"some days I feel like Sh*t.. some days I wanna quit, and just be normal for a bit"

So it has been a while since I updated.  Sorry for that.  Thank you for the new people who are reading from twitter!  I know I also have requests for a video update. I will soon I promise.  I just haven't had the heart to do one lately. I will though!

Its been a roller coaster of emotions and  I had a breakdown today.  The GHB does work its not super noticeable.. but it does work.  Unfortunately it is not without serious side effects.  I have become increasingly depressed and riddled with anxiety.  Even with increasing the anti-depressants.  Also.. I have significant lapses in memory right after taking doses.  That is not only sad but also alarming.
Theres been a few days things have happened and just a few hours later I have completely forgotten them.  Not small things either.   Also the deep muscle spasms have been worse lately.  Sometimes they wake me during the night,  I need my sleep so this agitates me.

I feel really Defeated today, this was really promising..  and it breaks my heart to have yet another failed drug.  I will see the doctor on the 6th of to discuss what to do next.  I really want to push the ethonal Pill I think its my best option.  If not.. well I may give up treatments all together.  Maybe I am trying to change something that just isn't meant to happen?  I can instead just focus on pain relief or some junk.


BLEEEHHHHHH Today has been rough and its really done a number on my hope and my heart.
But I am still alive, I still have people that love me... and I am sure I will get my fight back.
Just.. not today.

Happy Holidays my friends :)

"my body tells me no..but I wont quit because I want more!!"

It can complain all it wants there's a life out there and I am living it my friends.  

SMILE!  Enjoy your loved ones today even more than yesterday.  Give today everything you have!! 

I got my Christmas wish.. but it wasn't from Santa.

I wrote a post last night about how I wouldn't stop fighting and that I was blessed with people that help in that fight.  Let me tell you about the AMAZING thing that happened to me today.

I had a call last night from some old friends/coworkers Cheryl and Mike, from a job I had many years back.  They wanted to come visit in morning they had something for me.  I Said sure!! I love company:) My partner woke me up and said it was time to get ready And I told her I didn't need to I could just be in sweatpants.  she said she was going to go get another one of our friends to hang out with today I should just look nice.  So I was like okay whatever I put on real clothes or something.  I thought maybe she had plans for lunch or something then my mom comes through the door so I got a little suspicious.  But I was thinking well maybe they are dragging me out of the house to do the zoo or something.  I know Stephanie worries I will get depressed.  I took my morning medication and fell asleep on the Couch waiting for Cheryl . Doorbell rings and there is 4 of my old co-workers and a news crew.  I was stunned to say the least.  Mind you I haven't seen any of these people in a few years.  We stay in touch via social media.  Then Cheryl reads me the letter she wrote to Channel 5 pay it forward.  It was so touching that people think of me in such kind ways.  They Came in and interviewed me and talked about my Disorder and the fact that I give back to the community by still doing Crops of Luv despite my limitations.  I got to talk about two VERY important things to me today.  The Charity I donate my time to and the Disorder that is slowly robbing me of the things I love to do.  I got to Help create awareness, possibly reach someone who could help with my medical problems.  I also got to talk about a Non profit that is helping children( and their families)who struggle with health problems remember the best times of their lives through free scrapbooks.  I CANNOT tell you how blessed I feel.  I simply do not have words.  People in my life continue to surprise me with how wonderful their hearts are. Each of you where placed in my life because you are meant to be there, today I know its because it is your LOVE and Compassion that pulls me through the darkest of times.  I HOPE I was able to get out everything I needed to.  I was having a really hard time concentrating because the morning medications are pretty sedating.   It will Air Next Thursday at 10 pm and then Saturday at 5 pm. I'm going to be on TV! It will also be available on their website after the airing.  Everyone out there fighting something.. KEEP FIGHTING!  Live on hope, prayers, and love and FIGHT!

Dystonia sucks, but no matter how much it does I still win because of the people that have been chosen to be in my life.  

Thank you Cheryl, Mike, Trish, Don. those that couldn't attend-- Brandi and Sara
Thank you to to my heart Stephanie, my mother, and Darlene for helping and attending. You all made this girls Christmas come early!! 

I have a Rare brain disorder.. It may be a HUGE part of my life but it doesn't control it. Love does.  Thank you ALL!!  Have a blessed night!

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.