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

What Is Normal Anyway?

I really hate that term. "Normal." It seems like it means nothing these days. To people, to doctors, to individuals. It's just a bullshit word.

When I first found out that I had EDS, I was blown away with how 'abnormal' I was. I mean, it is normal for me to do the things I do. But it isn't normal for others. I once asked someone if their toes bent backward like mine do. There genius answer. "No. But every one is different. So who is to say that isn't just normal for you." Normal for me. Exactly! But isn't that part of the problem!? I mean, if it's normal for me, but not for the other healthy portion of the population, then that means I am are abnormal. Right?! And I don't think being abnormal is a bad thing. In fact, in this case, I think it's a very good thing. It's good because it means my symptoms and my pain and my EDS is real. It means there is something different that makes what I feel real.

But then when people diminish that by saying "Oh, well it's not abnormal, just not normal for me", I feel like it belittles my diagnosis. It belittles my pain. It belittles me.

If were the only time it's happened, I don't think it would bother me, but it isn't.

My cardiologist was telling me how healthy I am and yada yada during my stress test, that I felt the need to set him straight. I am NOT healthy. And that is a fact. I have a bunch of random health issues. But I chose to tell him about my EDS and Chiari. He didn't know what Chiari is, and that's fine because he is a cardiologist, not a neurologist or neurosurgeon. They need to know to different things. Cool. But when he challenged my EDS diagnosis. NOT COOL! He told me I need to beware of the diagnosis. Because one doctor will say you have something, and you get it in your head you do, and then he can't convince you they are wrong. RIGHT. Because you know all? Obviously not, because you don't know what Chiari is. So he then asks me if I can touch my thumb to my forearm (part of the Beighton Scale). So I answer in demonstration.

Obviously I can. Right. So I thought that would shut him up.
But it doesn't. He then tells me, "Any martial arts teacher can do that." Seriously?!? That doesn't mean it's NORMAL! AAAANNNNNDDDDD!!!!! Those people have to train to do it! They have to slowly push their ligaments past where they should go to slowly stretch them out. Like yoga instructors. But I don't. I just am this way.

See the difference? I do!

But he didn't. And it bothers me.

It bothers me when doctors diminish my 'abnormalness' and when normies diminish it. It just bothers me!

In this case, not being normal explains so much. It's like a piece of me. It's part of what I am. I have EDS and that makes me abnormal. And I'm okay with that. I'm glad it has a name. I'm glad there is an explanation for my pain. For everything. Getting that diagnosis explained sooooooooooo much!!!!! A lifetime of random things that never made sense. A lifetime of being different and not knowing why.

Anyone else feel like their abnormalness is important to them? Am I alone on this one? Comment and share below!

Don't forget! Only 10 more days for the EDS awareness shirt! Click HERE !!!

My Beighton Scale Test pictures as promised!

 
  
This is me. Completing the Beighton Scale. 9 out of 9. I didn't take pictures of each arm and leg because its hard to take the picture by myself. But now you get the idea and see a real person doing it rather than a picture.

He are some other random pictures of my 'abilities' and some of the effects of having EDS.

Toes bend backward

 

Atrophic scarring

Easy bruising

Raynaud's Pneumonia 

See? My hands turn purple and get ice cold

Any questions? Comment and I'll  answer them all for you. :)

What is a Zebra, Bendy, or Ehlers Danlos?

People with EDS (Ehlers Danlos Syndrome) sometimes refer to ourselves as EDSers, Bendys, or Zebras. Just like Myasthenia Gravis call themselves snowflakes. So how did EDS become Zebra? Because in medical school, doctors are taught "When you hear the sound of hooves, think horses, not zebras." A zebra is the term used to describe a rare condition or disease. So doctors are taught that the most common conditions are usually the explanation for patients symptoms. Which can be good advice. If you walk in to the doctors office with a cold, he shouldn't expect you have some rare cancer right off the bat. You look for a cold. But!!! Doctors eventually start to expect only common conditions, and forget that rare conditions/ diseases DO actually exist! This makes getting a diagnosis and treatment incredibly difficult for the patient!! So, EDSers have now become none as the medical "zebras".

Now, EDS is not a disorder on it's own, per se. It is actually a group of disorders. There are 6 different types of EDS. But we all just call it EDS unless speaking about our specific problem within our type.

The types of EDS:
   Hypermobility type
   Classical type
   Vascular type
   Kyphoscoliosis type
   Arthrochalasia type
   Dermatosparaxis type.

I have the classical type. Here is a really good link about the different types and what they all entail.
http://www.ednf.org/eds-types

EDS is diagnosed with the Beighton Scale. It is really like a flexibility test. There are 9 points and you must have 5 out of the 9. I scored 9/9. The only time I was ever disappointed to get a 100% on a test.

These are the requirements:
1. Forward flexion of the trunk with knees fully extended so that the palms of the hand rest flat* on the floor – one point
2. Hyperextension of the elbows beyond 10 degrees – one point for each elbow
3. Hyperextension of the knees beyond 10 degrees – one point for each knee
4. Passive apposition of the thumbs to the flexor aspect of the forearm – one point for each hand
5. Passive dorsiflexion of the little fingers beyond 90 degrees – one point for each hand


I remember the first time I read about EDS and thinking how weird it is that people couldn't do these things! I mean, for me, it's normal. If you have EDS, you're born with it. So I have always been able to do these things. They seem normal to me. I never thought about it. It isn't painful to do these things. I didn't have to train or stretch every day to learn to be able to do these things. I just can.

I know I mentioned it doesn't hurt to do these things in the picture. And honestly it doesn't. BUT!!!!!! That DOES NOT!!!! mean there is no pain for EDSers. I have chronic pain. And I have had chronic pain since I was in high school. It took me 8 years to even get a doctor to look at my back. They thought I was exaggerating or looking for attention, or looking for drugs. 8 Years!! And when they finally did look, it was already so damaged, that the only way to fix it now is to have surgery. Spinal surgery. At 25 years old.

Now, this obviously isn't everything. But I wanted to get this out there. Almost every doctor I have met has blown me off. I want others to know there are more like them. I want others to know about EDS!

They say EDS is rare. I don't think this is true. I think it's just rarely diagnosed.

I hope this reaches those that have EDS or think they may and are looking for answers or just someone that understands. I am here. And you are not alone.