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! 

A Few Things...

This post is just gonna be all filled with a bunch of stuff. So get ready for a fun ride with my ADHD brain. :)

First off!!! I am excited to announce that my first guest blog went live on Wednesday!! You can find it at Riot Against...

I am incredibly excited to be apart of the Riot Against... team and writing with them. I am honored that they thought I would be a good fit for their team and that I get to join them on sharing our experiences, journey's, and awareness for our conditions. I am truly blessed and honored.

Alrighty! Moving along... Next stop, Thanksgiving!

I had a WONDERFUL Thanksgiving!!!! For those that celebrate the most amazing gluttonous holiday of all time, I hope you all enjoyed it too. :) I had lots of family and great food! I made my homemade pierogis (which takes roughly 4 hours to make... So I'm pretty much doing a lot of nothing today to recover). My family even did the dishes! I didn't even ask them to! It was amazing. They said because I hosted, they would do the clean up. Which let me tell you... I super appreciated! If they hadn't done it, it would still probably be a huge mess today.. And I honestly don't even know if I would get around to cleaning it up. So YAY!! It's done, and it was great. :) We fried our turkey and it was DELICIOUS!!

I ALSO wanted to say that the Ehlers Danlos Awareness shirts and hoodies have been sent to the printer and should be arriving with you all soon!!! I'm so blown away that you all like my design! It is seriously super awesome to see people wearing a shirt/ hoodie that I designed. Thank you all for your support! I cannot express enough how honored I am. You make me smile. :)

OOOHHHHHH!!! I was recently contacted via facebook from a fellow zebra... And she told me how much she loved my blog. It seriously made my day. She was soo sweet (and obviously knows good writing when she reads it) and it really made me feel like I was making a difference. She said her whole family reads it, and she is able to relate. It also shows her family that she isn't just crazy because I go through this stuff too.

I started this blog in hopes of relating to others that may feel alone, AND so that I don't feel so alone. Knowing other people experience the same weird shit really just makes it easier to go through the weird shit..

Anyway.. I know this post is kind of just a bunch of points. But I promise, I have a normal post in my mind I will write out later..

Gotta get my littles outside and burn off some energy before make my head explode!! That would be a huge mess and "Ain't nobody got time for that."

Makes me laugh every single time...

What The Hell Happened?!

I know, I know. I'm sorry I disappeared. I have been terribly busy and on days I wasn't as much, my hands hurt so badly it became too difficult to type.

So!! Here I am! Alive and semi well.

How are all of you today?

I think what I'm going to start doing is making video posts on days I'm not feeling well. Let me know what you guys think.. Just keep in mind, if I'm not feeling well, I will probably look like shit. So bear with me. Lol.

I've been thinking lately a lot about how people treat you differently when you're sick. I mean, in a way I want people to, but at the same time, I really hate it!!

I WANT people to understand that I can't do everything I use to be able to do.. But I don't want to babied. I want people to understand that if I have to cancel plans last minute, it's not because I'm just being a bitch. But I don't want them to stop inviting me. I want to be respected. No forgotten or mothered. I don't need my 'friends' telling me, "Are you allowed to do that?!" or "Maybe you should just do_____ (fill in the blank)." I am a big girl. Sometimes I want to push past my limits because I need to. Sometimes I want to eat that super greasy pizza that is gonna screw with my pancreas. Sometimes, I just don't give a damn. Sometimes I need to feel ALIVE!!

But that is MY decision. Whether I do XYZ or not. It's my decision to make! No one elses. And it drives me crazy when others try and 'protect' me from myself.

Does this happen to anyone else?!

I mean I appreciate the concern, but I really don't want to be mothered.

I think it's that people just don't know how to treat me anymore. Now that I'm sick.. They don't know what to say. They see a cane some days. Others, no cane. They see me wearing my rings one day and maybe another day they don't. (Usually because I have a stupid brain and forget things..) But regardless, they don't know how to react to me anymore. I become my disease. And what I do and wear and walk with is noticed more than I am.

I've lost pretty much everyone I knew after my kids and after I started getting really sick. I have my best friend. And seriously, if she or I weren't sick... We probably never would have made it this far. Being sick together gives us both an understanding of each other that no one else can understand.

And I love her to bits. But it kind of really pisses me off that I can't relate to other people anymore. Not unless they are sick too. Because all they see is my disease. They can't look past the cane to see me as a person. They don't know what to say, so they don't say anything. Or even worse, they say the wrong thing. And you can't be friends with someone that never talks to you or says really stupid shit to you.

This has been my experience anyway. If it weren't for social media and groups for people like me.... I'd probably never to speak to anyone. I've met lots of great people through groups online.

I had one really great friend before I got sick... And now, she is just "too busy." Which I find hard to believe because she wasn't "too busy" for the two years before... And now we never talk anymore. I try and get no response. The only way I know she is even alive is because she still sends me cards for holidays. That is her only communication with me.

It makes me sad.

I hope all of you have no idea what I'm talking about and have never experienced this. I hope you are all as well as well is for you.

Keep stable my peeps!

What the What?

I am 25 years old, and have two beautiful baby girls (ages 5 and 2). I am an at home mom and a student. I have Ehlers Danlos Syndrome. I feel like saying it that way makes it all AA meeting ish. Oh well. That is the reality of it! So What the heck is Ehlers Danlos you ask? No worries. I have an answer. EDS (Ehlers Danlos Syndrome) is a genetic connective tissue disorder. Connective tissue?! Ya, that's all the collagen in your body. Collagen makes up all your organs, blood vessels, skin, ligaments, etc. It's really the 'glue' that holds your body together. And mine is faulty. This can lead to issues anywhere there is collagen. For example, my ligaments are super lax (too stretchy) so my joints randomly dislocate or sublax (partial dislocation). Awesome, right?! Not really. My body is literally falling apart. But no need to go all Debbie Downer right now! This is just my intro!!! I'll get to all that depressing shit another day when I am angry about it. Right now, I am okay with it. Even though my shoulder feels like its on fire right now as I type this.

So.. Not only do I have EDS, I also have a few other disorders that are caused by my EDS. I have many herniated disks in my spine, spinal osteoporosis, craniocervical instability, Chiari Malformation (skull shaped wrong and brain is falling out of head into brain stem), adult developed scoliosis, EPI (exocrine pancreatic insufficiency), and a few other issues that have yet to be solved. 

So, there is me in a condensed form. Hope you enjoy reading about my stupid body and my life. :)