I'm Angry With You...

I'm angry that you're broken.
That you're falling apart more each day.
That you need pills to survive.
That you don't work the way you should.

I'm angry that I can't control you.
Not the processes you can't perform.
Not the processes you can perform.
You are stupid and broken.

I'm angry that you won't get better.
That you can't get better.
That I can do nothing
But watch you break apart every day.

I'm angry that you're stubborn.
That you haven't just given up already.
I'm angry that I'm trapped in you.
That you keep pushing on when I just want to give up.

I'm angry that I can't away from you.
No matter how much I wish to
I'm stuck. And you smile.
I'm angry that you try so hard.

I'm tired and I want to be done.
And I'm angry that you won't give in.
Just when I think enough will finally be enough,
You come fighting full force.

I'm angry with you.
But mostly,
I'm scared for you.
Because in you, there is me.
And without you,
As broken as you are,
Where would I be?

I Am Gumby's Secret Love Child

That's right. Gumby has a secret love child and it's me! I'm exposing Gumby and his dirty sexual escapades! 

Really though, I may as well have been. With Ehlers Danlos comes my extreme flexibility. To the point I don't even know what's considered normal. AND when I wear braces to keep from hyper--extending my joints, I really don't understand how people live with such low range of motion. 

I mean. I guess it's normal range of motion but mine is normally soooooooooooo much more, it feels restrictive to me. Like, how do normal people carry more than two things at once?! There fingers don't stretch out sideways! It just blows my mind how they are able to get anything done, ever.

I was looking up normal range of motion and found some interesting things. Did you know normal people can't bend their wrists more than 60 degrees in either direction!???!!! That is crazy to me!! I must be honest. I just don't get it! I've never been "normal", especially in that area. 

Look at this shit! 

Normal range of motion.

And then me.....

And that's just one joint! 

I may be all Gumby and pliable. But I really don't know how else to do things. It's almost a blessing and curse. A double edged sword if you will. 

That is my left arm by the way. 

It's not just being super bendy though. Obviously. There are soooooooo many aspects to EDS it's fricken bananas. Mmmm. Bananas.

My EDS has affected my heart, skin, joints, tendons, eyes, muscles, teeth, mouth, GI track, pancreas, brain, bladder, and more. It is seriously a systemic disorder. 

And it sucks. But sometimes, it is really cool. Like when I'm all alone and my back itches. I can reach the whole with ease. Picture it now... "Oh. My arm doesn't want to bend that way? I'll just dislocate it. Ah, there we go." 

Now, not everyone with EDS will be affected the same way. For some, the dislocations are incredibly painful. Some cannot dislocate on command. I can. And usually, they are not too painful. But, they still can be. Especially if they are random or accidental.

I still can't get over the normal range of motion. How do those freaks even get around!??! 

And other bendies out there that just don't understand the normal range of motion??!! I mean, really, HOW do normies live!? 

P.S. It has been brought to my attention that my background on the left of my page looks like an erect penis. Has anyone thought or noticed this?! And why was it not brought to my attention. 

Enjoy. You cannot unsee what you are about to see. 0_o

Are You Defined By Your Disease?

Ah. The age-old question... Well, maybe not age-old. But whatever. 

I have heard many people answer this question with, "No. I have EDS but EDS doesn't have me!" That is fantastic. Right?! So optimistic and such. 

But I totally disagree.... I know what you're all thinking.. What do you mean!!??? How could you NOT feel that way?! 

I feel like I have EDS and it does have me! I know it sounds crazy. Why would you want your illness to define you? Why???? Because it DOES define me!

It isn't all of me. But it is a huge part of me. I am sick. Just like I have brown hair, and brown eye. Just like I'm intelligent and sarcastic and creative. Just like I am a women and mother. 

I am defined by my illness. And that is perfectly fine with me! I don't see my illness as a bad thing. Just a part of me. More like a weird quirk or something. 

Being sick, chronically sick, means I can't just back away from it. I can't get away. And it doesn't just affect me. It affects everyone I know and love. It isn't something can be ignored or something I can beat. It's something I have to work on everyday and sometimes, something I really struggle with. 

Saying it EDS or Chiari, or any of my other diagnoses doesn't have me is like denying how important and severe they are. It's like minimizing the issue. 

And why minimize it?! It's not going anywhere!

I AM defined by my illness. But that doesn't always mean that it's a bad thing.

It is actually pretty liberating. I LOVE talking about EDS and spreading awareness. I LOVE talking about the things I struggle doing because it's REAL! 

I am not the kind of person to sugar coat or lie to make someone else feel better. I like the kind of people that can tell me things no one else will.

Like when I was pregnant, people tell you all the good stuff about being a mom. But what they don't tell you is that sometimes it just sucks and its hard and you'll lock yourself in the bathroom and cry because you just don't know what you're doing and you just know you're ruining your kids lives.  

People don't share with the bad stuff. Like it makes it less real.. But then, when you feel those things, you think you're defective because "no one said it would be like this! I must be a terrible mom!" 

But everyone struggles. It's hard. And we SHOULD talk about those things! They are important!!!

I think it is important for everyone to know our struggles as chronically ill people. They take things for granted that we can't anymore. 

I have been given a lot from being sick. I learned things about the body that I never cared about before. I don't take my life for granted. I don't take my good days for granted. The times I am able to get up and actually do something, I DO!!! Because who knows when I'll get another chance to do it?! 

I am blessed because I'm sick. I fully embrace it. And I think everyone should!

My illness does define me! I am sick and I am proud to scream it from the rooftops!

Are you defined by your illness? Comment below!