Hello my lovelies!

I share a lot of my life with my readers. Good, bad, ugly, I try to give myself and my journey through Chiari and Ehlers-Danlos with you. My heart and soul goes into all the work I do surrounding lifewithchiari.com, hopesoup.me, the foundation, counseling those of you that need it, advocating for patient rights  and educating the general public about what we go though on a daily basis.

In spite of all of this, I struggle everyday. It isn’t the pain, limitations, side effects, or complications of the conditions, but the immense loneliness and profound sadness of the situation these conditions have caused. ¬†There are times I get tired of having to constantly explain myself, of having to make excuses of why I can’t do things, having friends and family abandon me because the don’t understand that I WILL NEVER GET BETTER. THERE IS NO CURE. IT WILL ONLY CONTINUE TO GET WORSE.

From talking to many of you, I know I am not the only one working through these types of feelings. Chiari and EDS suck, but they have managed to give me something very precious… all of you. A wonderful, beautiful community of people, that without these conditions I would have never gotten the chance to know. If no on has told you lately, YOU MATTER!

I am also working though some personal issues right now, and have not been able to write as much as I would like, but you can always reach out to me anytime through the blog, lifewithchiari@yahoo.com, instagram, facebook, and twitter.