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
Tuesday, July 31, 2012
Sunday, July 29, 2012
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...
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.
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
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
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