Friday, June 28, 2013

She's Baaaaaack.

If I'm not mistaken, I think I may have survived another Bug Camp. I'm just coming to...feeling a little groggy still as if I've been drugged.

A quick scan of my surroundings and I am quite certain that I have indeed persevered through a harrowing week of the daunting exploits of a 5 year old. Not just any 5 year old, I might add. My niece, aka "da Bug" God Daughter. God will gladly mention to you that I conjured up a few requests for miracles as I tackled the expectations of my happy camper. 

As I sip my coffee the whispers of "what was I thinking?" are being hushed away by the distinct knowledge that I HAVE SURVIVED. I am a breathing specimen of the capacity of the human spirit to NOT GIVE UP under any amount of pressure. Or whining. 

Grab your own cup of coffee my fellows and let me recount to you the triumphant ordeal as the memories come back to me. 

I seem to recall being poked awake. The air was cold and the wind was brisk. The 5 year old was ready for her first day of "Ohn Mamie Bug Camp". Something average for breakfast was unheard of and the point was clearly made. 

"I would like to have something that I have never ever had before", were the words uttered. 
Having made Mickey Mouse pancakes for dinner the previous night, it was obvious that I needed to consult my fellow camp counselors for ideas. 

The suggestion was made by "Unka Davin" that perhaps a trip to Rusty's Tacos would pass for "something never had before". 

Rusty's Tacos...cheesy breakfast tacos. Cheesy Eggy Tacos for da Bug. 
As the sun broke through the morning clouds it led to the supreme opportunity for the 5 year old to witness a sunroof open, letting in Texas fresh air. Also a rare chance to stick her head out of the window like her dog Zoe Belle.

Our first Bug Camp field trip was to visit the esteemed Perot Museum of Nature and Science. While at first the idea of going to a museum was poo-pooed, the chance to race a dinosaur was intriguing to our guest. 

There was talk of a camping trip which would eventually be ruled out due to weather. Perot Museum to the rescue. Wah lah...a camping trip. 

Look what stumbled into our camp site- a Bug Turtle!

The next days were filled with the usual camp activities.


Wearing down the camp counselors: 

Dress Up Day with one of Ohn Mamie's old gowns:


Thrill rides:

Stuffed Animal Dentistry
Cookie Baking

By the end of the week of swimming, coloring, singing, guitar strumming, baking and cat pampering the 5 year old began to get homesick. That's when she could be heard singing in the 3 way mirror a tragic song about having a fish, a dog, something about the Holy Spirit, a Mom, a Dad...and how she should be with her family. She was ready to go home. 

Bayleigh (Bug) packed up after the 2nd Annual  Bug Camp
So, my dear I fall gracefully into Sjogren's Recovery Mode I leave you with this last thought. Enjoy life. Surviving IS living, so get out there and give it a go. It's worth it. It really is. 

Saturday, June 1, 2013

Hydrating Nixie, A Symbol of Hope for Sjogren's Syndrome Sufferers

A few months ago Julia Oleinik, writer of Reasonably Well initiated a challenge to create a piece of art that would become a symbol of hope for those suffering with Sjogren's Syndrome. 

Julia wrote: 
I've felt for a very long time that we sjoggies need a mascot, or a symbol, or something that represents us. Something that is immediately recognizable to other sjoggies. Something that needs no words. Something that identifies one sjoggie to another instantly.

I gave the idea thought. Lots of thought. We sort of really need something. Isn't the thought of a super hero of sorts swooping in to save the day a lovely thought? More than entering a contest, I was really interested in exploring what my icon of hope might look like. 

So I shuffled down to my son's bedroom and flopped onto his bed to rest while my foggy brain sorted ideas out. 

"There is an art contest of sorts, a challenge to create a character for people with Sjogren's. I'm having a hard time coming up with something. Maybe you can help me?" I said hanging half on and half off of his bed. 

"Sure." he said as he grabbed his sketch pad and Sharpie. 

I pounced at his willingness to help. I sat myself up as he spun around from his desk waiting for me to dictate some ideas to scribble. 

"Ok, I was thinking like a droplet of water...because we're so depleted of moisture?" 

He drew an upside down drop and added eyes, arms and mouth. He added some blue squiggles around the border. 

"Oh my gosh. That's it." I said as he looked up and smiled. 

"It needs a cape. Every super hero needs a cape...and boots. It needs super hero boots." I dictated to him. 

He added a red cape and little black super hero boots to the little thing. He looked up from his sketch pad as if prodding me to add more. 

"You know what? Maybe it should be a girl. Since 9 out of 10 patients are women maybe more would relate if it was a girl." I said as he was nodding his head as if he already knew that. 

He added a little bow on her head and gave her pretty long eyelashes. 

There she was. She was a crude little sketch but she was ready to take on what ever heist the Sjogren's Syndrome Robber could attempt. All she needed was a name for the people to cry out when she was needed. 

We looked up names that derived from water. We chose Nixie, a German name meaning little water sprite.

I am proud to introduce you to Hydrating Nixie! 

"Tah Dah!"

We entered little Nixie into the contest for fun. What Cole and I created was special to me though. To me it really was a cute little creation that was already inspiring hope. One little droplet can make all the difference to a person coping with the dehydrating effects of Sjogren's Syndrome.

Cole and I are over the moon excited that our Hydrating Nixie won the Creativity Challenge! 

She's sitting beside my laptop cheering me on right now. She helps me to not be so resentful of continuous eye dropping. She actually makes me a little thirsty, which is a good thing because my body can use the extra water. She's been cheering me up while I'm battling pain, fatigue and brain fog. 

If you are a fellow Sjogren's Syndrome sufferer, I wish you wellness today. Nixie sends misty, dewy comfort your way. 

I challenge others to create your own symbol of hope to help pick you up. It's an interesting exercise to  plunge into. What would it look like? How would it help you? Ask and you shall receive. 

Please visit Julia's blog post here to view the other Creativity Challenge Finalists. Amazing artistic expressions of hope.