I have my first Occupational Therapy appointment in a few hours, and I'm a little nervous. I just don't know what to expect really. These things are all so new to me, and I just don't know what I can really do to change the way that things work in my body. Today, the problem was my shoulders, and yesterday it was my hips, and the day before that it was everything, and I just don't know what to do about school and life and I'm getting rather frustrated.
I hope they can provide me with some answers today... I can say that I still have some faith in doctors, they haven't failed me yet...
Even typing this is a strain on my arms. I just don't know what to do with that, you know? I don't know what to do about all of the problems that I have, I can't just put them into a box and hide them away, I have to deal with them day by day, but how do I do it? How do I deal with so many things all at the same time, without feeling overwhelmed.
Honestly, kudos to the people with more medical issues than me, because you have some serious stuff to handle... I don't know if I can take any more and some people have so much more to deal with than I do. Those of you out there with harder lives than I, are truly strong souls.
:) I got all serious there for a minute. Woah. Back to whining:
My right shoulder keeps getting this ghost pain like someone hit me but nobody hit me and I'm sitting here not moving anything but my fingers. So yeah.
Like I said, it was time to complain.
Caesura
Friday, March 30, 2012
Thursday, March 29, 2012
"wittle disabwed!"
Me: "My friends are getting me a cane."
Mom: "We should get you one too!"
Little Sister: "A wooden one that you could whittle on!!"
Mom: "Yeah! Because you're only a 'wittle disabwed' !!!!"
This was the dinner conversation in the Boltz/Brown household a few nights ago... I though it was kind of great. :)
Everybody has such a great attitude about my problems - It helps me to cope.
Mom: "We should get you one too!"
Little Sister: "A wooden one that you could whittle on!!"
Mom: "Yeah! Because you're only a 'wittle disabwed' !!!!"
This was the dinner conversation in the Boltz/Brown household a few nights ago... I though it was kind of great. :)
Everybody has such a great attitude about my problems - It helps me to cope.
Wednesday, March 28, 2012
future weight loss?
Well everyone, I've made a big decision. I'm going to lose weight.
I just don't know how to quite yet... The thing is, with Ehlers-Danlos being the way it is, most days I can barely walk. Aside from having really toned forearms from holding myself up on things for weeks I haven't been doing any exercise at all, and I won't until I start seeing Physical Therapists... But that would require the hospital actually having appointments open. So yeah.
That means my best bet is dieting. And I'm really terrible at that. And by really terrible, I mean diets that I try are ALWAYS colossal failures. And by colossal, I mean I stay on the diet for a week and then give up. Sounds pretty effective, right???
This isn't to say that I don't try, I just can't seem to stick with plans that deprive me of crackers and cereal. They're my lifeblood!!! Every "healthy" diet plan seems to do both of those things, so I just plain give up after I can't have my breakfast cereal and milk. I really do. It makes me sad to not have my favorite carbohydrate rich sugary wonderfull-ness packed mini-meals!
Anyway, I just felt the need to share with the world that I might maybe be trying to lose some weight.
My hip just did something loud and painful. Great. Its like a sign from a higher being that this weight loss thing is a phase that will last two days and then dissipate into me gorging on crackers and Ben & Jerry's because I failed again... I'll make sure to post if that happens because it would sure be unfortunate... That'll be a great way to make myself feel better! :)
Anyway, back to losing weight. I'm currently 150 lbs, so... my weight goal should be 125. Thats the healthy BMI indexed weight at my height, and maybe I can even build some muscle. But I really shouldn't get too optimistic... People like me don't do so great with traditional... uhh... walking? So much for cardio... And push ups? Lunges? As if. Uhh... Maybe if any fellow EDS'ers have experience in the area of weight loss they could help me out here a lil' bit? I'm kind of lost...
caesura
I just don't know how to quite yet... The thing is, with Ehlers-Danlos being the way it is, most days I can barely walk. Aside from having really toned forearms from holding myself up on things for weeks I haven't been doing any exercise at all, and I won't until I start seeing Physical Therapists... But that would require the hospital actually having appointments open. So yeah.
That means my best bet is dieting. And I'm really terrible at that. And by really terrible, I mean diets that I try are ALWAYS colossal failures. And by colossal, I mean I stay on the diet for a week and then give up. Sounds pretty effective, right???
This isn't to say that I don't try, I just can't seem to stick with plans that deprive me of crackers and cereal. They're my lifeblood!!! Every "healthy" diet plan seems to do both of those things, so I just plain give up after I can't have my breakfast cereal and milk. I really do. It makes me sad to not have my favorite carbohydrate rich sugary wonderfull-ness packed mini-meals!
Anyway, I just felt the need to share with the world that I might maybe be trying to lose some weight.
My hip just did something loud and painful. Great. Its like a sign from a higher being that this weight loss thing is a phase that will last two days and then dissipate into me gorging on crackers and Ben & Jerry's because I failed again... I'll make sure to post if that happens because it would sure be unfortunate... That'll be a great way to make myself feel better! :)
Anyway, back to losing weight. I'm currently 150 lbs, so... my weight goal should be 125. Thats the healthy BMI indexed weight at my height, and maybe I can even build some muscle. But I really shouldn't get too optimistic... People like me don't do so great with traditional... uhh... walking? So much for cardio... And push ups? Lunges? As if. Uhh... Maybe if any fellow EDS'ers have experience in the area of weight loss they could help me out here a lil' bit? I'm kind of lost...
caesura
Tuesday, March 27, 2012
pots...
Today I got up, limped to school, and sat in class staring blankly at my teachers paying NO attention. Then about halfway through my day, I realized that I felt clammy and shaky and TERRIBLE. So I decided that maybe I should check my heart rate. It was 110 bpm. Resting. Thats bad. I mean, I'm not a doctor or anything, but when a young woman's resting heart rate in a perfectly calm environment is 110 bpm I think thats a problem. I honestly felt like I was going to pass out. It wasn't a great feeling, as you can imagine... or not... I hope you can't relate to that feeling. Really I do. :)
That whole heart rate thing is related to something I haven't yet been diagnosed with- Postural Orthopedic Tachycardia Syndrome. The docs think I have it, but I haven't been diagnosed yet. Thats next... The acronym is "POTS". Kinda fun, right? POTS and EDS... and PMS... which all have an S at the end. Weird.
Anyway, yesterday I couldn't go to school and I missed another test in my AP Chemistry class. Thats the fourth one I've missed because of being sick, and I've missed even more than that in my other AP classes. It just gets complicated, because for example, yesterday I felt like I was made out of really poorly mixed Jello. It was terrible. You know how sometimes Jello will have like, a pocket of powder somewhere, or the heavy jello will sink to the bottom? Thats what I felt like. I felt like heavy over-dense-ified Jello. It was terrible...
Its hard to deal with slowly falling apart. I'm 16, and I can't even walk down a hallway at my school without three people looking at me funny and asking if I'm okay. People I don't even know, and they know that something is wrong, even though I look fine physically on the outside. There isn't a cast, or a boot, but I limp. I have decent looking legs, but I'm sometimes found in the hallway sitting on the floor because I can't walk any further and have to sit down. Its upsetting to me. Even on days that I walk fine I use the elevator for fear that the stairs will sublux my hip and I won't be able to walk the rest of the day.
My mom actually found this really great video about EDS that you can watch on Youtube, Its called Kristin Means - Life with EDS (Thats a link, Which I just learned how to do!!) And I really agree with some of what she has to say. There isn't a moment in my life where I don't think about Ehlers, and it is a drastic change to my lifestyle... VERY drastic. Not to mention the cool Ehlers finger braces she has. I got to get me some of those... :)
caesura
That whole heart rate thing is related to something I haven't yet been diagnosed with- Postural Orthopedic Tachycardia Syndrome. The docs think I have it, but I haven't been diagnosed yet. Thats next... The acronym is "POTS". Kinda fun, right? POTS and EDS... and PMS... which all have an S at the end. Weird.
Anyway, yesterday I couldn't go to school and I missed another test in my AP Chemistry class. Thats the fourth one I've missed because of being sick, and I've missed even more than that in my other AP classes. It just gets complicated, because for example, yesterday I felt like I was made out of really poorly mixed Jello. It was terrible. You know how sometimes Jello will have like, a pocket of powder somewhere, or the heavy jello will sink to the bottom? Thats what I felt like. I felt like heavy over-dense-ified Jello. It was terrible...
Its hard to deal with slowly falling apart. I'm 16, and I can't even walk down a hallway at my school without three people looking at me funny and asking if I'm okay. People I don't even know, and they know that something is wrong, even though I look fine physically on the outside. There isn't a cast, or a boot, but I limp. I have decent looking legs, but I'm sometimes found in the hallway sitting on the floor because I can't walk any further and have to sit down. Its upsetting to me. Even on days that I walk fine I use the elevator for fear that the stairs will sublux my hip and I won't be able to walk the rest of the day.
My mom actually found this really great video about EDS that you can watch on Youtube, Its called Kristin Means - Life with EDS (Thats a link, Which I just learned how to do!!) And I really agree with some of what she has to say. There isn't a moment in my life where I don't think about Ehlers, and it is a drastic change to my lifestyle... VERY drastic. Not to mention the cool Ehlers finger braces she has. I got to get me some of those... :)
caesura
Sunday, March 25, 2012
labels
Today was a lazy day for me - I had a paper to write and a lot of homework to get done, so I lounged around the house all day. Of course, that didn't keep Ehlers from butting in every once and a while. On my way to the bathroom I subluxed SOMETHING under my knee... I still don't know what it was, but man did it hurt. Honestly- have you ever tried to get out of a cross-legged position on the floor and realized that both of your hips were out of alignment? Its no fun. Trust me.
It really gets to me sometimes. You know that feeling you get when you can't decide whether something is in your head or not? That's the feeling I have all of the time. Its like I know that I'm in pain, and I know that I have a diagnosed problem, but sometimes I just think to myself "Come on, is it really that bad?" It is. It is really that bad, but when you live in a world with normal teenagers, and normal students who don't know what its like to fear pain with every step they take, sometimes you succumb to the feeling that maybe things aren't what you think they are, and maybe you are really normal even though there are fifteen doctors who would tell you otherwise. Maybe the pain is all in your head and you're just a clumsy, easily bruised, loose jointed, person. None of that "Diagnosis" crap, just a person.
Its so easy to become a label... Disabled. Crippled. Fragile. They're easy to "become". After a while, you start laughing about it, but really it still upsets you. You just don't know how to SAY that it upsets you.
My knee hurts. Anyway.
Its just difficult sometimes to get away from feeling like diagnosis's define me, because I know that I define me, but I am disabled, and I am fragile. Its not as if those things aren't true, because they are. So why is getting over that so difficult?
Caesura
It really gets to me sometimes. You know that feeling you get when you can't decide whether something is in your head or not? That's the feeling I have all of the time. Its like I know that I'm in pain, and I know that I have a diagnosed problem, but sometimes I just think to myself "Come on, is it really that bad?" It is. It is really that bad, but when you live in a world with normal teenagers, and normal students who don't know what its like to fear pain with every step they take, sometimes you succumb to the feeling that maybe things aren't what you think they are, and maybe you are really normal even though there are fifteen doctors who would tell you otherwise. Maybe the pain is all in your head and you're just a clumsy, easily bruised, loose jointed, person. None of that "Diagnosis" crap, just a person.
Its so easy to become a label... Disabled. Crippled. Fragile. They're easy to "become". After a while, you start laughing about it, but really it still upsets you. You just don't know how to SAY that it upsets you.
My knee hurts. Anyway.
Its just difficult sometimes to get away from feeling like diagnosis's define me, because I know that I define me, but I am disabled, and I am fragile. Its not as if those things aren't true, because they are. So why is getting over that so difficult?
Caesura
Thursday, March 22, 2012
first things first...
So... I've never really done this before? A friend of mine told me that it would probably be a good idea for me to get all of the things in my head out on paper... or in HTML code?
I should probably start at the beginning- I have Ehlers-Danlos Syndrome... And I bet you don't know what that means. Ehlers-Danlos syndrome is a connective tissue problem that effects the joints such as your knees and hips. It can be really painful, and annoying as I'll get out. >:( Its what I have though, so I might as well be positive, right? Thats most of the reason that I'm writing this. Well, partially that, and partially because I don't want to work on the Political science paper I have to have done in an hour... ANYway...
I thought it would be a good idea to do this for myself, and for everyone else who has to deal with me. I can write everything here, and nobody will be bothered by my ranting aloud: I won't need to! I also thought that since this will be a very short post, I should add some pictures of my life/random stuff.
This is some graffiti in my hometown... I love graffiti. Its kind of like people putting a little piece of their stories up for everyone to see.
I also have a slight obsession with doors... There are so many places that could go, and you have to take risks walking through them... blablabla...
This is part of my room... I mostly just really like the picture. The tree leaves tyou can see in the background are on my tree- thats the tree that I painted on my wall which I change the leaves for with the seasons. Its kind of awesome. It also has pink flowers on it in this picture I think... :)
Well... Thats all for now. I'll have something else equally boring to say later I'm sure!
Caesura
I should probably start at the beginning- I have Ehlers-Danlos Syndrome... And I bet you don't know what that means. Ehlers-Danlos syndrome is a connective tissue problem that effects the joints such as your knees and hips. It can be really painful, and annoying as I'll get out. >:( Its what I have though, so I might as well be positive, right? Thats most of the reason that I'm writing this. Well, partially that, and partially because I don't want to work on the Political science paper I have to have done in an hour... ANYway...
I thought it would be a good idea to do this for myself, and for everyone else who has to deal with me. I can write everything here, and nobody will be bothered by my ranting aloud: I won't need to! I also thought that since this will be a very short post, I should add some pictures of my life/random stuff.
This is part of my room... I mostly just really like the picture. The tree leaves tyou can see in the background are on my tree- thats the tree that I painted on my wall which I change the leaves for with the seasons. Its kind of awesome. It also has pink flowers on it in this picture I think... :)
Well... Thats all for now. I'll have something else equally boring to say later I'm sure!
Caesura
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