Sjogren’s Syndrome Awareness Month

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Sjogren’s Syndrome Awareness Month

April is Sjogren's (SHOW-grins) Syndrome Awareness Month. Sjogren’s is an autoimmune disease that attacks the moisture glands in your body. It is systemic, and I know quite a bit about it because I have it. It is not something I post about very often; I don’t want people to think I am a disease. Nor do I want others to worry about me or think I cannot do my job because of it.

You may have heard of Venus Williams, Shannon Boxx, and Carrie Ann Inaba; they all have Sjogren’s and live with it every day of their lives, just like I do. There are adjustments that they each made in order to live a great life, just like I have had to do. My body rejects and attacks my moisture glands; I take medication, some supplements, and drink a whole lot of water!! I carry a water bottle with me where ever I go. I do not produce tears very much, so I wear some special glasses to help me with the dry eye. I need them especially when I am outside, close to a fan, or near air currents. I use a lot of oils and lotions on my skin because it is dry. I have changed my diet, make sure I wear sunscreen, keep eye drops on hand, and get the rest I need. I have never canceled a gig because of Sjogren’s; I have, however, left the dishes in my sink in favor of a nap.

On average, it takes 6-8 years to get diagnosed when you have this disease. In my own experience, I had to keep going to doctors and telling them that something was wrong. I repeated the story until I finally found one physician that would listen to me. Having Sjogren’s has taught me to make myself a priority, to persevere, and be my own best advocate. It has also shown me that if you need tools to help you, you need to make those tools beautiful so that you will want to use them. I have some amazing water bottles, great glasses, and lovely hats!! I work very hard to manage this disease, just as many others manage their own health situations like RA, diabetes, or food allergies. I have also discovered that my attitude affects my management of this disorder.

Sjogren’s is part of my life story. I know you have had your own challenges, too, and those challenges are part of your story. You may even be in the middle of knowing something is wrong — don’t ignore that. I believe we actually know ourselves well and that feeling of pain or discomfort is a call to action. Believe in yourself enough to keep pushing until you get the help you need.

We all have to live with something; let us focus on the LIVE part.

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Stationery

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Stationery

I have a weakness for beautiful journals, notebooks, planners, stickers, pens… pretty much anything you can find in the stationery aisle. If they served dark chocolate and tea there, I would spend a considerable amount of my day gazing at the lovely items you can find laying on the shelves and hanging on the displays. There are bright colors, perfect points on pencils, fresh ink in the pens, clean unmarked pages; yes, I do love stationery.

I’m not exactly sure why I love new stationery; I certainly don’t need it all. Perhaps it is a symbol of a fresh new start. There is potential in those writing utensils and beautiful books. A new story can be written down. A thought shared, lyrics to a song scribbled, a piece of art blooms on the page. Yes, I think that is it. I see optimism and hope in that aisle, all the way from the on sale 50 cent notebooks, to the colorful sticky notes, to the $50 planners. There is a fresh new beginning there. Oh, and a new beginning deserves beautiful tools.

Why not start something new today? Get a fresh new notebook and a pen that makes you happy — and start. Sure, there will be mistakes along the way, you’ll cross some things out, and eventually you’ll get to the end of the book. BUT don’t worry, there is always a new beginning back in the stationery aisle.

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Irish Heritage

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Irish Heritage

This past weekend we celebrated St. Patrick’s Day. I sure hope it was a good day for you. I wore green, did you?

A fair percentage of my heritage is Irish, and I incorporate that heritage into my storytelling. As with many of us, I was not raised specifically in the heritage of my ancestors, but that doesn’t mean that I don’t come from history. It is up to me to learn about those who came before me. I am a storyteller; that is my profession, and as such, I am intrigued by the stories that were told in the countries of my ancestors. I’ve learned a lot of Celtic stories and I include them in my performances. I do not try to speak with the accents of the native lands and I am sure I would not give them justice. I speak with my own tongue, the one that belongs to me. However, passing on the ancient stories of my ancestral lands is important to me. It helps me to know myself and understand the traits I have.

I have a dream to one day go to Ireland. Oh my, I want to see that land with my own eyes. For now, I have the stories; I read them, remember them and carry them in the pocket of my mind… and I desire to share them.

What stories do you have in your mind's pocket? Share them with someone.

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Daylight Saving Time (cue yawn)

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Daylight Saving Time (cue yawn)

I didn't write a blog this week, I ran out of time...lost an hour...well, didn't really lose it, it was redirected.

I'm tired...seems like supper is too early...clock in the dining room is still an hour behind.

Daylight saving time...they say it was for the farmers, but the cows don't care what time it is...neither do the pigs...grass in the field doesn't either...I know this because I grew up on a farm...

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Marimba

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Marimba

While in Asheville, NC last week, I went to a Goodwill store. I very quickly noticed a lovely wooden instrument. You might call it a xylophone or a glockenspiel, but this is neither; it is a marimba. I know this because it says Guatemala across the front of it. The marimba is the national instrument of Guatemala. I didn’t realize that, but Google can be very informative.

There was no mallet, so I hit some of the keys with my fingernail. It sounded so pretty. The keys were smooth on the top and a little rough on the bottom; I thought they might be hand carved. I knew the platform it was on was handmade. I ran my hand across the keys and it was dusty. It had been a while since this instrument had been loved. "What is your back story?”, I thought, “Someone needs to love you again.” I wondered if it could be me. When I looked at the small end and saw the price, I said, “You are going home with me!” I carefully picked it up and put that beauty in my cart. It was two days before my birthday and I decided this would be a gift to myself.

When I got home, I brought the marimba in my house and got out some wood cleaner and a soft rag. It took a little elbow grease, but, oh, she is pretty. I found a couple of small dowels and put wood knobs on the ends to make some makeshift mallets so I could truly hear the sound of the keys. I LOVE IT. Listening to it makes me happy. I have a new instrument to learn. I think that Google might help me out again with some tutorials. The only thing I know about my new marimba is that she was made in Guatemala. How she made it to the United States, North Carolina, and then to Asheville, I’ll never know — but what matters now is the moment. Oh, she is a pretty instrument!

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