Busy, Busy,Busy

I was going to start writing more and my does time fly when you are having fun.
Did you hear the groan .
I moved wrong and took out my right knee which is my good side (hear the laugh)
Life is always fun as your whole body takes the toll with Dystonia or whatever you have you have to adjust your life to how your days are.
You have to relax and go with the flow ,have you heard this before but don't believe,
the more stress you subject yourself too the more muscles tighten and boy can my muscles tighten.
One thing I have learned is no matter what you live with in your life you have to let go of the what ifs as you can't go back,grieve if you have to but never forget what you have as no matter what is done you maybe ok with treatments for awhile but nothing can fix your brain.
Research, don't let anyone tell you the right treatment look for yourself, think for yourself take control.
I have been on meds since 1985 and have gone through all kinds of wonderful side effects, including turning yellow, and I'm not ready for Botox ,maybe as I have talked to too many that have had side effects and DBS is not for me.
Please research and not listen to people that might get negative with your decisions as it's you you need to take care of not ones that are giving you advice.
The one thing I have learned all of us have our own story .All of us are different and isn't that great.
Blessings

Life changers

I have taken on a new job of being a crossing guard for John's school .I was just going to do 1 week and within 2 days I'm now morning and afternoon for the rest of the school year.So much for the cup that John got me for Christmas that said"note to self,Stop volunteering for stuff.
I am a volunteer and always have been . Being raised in northern N.H. and my Dad teaching us that volunteering is as important as giving .We always had a Lord's Acre Project going.
When Frederick Dystonia came into my life I had to stop so many of the things that came natural.Hiking the mountains was over but volunteering was not.I couldn't bake but I could call people and get donations.
I could no longer raise chickens from chick to freezer and yes I did everything, I am country.
But I could help wherever I could.
Whatever has happened to you Dystonia,PTSD,or whatever don't just stay home and do nothing someone somewhere needs you.
My life changed from being so active to barely moving but I am winning as I have learned to listen to my body and rest as needed but still not allow "Frederick " to win as if I do I may need YOUR VOICE on the phone.
Blessings

I enjoy my life so much and always try to find something good each day.
But days like this will bring the strongest person down.
It's cold today and Dystonia is giving me a hard time.
I have 4 back braces and it's always fun trying to see which won't drive me nuts when put on.Between spasms and twisting my skin crawls.
Dystonia is bad enough but all the stuff that comes along is worse.
Not everyone will get the domino effect but some do so they will understand where I'm coming from.
My joints are tight, nerve pain, neuropathy all not fun .
One thing I have learned is take each day as is comes,don't get upset as tomorrow will be a better day.
Blessings

New Beginnings

I have not been on for awhile as got some nasty side effects from meds so am weaning off them.
This time my head and left eye took the blunt of the pain.At least it didn't bother my balance but double vision isn't much fun.
I am still having headaches and realise that will be for awhile so luckly I have learned to take everyday as it comes.
I'm not driving and don't miss going where I don't need to go.
I am going back to what I first learned when Dystonia came to my life.
You have to listen to your body and don't overdo as that doesn't help in the long run and it took me awhile to learn that and many nights of Frederick Dystonia twisting my body around.
I am redoing my life. I am cleaning up the clutter in my life .
I am working on John's school papers and making folders of all his special ones.John is in 4th grade and time does fly .
John will be 10 in August and when he was brought home I put my life on hold as he needed my attention.Guess what I didn't miss all the excess stuff that I had been doing.
I am going back to that I will continue to do stuff for Dystonia Awareness as so many need it but I'm not going to travel.
All that I need to do I can do from here and this way I can control my muscles as much as I need to as I don't want to take any meds for awhile.
This is my decision and I will try to go as long as I can without meds
Dystonia is not friendly but as I have to live with it I have had to make it my friend.

Finally got rain and strong winds Squeaky(my cat) landed on my lap.
I tried to get some more sleep but I think I dozed on and off, like most nights.
Maybe its me but it seems somethings are harder for me to do. The other day I got out of chair without using my hands and boy did my knees protest.
I do alot of things that I shouldn't but it's my body that pays for it and if you don't move sooner or later you stop moving.
I will keep moving of course my left side Frederick never seems to stop it just depends where he wants to be a pest. Hardly ever in the same place twice.
Blessings

Trying again

Well I was going to start writing more but then a sick boy so John has been out of school all week sinus infection cough, fever the whole bit.
So I didn't sleep much as that is all you hear is a child breathing,it's a Mom thing even though some Dad's do this also.
Just made for a long week.
I just keep puttering getting things done for Dystonia awareness, getting everything in order and cleaned up at home .
I didn't know it took so much work to seek simplicity, to get your home clean of years of stuff you have saved but then don't know why you did.
I don't need alot of the stuff that is in this home and if I haven't worn, seen or used in a year it's gone.
I still have all the pictures to go through but that will come with time.
As long as I don't overdo it will get done.
Blessings

Back in gear

What a week!!!!!!!!!!!!!!!!1
We were 80 then dropped 40 degrees to freezing rain, sleet,ice and freezing fog.Today will be almost 70.
I have had an issue with coffee .I dropped a whole cup at John's school and decided to stick with oj (carton+ straw). Saturday the day of meeting my coffeemaker died atleast I got one cup even if it was a little groundy!
I got a new maker and that died so took that back .Now enjoying my coffee getting back to getting up and moving more as tired and weather didn't help.
Today I am going to rake some leaves and just enjoy being outside.
Blessings

Even though I have been tired I still always try to be there for John and today he made me even a prouder MomMom as he was named a Proud Panther for the 3rd 6 weeks of school.
He won the award for Caring .
I have tried to teach him to care about everyone because that is what is right. John is only 9 and in the 4th grade youghest in his grade every year and in 2nd grade had the year end virtue of intuitive as he always seemed to know who to help and John always smiles although not always at me when rules are being enforced.
I hope all children learn that someone cares for them as there are way to many that don't feel that anyone cares.
ALWAYS remember there is someone worse off than you.
Blessings

Today has been a puttering day a little of this and a little of that. Then football watching so figured I'd better get this done between games.
It really is a goal to write everyday.
With a movement disorder you have to be pro-active in everything that is happening to you.
From the child to a serviceman when muscles are involed your mind has to be there also.
You have to write down, take video's of the muscles spasming or whatever they are doing so you can show dr. You have to STUDY yourself so you can tell and show what is happening to you.
Blessings

The weather has gotten a little warmer so I'm moving a little better.My body is tired hauling around my spasming left side but I still don't let it stop me just have to rest more and pace myself.
I have still been able to rake leaves and pineneedles and take to recycle place that makes them into mulch so I still stay outside as much as I can.
One week until community health fair and all looks good so far but I have to be careful that I don't get too wore out or the spasms will be real bad and don't need that.
I have a life that I am happy with and can live with .I learned along time ago to accept what has happened to me and that is why I'm still moving I won't let Dystonia win I WILL ONLY GO DOWN ON MY TERMS.
Blessings

Stress

I have been quiet for awhile as I was dealing with new meds and with the holidays I was tired and knew taking it easy is the best for me.
After many years living with Dystonia I have learned stress is the greatest enemy to me so I have closed myself off. You learn to project yourself as you don't want to be hurt or put into a stressful situation.
With me coming out more about Dystonia I am also keeping closer to home so I can recharge, so that I can do what I need to with my family and Dystonia.
I have done really well with seeking simplicity and that means to me all non-vital things in my life are gone.
I had so much stuff that wasn't used, worn, watched, listened to, or looked at anymore. When all that was gone what a difference.
Only you can decide when stuff is no longer needed in your life and this might even include some people.
I learned along time ago that family and a few close friends is usually all that is there for you.
Take care