Read at your own risk

I decided to write this blog as a way for me to let go of thoughts and feelings I have as I go through this journey dealing with dystonia. I do not write my thoughts here to try and get sympathy, attention, etc...I am writing this blog for myself, and for anyone who gains anything at all from reading it.

I have recieved some wonderful, heartfelt messages already since I have started this blog. It surprised me at how deeply my family and friends feel about the words I have written. I have been concerned about writing certain feelings and/or experiences here because I do not want to worry or upset anyone.

The purpose of this blog for me is to be able to look back on a past entry and learn from it. I can see, okay, I am taking things way too seriously, etc...

What I will learn from this remains to be seen. When I write something I have gone through on my blog, it makes me sad to think that anyone I care about is using any energy or time worrying or being sad for me. By the time I spew it all out on this page, I have already thought about it, lived through it and have moved on so any time worrying about me is wasted because I am probably laughing with family and friends or eating icecream right now (my favorite medicine).

I always will appreciate all of the love and support I have recieved from everyone. I know who has my back and I do not want anyone I care about worrying about me. I do not want anyone to feel guilty for living their lives and being sad because I am at home. The only thing keeping me from doing more is me. I still want to hear about the hike you went on, or the family trip you took, the marathon you ran.

I see writing my thoughts down as such a positive thing. I have included a picture of myself that has been on my refrigerator for several years. Jim took it and put on the fridge because he likes the picture. It is my "pre-dystonia" picture. When I look at that picture, I do not feel sad. I think, wow, I am smiling for all the wrong reasons there. Well, that and "wow, I need new sunglasses." I do not want to go back to that "me."

I do not feel alone. I have my family and friends and all of their wonderful support and I have God. Not a day goes by that I do not truly thank God for everything in my life, including and most importantly, dystonia, without which, I would not be who I am today.

My friend the wheelchair

After moving to a new neighborhood this summer, I have been wanting to go for a walk and check it all out. That was almost 4 months ago and I haven't walked beyond the end of the court. I realized I have been in a slump lately and kind of blah and not really doing much of anything.

I saw my wheelchair sitting where it has been parked since we moved and completely neglected. I figured I am doing so well with walking I don't need it. Wow, I managed to not need that darn wheelchair, yeah, me. The truth is I didn't need it because I completely quit living life. I have been staying in the house most days. I have quit going out and just enjoying the weather, etc...

I decided that was it and I am going to start living again. I don't need that dang chair though. I went about trying to go out and do things and quickly realized I do need that chair for any walking beyond a few or a couple minutes. Well, I think that threw me into a depression for the past few weeks that I didn't even realize I was in until I did a lot of soul searching.

Today I got my chair out, which I am very fortunate to have. Many people do not have a wheelchair at all and desperately need it. I am fortunate enough to have my power chair. I always new if I had a wheelchair I wanted it to be yellow. Yellow has always been such a cheerful color to me. I love it. So this is me on a walk around the neighborhood. It felt so good to get out in the fresh air and cruise around.

I am going to look at my chair a whole lot differently now. It is a wonderful chair to me and I look forward to spending a lot more time with it as I jump back into life again. Jessica took this picture of me while we were out checking out the neighborhood.

happy surprise

I have always loved yellow smiley faces. They are so cheerful. This was in my backyard. I think it is a really cool reminder to live each day with gratitude.

a great thing came from dystonia

Wow! I finally learned how to iron after all these years of doing it. I have always hated ironing. However, due to the pain I have been having with my right arm trying to turn at the elbow and extreme pain when using my right hand to hold onto things for more than a minute, I was forced to iron with my left hand today.

To my surprise, I finally learned how to iron well. I can not believe how much easier it is for me to keep the iron in my left hand and use my right hand to hold the dang fabric in place on the ironing board. I have always detested ironing and avoid it at all costs because of the never ending battle I always had with the shirt or whatever and the shirt always seemed to win. Hmmm. Who knew such a positive thing would come from my arm being difficult. And even that is doing better now as the muscles have calmed back down. Yeah!!

So today is a very optimistic day. I just wish Justin would feel better and not have the flu right now. He is a trooper.

Rough day -- positive evening

Today was a difficult day for me. I went out to do my grocery shopping and ended up having to call my 19 year old daughter Jessica to rescue me. Some days are great but today I couldn't walk enough to push a cart. It was frustrating to me that I had so much I needed to take care of before I picked up my son Justin from school. Jessica met me at the store and I rode in the motorized cart and she helped me out. She is a true blessing.

I decided to start a blog because I have so much on my mind and I am trying not to bog down my family with all of my thoughts and emotions in dealing with this emotionally exhausting disorder. Usually I try to keep things very positive, but today that is not the reality. I do feel very good about starting this blog because even if no one else reads this, it feels good to just put it out there, somewhere besides spinning around in my head. I feel this is a very positive way for me to let it out. Life is good!