past six days) is also my birth month. Go figure. Anyway, I'm still on crutches from my knee-episode, which is being drawn out longer than it should be because I hate walking on crutches and I hate lugging them around everywhere, and we also don't have a knee brace because I left it at my fathers house from the last time that I dislocated my knee-cap badly. So basically I'm doing everything that I shouldn't be doing to help it heal, like sitting here criss-cross-applesauce style (kindergarten flashback much??) writing this post. Which makes my knee hurt. I should probably stop that. 


Anyway, this whole thing has stressed me out quite a bit about prom, which is this coming Saturday, and whether I will be able to dance by then or not is still to be determined. Apparently my joints are more unstable than I thought because I keep waking up with my leg in all kinds of not-so-normal positions because of the floaty knee problem... Oh well. I'm just going to have to get used to all of this. 


The one plus about the whole prom thing is that I figured out what I'm going to do for my jewelry last night. My Grandpa, (mom's dad), sent me a card with a check that will cover my dress, and not only that, but he included two pictures, one of him at his 1955 prom, and one of my grandma at her 1960 prom, laminated. I thought the whole thing was really sweet because not only did I not expect any help with the cost of things, I found it very thoughtful of him to send me pictures and a card. It was really sweet. So last night, I was sitting going through some things because I needed to find the right album to put the pictures in, and I realized something I hadn't thought of. Normally, I make the jewelry that I wear to dances to match my dresses, but this year my dress is olive green with gold detail, and I don't wear gold jewelry, nor do I feel like buying gold wire. The only gold jewelry I have is the jewelry that my Grandma gave me out of her jewelry box when I was very small. I decided that I'm going to wear a ring that she gave me, with a necklace she gave me, and I'm going to extend a baby bracelet that she gave me as well. I want to give a little shout out to my Gaumi (Thats what my sister and I called her) for my prom this year since she won't be there that day to see me. I think she'd like that. 


How does this touching little story come full circle? Well, my Grandma was the one who gave EDS to my mom, who gave it to me. So at my prom, in EDS awareness month, I will be wearing the jewelry that my grandma gave me along with the genes she passed to me too. :)

Magic huh? The floating earrings?? :)

Caesura

everything...

Well today started off great, and then I pissed off everyone important to me. I have had a habit of doing that lately... I say the wrong things, and I say them even wrong-er than they are... I end up in a big mess. Like right now. I'm in a big mess. Which I hate. A lot.


My mom has this habit of treating my sister and I completely differently, and she even admits to it, because there are kind of extenuating circumstances surrounding each of us that require different methods of problem solving, but every once and a while it just strikes a chord somewhere inside my head wrong and I snap. I can't stand it sometimes, for various reasons, one of which being the fact that I want to be like everyone else but I can't. I can't be like everyone else and I never will be.


You know how I think that I have POTS? Well today when I got into my moms car after class at Miami I was suddenly overcome by a wave of faint-ness and slight nausea, accompanied by a kind of clammy hot sweat. The car was SCOLDING hot and she didn't have the AC on. I urned it on. She turned it off and snapped at me, I told her that changing temperatures drastically can trigger POTS and she told me to roll the window down. After that, even after getting home, I felt TERRIBLE for almost an hour and a half. She didn't understand at all when I needed her too.


And thats just the stuff that went wrong related to my medical problems. Don't get me started on the rest. >:(


Ugh.

Even playing with pictures couldn't fix this one, and everyone is still mad at me. I hate EDS. It's made everything so complicated and I can't do things that I used to be able to do and nobody close to me understands what I'm going through... Nobody.


caesura

music, crazy-faces, and pants

Well.. Today was interesting to say the least. I had English class at Miami, then my tax appointment (I officially owe the government 300 dollars because my dad is a jerk... long story.) and then I had this Jazz concert that I thought was going to be terrible that turned out to be pretty awesome. 

I didn't think that it was going to be good because the other singers with the group that I've been working with don't particularly like me, well... I thought that they didn't. They didn't like my style. The band did, and the director did, and everyone who listened to me did, but the rest of the singers just... didn't. Anyway, I thought that they were going to pick on me the way that they had been, but nobody said anything at the gig, and everyone was really relaxed etc. We were at a retirement home, and all the older couples got out onto the dance floor and danced their hearts out... :) It was adorable. I did videos of me singing the two songs right before the gig, so I thought that I'd upload them here since it is REALLY easy to do that on blogger. One of them is "Summertime", and the other is "Blue Skies". I didn't end up doing Blue Skies at the gig though... I really wanted to we just didn't end up having time. The other thing about the gig was that the entire time I had to use my cane... I would think that at a senior center there would be bunches of people with canes and walkers- but no. The EDS afflicted teenager was the only one in the entire place with a walking-aid. It was kind of cruel humor that in a room full of 80 year olds the 16 year old was the one that couldn't walk. In fact, most of the people in the room ended up dancing at some time in the evening. 

Anyway, It was really fun, and almost made up for that 300 dollars I have to give to the government... I said almost. 

I also did a bunch of pictures this morning, and I'm going to show them to you, whether you want me to or not. I'm really bummed that picnik is shutting down... I'm just now starting to learn all about how easy it makes everything, and not only that, but the version of PSE I have doesn't have the curves function... Anyway. Heres the pictures I did. 

This is my Harper puppy again... Thats his "I love you unconditionally and I'm sitting because when I sit you give me yummy things to eat."

"not just birds can fly"

Did I already tell you about how Andrew has this habit of making crazy faces at me when I have a camera in my hand? This is a great example... 

KITTY!!!

There are quite a few pictures of Andrew in here... Thats his arm. 

This is the ring that Andrew got me for our one year anniversary. 

Andrew actually took this picture - But I loved it so I had to edit it. It's my pants. 

These are kind of the things that are making my spring break not a total bust... The rest of it is kinda terrible to be honest. 

caesura