Tuesday, March 25, 2014

Slice of Life, March 25th-- "The Dystonia Slice of My Life"

This is a part of my life that is difficult to slice about, but it's a huge slice of my life. Although it's hard, I feel it's important. I also I know some of you will be able to relate to my story. That, too, makes it worth sharing.

A three and half years ago I was diagnosed with a disease that changed my life. Since then, it has become a constant "slice"-- a daily "slice" of who I am.

It's called dystonia. It's a neurological movement disorder. That means that a part of my brain sends messages to my muscles to move all the time, with or without my permission. The movements can be tremors, sharp jerks, or sustained muscle contractions in different directions. My kind of dystonia is called segmental dystonia, which means that it affects 2 or more parts of my body; for me, that is my shoulders, neck, jaw, and sometimes my right arm. It is a very rare disease, but not unknown. You may know someone with a kind of dystonia, or you may have never heard of it at all.

There is no cure, but there are treatments that have helped me tremendously. In addition to oral medications that help with symptoms, I receive injections of Botox (yes, BOTOX!) into my affected muscles by a neurologist. This weakens those deep muscles, so that the movements are not as strong and easier for me to control. It's been an amazing help to me. I get the shots every 3 months. Without these treatments, it would be impossible for me to work or live even close to a normal life.

While the treatments are helpful, there are challenges each and every day. I've had to make some adjustments that will be familiar to many of you with chronic disease.

There are no pain-free days in my life. It is a continuum, day to day, week to week, month to month. Some days it is like a constant background noise that is mostly ignorable, and other days it is so loud I can hardly think.

I am always fatigued. The disease is exhausting in itself, but combine that with the side effects of treatments, and I never have enough energy to do everything I wish I could. I feel guilty all the time because I can't keep up with what I want to accomplish.

It is unpredictable. I never really know what kind of day or week I'm going to have. It's hard to make plans because of this. It can be really disappointing when I think I can do something, and dystonia has different plans.

It requires so much rest to keep up with a normal schedule. Outside of school activities are often the first to go. Anything out of my "norm" can require days of recovery. I'm still learning to balance.

It is frustrating. I can't do what I used to be able to do. I'm limited. Boundaries are hard to adjust to, and I'm learning everyday how to live with them.

I've had to change some goals. As much as I hate it, some doors are closed because of dystonia. I am finding new ways to define success and feel accomplished.

I feel misunderstood a lot. What might come across as grouchy or out-of-sorts, is usually just pain overwhelming me. What appears as laziness, is actually me recovering so I can keep going the next day. I want to be known as me, not my disease, so I hide as much as I can. Sometimes this backfires and people make incorrect assumptions. I blame myself for this, but I haven't found a way to fix it. Yet.

As hard as the above are, I've found some positives I would never have known without dystonia and I'm thankful for that. For example...

People are kind. I have met more people who are understanding than the other way around. When I am up front and honest with people, they accept me for who I am. They want to understand and help. This says a lot about human nature.

I am strong. I didn't know it before, but I have a willpower of steel that keeps me going. I've learned to appreciate this about myself. I'm proud of how much I've overcome, even if I still have a long way to go.

A positive attitude and smile can make all the difference. I know sometimes I am annoyingly positive about negative situations...I can't help it; it's just how I've learned to cope with life. I can't sweat the small stuff anymore. I refuse to let the little things get me down. I take life a day at a time. The good days are too precious too waste with negativity.

Laughter is medicine. I love to laugh and make others laugh. It's part of how I get through each day. Sometimes I search for things to laugh at, even if it's myself, to bring some brightness to a hard day.

I'm not alone. Family, friends, and co-workers have all stepped up to help me get through some incredibly tough times. It sounds cliche, but I couldn't have made it without them. They know who they are!!

So, that's the dystonia "slice" of my life. I know there are many of you out there that can relate in some way or another. Whether it's you, or a friend, or a family member, most of us know someone dealing with a chronic disease of some kind. It's never easy, but together, it's bearable.


  1. I don't think I've ever heard of dystonia before, so first of all, thank you for the information. I am so appreciative of your honesty in this Slice, and the way you look at both sides of living with this chronic disease. I hope you will continue to write and talk about it, as trying to hide it must just cause more pain!

    Thanks for sharing your story today!

  2. Thank you for writing. I am glad that one of your positives is that people are kind. And I am also gald you recognize that you are strong. Your strength is amazing, as you share so well and so much about a difficult topic. What you have learned can help others facing similar situations. Thank you.

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  4. Thank you for sharing this part of your life. You show both courage and strength in writing about it, especially in the positive things you've learned. I was not familiar with dystonia before, so I learned from you today.

  5. Kathy, your courage and positivity emerge from the text and provide the reader with a slice of life that is unusual for most. Your walk is a difficult one but laughter, family, and your resolute spirit are the supports that help you live each day to the fullest. I understand your frustrations, your day to day issues, and your joys. I have transversed several rocky paths and through the power of medicine and faith continue to walk the walk. (Journeying... Blog Post =>http://joanneguidoccio.com/2014/03/14/journeying-toward-a-second-act/) Stay the course!

    1. II applaude you for sharing your journey with your disorder of Dystonia. You are a strong person & sometimes I am sure you get down about things but you always bounce right back. With your "not going to keep this girl down" attitude you will be just fine & are an inspiration as well. As far as the laughter goes, you know I am definitely there for you. You have lifted me up when I was down & I am happy to return the favor.

  6. I love the way you spoke of the daily struggles, and then turned to the positives - where you really focused. It takes courage to live with chronic pain with such grace as you do, I have so much admiration for you.

  7. This is a powerful post... well written and truly gives the reader a sense of your struggles but you also show how you have grown and realized the positives. Your positives are words to live by for all of us@