Time flies

I find all of this so hard to write about myself and put down for people to read. I am very matter of fact about what I have but the everyday stuggles are a different story.
I try more to think of all the people that we are missing by not bringing Dystonia to the front and so people know this is real.
I have been so blessed in my life to be where I am now and still have a chance to reach somebody that has Dystonia.

Tag who's it

Well we have been Hazy Hot and Humid Frederick just loves it I on the other hand hate it.
Frederick is playing guess where I am going and boy is he moving around. In 3 days he has been in the hip, back ,foot ,and then tonight tried to choke me .If I could get rid of him I would but not if I had to give him to someone else.
At least I've been awake when he pulls his games . When asleep and get spasms out of the blue boy that puts a damper on the rest of the night.
I realize that I am getting tired and I have fought hard but still have alot more to fight.

Changes

As everyday comes so does the changes in my life all I have endured and will still endure is coming together to where I will no longer be a behind the scenes pusher to me being put out front .
I know that all these changes are for helping to reach people suffering from Dystonia that don't know it but it is still hard for me.
All it takes is a small mustard seed sow it and watch what happens.
So I am growing stronger with each day and when the enemy is inside you,you have to focus harder and I have stayed STRONG this long and with a special jacket that I was given I have regrouped within myself and I'm ready for the battle.AMEN

The road I walk

As I do everyday when I am mowing grass or just being outside I feel closer to God because his beauty is everywhere.
I never push my faith on anyone or judge anybody elses faith.But my faith is what keeps me going and I am always listening to where God is leading me.
It is very hard for me to try and explain how my faith keeps me doing all that I do but I know what I have done through the years. I know the words to say to someone that has found out that they have a form of Dystonia.
I know that the way I live with my faith may not be the way that was taught to me as a child but God doesn't judge me as He is always with me.

Life is what you make it

I spent a long time not knowing that I had Dystonia and once that I found out what I had I put a name to it to survive.Frederick is my constant companion always a pain in the side.
The picture with my grandsons and me made me look fatter as I had to wear my brace that rolls my body around. I have 4 braces and depending on Frederick's mood is the one I wear and somedays I don't go out as no brace feels good.
It's the same way with the leg/foot and hand I live by Frederick's rules but I also live by my rules he cannot stop me and if you allow your illness to take you over it will win.
I take everyday as it comes and after 20 years of this I should know that there are certain things I can't do but I still do them as I will never let Frederick win I adjust my days so I can do things that need doing and I rest when I need to.
Can't,won't and quit are not in my head so I just keep going.
Dystonia comes in many different ways and no one is the same so each of us are unique and never should be judged as like people with Dystonia all people are different. VA

Fighting a losing battle

When I knew I had to write about myself I wasn't happy as English was not my best school subject.
I 'm not worried about making a fool of myself as the few people that are close to me know me as the joker/trickster ,so you have to be on your toes with me as since I'm on my toes and you are one of the unlucky few that are close to me watch out.
My day has been hectic shopping and then lawn mowing and I know more about Davy Crockett than I need to know but a 8 year growing pains boy wait right to last minute to do report (Not that I ever did that) Ask anybody I'm an Angel.
Well almost all my beads are gone I kept a pencil box full and all the material I had to sew things went also. Did a bartering thing so all works out in the end .
I am getting closer to the corner that holds all the pictures of
our lives and stuff left of Mom's that I need to go through.I've gotten into some of the pictures as need to put on website for before Frederick and after not pretty.
I know when I was getting all the material out I still had the last quilt top log cabin style all fall leaves material and colors that I had made I can't let it go I know I can't put it together and hand tie it but maybe down the road John or Brandon will want it.It is what I once was and now all that is memories of days gone by.
Frederick loves it if I'm upset or hurting but I am still stronger than him and I won't allow him to win.

Letting go

I have spent as much time as I can outside so I would not have to post as I knew what has been happening to me.
I have to clean all the corners , cobwebs, and dust bunnies from my life. Not just inside of my home but from inside me.Until this is completely done I can't go on to the things that I need to do now with Dystonia awareness.
I sold my jewelery making supplies and as I sorted through everything I knew what I was going to make with the beads and stones and I saved some out still thinking I would still make something but it was still not enough.
I had to go back through these beads again and as they went into the sold box I had to let go of the part of me that wants to hang onto the creative part of me that in my mind still wants to be there.
Next will be the cloth I have saved that I know I will never use so it needs to leave my home and my mind .
I know this sounds strange but it is something everyone has to do sooner or later.
As I start my new adventures I can still remember what my life was like and grow with the fact that I will still be able to create in other ways.I have John who will be in 4th grade and I will learn through him and live each day as it comes.

Everyday

Was up late I always watch the late news something I picked up from my Dad ,he always watched news filled furance and still got up every morning and worked.
But then was up at 3:30am as I couldn't find a without pain way to lay down . Storms around us all day and the muggy weather didn't help .
Days like this just make it harder to move my left side Frederick around
I am trying to get all my corners cleaned out so I can get to the stuff I really need to get to. We all have them the place where you put stuff you can't throw away but you really don't want to go there
I have to go there because it holds my family pictures and the before and after Dystonia photos that need to have put up on website the outside of me has changed but inside I haven't if anything I have been made stronger because of Frederick I don't let the stares and remarks hurt as bad as they once did but what happened then was what I have to let go of to be able to get in front people and speak about Dystonia and show that you can do on and don't accept what a Dr. says as you are useful in more ways than you know.
Blessings VA

Drs

Well had my physical today and all went well except that I'm old my body is but not my mind that runs 24 hrs aday trying to figure out how to get the truth about Dystonia.
I worry and pray for the people living with this disorder that Drs would rather think you are crazy or does surgery than says ops.
This is so hard for me to write about myself as I have tried to hide my spasms and wear clothes that don't show but now buying clothes that show my muscles and not have so much fear of coming out and speaking to people
NO MATTER what you have or WHO you believe in CAN SURVIVE.
Blessings
VA

Life

I am still learning to learn this blogging but it is what I need to do.
I have always just accepted that Frederick would always be a part of me and sometimes I can almost forget him but then he comes out and twists me good.
I live my life as simply as I can and try to live stress free Right with an 8 year old ok so my life isn't simply.
To live with Frederick as long as I have and all that he took away from me is a testament of my faith, humor, and being raised in Northern New Hampshire.
I have tried to live my life so that when I look back I have no regrets as to what I have done.
I keep an open mind and use all that I can to survive.
Blessings
Vickie Ann