Can You See M.E. Now?

Another year passes, and here I lay, on the couch or in bed, another one of the millions missing from participation in life due to myalgic encephalomyelitis. My family and friends must be tired of hearing about this relentless and insidious disease that robs me of my ability to have a normal life. But here’s the thing, I’m not alone. There are between 15 and 30 million people around the world with this disease.  We have been mislabeled with the disparaging name “chronic fatigue syndrome,” denigrated by the medical community, and ignored by governments who allot shamefully minuscule funding, or none at all, for research.

M.E. is invisible. “You don’t look sick” is a common and dismissive refrain. It is severely under and misdiagnosed. Ronald Davis, PhD, Professor of Biochemistry and Genetics at Stanford University calls it “one of the last major diseases we know nothing about”.

M.E. is real. Imagine being so ill you can’t take a short walk, leave the house for weeks, talk on the phone, read, or have a visitor. When you do, you experience debilitating symptoms for days and weeks afterward. This is M.E.

I am one of the Millions Missing.

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There are various things you can do to help. Sign this petition to Dr. Collins of the NIH and contact your congressional representatives to demand that the NIH grant appropriate levels of funding. A good place to start finding information would be MEAction.net. These are folks with ME who risk their own health to organise protests, start petitions, educate and inform politicians, the NIH, and more.

Educate yourselves and help spread awareness to those around you: Solve ME/CFS and Open Medicine Institute.

There are protests taking place this Saturday, May 12th, throughout the world. Find them here #MillionsMissing.

Follow the hashtag #MillionsMissing and #CanYouSeeMEnow? on social media to see what’s going on.

Watch Jen Brea’s fantastic TEDtalk here and movie Unrest.

Be a part of the solution.

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Change

This is what my much-loved work area looked like not long ago. Crammed full of paints, gemstones, findings, half-finished bracelets and necklaces and a plethora of tools to create jewelry of all kinds.

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Alas, I’ve come to grips with the reality that due to the severity of ME/CFS, it’s too difficult to make and market my jewelry; therefore, I’ve had to drastically cut back. If I am being honest, it’s something I will probably have to let go of completely. This is a tremendous loss as an avenue of creativity. With any chronic illness, you are forced to go through a continuous process of grief, for the unrelenting loss of one piece of your life after another. The contrast between what you were able to accomplish and the actuality of ones present circumstance is an ever widening chasm.

But, as one lovely young lady, Lucy Grove-Jones wrote in a wonderful post, It won’t be the same life I would have had if I’d never become sick, I know that….. because I will have a life. Just watch me. 

In that same vein, I’ve begun, slowly retiring my jewelry accoutrements and replacing them with watercolors and brushes. Here in my studio is a required tool for ME/CFS, the ubiquitous couch where much of my life is spent, resting to alleviate symptoms and hopefully, prevent further damage. Books and iPad are piled high, always with hopes that my brain fog is less intense that day so I can delve into them for a small period of time. My art table awaits, for the moments I can again revel in my paints and explore all the gorgeous hues.

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I have a life. It is a different kind of life, but it is mine to build anew.

If you would like to know more about ME/CFS, and to help build awareness, there’s great information MEAction and at Solve ME/CFS Initiative. And please check out Lucy’s delightful blog here!

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It’s Thursday!

Hi everyone! Just wanted to add a few recent pieces that I hadn’t displayed before. Have a wonderful day!

 

This is an antique French medallion. I love her delicate and exquisite face!
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Unrest on PBS

For those of you who are in the United States, Unrest will be coming to PBS on January 8th. This documentary is a glimpse inside one woman’s journey with Myalgic Encephalomyelitis (ME), a misunderstood, misdiagnosed, pervasive and insidious disease.  It is a love story.  It is a story of strength.  It is a story of despair.  It is a story about the failure of the medical system to take seriously millions of people who suffer from ME.  It is a story of success, how one woman has managed to shine light into a little seen world.  Unrest has been shortlisted as one of the top 15 documentaries for the Oscars.

Please take the time to watch this vital documentary and let others know about it. Perhaps if enough people begin to ask questions, we can increase awareness and funding for research. Perhaps those of us who are invisible to the general populace will become visible. Unrest is a story of an often bedridden and invisible community, built on the simple principle that, although you may not see us, we are still here.

Hear us.  See us.  Be part of the solution.

I am still here.

 

#millionsmissing @unrestfilm @jenbrea

Posted in Films, ME/CFS, Myalgic Encephalomyelitis | Tagged , , , , , , | 5 Comments

New Jewels

It’s been over a year since we began to remodel our house in order to install an elevator. We ended up putting in a bonus room which I immediately co-opted to be my studio. I’ve created a few pieces recently; it’s just so much fun to play with tools and paints and make a complete mess! Here’s a few new items:

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And here’s  a photo of my new studio (okay, our room…. I can share 😇):

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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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Posted in ME/CFS, Myalgic Encephalomyelitis | Tagged , , , | 9 Comments

#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’ve lost 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

Posted in Artists, Bracelets, Earrings, Galleries and stores, Necklaces | Tagged , , , , , | 1 Comment

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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