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.