Today sucks. Not even going to lie about it.

So... I have been in pretty bad spasm since Thanksgiving.  Possibly even before.  I am honestly losing track of the days now.  My speech keeps bouncing from inaudible to pretty clear.  So I did a video while it was mostly clear.  

So now we wait.  we see if it calms down.  If it gets worse I could be in real danger.. so I will be going in.  If it stays as in I am uncomfortable but I think I can cope, because I hate being drugged.   

My girlfriend started a GoFundMe page today at first I wasn't sure how I feel about it. Because I hate to ask for help, she knows this Thats why she did it anyway while I was sleeping.  I need to get to one of 3 places.  The Mayo Clinic, the NIH, Or the UK.  All these places Have some serious studies going on about Myclonus Dystonia. (along with other complicated brain disorders) My doctors are good here they are, but the research just isn't being done here.  It is scary to be told all the time your disorder is not fatal, but then to be turn around and told that your organs are in distress and in danger.. It makes me feel frustrated.  Is that why dystonia is so little talked about? Because it is not Directly fatal??  What about the damage it does to my intestines and stomach? Or the days and days and DAYS on end it steals from me because of feeling terrible.  Or how about having to go to a hospital just to be drugged so your own body doesn't crush your heart and lungs?!  

I am not asking for everyone to give money.. if you can cool but really what I want is a medical grant.  What I want is a point in the right direction.. what I want is a doctor that will follow me closely and fight with me the entire way.  I want the means to get to this doctor wherever they may be.  I want HELP... Help finding that someone finding that place.  I want help from a body that is determined to break me down slowly.  So PLEASE SHARE THIS... share  my blog.. share my videos... share share share with everyone you have ever met so that maybe I can find someone that knows something.  Because I feel sometimes like me and a very select few are fighting alone.  My little army needs to be a big army and we have a giant monster to defeat.   Most days I can be positive.  I can smile and and still be happy.  Today I am thankful to be alive but I am honest when I say today I am scared...   and tired.  SO SO SO tired.  If nothing else please say a prayer.

Update: nurse called at 6 she said that they were looking at my notes and that the last testing showed all my pelvic muscles being in severe spasm. They are considering this to be unusual. She encouraged me again to come into the ER for even the tiniest of progressions.  They are also calling in another muscle relaxer.  

Sometimes the monsters are in us..

So these past few days I have had some intense pain off and on in my chest and ribs.  A TON of pulling and spasming especially the right side.  Today I have a bleed somewhere in my stomach or intestines. If it doesn't stop it will mean the E.R. again for me.  Here is to hoping it stops in a day or so, it has already slowed so that is a good sign.  I am tired.  Like.. REALLY tired.  I wish I could break up with you dystonia.  You would be the ex that I would burn all your stuff and move away from.  Probably get a restraining order Hah!

Being a human is too complicated...

Last night was a bad night like brought me to tears bad night. My trunk started contracting hard at like 1 a.m.  and it was pushing my ribs and chest plate felt like someone was digging a knife in every time I took a breath.  I did get some sleep though.  I still hurt quite a bit today.  Still having some sharp pains in my chest, But its time to get the day started.. it wont wait for me to feel better.

"I had to go through hell to prove I am not insane.."

I took this one tonight because tonight I am having extra spasms in my neck.  The trunk is normal when its acting up.. my neck has been bad a few days now.  You can see the muscles moving in it.

I love the song GHOST by Ella Henderson.  Though I know the meaning I take from it is not what she wrote about.. Listen to the song... Think about chronic disease or disorders. I feel like it fits.

I feel like I am doing well despite this.  I feel like the pain is manageable right now.   I feel I feel like when I do sleep I get a new day to try again and I feel good about that.

Keep fighting!

Its been a while and I am SO busy but I am going to take the time out to talk about a few different things..

First this article I read today---

 http://themighty.com/2015/11/to-the-medic-who-thought-i-was-faking/?utm_campaign=site_fb&utm_source=facebook&utm_medium=social

Everyone should read this because it HAPPENS.  You think it wouldn't but it does. I have gone into convulsions when I couldn't speak.  No it is not a seizure but No you have NO control over your body.  If anyone knows what a sternum knock is...You know it hurts.  Like REALLY not great, and they do it because they think you are having a seizure.  When I was in the hospital last I had nurses that came into my room ready to push anti seizure meds, until someone corrected them.   Sometimes my girlfriend, sometimes this amazing nurse.  It is TERRIBLE not to be able to speak for yourself.  It is TERRIFYING to be locked in a body that you are smart you are aware but every inch of you is malfunctioning and you can't defend yourself.  I feel for this writer of this article.

I was SO sad after my hysterectomy.. I struggled hard and some days I feel sad but mostly these days I feel like choosing my health over carrying a child was probably the best thing I could have done.   I will have children.. It will be in non traditional methods and I am REALLY good with that.  My body wasn't made to handle those things.  I know gods choice was right.

I have been Doing so much work for Crops of Luv these past few weeks and I am really feeling like I am feeling less depressed by being able to help families who struggle.  Kids that are critically ill.  I get it.. I get the feeling of just not being able to do.  so giving them something that makes them smile makes me smile and I am THANKFUL.  I am thankful that I still can give to society.  We are never too scarred, never too broken to be able to help someone else.


I see some people list things about their lives on Facebook and I wonder how they have it all together... like really. And I wondered this out loud to my girlfriend today at dinner and she said well.. their bodies aren't going through a car wreck every day.  This simple statement made me feel validated.  Made me feel like I do enough.  Like I am accomplishing.. because I am doing just that.. still accomplishing.   My best friend Kenneth and I put up shelves in my living room today and I cleaned.  yesterday I cleaned and organized my craft room and went grocery shopping for thanksgiving.  I am still accomplishing! Towards the end of dinner I just couldn't eat anymore and my words were slurring and she asked me if I had taken valium because I was sounding drunk.  LOL I hadn't I am achieving but my body is fighting back.  It was tired.  too tired to eat.  too tired to form words.   I will post this and hope that grammatically it sounds good because re-reading isn't going to happen.  Thank you lord for spell check, because I am exhausted.

I am down another 2 pounds.. and that's great but its not because I am like working out or doing something great its because my organs are in serious distress right now.  I feel it today in my back and chest especially.  I am taking 4 doses of valuim a day the last few days.. still its rough.  A Lady I am part of a support group with is going through the same thing,  I say a prayer for her because shes dropping weight so quickly and i know for her its been a depressing thing and I feel for her.  For me I feel okay about it right now because I am still in an okay range.  I'm down 27 pounds over all but if It keeps up I may be in her position.

One last thing I would really like to talk about is the amount of people getting into facebook support groups claiming they can cure dystonia.  THIS IS FALSE.  You can treat your dystonia and for some those treatments may work.  but for MANY people seeing things like people saying that they can just switch their dystonia off is frustrating.  If it worked like that we would all f'n do it.  This isn't a joy ride we are on with this disorder.  If there was a fix for my brain I would take it in a heart beat.  DOESN'T work like that folks.  You can treat the symptoms and for some people that really works to the point you can hardly tell they have it.  but for many its just another pipe dream and another failed experiment.  We are people that are grieving our losses of lives we wanted.  We are champions still fighting for the lives we push for.  Please don't go around saying false things.  That only creates more people NOT understanding and puts us further away from a REAL cure.

I will end today saying that these last few weeks I feel so blessed. With holidays coming up and family get together,  I love the feeling of a home filled with love.  I love being active in my community and being able to help others.. and I am thankful for everyone of you that has taken this time to read this.  Happy Holidays everyone.  Whatever it is you celebrate over these next few weeks enjoy is and may you be blessed.

Some days I just can't cope.. (insert annoyed face here)

The allergy place doesn't have a way to test for silicone allergy.  Medtronic doesn't supply test kits.  They will not do surgery without another test.  I kind of want to cry.  I am BEYOND frustrated.  I have had a constant head ache since the first day I posted about the headache.  It ranges from tolerable to omg I am going to jab a spoon in my brain.

I feel.. angry, sad, and annoyed.  I feel like I am tired of fighting and calling places over and over again just to be told they don't know how to help.  I feel tired. It should NOT be this hard for people with serious medical conditions to get help.  WHY is it this difficult?  There needs to be a change..

I want to get into Mayo so bad.. but here is the reality about it.. My medical care is ASTOUNDING. I easily rack up over a 100 grand a year.  I can't afford 40% of that.  And 100 grand is probably low balling it honestly because I think I have had surgery on some part of my body every year since 2005.

And my brain surgeries? the bills for those were around 800 thousand dollars.
While I sit here and complain let me note that I do know I am luckier than most.. I have health care. For that I am very thankful.  It could be SO MUCH WORSE.  I know this.

 But it could also be SO MUCH better.

Day # ? I don't even know anymore ..

I think it's day 5 of the headache?  Not sure.  Tonight its getting really bad though.   We saw a movie this afternoon and the day started out pretty good.  (movie was terrible by the way the James bond movie... SO BORING) Anyway.  during the movie I could feel my neck contracting but it was completely manageable.  During dinner my movements started to get pretty bad and my throat was spasming quite a bit.  Almost choked twice.  :| I am more annoyed then anything.  Now My head is throbbing pretty hard at the base of my skull and all of the scars in my head and neck feel like they are pulsing.  

OH! And to kick it off I got a messege on my voicemail from my caseworker.  "Hi Casey this is Nancy from Mercy Care Advantage.  I was just calling to see if you still needed a case manager." WTH?!  Nope lady I was miraculously cured over night of a permanent brain disorder.  *bangs head against nearest wall* No really though... why is she so terrible at her job.  ALSO HAHHA for giggles.  On the way to the movie I hear on the radio "we specialize and are top in the country for brain disorders.. (blah blah more words) Please call the mayo clinic today" I laughed.  Ironic? 

Its totally fine.  The universe is sending me signs.. I am just not sure at all how to read them.  I need a decoder ring please :)  

At least my computer is working again.. Yey!!  Enjoy your Friday :) 

You have 3 choices... and the first two suck.

Going on day 4 of consecutive headache.  I will be honest I think I am getting used to it.. Just when it seems like I may die it will lessen up and I will forget about it.  Its really bad in the scars on the right side of my head they throb the most, and behind my ear.  My hearing keeps going in and out these past few days.  BUT!! as terrible as it all sounds I really don't feel all that terrible.  I feel Okay in fact compared to most days.  There is no contractions in my ribs or legs today.  So.. I feel pretty good.  Also for the past 2 days I have been able to tolerate food pretty well and without pain! the stomach contraction have eased a bit.  Halloween was good but I was too tired to do the corn maze like we had wanted.. we ended up skipping it and I was sad about that.  The night before we had gone to a friends party and that was pretty good.  I felt alright for that also.  Though the large crowd did make me a little more anxious.. I didn't feel terrible.  More movements though that made me tired.  Over all though I feel okay these past few days.  I haven't looked anymore into Mayo clinic as of today.  Its really hard for me to call people because they cant understand me on the phone... so, yeah there's that.  I haven't given up though!

I know I look unhappy in this picture but I am really not.  When I try to hold still my neck gets pulled tight and it looks like I am growling instead of smiling.  I swear though this was a smile.