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, firstname.lastname@example.org, instagram, facebook, and twitter.