Hey guys, here is that post I was telling you about! If you haven’t read the amazing article “Social Media – A Lifeline For Patients With Rare Diseases” by Dr. Judy Stone I seriously recommend you do. http://www.forbes.com/sites/judystone/2015/03/02/social-media-a-lifeline-for-patients-with-rare-diseases/
And not just because yours truly is mentioned in it. I can’t express how honored I am to have my poem in that article.
This article really speaks to the need for more awareness on social media. A group I came across recently is Chronic Alliance. It was started by teen Sean Early who has Ehlers Danlos Syndrome (EDS). He created a very unique group. The Facebook page offers surveys for patients on their experiences with medications, doctors, etc. The most unique part is the way it allows people to connect. You are able to share writing, artwork, or music – whatever you are most passionate about. As a writer I love this. Without writing I would not be the person I am today and I would not be able to handle my illness the way I do. Writing has become my vice. Seeing other peoples’ work – whether it is writing like mine or artwork, or music – is inspiring.
I really recommend you guys check out Chronic Alliance. It just launched. Hopefully you all find it as awesome as I have.
To hopefully inspire some posts I’m posting a poem I wrote when I was going through a really rough time, but I got through and you all will too. So don’t look at this as depressing, but instead hopeful because I was able to overcome these feelings.
Looking back now it’s all fading out
All I remember is the echo of silence
Calling me forward begging me closer
A dangerous dance I’ll never get out of
It’s all bottled up and tucked away
Kept in a safe place, the light you stole from me
You keep drawing me closer like a siren’s song
Know you’re pulling me down and there’s no coming out