Wednesday, December 31, 2014

Happy New Year!

Ah, new years. Where people go out and drink and stay up to watch the ball drop and kiss their spouse to start the new year.

Goodbye old year! Here is a start to fresh new me!

Am I right?

People ask "What's your new years resolution?"

I get it. We can all use some improvement.

But really, I don't know what to do anymore. But I'm a little depressed today, so maybe my funk is just taking the fun out of it.

I mean, other than quitting smoking (yes I know I'm a horrible horrible person because I smoke. I KNOW!)  I don't really have much on my "list".

There are things I'd love to; workout regularly, organize and declutter out house, do more stuff with the kids, work more in my garden, etc.

But with a chronic illness, I never what I will feel at any given time.

For instance, earlier today, I had planned to do stuff around the house but my blood pressure dropped. Can't do anything when that happens. So I layed on the couch all day watching a marathon of Gilmore Girls.

It was all I could do. So when I don't know what will happen with my body at any moment, it makes "resolutions" harder to make.

I mean, sure I can make them. But sticking to them... Well, that's a whole other thing entirely.

How many have made new years resolutions anyway? Maybe we can all try and push each other to keep them (when we are able anyway).

Sometimes, I know I could. But I allow my disease to be an excuse to not to do because changing is hard and sometimes I'm just too damn tired to care.

My 2014 wasn't that bad, but it wasn't a perfect year either. We lost our dog, but when on a vacation. My kids are healthy and in school. I made the President's list in school. It was a pretty good year.

How about all of you? How was your year? What would you like to change for next year? (And it can't be a random cure for your illness unless you are actually a scientist and already researching and close to finding said cure). Something YOU can actually change for you and your life. Please share below!!

Have a great night! Be safe! And may you have a blessed new year!

I'll be sitting on my couch (actually I'll probably be sleeping) this new years. :) 

Sunday, December 28, 2014

I Need A Vacation

We just took our first vacation. Well, our first real family vacation. In the sense that we didn't travel to a family members house and stay with them. 

We went to Stone Mountain Ga and stayed in a hotel and everything. It was awesome.

The hotel was shitty, but it kept us warm and gave us a place to sleep and shower, so it worked. They also offered breakfast every morning. So that was good. Saved us money on that meal every day.

We went to Stone Mountain Park and got the 2 day pass to go through Snow Mountain, and the Stone Mountain Christmas park. We walked around A LOT!! And with a 3 and 5 year old. It was exhausting. 

We just got home at like 1 in the morning on Saturday and I'm still recovering.

Isn't that funny... You go on vacation and you need another one when you get back home.

Unpacking was worse than the packing was. And my body is soooooo sore from all the activities we did. We were going like non-stop. For 5 days straight! 

Having EDS and going on a 5 day trip packed filled with activities was probably not the smartest thing to do. Plus sitting in the car for as long as we did to get there and then back. I'm a frickin mess now.

My chiari is flaring up, my body is screaming at me. It will probably take me another week to get back to where I was before. 

But it was worth it. Some things are worth the pain and all the shit that come with having a chronic illness. And this was definitely one of them.

We all had a blast and my kids were soooo happy spending so much time us. My boyfriend works a lot normally, so we don't really get to spend much time with him. It was wonderful. 

Although I'm paying for it, and will be for awhile longer, I wouldn't take it back for a second.

But I wish I could take my own little vacation right now and get away from all of them so I can sleep for days. 

What things have you done that you had to pay for later? Was it worth it for you? What about a time it wasn't worth it after? Share your experience by commenting below!! :)

Friday, December 19, 2014

You're Such A Drama Queen


What was that? Your arm was severed off? Stop over reacting. You do have another one! Geez. 

So selfish for wanting two arms... I know people like that too... I mean, mostly because I'm one of them!

I hate that when I say anything to anyone that DOESN'T have EDS, they look at me like I'm such a drama queen and just over reacting. 

Me: "Ouch! My finger just dislocated! *Pop* Okay, back in." 
Someone else: "Ugh! Seriously?! You're finger did not just dislocate!" 

Right... Because all my doctors are wrong and you know all.... Sorry all-wise-one.

I just don't know what I need to do to be taken seriously! Even my doctors have totally dismissed me when I've told them. CORRECTION, SHOWED THEM!! things and they still just look at me like I'm crazy for complaining my joints fall out of place. 

Like I'm this insane person and shouldn't be complaining about such trivial things. As if I ran to the ED for a paper cut or something.

What is it?! Because I'm a young adult woman? Probably.. And I don't really know why. I mean... Kids get sick and everyone says, "Aw. Poor thing." Old people get sick and people feel bad because they are old.. But young-ish adults and middle aged people... Well.. We are just drug seeking attention whores. 

Why?! I'm pretty sure everyone gets sick! Why the hell is it so hard to be taken seriously?! 

I could see it now. I walk into the ED because my stomach explodes. They put my insides back in and put a bandaid (which I'm allergic to) over the gaping whole and send me home. But don't forget the $45,000 bill for the bandaid.

I am 25. Not a child anymore but not old enough to remember the segregation either. So I guess that means I can never be ill or have problems without being called a drama queen. 

Who makes up stuff like this?!! Why would I want to seek medical attention if there wasn't a problem?! 

Oh, I know.. There is a disease about that. I KNOW!! 

BUT!!! If they thought I was just crazy and attention seeking and had Munchausen's, then why aren't they trying to treat that?! Anyone else wonder this shit?! 

Anyone else just a drama queen, drug seeking, over reacting child? Share your stories below!! :)

Wednesday, December 17, 2014

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?





Wednesday, December 10, 2014

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




Monday, December 8, 2014

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!