Wednesday, December 16, 2009

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:/

Tuesday, December 15, 2009

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.

Thursday, December 10, 2009

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

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

Wednesday, December 9, 2009

New direction

When I first started realizing that something was seriously up with my body and wasn't going away, I was sooooo relieved and thankful that it was happening to me and not one of my kids. It is something I told myself on a regular basis to stay positive.

However, my particular type of dystonia is genetic. What? Oh, man, that sent me into quite a bit of despair for quite awhile. Do I want my kids to go through any of this? No way. It has caused me to be fearful, anxious, worried, etc...
Is any of my worrying or being fearful for them helping them? Absolutely not.

What has happened is my focus has changed from simply trying to get from day to day with a slumped over weak manner about myself to -- wait a minute! No, I am not going to just take this day by day to wait and see what will happen. My focus now is going to be on fundraising and raising awareness so that if my kids, or anyone elses kids, do have to face this frustrating disorder, maybe in some way I can help to make it easier.

I am definately open to hearing any and all suggestions or thoughts anyone who happens to stumble across this blog may have.

I absolutely love, love, love this time of year. Hope all is well with you.

Tuesday, December 8, 2009

Mirrors -- ugh

We recently moved to a house with much needed extra space. Apparently with the extra space came some extra mirrors because sometimes I happen to look up as I walk into my bedroom and catch a glimpse of myself walking. It is a shock at times to see with my eyes the goofy way I am getting around. After the initial shock wears off, I have to laugh because the stares and sometimes laughter is starting to make sense.

When I am out in public there are times I cannot seem to get out of someones way fast enough. Most people are very generous and nice, but there are those few who would rather knock me over than just hold back a few until I can move out of their way. Sometimes I have wanted to yell out "I used to be you. I used to be able to walk just like you. This could be you, you know." I am glad I am not just like that anymore. I hope and pray I have never been so impatient to someone with a cane, etc...but I have been the one in a big rush no matter what. I always walked in a hurry and rushed everywhere I went. I am really glad I am not able to do that anymore. Well, sometimes it would be nice, but the fact I am getting around is all that matters.

It is the Christmas season and I know I will face some of this when I am out and about. People can stare and even laugh if they want to because I wish they could also figure out to slow down, seriously. Most of what we all rush, rush, rush around for is just not that important. So I am going to do my very best to smile at the rude people, oh and I will smile at the nice and curteous ones also.

Monday, December 7, 2009


Well, for some reason I just have not been able to write on this blog lately. I do not like what I have written so far for one thing. It is all true and every bit of it from the heart, but yet it doesn't seem right when I go back and read it. Maybe I will not go back and read any of my posts. I can only write what is true for me at the time, and then avoid hitting the delete button later. It is what I was feeling then so it is true and still helpful for me to go and see later; right? Who knows.

The last post especially, writing how I love my wheelchair, can't wait to use it again -- yuck! Who am I kidding? Everyone who knows me knows I don't have it all figured out and wrapped up into a neat little package as I feel I am trying to say in my message. Oh, it's all great, blah, blah, blah, and well, it just makes me a little sick to my stomach now. Yes, I truly believed every word of it when I wrote it, but -- wow, even that makes me a little sick to consider for some reason.

I have been focusing on staying off the whole "dystonia" situation and just doing what I got to do to get along just like every one else in this world does. I have to say that some of the things I have been realizing about myself, and the way I operate are a little disheartening. I have come to realize that I have been using this whole dystonia thing as a HUGE excuse for basically being lazy, inconsiderate, unreliable, etc... the list goes on. I know I am a good person and all and I am not trying to beat myself up or cause another "woe is me" moment, but damn, excuses aren't working for me anymore because I do not have the energy or the ability to run around like a chicken with my head cut off to fix them. Well, this has caused me to (forced me to) figure out a new way to do things, and in so doing, I have discovered some of these negative traits.

As painful and embarrassing as it is to admit and look at, I am so glad to finally figure out why things have been so hard for me all along, why I haven't been able to move on. Yes, I do have many days I have to cancel going somewhere, a commitment I have made, or I do not get anything done due to dystonia and the day to day aspect of dealing with it. I know that my family and friends understand that I may not feel well an hour before our commitment, and have to cancel. However, dystonia is not an excuse for the times I have been late somewhere and just always expect people to put up with it because, you know, "I have dystonia." Who cares; right? We all have our things in life to deal with.

Dystonia, by the way, is a word I am sick and tired of writing, reading, saying etc...working on it, but anyway -- excuses, excuses, excuses. I have been using them to basically give up and just float through life one day at a time with no real thought to my future.

In my previous post I wrote that I want to know about the hikes and trips my friends and family take. Oh, give me a break. The reason I may have not been told about some of these things going on is because I haven't been a good listener much of the time or a good friend. What I have been is preoccupied and basically self-absorbed. I am the reason I have been missing out on things, not anyone else. I finally can see things a little more clearly.

I guess I just get angry at myself for giving up so easily, for not figuring it out much quicker that there is life after dystonia and it just seems to get the better of me on some days and well, that really frustrates me. People have, will, and are going through so much worse and unimaginable pain and circumstances. I totally get that. My heart aches for these people and is another reason I find my difficulty with not just moving on sooner so annoying.

I want to express my deepest and sincerest appologies to all of my family and friends, especially my husband and kids for just taking a back seat to things and basically taking the easy way out for these past couple of years or so. Thank you from the bottom of my heart for always being there, for truly caring. My family knows the days I have not answered the phone, and just purely taken them for granted during this. There is just no excuse for that and I am sorry. Jim, thanks for all of your patience, long talks, and your amazing patience with all of this.

This very strange disorder has caused a huge life change for me, and also my family, but I know deep down I have let it be my excuse. It has been painful for me to look at honestly.

I recently learned alot from another person who has dystonia. I saw her on the Oprah show the same time Micheal J. Fox was on about Parkinson's Disease. I was interested in what she had to say because she was so positive on the show. I read her blog and emailed her. She emailed me back which actually surprised me. Rogers Hartmann is a patient/advocate. Through many emails and messages back and forth, I have learned so much from the way Rogers just carries on no matter what. She works full time and also is working hard to raise awareness of dystonia and fundraising, etc...she does all that she does while in pain, etc...but also truly cares about other dystonia patients. She recently sent me a book called Loving What Is. I would definately recommend this book to anyone. This book has really helped me to see things for what they are in life.

So this is a shout out to Rogers. Rogers, thank you so much for your time, thoughtful words and basically, for being an advocate. What you are doing is making a huge difference. I wish you all the best and hope you are feeling well.

I am very excited about my future and the future of my family, but I have finally learned to live right now, this very moment. It feels a lot like freedom to me. Love you all and thanks for all of your support and patience.

Saturday, October 24, 2009

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.

Thursday, October 22, 2009

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.

Wednesday, October 21, 2009

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.

Monday, October 19, 2009

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.

Friday, October 16, 2009

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!