I will take back my life!!

So I need to start with this... THANK YOU!  A select few of you have been there fighting right along with me you share it and your support me and check in. Some of you drive me around some of you surprise me in ways  I just cant thank you enough for.  That's to those people I know helping me fight and to those that I don't know thank you for your for being so kind.  In my life I WILL MAKE SURE that this Disorder is KNOWN. There will be Awareness even if I have to keep flooding your social media until everyone shares it. (or de-friends me) Today I woke up and I didn't have much fight, but as I got up and saw the things people were saying, as my gf was sending me anything she could find in research. I realized I get through whatever it is with the people that have enough love to carry me through the roughest days.

The medication is Making me sick, well that's when I am awake.  It is stealing my independence, but its just temporary.  I still got a lot of fight left in me.  The insurance of course denied the trial med. The trail coordinators are appealing it.  So that's good. If its denied again then we will apply for another program that covers 95% of the medication for the first year.  this is just a trail medication they have no idea if it will work and it will only calm the myoclonus. ANY help is better than none though.  Starting small is better then not starting at all.  We are still fighting for Mayo Clinic.

YOU CAN HELP.  Here is how - SHARE MY STORY. on twitter on facebook on instagram. tell it to your friends, your family, tell them to share my story.  I want my story to be viral.  I wan't people to know while my case is EXTREMELY rare helping me could help Many.

A big thank you again to everyone that has done something this far every gesture no matter how big or small is a giant leap for me.  I am blessed and I continue to believe I am blessed because of the people I have been given in my life to see me though the hard times.

One day not far off I will be well enough to be fostering tiny babies and teaching them how to be strong.. but for now, I have my battle to conquer. Watch out world... :) "I may only have one match but I can make an explosion"

Also this is something to note.  Though I prefer not to be moved because I am afraid of falling.  People describe it as being similar to a grand mal seizure except that you are awake and aware.

HELP ME FIGHT - Go Fund me

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!! 

Go Fund Me Because DYSTONIA SUCKS!

Okay new plan!!

So Yesterday sucked for anyone that is on my Facebook you for sure know this.
Yesterday I ended up back in the ER because it just became too much.  Too much pain too many spasms it hurt every time I breathed in deep.  They gave me three injections of Valium and Benadryl before it calmed down.  I called my Doctor before going he called back about an hour after I had already been there. (well his nurse did) They said they weren't sure what to do just to see the ER Neuro and let them treat accordingly.  I wish it was more productive like I go to the hospital where my doctor works but no one from his team can come down to treat me?! Not to mention they tell me they aren't sure what to do so just to let the ER doctors treat?! the ER know less than you do sir for sure!  SO FRUSTRATING.  They never even sent anyone from the on call neuro to see me just the attending.  So I got home and maybe an hour in I start having another storm.  To add salt to the wound they sent me home with paper work listing Generalized dystonia- Myoclonus dystonia symptoms, and complications.  I was having ALL the complications.  When they say report back to the ER if any of the following occur because they can possibly be life threatening, but they are occurring and they send you home anyway its just so defeating.  Like They don't get it at all.  My vital organs are STRESSED OUT.  My body it telling me in every way possible.  They need room to breathe.  Then the nurse from my doctor called me tonight at 6 says the doctor just read my notes from the ER they are adding two more muscle relaxers on to my list of medications.  How am I supposed to function? I am so... I don't even know what the word is.  Clonazepam, Diazepam, and tizanidine.  This will now be my normal regimen.  BUT its fine and here is why.  I am its not  fine... but I have a back up plan.. I will do this but I am also going to just make an appointment with Mayo and have a consultation and pay for it out of pocket.  See what they say,  If they will be helpful I will apply for medical grants and do whatever it takes to get there.  I am also going to look into this HYPERBARIC OXYGEN TANKS Because all the research says it does amazing things for people with brain disorders.  I also wrote a letter to the NIH.  If anyone has any more idea on what to try or who to reach out to don't hesitate to comment.  I will look into any and all leads at this point.  

Edit: I also have forgotten to mention as it has been a whirlwind of things around here that the doctors have also decided I do have a second dystonia as well .  Generalized.   I guess this is just very rare because myoclonus is usually a set of muscles only.  But I have dystonia all over my body as well as Myoclonus all over.  Go big or go home right?  ;)  

Really it could be either.. or both.

Today has been trying to say the least but I have stayed home.  everything from my neck to knees is constricting.  My heart rate has been up to 137 (this is actually pretty good because its been in the 180's before) and my O2 has been down lowest at 91.  It is about 96-97 now though.  My pain level is higher then the smiley face scale goes, even with 4 doeses of Valium. If I can make it through it this time without the ER then that means less drugs, and less drugs means better for me.  It also means I don't have to go sit in an er for 12 to 24 hours.