Mcsuperawesome
01-03-2009, 03:55 PM
First, let me apologize for venting before I do it. I'm sorry you all have to see the uncontrollable venting of Shannon.
But, I am SO sick and frustrated of this disease. I've only known about it for less than a year. Before, we all just thought I was being a wuss, a hypochondriac. We just thought I had joint problems, problems that could probably be fixed with surgery or physical therapy. And to be honest, I think I liked it better that way. At least then, we had hope. hope that somthing, anything could be done to "fix" it.
Last May I found out.
I felt like this is what they said.
:mad:
"You Ehlers Danlos Sydrome.
There's no cure. No treatment, no nothing."
You'll be sore, and stiff. You'll dislocate so much more than you do now. And oh! it'll get worse. you'll ache. You won't even want to move. You'll want to lay down and stay there forever, but wait. you'll still hurt when you lay down. You'll dislocate in your sleep, you'll have to make sure everything is in place before you stand up. You'll fall down stairs. You'll fall up stairs. Doctors won't want to give you pain meds. Parents will think it's a joke.(I feel like My mother does, I feel She thinks I'm just trying to score pain meds, but then, she advertises my disease to my family, like it's a competition, or something to be proud of.) My shoulder hurts, Typing this. My wrists hurt typing this. my fingers hurt tpying this. My back hurts from sitting here. my hips hurt from putting weight on them. My knees hurt from walking down the stairs. my ankles hurt from getting out of bed. Braces will help. Yes! Braces will help keep your joints in place. They will do nothing for the pain. they will hurt and ache, and your muscles will pulse. Your collar bones will dislocate too. That's always so much fun. Your shoulders will dislocarte decorating the christmas tree, getting dressed, getting a glass, hugging your mates, your family. You'll hate getting up from chairs. Your siblings won't even give a well, give a anything for that matter. (My siblings don't care. I feel like they think I'm just getting out of chores) Your back will begin to ache, no aparent reason. It just will. Tylenol? What a F-ing Joke! advil? Same.
Oh. Specialists? Good luck finding one! Doctors really don't know anymore than you do. Actually, most of them know less than you do.
Ooo.
This is a new one for me.
You get a cut. Think stitches will work? Nope. They'll rip right out of your skin.
Bruises? You'll be covered.
Bumping into anything and everything. You're legs will be black and blue.
Shoes. Cute shoes. They'll rub through your skin and leave scars on your feet. You'll scar a lot. easily. very easily.
Braces will break. They often do.
Insurence!!!!
That's great.
they'll \quit paying for physical therapy.
They might not even pay for braces. (I know they didn't want to pay for my ring braces, still haven't. That's why I don't have them)
Hmm.
I'll think of more.
But for now.
I'm going to let my mother read this.
so she can see exactly how frustrated I am.
Great.
Thanks for reading.
I feel like such a big complainer.:sad
But, I am SO sick and frustrated of this disease. I've only known about it for less than a year. Before, we all just thought I was being a wuss, a hypochondriac. We just thought I had joint problems, problems that could probably be fixed with surgery or physical therapy. And to be honest, I think I liked it better that way. At least then, we had hope. hope that somthing, anything could be done to "fix" it.
Last May I found out.
I felt like this is what they said.
:mad:
"You Ehlers Danlos Sydrome.
There's no cure. No treatment, no nothing."
You'll be sore, and stiff. You'll dislocate so much more than you do now. And oh! it'll get worse. you'll ache. You won't even want to move. You'll want to lay down and stay there forever, but wait. you'll still hurt when you lay down. You'll dislocate in your sleep, you'll have to make sure everything is in place before you stand up. You'll fall down stairs. You'll fall up stairs. Doctors won't want to give you pain meds. Parents will think it's a joke.(I feel like My mother does, I feel She thinks I'm just trying to score pain meds, but then, she advertises my disease to my family, like it's a competition, or something to be proud of.) My shoulder hurts, Typing this. My wrists hurt typing this. my fingers hurt tpying this. My back hurts from sitting here. my hips hurt from putting weight on them. My knees hurt from walking down the stairs. my ankles hurt from getting out of bed. Braces will help. Yes! Braces will help keep your joints in place. They will do nothing for the pain. they will hurt and ache, and your muscles will pulse. Your collar bones will dislocate too. That's always so much fun. Your shoulders will dislocarte decorating the christmas tree, getting dressed, getting a glass, hugging your mates, your family. You'll hate getting up from chairs. Your siblings won't even give a well, give a anything for that matter. (My siblings don't care. I feel like they think I'm just getting out of chores) Your back will begin to ache, no aparent reason. It just will. Tylenol? What a F-ing Joke! advil? Same.
Oh. Specialists? Good luck finding one! Doctors really don't know anymore than you do. Actually, most of them know less than you do.
Ooo.
This is a new one for me.
You get a cut. Think stitches will work? Nope. They'll rip right out of your skin.
Bruises? You'll be covered.
Bumping into anything and everything. You're legs will be black and blue.
Shoes. Cute shoes. They'll rub through your skin and leave scars on your feet. You'll scar a lot. easily. very easily.
Braces will break. They often do.
Insurence!!!!
That's great.
they'll \quit paying for physical therapy.
They might not even pay for braces. (I know they didn't want to pay for my ring braces, still haven't. That's why I don't have them)
Hmm.
I'll think of more.
But for now.
I'm going to let my mother read this.
so she can see exactly how frustrated I am.
Great.
Thanks for reading.
I feel like such a big complainer.:sad