Ehlers-Danlos Sucks

This is a sub-blog about a girl dealing with Ehlers-Danlos Type 3. I hope to help others while helping myself, my family and my best friend in talking about and gathering all the information that I can about this jerk of a disease.

I have another blog: http://ihatebrainaneurysms.blogspot.com that I started in 2008. My dad was diagnosed with a super huge brain aneurysm which he fought for almost 2 years. He won the battle of the aneurysm, but died due to complications of his treatment following the aneurysm removal. It is his story, in my perspective.

I believe that he had undiagnosed EDS and this caused his aneurysm. I want to be heard and I want the medical community to take notice and to understand that this disease isn't black and white. There are a ton of gray areas. Just because we don't look sick or necessarily feel sick doesn't mean we aren't!!

I hope to keep you interested, I want to hear your stories and I also hope to make you laugh.

Welcome to my blog!!

Tuesday, December 28, 2010

HYPER: EDS SUCKS

I wanted to be a lot of things when I grew up; meteorologist, makeup artist, flight nurse, mortician, dog trainer. I never anticipated that none of these would ever come to fruition and that I would grow up to be hyper.

When I say 'hyper", I don't mean it in the typical definition: : high-strung, excitable.. The word hyper applies to me in this way; above : beyond : super- a : excessively b : excessive.


I have a genetic condition called, Ehlers-Danlos Syndrome Type 3 Hypermobile. (EDS for short).

Now, I don't want anyone to think that my dreams of becoming everything that I wanted to be never happened because of what I have. That's not the case. I never became any of those things because I was a lazy asshole for a long time. EDS does cause low energy, but I am a responsible enough person to admit that although I have been affected significantly with low energy throughout my life, I won't blame that for not becoming a meteorologist. Ill blame my math skills for that one.

Don't get me wrong, I do have a great job in the transportation field and I also own my own photography business, so I grew out of my lazy asshole phase in my late twenties. Now I am anything but lazy, and I enjoy the fruits of my labor, but it does come at an expense and this is what this blog is going to be about. My battle with EDS, my journey in researching it and maybe meeting some cool folks along the way.

There isn't really any fantastic sites on the internet that I have found that has told me anything I don't already know. Its very frustrating. This is a disease that isn't widely known about. If you are interested in learning about it, you can visit this link:  Learn about EDS Here.

I am going to wrap this first blog up for now and I will start posting about what led to my EDS diagnoses and some major events that has severely impacted my life because of it. If anything, maybe I will be able to help someone else.

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