Tag: Ehlers-Danlos Syndrome

This lady sure is missing her books! Yes, I’m talking about myself. Just wanted to update you all on what’s been going on! I get a lot of questions and it’s easier to reply this way as I get worn out easily and don’t check my messages as often as I should!

I’ve been confined to bed for the most part. I’ve gone out of the house less than 10 times this year. Yes, a fourth of the year has gone by and I haven’t even left my home more than single digits. Yowza!!!

Good thing I love my cute home and my amazing family! ❤

I’ve been wearing a heart monitor for over 3 weeks now and have another week to go. I had an abnormal EKG and abnormal Echo, so I am waiting to see what this will produce. Fun times!

EDS (Ehlers-Danlos Syndrome) is known to have heart problems attached to it, so I’m not too surprised!

“Three heart problems associated with hypermobile Ehlers-Danlos syndromeinclude autonomic dysfunction, aortic root dilatation (enlargement of the blood vessel that distributes blood from the heart to the rest of the body), and mitral valve prolapse. About 1 in 3 people with hypermobile EDS have autonomic dysfunction.”

I also had some blood work done and we found a few concerns that we are looking into a bit further. (ie: more tests and more blood work)

I still can’t read hardly at all due to the strain on my eyes and head. It’s terribly sad, let me just tell you! I am hoping we can get to the bottom of this and I can get back on track! It’s seriously gone from a Disney trip and my awesome vacation to meet a lot of you lovelies in August to not even being able to stand and make a sandwich for myself! I can’t even shower very often – meaning that I have to use those hospital wipes and dry shampoo!!

Barf.

Double Barf.

I appreciate your prayers and concerns. Unfortunately, it’s extremely overwhelming right now to have much company. (Yes, even as much as I love you all and miss you!!)