Well Wishes Your Way

Someone special is weighing very heavily on my mind today and I feel compelled to write about her. Years ago when I was about 22 or 23, I worked at a Payless Shoe Source. One day a family came in to the store with a little girl about five or six years old with long blond hair. They asked me to measure her feet for her so she could get some shoes. I was just going through the motions. I knelt down in front of the little girl to measure her foot. As I was looking down I asked her a question. I do not remember what I asked her.

The next thing I heard was one of the young ladies with the little girl said;

"Oh, she won't talk to you. We just got her. She's a Foster Child and she won't talk."

I looked up at the little girl. She looked me right in the eyes. To this day I have never seen a more pained look, a more disheartened look on anyone's face. I measured her foot as fast as I could. I immediately ran in the back room and started sobbing. My reaction surprised me because I had never experienced anything like it before. I felt her pain so strongly. My coworker was taken aback at my crying but I just couldn't seem to help it. I felt such strong sadness for that little girl.

I pulled myself together and when I went back out to the register, they were standing there paying for her shoes. The employee next to me said;

"Well, she is lucky to have you guys." And I said;

"She deserves to have them."

I was so upset. That little girl deserves to be loved and cared for. It shouldn't be about luck; should it?

I have thought of that little girl numerous times throughout my life. I have wondered how she is or if she is ok now. I think she would be about 22 now, maybe. It got me to thinking about people and how we interact with each other on a daily basis. One never really knows the impact they may have on another person's life in what seemingly is an ordinary day running errands.

To the beautiful little girl at Payless Shoe Source that day, I hope you are well. I have prayed for you throughout my life. I was honored and privileged to have met you so many years ago. XOXO

Debbie

BEAT DYSTONIA Advocacy Call

Hi all,

BEAT DYSTONIA is hosting the next advocacy call Sunday, March 14th at 11:00 a.m. PST, 12 p.m. Mtn. time, 1 p.m. CST and 2 p.m. East Coast time.

Please RSVP to beatdystonia@me.com.

Out and About

Here I am out and about with my Beat Dystonia
t-shirt. I have been feeling better lately, physically and emotionally. This journey with dystonia is always teaching me important things when I pay attention.

I look at this picture of me "out and about" and think my outings maybe should be more exciting than the grocery store, but Jessica and I had a lot of laughs while there. She is always fun to shop with but she is very busy and it doesn't happen often so we try to make it fun. She is good at laughing with me during the rediculousness of me juggling cane, motorized carts, and long breaks on the first bench I can find.

After reading Rogers Hartmann's blog she had mentioned lying down anywhere, anytime, on any floor if she needs to and I remembered that and came very close to lying down in the dogfood isle but Jessica talked me into going for the bench a few yards away. And we laughed, seriously, on the way there because it is just that goofy.

Anyway, there is an amazing story on www.lifewithdystonia.com about a little girl with dystonia that Beat Dystonia/Rogers Hartmann spent time with and helping her get through a tough appointment. It is a nice story of advocacy.

I am still working on fundraising. My family and I are excited to be focusing on something so positive because there are so many people who are still undiagnosed and suffereing needlessly, and as always, a cure and better treatment would be something to celebrate and I want to have that party.

I hope anyone reading this is feeling great and having a wonderful day!
Much love,
Debbie

Yeah, I guess I was feeling a little sorry for myself when after a few errands, I couldn't walk anymore and felt sick. Jim went in the store for groceries. So yeah, I guess I was feeling sorry for myself and also guilty for not being able to help. I started thinking of all the things I miss such as going for walks. I miss being the one who helped other people with their groceries, not the other way around. I miss being able to walk, just plain and simply walk. Everywhere I looked as I sat in the truck waiting, and feeling guilty for not helping, I saw people walking, walking, walking together and talking, etc...so yeah, I will admit I sat there and cried. I cried with the loss I felt. It just kind of overwhelmed me. And I thought, "Okay, Lord, what are you trying to show me here?" I was pleasantly shocked that I had that thought because while I have been working on my relationship with God, I was a little happily surprised I thought that. Anway, I thought that and Jim's face was in my mind. All I know is I saw his sweet face. Here I was feeling so sorry for myself and all set to tell him when he got back how sad I felt, and how I can't walk, blah, blah, blah...and then I realized, I have a great guy here. As I looked around, I realized he had left the truck running so I wouldn't get cold and he had turned the radio on. He is amazing and wonderful. That is what matters here. I felt a great sense of peace come over me and I thought, okay, "I get it. I get it." By the time Jim returned I had pulled myself together. He was very happy about his superbowl food and all he was going to cook which I thought was cute.
There are times when I lose my balance and if my Mom happens to be standing there, she grabs my back pantloop and walks behind me. This has always made me laugh hysterically, right then and there. I can be bent over and in pain and that will make me laugh every time. So as Jim helped me to the couch, he grabbed my back pant loop and held them up and we were both were laughing hystercially. We are learning not to take things so seriously. It's just a process I guess. I like that I am able to get to the positive side of things much quicker than I used to. It is all good!

Really great shirts/ Really great cause

I have had some questions from some about how to help with fundraising. I know things are tough right now for a lot of people.

One really great way to help is to buy a BEAT DYSTONIA
t-shirt. 100% profit goes to dystonia research.
T-shirts are only $16 each!

Anyone who is interested can go to http:/www.lifewithdystonia.com

Awww -- dystonia

Dystonia has been kicking my butt these past few days. One of the hardest parts of this for me has been the constant up and downs -- I can walk, I can't walk, oh, wait, yes, I can, nope, wish I brought my wheelchair. Always thrilled when I can walk and so glad I can but it is a judgement call on some days and some days I get it wrong.

I have been doing more, being active and having more fun. It is all good and healthy. The frustrating part is that the more I do, the more symptoms kick in, the more exhausted, pain, burning muslces, diffficulty getting around. And yet, when I take it easy every day so I do not have an increase in symptoms I tend to get bored, restless, boring, tired, depressed...

Sometimes trying to find just the right balance seems so impossible and exhausting. My body wants me to crawl back in bed and sleep all day because it is so tired and mad from yesterdays activities, or maybe just the fact it's cold outside, who knows. Sometimes I think my muscles decide to all tweak out simultaneously just for the fun of it.

This is a negative post and hopefully nobody decides to check in today. I have a long list of things to do today and I am going to do my best to do them.

I know I am extremely lucky for getting around as well as I do and my heart goes out to those who cannot, whatever the reason may be. Sometimes it just feels good to vent and then move on. That is what this is for me. I am venting while I drink my coffee.

Feeling better now. I am off to start my day.

Fundraising thoughts

Hi all,

I am currently working on ideas for fundraising, etc... as mentioned in my earlier post. In the mean time, however, if anyone out there has anyone they know personally affected by dystonia or just wants to donate to a really great cause, the organization I personally trust is BEAT DYSTONIA.

Rogers Hartmann is the founder and has a great board of doctors, etc... who all work together to decide where the money should be spent; science!

Please check it out at www.cftexas.org/beatdystonia

This is a non-profit organization and Rogers Hartmann is a dystonia patient.
Thanks!