Freedom! An ME/CFS Story

Today I bought an electric wheelchair and I’m overwhelmed.

How is it possible to feel so many contradictory things at the same time? I cried, laughed, cried some more. The joy I felt, being able to get outside and “go for a walk,” to take back some normalcy, the despair and sadness at the tangible evidence of the ravages of ME/CFS, all mixed up in an overwhelming emotional storm.

But still, freedom beckons!

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I would love to be independent, to not have to be reliant on others all the time, but my walking has deteriorated and it is laborious to move my non-compliant muscles for very long. A short block had become a marathon. The parameters of  my life are mostly bound by the walls of our house. But on days when getting dressed and going outside is an option, it’s a heady prospect indeed!  So take that ME – A celebration is in order!

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#MillionsMissing

Why the hiking shoes you ask.

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May 25th, 2016 is dedicated to the millions of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. ‪#‎MillionsMissing‬ and I am one.

#MillionsMissing is a day of global protest to raise awareness of ME/CFS and the impact it has on patients and their family. It’s about the millions missing from their schools and careers because of this illness. The millions missing from their families, friends and social lives. The millions missing from the lives they want to lead. The millions missing from research and development of effective treatments and cures, the doctors and health care professionals missing out on proper training to diagnose and help patients manage this illness.

May 25th, 2016 ‪#‎MEAction‬ is global day of action for ME/CFS patients, advocates, caregivers, and allies who will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving  patients without relief. Protests are happening in: Washington, DC | London | Belfast | Atlanta | Boston | Dallas | Philadelphia | Raleigh | San Francisco | Seattle | Melbourne | Ottawa (virtual)

Most of us can only attend virtually.

So why a pair of hiking boots on my profile? I never got the chance to wear these down. It was I who was worn down. These shoes represent the healthy me. The me that I was before ME/CFS  came in and ravaged my body. The me that I have lost to this illness. When I wore these shoes, I could push my body in exercise and it felt good even if it was hard. Then, hiking and yoga were physically beneficial rather than stressing my body to the point of dangerous consequences as it does now. I could tell my muscle to do something and it would obey me. I had a surety of foot that cannot exist with my present neuro-immune illness which affects every system and includes debilitating symptoms, like cognitive dysfunction, problems with short-term memory, concentration, clumsiness, disequilibrium, severe and constant pain.  I miss that me that wore the hiking shoes with excitement, socialized with ease, read history and science books with pleasure while delving into beloved novels with joy, painted with abandon, listened to TED talks and understood. I miss what that body and mind could do.

The grief and fear when you start to lose physical and mental function never gets easier. Over and over, I lose the freedom to create, take painting lessons, to be actively social, to get lost in movies and books, to mentally and physically engage. You never know what might become permanent. You adapt, becoming comfortable with a new normal — most people with disabilities do — but then the recovery/relapse cycle starts all over again.

Adding insult to injury, there always seems to be social pressure to spontaneously recover, or at least to stop behaving like an ill person. Compassion fatigue sets in, which is understandable but devastating. Lack of awareness around ME/CFS, and an outward appearance of health, can result in serious misconceptions about what our lives entail. The lack of community, empathy and acknowledgement of the real nature of this disease can be just as demoralizing as the symptoms.

Our lives would be infinitely better if this illness received the research funds to adequately perform quality biomedical research. Please sign the petition asking the NIH to fund research for ME/CFS: https://www.change.org/p/increase-funding-so-we-can-find-a-cure  Please ask others to do the same.

Thank you all for reading this, your support and caring.

#MillionsMissing

 

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The Upfront Gallery

Studios in the Park in Paso Robles has redesigned Gallery 9 and moved it to the entry area of the studio. It is now the Upfront Gallery and is host to a multitude of unique designers and artists (yeah, I am there too!). If you are in Paso Robles, please visit and check out their latest exhibits!

Guess who?!

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And here is a taste of one of the fabulous exhibits always to be found at Studios

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Spring awakenings

Ahhh, the sight of vibrant flame colored poppies and sunshine stained mustard abounds throughout the Central Coast. Spring has definitely sprung! Here are a few hand painted odes to spring of my own!

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Green Green Green!

It is a verdant and lush paradise throughout the Central Coast of California! Thought I’d share a few photos taken by my lovely husband, Steve:

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I am a Reader

Books are a lifeline, a journey through our imagination to other places, times and adventures, so it’s shocking and sad when you realize how many people can’t afford to buy them. Jenny Lawson, The Bloggess, has created a Booksgiving where people can post if they need a book and others can give. It’s awesome! Go and read some of the wonderful things people have written and the generous people who have freely given in response to those in need. In addition, there are so many other ways to give and I wanted to include two of my favorites: First Book, that helps distribute books to children in need and The Harry Potter Alliance and their Accio Books campaign to donate books to help build libraries. I really just wanted to pay it forward by sharing a way for folks to participate in the joy of reading!

I am a reader

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Winter Scenes

Yes, California is getting rain, lovely rain! The hills are a verdant green, the skies change daily from a vibrant blue to cozy up clouds and rain falling in crazy chaotic drops, with gusts of wind to liven things up. I thought I’d post a few pieces of hand painted jewelry with miniature winter scenes. Enjoy!

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Holiday Show!

Yep, the holiday season is approaching fast and getting ready for it takes advanced preparation. So to help everyone out I’d thought give y’all a sneak peak at the Handcrafted for the Holiday Show coming up at Studios on the Park in Paso Robles. It runs November 27, 2015 – December 27, 2015 and will showcase a myriad of exceptional and truly fine crafts. An easy way to find those many gifts needed all in one place! Check it out at Handcrafted for the Holidays November 27, 2015 – December 27, 2015

Setting up for Handcrafted for the Holidays Show at Studios on the Park

Setting up for Handcrafted for the Holidays Show at Studios on the Park

Posted in Artists, Bracelets, Earrings, Galleries and stores, Local happenings, Necklaces | Tagged , , , , , , | 4 Comments

Sparkle for the holidays!


It’s November and the holiday madness begins! Enjoy it with the brilliance of a multitude of sparkling gemstones, resplendent geodes, and intricate chainmaille. Time to shimmer and gleam with tourmaline, amethysts, moonstones, chrysoprase, morganite, ametrine, labradorite and many more gems and agates of all hues!    Shiny!*

*Shiny  Firefly reference people, yes? Really, one of the best scifi TV shows ever, cancelled by those-who-shall-not-be-named 😦

             -I am a leaf on the wind, watch how I soar

              -You can’t take the sky from me

…anyone?…..

All right, more jewels instead (still shiny! 😉 )

PS  All of this and more will be in Studios on the Park in Gallery 9 beginning next week. Come to Paso Robles and see all of the wonderful artists and activities going on in the gallery!

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Maxfield Parrish Days

Here are some hand painted and embossed necklaces to echo the continuing magnificent days and nights we have had! (let’s not talk about the insane drought we’ve been having…)

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Morro Bay, view from our treehouse in Lothlorien

Morro Bay, view from our treehouse in Lothlorien (Yes, a gratuitous Lord of the Rings reference!)

 

 

 

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Beauty in the Romance

For some reason, the brilliant summer sunlight, the vibrant hummingbirds in the yard, and the intensely blue skies with sunsets that defy the imagination all remind me strongly of Maxfield Parrish’s  romantic and dazzling artwork (click on the links to see his bio and work). I have always loved his figures who are evocative of romance and play. It has driven me to find a little of that feeling in my jewelry. So here goes!

Radiant Garden Necklace

Radiant Garden Necklace

Art Deco Maiden Bracelet

Art Deco Maiden Bracelet

Woman in Emerald Bracelet

Woman in Emerald Bracelet

Halcyon Days Bracelet

Halcyon Days Bracelet

Blazing Woman Bracelet

Blazing Woman Bracelet

 


  And here is my favorite Maxfield Parrish- breathtaking isn’t it!

Daybreak by Maxfield Parrish

Daybreak by Maxfield Parrish

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Faces

I really love exploring new ways to be creative and am completely enamored of these lovely faces!  Of course my workroom  now resembles World War III -utter chaos due to the growing amount of new tools, jewelry parts, and oh so many many ways to color and paint!

A Klimt beguiling beauty is illuminated delicately with glowing warm tints.

Klimt Bracelet    A beguiling beauty is illuminated delicately with glowing warm tints.

Searching Woman Bracelet    An art deco inspired woman softly shines through an opalescent swirl of lilac, pearl and midnight blue.

Searching Woman Bracelet    An art deco inspired woman softly shines through an opalescent swirl of lilac, pearl and midnight blue.

Doors of Fire Necklace

The Woman Within Necklace This pendant is embossed, painted and glazed in fiery hues. Open and enter!

The Woman Within Necklace A mysterious woman inspired by Gustav Klimt arises from the vibrant paint.

The Woman Within Necklace A mysterious woman inspired by Gustav Klimt arises from the vibrant saffron, marigold and crimson handpainted backdrop.

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“Why do we never get an answer when we’re knocking at the door?…”

Yes, that was tease for you Moody Blues fans! So please enter new doorways with a few answers  😉

And since I am obviously a devoted Moody Blues fan, I thought I’d give y’all a Moodies break with “Question” :

“Why do we never get an answer
When we’re knocking at the door
With a thousand million questions
About hate and death and war?”

Oh heck, here’s the whole thing, enjoy!

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Accio Magic Doors!

Hah, got your attention! Thought I was going to show you new jewels, and I am, but since I am knee deep in Harry Potter (how many of you just stopped reading this?…) I thought I’d pass along some impressive work by a group of young folks who want to do good in the world, http://thehpalliance.org. Their latest campaign is called The Apparating Library to promote literacy and continue their international book drive. Check it out!

Here are a few doorway necklaces for those Potterheads out there:

Still looking for my magic wand……

 

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Through Doorways

Here we go through open doorways to new adventures! This is a new line of pendant necklaces. Each one reveals an inspirational thought. Here is a sneak peek:

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