neurocardiogenic syncope

Well everyone, I have big news. I don't have POTS, I have something NORMAL. Imagine that! Me with something Normal! Anyway, I have NCS, Neurocardiogenic Syncope, which basically means that the veins in my legs don't contract when I change position so that I don't lose the blood in my head. It is very common in the teenage years, and people get it all the time. It normally goes away in your early 20s, so I have to wait until then to see if they were right. 


It does explain everything though, down to the very last clammy feeling and headache, which is good, and its way less severe, which is also good. 


The bad thing is there really isn't much they can do for it except putting me on a steroid for my kidneys to work with them so that there is more water in my system, and making me drink lots of water and eat lots of salt. 


My only true worry is that maybe these are the first signs of POTS and they don't really know how to differentiate between early POTS and normal NCS, but I guess only time can tell, right? For now, I just have to take the pills he prescribed and try to get through it. :) 


In other news, my Andrew is going to college in the fall and I'm really proud of him, and he and I are both petrified. We're worried about our relationship, and about him being so far away, and about him being in a new place with different people... Its scarier than we thought it would be. I never thought that we would be having this college problem because we were both staying in this area, and now we aren't. Anyway, I have to go drink this gallon of water. :) 

This is a picture form the picnic that Andrew and I went on a couple days ago... I'll tell you all about that later. :) 


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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.


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work and a happy easter

Well, for starters yesterday I covered my co-worker's butt and worked 7 hours on my feet facepainting. It was totally exhausting, and my boss was lucky that I even got up in time... Ugh. I was though, proud of myself at the end of the day. I always like that feeling as the EDS exhaustion takes over. 


That meant that this morning, Easter, I was beyond sore even though I've been having a really good stretch of days. What this all means is this is going to be a really short post because I have to go to sleep early tonight that way I can get enough sleep before tomorrow... I have to start re-setting my brain for school on Tuesday. 


But I will put a picture on here for good measure... 

This is my favorite puppy Harper - He's all grown up now, but he's still my little buddy!!


Happy Easter everybody who reads this!! 


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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. 

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terrible?

You know that feeling you get when things go terribly wrong? And by that, I mean things that you planned. Intentionally. You planned them intentionally with the presupposition that they would go right and nothing would interfere. The feeling like you... like you swallowed acid and your body can't decide whether to throw up or to cry because it hurts. That's what I feel like right now, and thats why it sucks to be a teenager. 


Aside from feeling like the sky is falling, I realized today that maybe Naproxen is more useful in the pain department than I thought, specifically because I missed my dose this morning and by about 7 p.m. I was in acutely annoying pain. And by acutely annoying, I mean horrendous. I started using my canes, (which are awesome.) and I couldn't get up off of the floor and everything just got really ugly. So in all honesty maybe the Naproxen is doing something for the pain, its just not doing half enough for me to not be in pain. The thing is though, I didn't have the highest tolerance for pain when this mess started, and it hasn't really gotten better with time. So maybe I was just having a really bad day. I did a lot of walking, more than normal. We went to Staples and then to Wal-Mart, so I was out and about (with my canes). Ugh. 


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photography schtuff?

Well, today has been interesting. I slept way too long, did barely any homework, I'm sore as usual... You know. Just all that crappy EDS stuff. 


Well anyway, I made that watermark I was talking about doing. I kind of like it. "Gabrielle Caesura Photography" kind of has this ring to it, right?? I like it at least. The watermark thing itself needs a little more work, but that can be done sometime other than now. 

I went ahead and used some of my favorite pictures for the first ones with marks on them... :)

This one is my sister on her horse. :) Megan and Amber. 

This is the magnolia tree outside of Andrew's house. Well... Thats all I can really say for now. 

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farms and forests and fights - oh my!!

 I got that batch of pictures done from the farm that I was talking about. We went back into the woods on their property to take pictures. These are only a few, I didn't want to bore you with the whole set. :)  Some of these I don't like as much as others, but I thought they were all worth sharing. 

This is my favorite tree... 

As you can see, I played with the light, and sun spots a lot in this batch... I like the sun a lot, it adds dimension to artsy pictures. :)and in case you were wondering, yes, Andrew is holding a machete in this picture. 

I have this thing with lamp-posts the way I have a thing with doors - They're ALL SO DIFFERENT. So... I guess I have a thing for taking pictures of things that are diverse? Maybe? I shouldn't think this hard this late at night... 

This one didn't look right in color. :) It was too confused in color, and now its calmer. Sometimes things are really just black and white. 

Andrew thought this was a great picture, and I agreed with him. There's this place back in the woods at their place that has a really old trash pile. Its so old, that the things you find there aren't plastic trash its all glass. Everything is a glass bottle, jar, or a metal bottle cap. He took a bunch of the jars and scattered them here. 

The cutest little pink flowers are by the path... just thought I'd point that out... 

These last two are my favorite so I made them huge that way you get their full effect. They're so cool they need no explanatory captions. :)

So... aside from editing these and gong for a walk for the first time in months, I had a really terrible day. But now its bedtime for cripples so I have to go to sleep. I'll tell you aaaaalllllll about my terrible day in the morning. I'm sure you're all thrilled to read about it. :)


Seriously though, it was pretty bad. Just sayin'. You should be on the edge of your seat waiting... the suspense should be killing you... Okay I can't stand it. Bedtime can wait. 


Andrew and I had a fight. Yeah. I know. Imagine that, teenagers in a relationship fighting. Being honest, we didn't used to fight, but we do now, and everything kind of, well... hit the fan if you know what I mean. We were having a really great day and then promises got brought up and everyone got really tense so everything was misunderstood and it just got really ugly really fast. We both regret it, but that doesn't mean it didn't happen. And there were even some not-so-super-nice words exchanged. Yeah. Crazy right? I know. 


Anyway, there's why my day went to you-know-what after about four o'clock. 


Ugh. 


I feel better. Goodnight!! 


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a tidbit of thanks:

I am thankful that I wasn't too terribly limpy today, which meant that I got to take some pretty wicked pictures in Andrew's Grandparent's woods and that I will be posting them tomorrow because they're too cool to keep all to myself. :) I should come up with a watermark for the pictures I edit... 


In other news, I am STILL waiting for my canes. (I'm not terribly patient when it comes to things like snail-mail... too bad they can't sent it via wonka-vision like in the old Willy Wonka movie... That would be great. They could send it in a million little pieces and re-assemble them on my porch... Anyway.)


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pictures of life

Just so that everyone knows, there was NOT a storm here last night, it totally missed my town, which meant that I got very little sleep. Aside from that, I felt the need to redeem myself after that not-so-flattering picture I posted last night, so here are some pictures of me/my life/my family that are much more post-worthy.

My sister rides horses, and this is a mini-horse's nose! :) Its name is Piper. 

This is my mom and one of her dogs, Harper. He's my buddy. The other dogs don't like me much. 

This is my sister wearing a cup on her head... I don't know why. I just like the picture because she is very smiley. 

This is the sidewalk outside of my house. I like this picture too for some reason... 

A slightly more flattering picture of me... I painted that. :)

This is the picture that my sister and I call "close encounters of the third kind" because it looks like aliens are trying to pull my mom into their space ship.

When I try to take pictures of Andrew, he makes this face at me. It means "I swear if you point that camera at me one more time I will take it and throw it into the creek" in this specific scenario... we were hiking. Well, he was hiking and I was holding onto my walking stick for dear life. 

This is one of the other doggies, Baxter. He's the oldest. They're all Welsh Corgis, if anyone knows what that is. They're adorable doggies... 

I used to jump off of things. My friend Jane and I liked to go to the park by my house and take pictures of us jumping off of the picnic table. Never again... 

This is cave graffiti! I love graffiti. There were so many people who left their mark there... al the way back to the 1800s and before. Even indians made markings on the walls of ash cave. Its incredible. 

This is one of the water falls at Old Man's Cave in Hocking Hills State Park. I took this picture on the last tip we took there. I was exhausted by the end of our hike... Its probably one of the last times I'll ever hike there because its got basically 600 stairs no matter which way you tie the trails together. I'm going to miss it. I used to love hiking. 

Well, there it is. A bunch of random pictures from my random life. :) Enjoy!!

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stormy weather and memories

There is a huge storm headed my way - I remember a time when I would be outside right now, sitting and waiting for the rain. Of course, the predicted half dollar sized hail wouldn't be the best thing to go run around in, so maybe that wasn't the best thing to have come to mind... I do love storms though. Thunder helps me sleep. I don't know why, but it does. That and the raindrops on my windows. 

ANYWAY, I was messing around on my computer, and I just found this picture that I played with in photo-shop a while back. Its of me and Andrew for prom a last year - before any of this Ehlers-Danlos Syndrome nonsense. Everything was fine and we were happy teenagers. Honestly everything was great and we had no worries... except for his Type 1 Diabetes and heart problems that we keep under control. Other than that, we were pretty normal. And now both of us are just medical money pits... Looking at this picture brought a lot back though. Prom seems to be the poster child of high school - almost everyone goes. Everyone has their prom story. The reason they went, the reason they didn't, what they did at dinner, some embarrassing memory. Everybody. Me? My memory is being able to walk in un-sensible shoes and not having to worry about whether or not my pain meds worked or not. Thats what I remember. I remember NOT worrying about the chair I sat in at the restaurant we went to, and NOT thinking about the stairs I had to walk to go to the bathroom. I remember falling once, because my ankle rolled like it did all of the time. No cause for concern. And I remember being happy, and healthy. Or at least I thought I was healthy... I wasn't, it was just that nobody could see it yet. It was hiding, because thats what EDS does. It hides and then pops out and says "APRIL FOOLS - YOU'RE NOT WHAT YOU THINK YOU ARE!!!" Thats what it does. 


But I'm not bitter. Not at all. :) I'm okay with what I've got. I just have to rant about it sometimes. :)


And this face... Well lets just say I have a habit of getting caught making some not-so-flattering faces when people have cameras pointed at me... Its a curse. 

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ot, rolling backpacks, and fairy wings

My first occupational therapy appointment Friday went really well. My doc's name is Jenny, and she's great. I learned all kinds of things, and it was really... different. It was even different than I thought it was. It was really different. 


I got these exercises to do, because my upper body strength is literally half that of people my age. The average 16 year old has 57 lbs of grip strength, if I remember right, and mine was about 30. The average 16 year old has about 17 lbs of pinch strength (again, don't quote me on that, I think I remember though), and I have slightly over 10. I'm pretty weak. It doesn't really surprise me though, I've always been weaker than my friends. It literally took Jenny NO effort to push my arms down, and less to collapse my wrists. I'm REALLY hypermobile. She was kind of amazed at how loose my joints really are. 

I did though, get these really awesome finger splints. You see, my fingers collapse with the slightest bit of pressure put on them, and they have absolutely no muscle strength. They collapse when I type. Honestly. Its ridiculous. But anyway, she gave me these splints that keep the top joints in my fingers from bending backwards! It was great! 

Clunky Splints!!!

HALFWAY FUNCTIONAL FINGER!!!

They look clunky, but they have rings that do the same thing and I'm looking into getting them. They're expensive, but they work at least. It was really exciting for me to put my finger down on the table and not see it arch into a rainbow- thats what I call them. My "rainbow" fingers. Aside from that, I now have a four-square ball tat I use for exercises, and a wash cloth. I do some different things with each of them, but they're both for upper body strength. I won't get to do anything that helps my legs and my hips for another little while- actually, it will be April 25th. So I have about another month to wait. I'm not particularly excited about the wait, but thats okay. 

Rainbow Fingers!! (And no, thats not the furthest they go...)

Another big thing since my last post is my rolling backpack. I'm excited about that because not only is it big enough to fit all of my school stuff in it, but it's super-cute. :) I should take a picture... I really like it. It came in the mail two days ago, and I can't wait until the end of spring break- I get to take it to school with me and use it. 

Wicked Awesome Backpack!!!

Last but not least, I worked yesterday. As you can tell from my profile picture, I'm a facepainter. I wear fairy wings and make little kids smile. Its a great job. I love it. Its also exhausting which is why I've been sitting on my behind all day staring at this computer and doing homework. I've just been so exhausted. I woke up sore everywhere, and I felt like there were bruises on the bottoms of my feet. It was crazy- I slept until noon. I only worked for two hours even, and I basically chilled out after work. I just sat around, went to my boyfriends house where I sat on the couch watching movies on his new Dish TV subscription... His mom decided that cable was too expensive, and they get two months of free movie channels. I'm excited because in the two years that we've been together, he has never had internet and that makes playing Words with friends on my ipod at his house very difficult... anyway... I sat around. I wasn't even out late. I came home at 9 and went to bed. Which means that I effectively slept for 15 hours and was still sore. AM still sore. Its crazy... EDS sucks. 


Sorry about the quality of the pics in this post- I tool them last minute with my computer. :) Thats also why the JanSport logo on the backpack is backwards... Whoops!!


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