Vent?

Mcsuperawesome · 01-03-2009

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.

"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.

Chiara · 01-04-2009

Don't worry, don't worry...you're not alone...
I'm so sorry for everything..
Just Smile.

Mcsuperawesome · 01-04-2009

Thanks love.
It just gets so frustrating.

Mcsuperawesome · 01-04-2009

Thanks love.
It just gets so frustrating.

Johnna · 01-04-2009

Don't apologize for venting, it's one of the many reasons this website exists

I really do get where you're coming from... and I'm really sorry you're feeling like this right now. *hug*
I remember when I got diagnosed in 2006... I remember being happy that the disorder finally had a name... but feeling so... hopeless. Felt like I was being sentenced to life-long torture of being stretched on a wrack, and that no one gave a crap about it. It's frustrating. It's maddening. It's beyond upsetting. I promise you, you're not the only person that's feeling it... and you're not wrong in feeling it at all.
I know what you mean about parents thinking it's a joke. My mom also has EDS but even she will tell you she doesn't have symptoms nearly as severe as mine. She often acts like she gets the pain I'm going through... but the truth is she really kinda doesn't. She has no idea what my severity is like. The only person in my family that really gets it is my grandma. Also, until recently my father was always drunk and he treated my EDS like a cut that needed a bandaid.
As for pain meds. It took a long time to get doctors to listen. Some of my doctors still don't. Maybe you should try finding a Pain Clinic. The doctors there specialize in what you're going through and if you find the right doctor, you could get the right medication to help you.

You're not alone, Shannon. Even if you can't get people in real life to listen, we're here, if it helps at all.

(I know some days it doesn't. By the way, can I be the purple smiley???) Sometimes you just need to verbally vomit to feel better x.x

(by the way, I'm gonna move this to the venting section if I can figure out how)

Mcsuperawesome · 01-05-2009

ARGH.

My mother just told me.
That she thinks. I'm imagining pain.
THat I "want" pain so much that it's suddenly appearing in all sorts of places it wasnt before. My back for instance.

Well.
I've got about one year and two months until I turn 18.
Hopefully then.
My doctor will actually prescribe me something.
because.
guess what?

my mother isn't allowing me on anything. Again. She thinks I'm trying to score pain meds.
This isn't a phase.
I've been asking for pain meds for months. and months.

argh.
frustrated.

Mcsuperawesome · 01-05-2009

Quote:

Originally Posted by Johnna

D(I know some days it doesn't. By the way, can I be the purple smiley???)

Sure!
If I can figure out what you're talking about!

Johnna · 01-06-2009

Quote:

Originally Posted by Mcsuperawesome

Sure!
If I can figure out what you're talking about!

The smiley I used there.... with the smiley hugging all the other smilies! I wanna be the purple one! ^_^

And your mother is dead wrong. Everyone on this website and anyone with this disease will tell you that. (Though you already know it.) There's so much I want to say but I'm going to hold it back so I don't hurt anyone XD

The one thing I will say is this. You have been DIAGNOSED with EDS, correct? Could a decent doctor vouch for how much pain you are in, and what this disorder does to the human body? I don't mean to sound out of line for saying this, but couldn't denying an EDS sufferer pain medication be undue suffering that could be looked at as a case of child abuse or neglect? (Not saying your mother ABUSES you at all, just saying that what she's doing is cruel and might be looked at as such by a third party that might help you with your pain.) Forgive me if I'm out of line =/

By the way, if it would be okay, my mom would like to talk to your's.

s to you

<3 Johnna

xxBrittany · 01-07-2009

Definitely don't apologize for venting!
That is what we are here for!

If you ever need anything please don't hesitate to ask.. I'm here for you.

Just remember you are not alone in this!

Mcsuperawesome · 02-08-2009

F***

Once again.
Another doctor who doesn't know well, anything.
He told me to exercise....
Um. I do exercise. Two hours a freaking day.

and now.
He's sending me to a shrink.
To do meditation.

I've been doing meditation since i was eleven years old.

I just.
Honestly.
Want something to stop the aching. The sharp pains. the pounding.

I don't care if its pain meds or not.

(They don't want to put me on pain meds)

I just want something.

this is the third doctor appointment at which i burst out in tears.

I just.
need something.a
anything.