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?? :)

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pictures

Some awesome pictures... And by the way, Its hailing here like CRAZY. Its great. :)

knee-caps

Its been forever since I've posted, not that it matters since I have no followers. Anyway, Andrew and I are fighting, I have NCS, not POTS, I do have IBS, and I also happen to have a swollen knee-cap because this morning I was getting into the car to go into school late for the second time this week, and I tried to lift my rolling backpack up into the car, and then I heard a very loud terrible crunch and I was on the ground screaming. Thank the universe that I fell to the ground in a way that moved my knee-cap back to where it belonged, because I don't know what I would have done. Well, thats a lie. I would have done the same thing that I always do when that happens, move it back and try to get up. But the thing was this time I had already been having a terrible morning, and my mom was there with me, and I was just crying so hard, it was just... very different. It was as if the cries were primal, in a sense. I felt animal. Like an injured , helpless, animal. And considering I am human, and definitely not a monkey or anything, (although sometimes I wonder what it would be like...) I was very upset by the fact that I felt so helpless. I don't like being that way. I was sitting in the middle of the driveway, holding my knee for dear life, ugh. It was terrible. Long-ish story short, I have had a terrible day. :(


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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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