Happy New Year

I did my usual NYE's thing I slept through it.
Dystonia likes routine so I have certain bedtimes and wakeup times and I don't vary from this very much.
This is way I tell people with D to balance their life don't push 8 hours and expect that D will understand .You need to take your meds at same time each day, so much moving to resting time also.It took me awhile to learn this but when you realize by pushing yourself the only person you are hurting is you.
I don't mean you stop doing what you love but you look at what is important to you.
I no longer make king size quilts,do crafts, grow all my own food,raise chickens because it took so much out of me .But,I volunteer at schools and keep busy in many different ways.
Don't quit just rearrange your life. D rearranged my body so I found things to do that work with the muscles I can use.
Make a difference in someone's life that you might not help if you didn't have D.
Keep your mind open and don't allow D to rule it.
I went off all my meds last year and at first it wasn't bad as even though I was weaning the meds were still in my body. This summer with all that heat that TX had I detoxed my body and if I didn't live by the words I have written here then I would be using a walker or even worse a wheelchair.
Take each day as it comes, no regrets at the end of the day.
D is not a death sentence just a change your life and enjoy each day sentence.
Blessings
VA

New Year for learning.

As each year comes I keep saying I am going to write more on this blog but life always seems to get in the way but this is the year I will be writing alot more.
Last year Frederick Dystonia took a turn for the worse and with my doctors help I weaned off all meds that I could live without making the spasms really unbearable.I am not saying I am cured but I am still walking even if I am really leaning to the left more.
I feel great right now even with the ice storms and snow in the Dallas- Fort worth area.
After living with Dystonia for over 25 years the one thing that I can tell you is Dystonia is a constant learning experience.
In 1991 when I was told I had Dystonia I got a paper with 2" of information on it about Dystonia. I had to hunt to find the Dystonia Medical Research Foundation (DMRF).
I became an area contact and phone support for people to be able to talk to others with Dystonia.The phone and pen pals was all there was for people to connect. Now there are many forums, groups and people with Dystonia that you can find on Facebook .But there is still so much more to be done.

# 1 thing I learned it doesn't matter how many people you talk to that have Dystonia none of us are the same .We are all unique.
This is why learning is so vital to people with Dystonia and your doctors. Read all you can about Dystonia, watch all shows that have Dystonia people on it, talk to others. Take all the information to your doctor and discuss it, something might be right for you.
If you have a doctor that has blinders and earphones on get one that will see and listen to you .

Above all keep an open mind, you don't have to believe all you hear but if you don't look,listen and see you will never know what you missed where Dystonia is concerned.

Time doesn't stand still

Again time has flown and some things change and others don't.
I still have Dystonia and and still no cure,but I am still walking even with the Frederick Dystonia beside me and that will not change as long as I can fight.

I can look back and see all that I have lost from having Dystonia but also can see that with Dystonia I was there is times of need for my loved ones which won't have happened if I was still on the carnival/fair circuit.

It is a choice of what you still need in your life with Dystonia and what you don't . By searching you can find out what is needs and the things that are not needed,shed them like leaves. Start rebuilding a life with Dystonia beside you not against you.
Blessings

Snowed in

Boy I haven't been here for awhile. Time flies when you are having fun.

Not sleeping as snow again in TX and this one is breaking records.Well as long as it's not me it breaks.Had my share of ER's in N.H. from snow mishaps.

I have kept myself busy and out of trouble the last few months.

Walking alot and going to do the Dallas marathon on 3/14/2010.
Will go as far as I can but training hard with this weather.

But you always have to have a goal.
What is yours?
Go for it!

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