It has been a while, I am a slacker.

I suck.  I have not been keeping up on my blog, but mostly I have had nothing interesting to report. However since February 29th is rare disease day I figured I needed to get a post up before then.  I have for the most part been storm free for about 2 months? My pain levels have been manageable.  Tonight I hurt more than usual but such is dystonia. Lets call it an 8, it has certainly been worse but I woke up aching really bad this morning.  

The Xyrem (GHB) came in the mail last week.

I have gone through a roller coaster of emotions because its exciting and terrifying all at once.  I am On anti-depressants that cannot be taken at the same time as the Xyrem.  SO... that is the most terrifying part.  Mood stabilizers have been a life saver for me for the past 7 years.  I worry.. And Of course when I worry my OCD kicks in and then I can think of NOTHING but disaster :\  Heh.  Last Friday the nurse called and said that we would probably start the trial on the doctors hospital days (Tuesdays and Fridays) so she thought we would be starting this Friday.  The nurse I was speaking to was the one I always talk to but she said she wouldn't be in this week that I needed to call is other nurse if I didn't hear something on Monday, and I of course did not.  So I called today to find out what the plan was and the current nurse looked on his schedule and I am not in the hospital schedule for Friday.  She didn't even have any notes about the drug trial.  I was really annoyed this afternoon because it is these moments when I feel like because I am one of so few that the doctors really just don't follow close enough attention because they don't know what to do.  It feels like really bad practice to not be following the patient you are putting through a drug trial more closely and following up with her when she is starting and have some details at least.  The drug companys nurse was the one that told me I would have to stop my anti depressant because of interaction.  My doctor and nurse were completely Unaware of it until I brought it up.  So again I state that terrified part.. this is why.  I know I am a guinea pig... but sometimes it would really be nice if they didn't treat me like one.  Maybe if they at least pretended to know what was going on I would feel a little more comfortable.  I have done a TON of research on my own, google is amazing.  So I kind of know what to expect, but it is all a guessing game.  

Thank you 2016!!

Okay so 2015 was NOT a good year for me on so many levels.

2016 didnt start off with a bang either but It is slowly making a turn around, Today was a big thing!!!

My appeal for the Xyrem GOT APPROVED!! the co pay isn't too bad. but between channel 5 and my go fund me and just saving money I have about 1000 For medical stuff so I wont have to worry.     I can now start the drug trial. This is huge as is can potentially stop the Myoclonic jerking or at least slow it down. I haven't has a storm since the start Of all the benzodizapines and I am getting used to the side effects of them.

So here is to crossing our fingers to new beginnings!! :)

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 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.

Its been a few days..

Here is the positive. It has been 3 days since my last storm.  SO YEY!  But my muscles contractions in my back are so much worse.  Still I will take it over a storm any day.  Christmas has been a busy time of year and I know so many of you have things going on so thank you for reading.  We got another denial from Mayo Clinic.  We also got another denial for the medication for the drug trail.  Not sure what the next move will be.  I am tried Like.. REALLY tried but I am so full of love and gratitude to all the people that I know and don't know that are sharing m story that is doesn't matter how tired I am.   I hope each one of you is blessed.  I also Hope that anyone suffering knows they can pull through bad days come and go but they do improve.  Here is the news story if you haven't seen it... I want to spread the word everywhere till everyone knows about rare brain disorders.
I was on CBS!!  go see me on TV!!!#fightlikeagir!!

I want to share some links that if you have any interest in following please do..Thank you all for reading an learning with me... and sharing.  If I could hug you all I would.  So think this as a virtual hug.!!

Twitter:  https://twitter.com/CLNoe?lang=en

Facebook: https://www.facebook.com/casey.noe.3

Go fund me: https://www.gofundme.com/2bc5hzt9

Aslo PLEASE check out crops of luv where I do charity work to help critically ill kids get wish scrapbooks for free!! 

https://www.facebook.com/Crops-of-Luv-112138497486/

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!

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.

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.

Even when it rains there is rainbows!

Okay So... today is the second day of massive headache land.  There is so much pulling going on behind my ear.  I keep getting ringing and then cant hear on the right side and behind my right eye there may be a gremlin living in there..

Applied at Mayo Clinic yesterday, they called this afternoon saying they couldn't accept me because of my insurance.   Medicare only pays 60% and I would be responsible for the other 40% then they said I would have to petition for that 60% since I am on an advantage plan.  I need an adultier adult... someone to teach me about how to work these things I just don't understand.  It took them less than 24 hours to look at my case.. I cant get ANY answers back from insurance or doctors that fast... I really believe they may hold the key to my success. I JUST NEED IN.  So that was definitely the rain of the day.

Lets talk about the rainbows.  -- My best friend. Seriously.  You know when you have a friend who is just the most amazing person ever and they do or say things that always restore your faith. He is it.  Sometimes I cannot express enough how good this guy is.  He called me over today says he's got something for me and he got me this.. https://www.liftware.com/ I shall try it tomorrow with cereal!
Its a pretty big F'n deal.  I am SO Blessed with so many beautiful souls in my life.  He is just someone that is SO good and caring to those around him.  Thank you Kenneth Creech.  I can't thank you enough for the friend you are to me.

I was accepted into the Drug trial for Xyrem.. just waiting to hear back now on insurance coverage for that... if it doesn't though they said they have other ways to have it covered.   I may not get to start that till fter the first of the year though since its going to require a hospital stay.

Me Vs. Biscuits

So Much to say today lets start with a shout out to Facebook who helped me meet a lady named Mary who is going through what I am and we talked and compared stories are problems are so much alike right now its not even funny. I don't mean to sound thrilled about that because I am not happy someone else is suffering, but the things I thought no one else would get she does... so that's kind of nice.

So I told you all I hate videos of myself.. and I DO.  I am realizing they need to be taken though so people can see.  Sometimes I cry when watching them because I just can't stand to see myself.  If I don't see it I don't know how bad it looks to others.   If I don't show you how will you know though?
It is MUCH easier for me to eat with my fingers than utensils.  So this is today.

Okay to tell you what this is like.. its those movements you can see..  but what you can't see are the muscles that are also twisting while jerking like this.  Sometimes getting dressed and feeding myself feels like I just ran a 5k.  there is this picture that goes around facebook of this woman  with her toddler... (this is not my picture,I do not own it I just took it off a Facebook for an example)

Anyway this is what it is like just as I get something under control Dystonia is like NOPE and just goes in and messes stuff up.  I was doing GREAT on my heart medicine.. now there is so much pressure from my muscles bearing down on all my organs that my heart rate BARELY goes under 130 most days.  Usually if I am doing anything its about 140-155.  My organs are too stressed my stomach HURTS ALL THE TIME.  Like someone is squeezing it.  And my blood sugar no matter how good I am is still higher than is should be because my body is stressed. My organs are stressed.   So even when I have done everything I should all those nicely folded piles are being ripped apart like Godzilla.  Maybe I will name my dystonia that.. Hmmm   I just want things to relax... I want my hair and skin to look pretty again...right now I look and feel like a small mangy animal.  :P 

Today is blessed, but I really need some help.

Today is a beautiful day.  I woke up and I am alive and kicking.  So I am grateful.  But today I am overwhelmed.  Today I am stuck.

Here is a current list of KNOWN medical issues.

*Myoclonus dystonia
*Type 2 diabetes
*high cholesterol
*metobolic syndrome
* Unknown bowel problems (some due to the M-D some think I may have IBD) But there's scarring in my intestines.
*PCOS
*abnormalities in my red blood cell counts.
*Tear in rotator cuff
*Hital Hernia
*Fatty Liver
*Kidney stones
*Migraines
*Depression, Anxiety, OCD
*Tachycardia
*There's a slow growing lump on my thyroid. -- But not thyroid disease.. (so they think)


And if someone tells me that these can be cured by changing my diet I will hunt you down and bite you.  I Don't eat fast food barely ever.  I eat mostly Vegetables and meat.  I eat a TON of salad and I eat fruit.  The only down fall is I drink a soda or 2 a day.  Like that is literally the worst thing i put in my body.  I am human sometimes I give into a sweet treat but that's far and few between, and lately its not happening at all because I am MISERABLE.  Anyway..

These things are happening while most of these things aren't bothering me the last week my heart rate and guts have for sure been and issue, and my movements just keep getting worse and worse.

My doctors take SO LONG to do anything.  My caseworker is TERRIBLE.  I don't know why I have her she literally tells me every time I call her that she doesn't know what to do about whatever the problem I am calling her for.  Most commonly pushing through referrals.  This is her JOB mind you. I cannot request a new one from anyone but her according to the mercy care supervisor.  I have to call my caseworker tell her I want a new one then wait 2 months.  SURE let me just do that and have that woman do even less than she already does.  Not to mention she is just highly offensive in the things she says sometimes.  So great she is useless. They send me letters telling me all the time about how I am classified under "catastrophic care"  But then she tells me I don't qualify for long term care because I can still walk and speak.. what?  And hello...is questionable if you can call whats coming out of my vocal cords some days as speaking.

My Neuro is good,  But hes hard to get into see and sometimes I feel forgotten about but none the less I like him.  I also Like my PCP but hes also impossible to see and hes a very far drive for someone that cant drive on the bad days.  All the other doctors don't communicate at all with each other, and honestly some I feel have straight up given up finding answers because it wasn't and easy answer.

I think I could deal with all of these things individually Except for they all make the biggest monster unbearable.  My Myoclonus is out of control.  I am exhausted. I was waiting for an allergist referral I finally get it and call them.  they had me send over the materials I need tested to have the DBS put in and told me I may have to find some of these myself.  WTF?!?! Please tell me how am I supposed to find some of this stuff... I don't think I can even pronounce all of it.  So Okay.. fine I take a deep breath.  Medtronic does NOT supply allergy kits anymore for their devices... IDK why its really terrible and I am just astounded by the whole mess.   They had once told me they could make a device not coated in the silicone I was allergic to they could cover it in polyurethane but they then told me they wouldn't because it cost to much to go through trail with the FDA. So fine.  Now it's 10 years later they want to retest me to see if I still have the allergy because DBS Is still my best shot at a "normal" Life.   Then the lady on the other line drops the other bomb.  My insurance probably wont cover the testing unless I have a anaphylactic shock reaction to the material.  I'm sorry but WHAT planet am I on? My body rejecting a medical implant isn't enough?!  I said so what are my options? she says that if I have the Implant and start having a reaction then seeing them would be covered... Uhhh.. super.   Or I could pay for it out of pocket.  SO I am probably waiting another few weeks to even see these people just for a consult because they have to find if they can find the material and if they can't then I have to.  THEN I have to wait and see if my insurance will or will not deny it. (at this rate I am going with will because they are still denying my heart medicine)
OR Option two I could say F- this and go ahead blindly and hope that they will cover another DBS that I will probably have an allergy to and just hope that they have a way to treat that once it's in.

I NEED HELP. I am tired.  I am tired of fighting... and I feel like I am drowning.

 I want to get into the Mayo Clinic.  They would look at all of me as a whole and not each problem.  They don't accept my primary insurance though.  They accept my Medicare but I have been told its impossible to get in.  I don't have a clue how to even start to go about that process and asking my caseworker would be as helpful as asking my dog.

Other things people have suggested to me is to get a Doctor in the UK to see me they are far more advanced in M-D than in the states.  ( I also need genetic testing that my insurance does not cover, as there may be more than one underlying condition)

Going to a news place and getting them to pick up my story.  ( I don't know what to say to anyone or how this would help except maybe a doctor would say I would love to take on your case and figure it all out and maybe be my godsend)

Going to Medical schools and getting them to take on the DBS issue since they are doing experiments all the time getting them to help figure out a way my body could handle the implant.

These all sound like grand ideas but I don't know where to start or how to with any of them.  So I am asking for information, names, places I could write... ANY information.  I am willing to do the work.. I just don't know WHAT to do.  Who to contact, or how.  You can comment here.. Or on my Facebook if you have ideas or Write to me at my GMAIL at Caseynoe@gmail.com

Thanks for listening.

More Deep Brain Stuff..

These are more pictures of the original device and surgeries. Looking at these I cannot believe I am considering this again.. but then I think of all the possibilities if it goes right this time!!!

Also I was explain to people on a dystonia website today how I was told basically what is wrong and why so here is my very rough drawing to explain it to others also.   

The protein is what mutates.  Without enough of it all your brain signals don't go through correctly.  they get mixed up or crossed.  DBS sends electrical current through your receptors and helps transmit from one to the other the signals that the protein is missing.  

I little bit of humor for a terrible day

So M-D could be the best diet plan ever.
Today started out okay but my heart rate kept rising even with medication I was easily in the 140's
O2 is a little low also.  So I feel pretty terrible.  The past few days no solid food has been staying in my body so tonight I thought Okay.. I have to eat something. Diabetic and hypoglycemic... Something other than Gatorade and Toast has got to go in my body.  So I tried chicken soup.  I am for sure positive I just burned off more calories trying to eat this soup then I actually consumed.  I am also wearing a good portion of it.

This really could be the best diet plan ever... Haha

Tomorrow will be better!

Please don't stare.

Did you know that while my type of dystonia is very rare that dystonia itself is the 3rd most common movement disorder? But most people have never heard of it, crazy right?

If I go into a doctor and they ask me how to spell it, then say they have never heard of it.. (and this has happened) I am polite but I immediately find a new doctor.  Or if I can sit there and whatch you google it... Yeah finding a new doctor.  Its sad but these things have happened.

Last night was difficult for me.  My chest was really tight my heart rate was at 145 and my o2 was down to 94 at points, but I feel much better this morning compared to then.

Things I want to talk about today are my experiences when strangers don't know whats wrong.  MOST people stare.  Some make sarcastic or nasty comments.   When I was in school people would call me a drug baby, or tell others that I myself was taking drugs.   Please don't stare.  It makes it SO terrible.  You feel ashamed of yourself and it makes anxiety so much worse, and the quick change in emotion can make the movements so much worse.

When I was in college I was in a library studying and my movements were particularly bad that day.  I had a guy come up to me and he said: "I don't mean to be rude so I hope I don't offend you But I have been watching you a few minuets and I was just curious as to what is wrong?"  A few years later I was in a restaurant eating and the same thing I was having a particularly bad day and a waitress stopped and she just asked if I was okay.
I don't know about anyone else.. But to me these were kind acts. You asked instead of just staring..or assuming, or being freaked out.  I felt grateful for those people.

I am self conscious, but far less then I used to be.  When I was younger it was HARD for me to make friends because I came across as rude or standoffish.  I preferred not to speak.  Sometimes the M-d makes my speech VERY hard to understand.  I just didn't want people to stare.  I preferred to not be noticed, to not stand out.   As I get older I care a little less about what people think because if they are going to be that not understanding they probably shouldn't be a part of my life anyway.  I love the invention of texting.  I HATE talking on the phone.  Most people have a hard time understanding me.  Automated systems don't even pick up what I am saying.  Those closest to me have learned to speak "Casey", and know what I am saying.  My partner can even sometimes just determine hand gestures LOL and will make most of my calls for me or talk to people on the fly after I hand her the phone because someone has asked me what for the 3rd time. At my old Doctors office I there was a receptionist there that could NEVER understand me and it never failed she would just eventually hang up on me.

I don't do well in large social situations they make me uncomfortable.  Anxiety is a beast especially with things like M-D because you are always worried what people are thinking about you.
I try now not to care so much but there are still days when I just can't be out in public.  I can't even watch videos of myself because I hate what I look like.  My partner and I took a trip and swam with sea lions I loved the pictures because they looked pretty and I looked normal.  I didn't want the video though because I can't stand to watch myself.  It's painful.  These are things I am still working on.  One of my best friends had a wedding back in August, and that was also difficult. While I thought I looked nice, I had no self confidence issues about that. I had a very hard time being part of the wedding party because Of my movements.  I wanted to cry because I felt like I ruined parts of her beautiful wedding.  I didn't want to miss out on such a huge part in her life though so I did it. As I got up to the front of the wedding party My dear friend who has always accepted me just as I am from the start told me just to breathe I did great and I was with her now so I was fine. It was painful and I had a moment of self hate afterwords. Eventually I would get over myself and realize it doesn't matter.. I was there for a beautiful moment for people I loved, and that is all that needed to matter.  I am lucky I am blessed with so many people that love me so unconditionally.

This is where I end today. Everyone be Blessed!