A small glimpse of Ehlers Danlos Syndrome

So here I am, deciding to finally chase my dream and write a blog.  People have always told me that my life is so crazy and that I’ve been through so much crap, that I should just write it down.  I guess I am finally at a place where I have time and confidence to do just that.

So what will this blog be about?  Mostly how life with Ehlers Danlos Syndrome can be and how to navigate through it.  EDS for short, is a big part of my life and creeps into every aspect of it. I’ve had to be creative when doing certain things I enjoy so I wont injure myself.But I’ve also had to give up things I loved, which is very difficult.  I’ve had to have about 13 surgeries and counting, half related to EDS and the others related to breast cancer, reconstruction, and ex-plant surgery due to implant illness. Turns out I am allergic to silicon, this may or may not be related to EDS, but it isn’t fun.

Maybe you’ve never heard of EDS? I wouldn’t be surprised as it’s not very well known in the states.  Thankfully the more of us that speak up the more awareness will be brought to this genetic disease. In short, it’s a defect in our ligaments and collagen.  There’s 13 types of EDS with my type #3 being the most common. There’s few doctors around who feel confident in diagnosing us which makes it not only frustrating but painful and lonely to live with.  Often times we are told it’s all in our heads. We are very aware it is absolutely NOT all in our heads, it’s in our damn joints. EVERY joint seems to ache like you have the flu 24/7. There are days when we are “normal” and the pain is minimal, then their are days that even typing is painful.

I personally find the worst days to be cold damp days or before the rain comes. Thankfully I live in a warm environment here in So. Cal. but even our winters will bring me to tears.  There isn’t a cure and treatment is basically trying to manage he pain. When things start tearing because of the constant subluxations then surgery may be needed to tighten the joint up or clean up the tear.  We are basically an orthopedic surgeons wet dream.

Subluxations are a daily occurrence with those who have EDS. As a matter of fact, it can even happen in our sleep.  Using the wrong pillow or sometimes there’s nothing to pinpoint it, you’ll just wake up and it feels like fingers, shoulders or joints are partially dislocated.  There’s no point in going to a doctor for it since the chances are they won’t do anything and it will eventually go away on its own. For times like these, we brace ourselves, literally.

If you think you might have EDS, or know someone who might I suggest joining a Facebook group or just search for Ehlers Danlos Syndrome on the internet you’ll find a lot of information about this disease. Keep an eye out for a Zebra as that is our mascot. I couldn’t tell you why, but I am sure it will be explained on any one of the sites or group pages.

For now I should go, I’ve been writing for a bit longer then my fingers are happy with and the dull ache is starting to rise. I plan on writing at least every other day to help anyone who may be dealing with EDS personally or knows of someone who is. Or maybe somethings I write will bring a laugh which I hope for since they say that laughter is the best medicine.

This is not going to be a “woe is me” type of thing, there’s enough of that going around and it never has done me any good. Nope, this is about sharing reality and making connections. I have had the fortune of using my down time to research, learn, and grow. I am simply wanting to share the information and make connections.

Have a fabulous weekend and stay strong!

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