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?  ;)