"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.

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.