It's time. 
A better understanding is needed. 
Men are not mind readers & the majority of people do NOT 'get it'. until you explain it to them.  

For the past 6 years I have suffered with a twitch.. in my head, pretty much constant that progressed & strengthened into such pain, I could not walk or focus. I had surgery and it was not  a complete success. It did remove a ‘Blockage sensation’ in the front of my head I had.  It never went away and in time had  steadily increased in frequency and 
in pain. It is 10:30 a.m. and I’m ready for my nap. I am up, usually at 4... it takes me a while to get medicated and calm my twitch. It is so strong in the a.m.  I can be hungry and the pain goes right to the pit of my stomach, the thought of food suddenly has me gagging.

I try to read. I TRY because it is physically maddening to read with a constant twitch. TRY it. FOR 6 years. It is a LEARNED habit, I cherish.  I also read something that will ‘force’ me to start my day in a positive light. It is too easy to be dragged into darkness.
You have to kick at the darkness until it bleeds daylight. 
I have a friend Mona who reminds me of that. 

‘By 10a.m.  most days I choose- Cry OR  DO  something. 
Not just do.. BE creative. 

Walking is something I MUST focus on most times, I feel like I have a weight in my head wobbling the rest of my body.  When being constantly zapped- what do you do ? 
Learn to live through it &  Thank God for each time you come out the other side. 

I don’t share any of this for PITY. Pity is not what I need. 
I need loving vibes sent. Understanding for me and others like me. 
I have Trigeminal Neuralgia & some. 
I have on average, on a good day 5 major attacks an hour. 
I have a very visual case. I find it difficult also on levels socially.  
Photos taken this a.m. shared. *Hard to do. Even if just in a blog.

People can see my pain. It makes some uncomfortable. It makes me uncomfortable.  
I must force myself out socially. BUT my home is different. IT IS my comfort zone that I NEED badly. I invite only those who I know come with love and nothing else. 
I am very selective of who I even invite for a coffee. 

The woman from the TN Support group, Kathy has been very supportive to me personally. She responds to my e mail, some nice, some angry -(I figure if she can’t FU*KING understand, who will?) She does not judge and encourages me - she also pointed out that  ‘I seem to be ashamed of my disease.’  
I though when I read that: That’s BULLSHIT! 
She was right. I am ashamed. I have no control. ;( 

The world world can see, I have lost control of my own face.  My mind is zapping me 24/7 and it hurts and I can’t stop it.  Dr.s can’t either. Not without a lot of GUESSING.
I sometimes think THANK GOD - they cannot see the pain that comes with. 

I don’t want Pity! I want understanding! 
When I am stressed and the blood starts to race a bit faster- I can start to resemble, as if I am having a stroke. I also can NOT bend over all the time for the same reason.
It triggers stronger attacks and NO thank you! I have enough in a day.

*IF I'm having a PHONE conversation - say with the government - ( LOL - usual bullshit) and I start to get upset - as they an cause you to do - it can trigger an attack,  I slur my words and my face cramps and HURTS. They can’t 'hear' this on the phone and when I go quiet, I’ve even had people who appear to lose patience! 

I AM in the process of finding out how to get my communications in writing! WHY NOT? 
YOU know why - because then when they SCREW UP, you have a record! 

Recently  the government screwed up- after MONTHS of running around and passing the buck- ADDING UNNECESSARY stress to our lives -It was NOT until AFTER I was FORCED  to send a threatening letter - assuring I would be happy to involve Dr.s, Lawyers and the PRESS  - we did get a phone call and APOLOGY and admitting numerous mistakes were made! Amazingly someone was READY to actually listen.  It is draining and I know we are not alone! Speak to anyone and you hear the same stories. 
How many do not have even the energy to argue. Too many.
There services are in place to help us? I find it hard to believe. 

I am so very tired of it. I refuse to be ‘judged’ by anyone WHO does not know and refuses to KNOW OR LISTEN!  
I AM DONE. I will not apologize for this! I will NOT be ashamed and I will educate!
IF I can  -  and I CAN. 
Do I wish I was NOT the one to be educating you on this!? 
YES!!  I AM. Here, Literally the face  of pain. 

I do get breaks, Naps do help. Positive People, Vibes, books, shows.. all help.
Why would anyone want it any other way?   If we lose it  quick, we apologize quick in this house and move on. I thank God for my guys and their patience & LOVE they provide me with every hour of every day.  If I ask. ;) 

Men ARE NOT mind readers. 
A little understanding from strangers - is that too much to ask? 
DO NOT judge UNLESS you know - and even then. Why bother. 
IF you don’t  have anything nice to say - don’t say it. 
DON’T tolerate it either. 

Everything for a reason.  I am learning to embrace all that life gives - as long as I remind myself I am never alone, I’m going to be o.k.   
I’m never alone. ;) I don’t mean the dogs...  lol 

The world can see, I have lost control of my own face.
But they can’t see, I have not lost control of my faith. 

xox
<><   
Have Faith 

Where does it all go?  Sit and think for one minute.
All the medication that goes in our system eventually if it does not stick around and fuck - (alter) your body in some way.. it leaves via your pee.  Years ago a friend told me of the cancer medication she peed out of her system, how it turned the water a deep red and frightened her... and she like me, then started to think - well then, where does it go? 
Cancer medications where you can't have your husband in the same room as you, for 48 hours or it's toxic!? 
Sadly, I do know about this stuff first hand, because I have first hand friends that deal with this shit.  Forgive me, but I have had an emotional day mentally after attending my first support group for TN.  It only hit me after I retuned home and thought about it all afternoon.  Then napped in the sunshine with poppy for 2 hours ;) Amen.

You know what I heard a lot of, besides people -who I do think can relate- to my pain. 
That is strangely comforting. Is that strange?  lol 
One woman simply said: "You know when the dentist touches your tooth- and your not frozen, for a split second you want to go through the roof?"
Well that was a great way to describe it! 
I get that so many times a day I give up counting... no wonder I am exhausted. 
I will admit I was feeling.. defeated.  
To look around the room and not one person has Hemi facial Spasm as well.  

All very normal people, all have busy lives who suffer with TN, on top of life.
The topic of medication came up over and over again! Never good really. Except for me! 
I'm the only one in the room with positive side effects.  ;) 

Holy cow! Forget it, I'm not going on anything else! I Am keeping it natural. 
Rashes that leave you in the hospital and sick for weeks, throwing up.. the same stuff I hear and read about daily over and over again!! You know I get it, but 'I' don't want to play around with my liver or BRAIN or anything else if I can help it ever again. 

Storm pointed out to me a while ago we all have to learn to live with a little pain, some physical, some mental, some both. We still all have choices to make every day and many do it!! WITHOUT drugs.  When I hear of someone who is on an antidepressant I think of them as being 'on DRUGS'  and I AM thankful for that change in my mindset!
I AM grateful for that change in my mindset! 


What blew my mind or rather 'who' was this older woman, late 70's if I had to guess (I'm not really good at that though, and I can't remember names at all) she was sweet, her hair, makeup & outfit perfect! And it's an early meeting! She appeared 'to me' to be sleeping much of the meeting- Oh well, I saw it happen in church all the time.  
Well, at the end of the meeting  - who walks up to me and asks me about Cannabis? HER! LOL  Sleeping, she was not!  
How awesome, it puts a smile on my face now thinking of her.  I wished I had cookies! 
One for everyone in the bunch!! 
I know what these people are dealing with!  Yet, they all had smiles, and encouragement for each other, it was nice to see a few husband and wife teams. I think Norman is done. LOL He can join me next time. Not that I did not LOVE my friend Cathy's support. 

If not for Cathy, I would not have gone.  She was my driver. 
We had to be there at 9:30.  She attends mass with her sisters every Sunday.  So it was really nice of her.  It was our first drive on the 404! WOW! What a difference! It felt like we were there & home in the blink of an eye!  

I am glad I went,  it has given me much to think about. 
I will go again.  Nice to know I'm not crazy, alone, frustrated, "sitting crying in a corner"... which is very easy for me to do.  Who will it help? Will it make a difference? 
I refuse. WE have to keep busy! 
Maybe those medications are NOT helping you? 
Cannabis MIGHT! It might make you smile too! 
WE MUST keep busy. Learn a new hobby. Volunteer, DRAW! PAINT! 
KEEP BUSY!   & BE. ;) 
xox <><

I know my blog can be all over the place.. so is my mind. 
I know I'm making mistakes but I can't sit and re read. 
I pray my message is understood. It is all I can do.

More on TN as soon as I can . ;)