Well have started the updating of website .I had been quiet as new meds and getting used to them took a little .Somedays my muscles were floppy and boy do they make a weird sound after being as tight as they have been and then letting go then back tight again.
I am still on the course that I have been about getting rid of things I don't need.Slowed down some but I am gaining everyday so can finish the last few things that I have to take care of.
I will be writing more as I feel up to it now where before my mind and body was just trying to keep going.
I feel great and that is all that matters.
Blessings

It has been awhile this I have posted but between new meds and stopping others outright my body has taken a life of its own.
Things are starting to get better so I am still on the course of cleaning out and letting go Seeking Simplicity is my goal.
So far I have let go of all my vhs and dvd's of my favorite actors(except for my favorite roles that they played). Then I got rid of all my collections of photos and stuff pertaining to them (sent to the ones that are still alive).
Now my records and albums I have to get rid of the ones I have cds for and I just can't hold on to anymore.
You may not understand but I don't want anyone else to deal with this stuff and it unclutters my life so I can keep going with Frederick Dystonia and he has nothing to fight with me on .Everyday 24/7 he is with me and before I get anymore tired .I have to do this and then its done.
Holding on to things is nice but memories last forever so it is my time to let it go and let someone else enjoy.
Blessings

My meds are stopping adding new ones that all work on the central nervous system and I don't whats worse the liver meds or the side affects of Amrix,Clonazepam,and Lyrica ( that one screws up my eyesight).
The new stuff the drs are talking about are worse Deep Brain Stimulation or Botox shots.
My paths are getting smaller and smaller but I will still be here for other Dystonia sufferers that need help as I have been with Dystonia(Frederick) along time and he won't beat me I know his game all to well.

I can barely lift my left arm or it feels like my arm is being ripped apart and not only leaning to left but my right shoulder is turning towards the left.
I'll be able to walk in circles.
I have some new meds and still an infection don't know where it is so something for that, and two for Dystonia.Time will tell like always I just take everyday as it comes and go from there.
Dystonia and stress don't mix so living as stress free as possible helps but as stress is everyday you just have to say no and relax .

I am so sick of drs.and tests.It has been along time since my life has been filled with so many appointments.
It seems like everything is stopping all at once.
The detox helped alot but I'm still tired.
Frederick Dystonia is coming out full throttle attacking whereever he can so not sleeping much.
I don't sleep much anyways but muscles spazming alot even morning now so tightness all day.
Hopefully it's because of weather and not just my meds.

Letting go

I have still been very busy cleaning out my home and soon I will have to get to the corner that holds all the pictures.
My life before and after Dystonia.
I am letting go of all things that I don't need in my life. It is extra baggage,a crutch, stuff that doesn't pretain to who I am .
There was a need at the time when I started the collection but that need is no longer there so let go. Some of it I could have sold but that wasn't intention when I started collecting.
Everyone is different but if your collection is taking up needed energy Is it worth it?
Blessings

Another neck pulling night so easier to move around than try to sleep.
John had a speaking part for the program and never told .He is growing up so fast.Hard to keep up with him at times.
I am still cleaning out ,mind,body and home .I have found better to have small selection than lots of everything.
This is sometimes the choices you have to make the cleaner everything is the easier it is to care for.
Blessings

Well finally getting rain and what do I do twist my left shoulder so arm not moving much as it hurts and tightens .
It's hard as Dystonia mimics so many different movements disorders that it's hard to figure out what you have.
I am trying to get all the things that need to be done before winter.
Tonight John's class preforms after PTA meeting been resting most of day so I can go tonight.
Blessings

Every time I start to do anything I have to stop.I can't do as much as I want to as I get tired .
The yard sale went well and the leftover stuff is not coming back into this home.
I know that I am not getting better and Dystonia is getting harder to control .
That is why I am trying to get anything that isn't used or worn is out of here and gone to places that can use the stuff.
I have to balance my life so to do that I have to have live with only what is needed.
I am really trying to seek the simplicity that I need.

Well another night of up and down. I sleep in the recliner as I can no longer sleep on a bed as can't lay on left side and if lay on back I feel like body crushing . I have slept so much on right side that all the nerves on right coming out of shoulder get pinched and lose feeling down whole arm so of course cat has to lay on me thinks it's his chair.
I am trying to seek simplicity in my life and I have had to get rid of alot of stuff and still have a ways to go.
The less you have the easier it is to take care of and then when you're gone someone else doesn't have to deal with it.
Of course this is October and not only that it has been 4 years since Mom passed away but also Angelique my baby daughter only lived 17 days. She was my first born and even though it has been 33 years I still think of her and everytime something new comes out about SIDS I pray that another family never has to go through this.
As for Dystonia my goal is that people learn about this and get the help that they need to live with this disorder.
Blessings

We finally got some rain and park yard sale Saturday so mowing and cleaning up park so will look nice .
I have cleaned out alot but still not through all of family pictures yet.My mind has to be completely there for that job.
Been up most of night into the 50's tonight. We went from hot right to cool , just crazy weather everywhere.
I am still detoxing and weaning down meds no problems at all so far .Not choking as much so treatments working.
Blessings

website is www.totalbodywellnesstx.net
Blessings

This has been a whirlwind week and not over yet .A chance meeting with a chiropractor from www.totalbodywellnesstx.com and had x-rays done and found out Monday I also had pinched nerve in neck so I was choking more than just evening so they are taking care of me and on detox and already feel less tired even though I don't sleep well at least feeling better and with Dr. Tony O'Donnell's natural supplements www.radiantgreens.com I hope to be off all meds but 3 and see how I do.I'm giving myself to be off by November 1st.
I also got to Baylor All Saints where the Dystonia symposium in going to be held.
So much with holidays coming even though we don't do much for them. My daughter April and Ed her husband want all of us to their home for Thanksgiving. They are moving from apartment to a house this weekend. They will still be close so John can go there when he wants to and still be in same school.
Blessing and enjoy fall.

I still never seem to get to this. I am not good at writing things down that pertain to me, but to help other Dystonia sufferies I have to.
As lawn mowing is slowing down and have home almost cleaned out it is time to concentrate on me only as even though drs say my blood tests are ok I know my body and things aren't right so I am going to wean myself off as many pills as I can and am going to do a major detox as I am tired and hopefully this will help me get back on course.
Blessings

Sowing

No matter how hard I try to try and do this blog at least every other day I find things that get in the way.
I have been in a major battle with my neck wanting to go left but the right side is fighting to stay upright.
With any illness or affliction you need rest so not getting much as mainly at night when I'm at my worse.
I'm am also sowing and with this all things that not needed are going to places that can use them .
Everything is material stuff that is no longer needed so I need to weed out to put my focus on the things that have been always my main focus but now need to take more energy than it used to.
Family,Faith, Health, and Dystonia are what I have to keep doing now.
If you are feeling overwelmed maybe it is time to sow and then reap the rewards of not having to worry about those things any longer.
Blessings.

Well made it through Ike and didn't wind up in ER again so life is good .I always find things to keep me busy and today was trying to catch up with paperwork but football kept getting in the way.
Well football is still in the way so I just wanted to check in and say all is well.
Blessings

Addition to speedbumps

I don't do well with computers so was going to add this to other post but couldn't figure it out.
I have had the speedbumps,hurdles and the mountains that have been in my way and I have beat them all but the last 3 weeks have really wore me out.between the infection ,bee sting, fire ant bites, kidney stones then on Saturday I tore the meniscus on my right knee,and had the EMG to see how bad my Dystonia has gotten I didn't need a test to tell me but all I can say is thank goodness no one can hear my muscles as I sound like lots of firecrackers. I knew that Frederick was creeping into my face and neck but was floored by how much .Now a Neurologist that does Botox shots my vote is to drink my meals.
The test also showed a pinched nerve in my back that I didn't know I had lost the feeling as my muscles are so tight now brace all the time and trying to explain to John I can't get pulled or twisted.
Yesterday I was tired and just wore out.Then we had rain lat night and todat so all the joints ache.
BUT You KNOW WHAT I'm still here and I faced that mountain and it's gone until the next speedbump. I just have to take each day ,do the things that I have to and I also have the right to say no if I want to, just like you do Don't just sit and stare at mindless tv (Football doesn't count ) and find somehow to keep busy.
Blessings

Speedbumbs

I have always faced anything that has happened to me and have been down but never out All lives are like that and you just have to find the strength that is in you and try to keep going.

Well my life is getting back to normal as far as normal to me is .Spent Saturday at ER kidney stones again 48 hrs now with no kicks in the back . Frederick just loved it so enjoyed making me hurt more always diet, meds or family history but only time will tell so back to strict diet and see what happens.
My life is very busy again with school all that takes to keep active with John.
At least we got good news that Mark's leg is healing as well as can expected with no blood flow.
As always I take every day as it comes and end the day with the same zest that I start each day with I will win and keep Dystonia in check
Blessings

I will be so happy when this week is over maybe next week will be better.
I had a stick or thorn that hit me in the upper chest and is now infected and then the bandaid bubbled my skin so used paper tape and even that bubbled my skin. Thursday stung by a bee on left arm couldn't find meat tenderizer or Benedryl so my arm swelled are is now muscle is inflamed.I am hoping I don't have to go to ER but have feeling I will be I had an infection when I see my dr and on Cipro 500mg twice aday been on a week and still a week to go .
I am getting alittle upset as I feel no matter what I do something is making everything worse.
Maybe my body is tired and I need a good dose of iv meds to fight whatever little bug is wearing me out and I hate to get that much antibiotics as I have a little germ carrier with John kids get all kinds of stuff and of course brings it home.
I guess time will tell as if not better off I will go.
Blessings

I should be writing more but always something keeps me away John is back in school and I am slowly getting everything put back after floors were done then dryer kicked the bucket so something else to deal with.
I am facing some real changes with my Dystonia as my meds are going wacky and need to wean down ,also creeping alot more into my neck and face so if I keep up I will becoming the human letter C
When the drs tell me what is happening I look at it as I always have I will win.Frederick can have alittle more of me but not as much as he wants.
Now its more tests and the most dreaded of all EMG lovely sticking needles into my muscles to see what is going on as if they can't see.Not many things scare or upset me but with all the new tests I know that I have to admit to something that has been going on for quite awhile.
This is not going to stop me from doing what I have to do just another SPEEDBUMP in the road.
Blessings

So many ask me how I stay strong when so much is happening in my life and not only is it my faith but sayings, cartoons and songs.
So many at the Olympics have Ipods well I still have my record player,cassette player and cd player music is a major part of my life.Ipods scare me John could run it, me I'm still trying to master computers.
The on thing I do know is you have to embrace your disorder and make it a part of you and learn how to work it to you advantage because the more you fight it ,it wins.

I am sitting on my deck trying to get organized at least I got my Avon order done,I am hearing the sanders and compressor noise in my ear I am happy that getting hardwood floors but also know that I need them when Mark my brother legs finally give out. He has about 20% blood flow below the knees and leg ulcer broke open again so high antibiotics and praying that the infection didn't go to the bone lucky it didn't.
When I went to Florida in 91 to get my Dad set up in hospice I gave him my word that I would take care of Mom and Mark. At that time I didn't know I would be raising my grandson John.
If you have faith you believe that God only gives what you can handle and I keep that in my head all the time.
Mark could be one of the homeless veterans This is why I fight for our armed forces and children and Dystonia.
I pray that Mark doesn't let depression get him down and why I fight so hard to keep him moving.
I also pray for the vets that are alone and hope they don't feel so alone.

Getting JD all settled and all I can say is that JD is one of the first people that knows alot about me that I don't speak about .
I have fought so long to hide and mask my Dystonia as I found out all about prejudice when I got sick and gained so much weight.
No matter what I do I can't loose weight and after all the steroids that didn't help.
I try to keep as active as I can be everyday is different so I have learned how to survive with Frederick.
I am in control of my life as long as I don't allow myself in self pity. There has only been a few times that I have been ready to throw in the towel but that made Frederick so happy as my muscles beat me up.
I hardly ever have a poor me day and having a very active grandson who is a natural at sports , school work soon and also my brother Mark with his legs an ulcer has opened up again and have to be so careful as he could loose his legs .
I only do as much as I can and just start each day over again.If you allow everything to upset you,you can't function so it is a learning process to find that fine line and do only what you can.
Blessings

It is finally raining here all rain usually going around us but I still feel it.
I am facing again more challanges as my meds are still funky and it is harder to control the tightening and spasms of my muscles .I stay just close enough to that fine line to make sure that Frederick's full power doesn't come out but sometimes you have to make choices to help other people and going to IN and back in 3 days was something I had to go to make sure a friend would be ok.
We all come to these choices and we are so much a world of only look out for ourselfs that you forget what you should do.
I will always be the helper,giver, caring person that I have always been and that is something Frederick and buddies can't take away from me

Chaos

Well my life has been turned upside down and in and out.
I drove to IN to get JD and her Mom wound up driving back a 26th ft u-haul and now to get her moved in and life for JD should get better.
My home is a mess as putting down hardwood floors and still have to sand and seal.
One way to clean out and get rid of stuff.
Once all done I will have a clean house and will have great floors as bought flooring from a basketball court that was being tore up. I still recycle and got thicker floors than planned and alot cheaper.
Once I get Frederick back on track I can start doing the things that need doing .
John is now 9 and starts school the 25th. He got all the electronic gadgets and games he wanted.
I will be writing more soon as I will be starting a new journey with my Dystonia and all I can hope for is that I don't wind up in a scooter but I will keep going as long as I can as DYSTONIA needs to be learned about.
Blessings
Vickie Ann

Changes

Well all is set and I will be leaving to go to IN to get JD and her stuff back to TX .
JD runs my website and she plays with it at will as I don't deal with computers very well.I have also got a new laptop that I guess does everything.Oh Well I will have to learn .I also got a new phone as my LG was over 2 years old and had seen better days I even went Bluetooth I am learning day by day.
AS long as Frederick stays somewhat nice I should be ok with the trip.But because Frederick doesn't like change he could be like a typical man and throw a monkey wrench right into the middle of everything well I have a few things that I can do to stop it so I am onto his tricks
August and September are going to bring alot of new things to my life but I know it is things that I need to do so no one will suffer what are PCP's are missing and DYSTONIA will be on all lips
Blessings

Lemonade

When life gives you lemons you make lemonade and go on but sometimes it gets to the point that you are just sick and tired of doing it.
I am at the point of being so overwelmed with all that is happening in my life that I just want to curl up and hide where no one can find me.
This happens to even the strongest person but someone with no outlet for help,no sounding board, family,friends, or faith you feel like you are lost at sea..
I don't swim and my life line is a ladder that is in the water and I have kept my head above water so far but as each days comes to doing what I need to do I am tired and I feel myself slipping .
I have a huge foundation under me and I know when each foundatiion was made. But either I am slipping off or the water is getting higher.
Each foundation is a ladder rung and even though they are wide and solid,I know what my life mission is and I am being pushed off as my enemy does not want me fighting to bring an end to movement disorders.
I know when someone is having a bad day and know when my friends are hurting ,I find their strength for them so they can fight.I am constantly getting strength so I share until they are stable on their foundation.
Life is full of good and bad. that is all part of living but you have to equal out everything and make your own foundation.Only then can you take everyday that comes and keep building your own foundation.
Material things are not important, keep the special things but declutter your home and mind so you can focus on your foundations.
Blessings

July

Another month has flown by and as its get closer to the way that my life will be changing as I open new doors for Dystonia Awareness I am still trying to adjust to my meds
The Lyrica has helped so much with my nerve pain but it is affecting my eyesight and if I have to choose I will go back to the nerve pain. I take the highest dose of Baclofen 80mgs a day and that could take out my liver at any time and having already had my liver close to shut down once it could happen again.
I don't dwell on my Dystonia but live each day as it comes as never sure what I will wake with so as I do each day I will make it through it .
Find that strength that is inside you and go with it.
Blessings

sleep

As many will tell you very hard to sleep with any muscle or nerve pain tonight is anotherone of the endless nights and it's only starting .
No matter what you do or extra pills you take the pain just seems to move with you.These nights are hard as you are tired and your body just will not settle down.
I have learned not to fight it. Read,play card games, write, or do whatever you can to try and stay as comfortable as you can. If you fight against it the pain will only get worse and that doesn't help anything.
You just have to take each day and night however way it comes and a better day or night is just around the corner.

Which way to go

I am at the point of which way am I to go the easy way or the way of keep making the phone calls,letters,and everything else I have been doing to get Dystonia Awareness out or just quit as everything is falling on deaf ears and blind eyes. NO one cares anymore and with everything happening in peoples lives all the people suffering from Dystonia but being told to go home and take this pill you will feel better has to STOP!!!!!!!!!!!!!!!!!!
I have never been one to quit but after having Dystonia as long as I have my brain is aging and I feel Frederick coming into more muscles and I fight everyday to keep him at bay
People need to listen and learn and put someone else's needs before their own.
Today is Father's Day and at a very young age the motto in our home was "no work no eat" and "to buck up"Well I'm Bucking up and I am going to break down doors as there are so many that are or will be going through the nightmare of Dystonia and it needs to become in the same league as Parkinson's so there is a central place that people can learn and help one another instead of hiding or only helping themselves.

June is here and so is Frederick

Well time is flying by and here is June .
I am busy with doing everything I shouldn't do but what do Drs. know
I am lawn mowing not good as my mind comes up with the strangest ideas( and no it's not because of an ice cold beer after mowing as not allowed beer ).
I keep myself active as I guess I enjoy my muscles spasming out of control in the middle of the night ,my nose on my ear, and my left foot twisted to the left.I think there's a name for enjoying pain but I can't remember right now .
Everyone tells me to slow down rest Are they nuts ? If I slow down the Dystonia wins of course by moving the Dystonia wins also.
OK if Frederick wants a fight he's going to get one as I'm not ready for my purple wheelchair!!!!!

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