At some point when the time is right I will get a break.

I got a bit Of hope today I had some reach out from the emails I had been sending out and Mayo does help with costs with patients with costs and I would qualify if I was just medicare only.  But since I am not they said they can't help either because the state is responsible for my health care right now.  I AM SO FRUSTRATED!!!!!!!!!!!!!!   Also I cant get the hyperberic oxygen treatments without a prescription from my Doctor.. And they are weird about sending out for services so I don't know how to get around that.  I could possibly get into someplace in another state That state doesn't cover. Going to Jacksonville and just going under medicare.  I will call tomorrow about that.  The NIH responded today with a list of places to contact about an advocate so I will do that tomorrow.
I NEED People to share my story.  I know I have asked this like a 100 times but only a few of you share and god I love you for it.. But I NEED IT OUT THERE!!!  Word of mouth someone that knows someone that maybe has been through something similar or can  tell me how to navigate a system that is designed to work against you every step of the way.    Am not a person to give up and I will continue to FIGHT but I need some guidance.   PLEASE SHARE!!!! Weather I know you or not...my distonia is so rare and I need doctors that know.  I need my life back.  I want to help fight, help find a cure.  So all I want for Christmas from anyone reading this.... is just share my blog.  Share my story help me make this viral so myself and anyone struggling with a rare brain disorder knows they are not alone.. that there is Help!!  The New medication makes me exhausted but my speech is clear enough to video blog tonight so here it is.   (also this is after 2 different benzodiazepines and a muscle relaxer and this is STILL what my body does.)






FIGHT LIKE A GIRL FIND A TREATMENT!!! Go fund me!