I am super excited...

I feel SO HAPPY RIGHT NOW!!! dystonia medical research foundation shared my story on twitter!!!! THATS HUGE!!!!!!


https://twitter.com/dmrf


I am making an edit to this post.. I am still looking for someone to Help me advocate for my needs!  I Don't know how to fight with insurance or find doctors that specialize in certain things.. google only does so much. I also can't make calls all the time as my speech is not clear and theres not always someone around to help.  If you are aware of a company or people that do this for adults with disabilities PLEASE let me know.

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!

Fight like a girl!

I haven't updated in a few days its been a rough time I have had a total of 7 storms since leaving the ER.  It does seem to be slowing down in frequency.  They are scary to watch and they stress the ones I love out.  my back will arch completely and my head will pull as far back as it will go.  There is nothing to be done it just has to be waited out.  One of the medications they put me on makes me feel woozy though not sure what one.  I have found a place in phoenix  (this place) that does the Hyperberic Oxygen treatments for about 75$ a session I believe.  So far we have raised just that in our go fund me.. SO!  I am going to schedule a session this week see if its helpful! So THANK YOU!  I don't know who either of you are but this is going to at least help start hopefully something that works. I may still see if there is one cheaper but so far this is the cheapest I have found.  They suggest getting a few a week but that just cant happen.   Also this week I am going to make an appointment at Mayo. We will see what they say.   A friend suggested to me that if I make it and they think they can help they can maybe point me in the right direction of getting funding to go there. I am also stocking up on Epson salt with magnesium because it helps with the aching after the storm and well just every day muscles spasms of Dystonia.  I will take whatever help I can get and it does help even just a little.  I told Stephanie for Christmas I want the "fight like a girl, find a cure" Shirts for dystonia.  They are pretty cool and they will help raise awareness also! Anyway that all for today I think.. Have a wonderful day everyone, thanks for reading!! 

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