Ehlers-Danlos Syndrome & Me

I know this is not craft related, but it will occasionally impact this blog.  I've briefly mentioned in the past that I have some medical issues that have caused me to not publish posts on time.  Today I just want to share some information about the primary medical condition I have called Ehlers-Danlos Syndrome.

Some people would call me "double jointed", but in fact my body doesn't produce near enough collagen to keep my joints in place so my ligaments and other connective tissues are really stretchy.  Here's a good video that will show what I mean...

Here's another really informative video about Ehlers-Danlos Syndrome...

So now that you get an idea about what Ehlers-Danlos Syndrome is, I'll tell you a bit about my personal experience with EDS.

Pain is my biggest problem.  I have an intrathecal medication delivery pump implanted in my abdomen.  It's completely under the skin and I cannot access it so my doctor has to inject the new pain medication in my side every month.  My pump has been a life changer for me!  I used to be bedridden and am now semi-functional, though still can't do chores or drive, etc.

In addition to EDS, I also have Dysautonomia/Postural Orthostatic Tachycardia Syndrome, Bipolar Disorder with Depression, Osteoarthritis, and a Hiatal Hernia.  Those are just the things that have been diagnosed by doctors; it's suspected that I also have Fibromyalgia, regular arthritis, and Chronic Fatigue Syndrome.

I wanted to share this with everyone so that when those days come when I don't publish a post, you'll know that it's most likely because of a flare up of my EDS or other conditions.

Thanks so much for taking the time to read this post despite the lack of craft-related information!!  It means a lot to me that you've done so!!

Thanks for reading!! Until next time...