What Else Can I Say About ME?

Here we are at May 12th again.  Another Invisible Illness Day come to bring awareness to all the illnesses and diseases which are impolite enough to leave their sufferers still appearing to be well.  Of course, anyone more than casually acquainted with someone who has fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, complex regional pain disorder, multiple sclerosis, rheumatoid arthritis, Crohn’s disease, Lyme, lupus and many, many more illnesses can attest to how debilitating they can be.  The facade of health they leave intact feels like salt in the wound; a confusion for those untouched by their cruel hand, a silent undermining force with us at every doctor’s appointment, a declaration that we are lying or greatly exaggerating our illness.

What else can I say about ME?  About all the other forgotten, ignored diseases swept under the rug of modern medicine?  Illnesses which embarrass our doctors with their constant reminder that we remain unhealed.  Sicknesses with confusing, confounding symptoms which can morph and change like the whim of a butterfly’s flight.  Maddening maladies which suck away our vitality, our joys, our passions, our lives as completely as any vampire.

I’ve written about ME extensively as it’s been an enormous part of my life for the last eight years.  How I have not had a single day since late May of 2008 that was free of pain or its constant, overwhelming exhaustion.  How it has progressively gotten worse each year.  How the government would like to pretend we invisibly ill don’t exist.  How grotesquely underfunded our research is, giving us the same amount of money for research as hayfever gets and less than 1/4 of what male pattern baldness receives.  You have heard me spout the facts and statistics.  You’ve heard me talk about my personal story and fight with ME.  What else can I say?

I can say this: I am not beaten.  I have not given up.

I am determined to get better.  I am committing myself to be well, even if I have it about through sheer mental will.  I will not give in to ME’s gloomy, hopeless future forecast of progressively worsening every year.  I am not accepting a future of the living death that is ME.

I don’t know exactly how I will get better, but I am going to.  As a sign of my determination, I changed my blog’s tagline for the first time since I started this blog years ago.  “Art, photography, life and why I always feel like shit,” felt perfectly appropriate at the time.  “Art, photography, life and how those are really all the same thing,” is much more appropriate now.  My identity is not Sarah-who-has-ME.  I am just Sarah.

As I wrote about in my last entry, my life has been pleasantly consumed recently by my spirituality.  I have strongly felt how focusing on fighting ME has been feeding it.  So now, I will ignore it as much as possible.  I do not mean that I will forget my body’s current limits, or not honor them.  Listening to my body and what it’s able to do is vital for my current and future wellbeing.  But I’ve realized that I can live within the confines of my case of ME while still not letting it reign in every area of my life, and that feel incredibly freeing.  This is the path I will pursue.

This also does not mean that I will not advocate for ME sufferers.  I still feel very strongly that the only way we will bring about change is by demanding it.  And we can only demand it if we know that it exists in the first place.  But I can also advocate without allowing ME to rule every part of my soul.

As May 12th approached, I wanted to create a new image for my Enchanted Sleep series, which is all about living with ME.  I asked Katie Johnson, frequent model and collaborator as well as dear friend, if she would help me bring some concepts to life and she gladly agreed to help.  Through a variety of factors, I wasn’t able to shoot these images until very recently, which meant I had a very short window to edit one up and release it for Invisible Illness Day, but I got it done!  Ideally, I would be releasing the whole short series we shot, but I am content with having just one to show you and help illustrate life with ME.  With that, please let me present my latest image to you, Living With The Tombstones.

Living With The Tombstones – © Sarah Allegra. Model: Katie Johnson. An image to help raise awareness about ME/CFS and other “invisible illnesses.”

I probably don’t have to explain the symbolism behind shooting this image in a graveyard.  ME (and many other invisible illnesses) truly can be a living, nightmarish death.  Even if you’re not one of the unfortunate souls cursed with severe ME, where any touch, light or sound cannot be tolerated, you die every day to the dreams and hopes you had when you were healthy.  You might discover new passions to pursue within ME’s confines, but do you ever truly forget what’s been taken from you?  If you do, I am not there yet.

I took the name “invisible illness” and interpreted it quite literally, editing out any part of Katie’s body which showed outside her long, princess-like dress.  And the mirrored mask felt like the perfect touch.  When people look at us, they rarely see us; they see their projections of who we are.  Often what they see says far more about them than us.  Some will look at me and, because I can occasionally manage to put on clothes, have Geoff drive and go with him to the grocery store, refuse to believe there could be anything physically wrong with me.  They don’t see the toll that those short, simple trips take on me.  They don’t know that grocery shopping is my ENTIRE plan for that day, probably several days.  How the lights and noise and bustle inside the stores give me migraines, panic attacks and leave me in bed for the rest of the weekend.  They don’t see the weight of my illness on Geoff and my family.  How if I see friends, they always have to come to me.  I so often feel like a dead-weight wife, daughter and friend.  The times I’m overwhelmed by the ME and can’t decide between crying and being too tired to cry.  How many pills I take every day to try and make it to the next day and not be consumed by the constant pain I’m in.  They just see a fairly normal-looking girl.

I can’t blame other people for not knowing that I’m sick.  I don’t display the characteristic signals of someone who is unwell, so of course people assume I’m healthy.  But we need to get to a place where I could tell a stranger that I have ME and they might know what I’m talking about.  That if someone else said they have MS or Crohn’s or fibro, that stranger would have heard of those illnesses.  That the stranger would have at least a basic idea of our struggle and the dire need for change, for research, for treatments, cures and basic respect.

We can get there.  We will.  One May 12th at a time.

Want to do more?  I can help you with that!

• Rent or buy the new ME documentary, Forgotten Plague.  Consider hosting a screening of it for your friends and family!
• Write a one-click letter to Congress to increase ME’s funding.
• Join in the #MillionsMissing protests in Washington DC and other locations through the world on May 25.  You can participate even if you’re too unwell to join in person or if there isn’t a protest near you!
• Wear a blue ribbon in real life or add one to your social media avatar.  Thanks to MEAdvocacy.org for the instruction!
• Start a discussion, link to articles, blogs, videos and/or artwork that discusses ME or other invisible illnesses that will help spread awareness.  Add a #may12th hashtag to your posts!
• Donate to an ME-related group, such as the Microbe Discovery Project, or help support those with invisible illnesses by purchasing items from our online shops.  Get some cute awareness-raising jewelry from The Hopeful Spoon, crystals to meditate and heal with from Mineralism Crystals (or just enjoy looking at!), museum-quality fine art prints from yours truly, give yourself or someone you love the gift of self discover and art with my online photography course Introspective, or a wide variety of fun and practical items from my RedBubble shop!
• See this article from ProHealth.net for more ideas!
• Watch and share the video below which I made last year:

I’d like to thank everyone in my life, online and off, who has supported me during these trying past eight years.  Especially Geoff, who I’d only been dating for a month when I became ill.  Lesser men would have run from what he had to face, but he’s stuck with me, no matter how bad things get.  And I’d also like to thank everyone for the extremely warm and receptive response you all had to my previous blog post.  Your kind words and love and support are greatly appreciated, now and always! ❤

Read Full Post »

Achievement Unlocked!

I have VERY BIG, GOOD NEWS.  I’ve felt like bursting from holding it in!

Where Earth Meets The Sky, model Katie Johnson. © Sarah Allegra

My work has been accepted into A Gallery!  A Gallery is a fantastic online gallery who represents some truly stellar other artists in whose company I am proud to be.  You might know of Christy Lee Rogers or Tyler Shields, who are both extraordinary and whose work I knew before I was to be shown alongside them.  One of the most giddy, fan-girl moments though was discovery A Gallery also represents Chris Parks whose work you will know if you’ve seen one of my very favorite movies ever; The Fountain.  That magical, swirly, organic background used in so many shots (especially in clouds of stars and gas in space) are his creation.

Chris Park’s dreamy, swirly, organic creations in The Fountain

Chris Park’s dreamy, swirly, organic creations in The Fountain

*Squealing, fan-girl hopping*

Ahem.  I am VERY happy to have found such a wonderful home for my art!  I’m thrilled to be working with A Gallery’s owner, Fraser Scott; it’s going to be a really great, long-lasting relationship for everyone involved!  I can’t wait to see what this brings!!  This feels like a really big accomplishment to have checked off my life’s to-do list… and yes, there was champagne when I checked it off 🙂

Vanity’s Murder, a self portrait – © Sarah Allegra

**Please do take a look at my work on their site!  If you like something, buy it!  You deserve it 🙂  And you’ll be supporting an independent artist and a fantastic gallery at the same time!**

The Shepherdess, model Lucea Shipler, my grandmother! – © Sarah Allegra

When you purchase a print, you will receive one of my gorgeous, luscious, limited-edition, signed and numbered museum-quality prints, printed on the thickest, most delicious fine art paper.  I am going to be printing all my images on Hahnemuhle Fine Art Pearl Paper.  It’s almost like a watercolor paper and it picks up every tiny detail for your viewing pleasure!  As a wonderful bonus, the paper itself is ever-so-slightly shimmery, which truly adds a whole other depth to the images and enhances their magical, mythical feel.  It’s been a long time searching for exactly the right paper which would give me the lifetime of quality I want along with the subtle, fae-like touch of pearl, and this paper is it.  You really have to see it to understand how gorgeous it is

Fae Light, model Dedeker Winston – © Sarah Allegra

I have sung the praises of my printers, POV Evolving, before and I’ll say it once more.  They are not close to me.  Their location is somewhere between a hassle and a nightmare to get to, I can never go without getting a little lost coming or going, and it’s a big mental and physical drain to make the trip down.  I don’t care.  Their work is so fantastic, I do not care where they are, how long it takes, how snarly the traffic is; it’s completely worth it!  Lauren, who does my printing, is also a truly lovely person who makes the trip extra worthwhile by being so pleasant when you get there.  Pleasantness aside, POV just does astonishing work which will last a lifetime and more.  I have been told by clients who have my work hung in their homes, that when people come over and see my prints for the first time, there are often gasps.  I feel immodest saying that, but that really is the level of beauty you’ll be getting!

End Of Line, model Aly Darling – © Sarah Allegra

It feels truly wonderful to have found a home gallery run by such a great person who has a commitment to my work, an emphasis on working ethically with everyone, and being in the company of such immensely talented other artists!

A Drop Of Blood, model Katie Johnson © Sarah Allegra

I’ve scattered some of Fraser’s image choices through this post, but please take a look at which images he has selected for his prestigious gallery!  And if something strikes your fancy, feel free to purchase a print for yourself or a loved one!   🙂

Hope Of Heaven When Their Lives Ain’t Lived, model Veronica Ricci – © Sarah Allegra

I will still be selling prints through my Etsy shop; either way you will be receiving the same, incredibly high-quality item!

Again Throughout Eternity, model Sandy Moore – © Sarah Allegra

I should have some more good new to share soon, but in the mean time, feel free to join me in having a celebratory drink of your choosing!  Cheers!

3 Good Days, a self portrait – © Sarah Allegra

Read Full Post »

Silencing Again

On February 10th, the Institute of Medicine released the findings of a report it had been working on for approximately a year and spent over a million dollars on.  Their task: come up with new diagnostic guidelines for patients with myalgic encephalomyalitis/Chronic Fatigue Syndrome and decide on a new, single name to replace both ME and CFS, which are generally used interchangeably for the same disease.*  Considering that ME/CFS gets only a pitiful three million dollars in government funding per year (which may sound like a lot, but consider that male pattern baldness, which is not life-threatening, gets $16 million, and you realize how very, very little that is), this is a cost we cannot afford.

Silenced © Sarah Allegra, model Travis Weinand
Read on for the full image!

The IOM’s findings are so upsetting to me, I can hardly organize my thoughts into rational sentences.  But while I may want to sob and punch a hole through the wall (which, let’s face it, I’m probably not strong enough to do anymore), I need to speak up about these incredibly vital points and I need to do so in a way that other people won’t dismiss me as merely a “hysterical woman.”

I’m going to be generous here for a minute; here are the few good things gleaned from the IOM’s 304-page report.

• They recommend retiring the trivializing name “Chronic Fatigue Syndrome.”  I fully agree with that.  I could not agree with that more.
• They admit that far more research needs to be done to understand ME/CFS.
• They admit that ME/CFS is a real and physical disease.
• They recommend that the Department of Health and Human Services should develop new, more accurate ways of diagnosing ME/CFS.

For about half a second, I was happy when I heard the IOM recommended changing the name of “Chronic Fatigue Syndrome” to what they’ve proposed: “Systemic Exertion Intolerance Disease.”  Mostly I was happy because I saw the word “disease” instead of “syndrome.”  And I will, begrudgingly, admit that their SEID is ever-so-slightly better than CFS.  If CFS is a kick in the balls, SEID is a kidney punch.  Neither is good, but I suppose if i were given the choice between the two (and I were male) I might choose the kidney punch.

Inside Looking Out © Sarah Allegra – model: Katie Johnson

Here’s what’s wrong with SEID.

The IOM complained that the name “Chronic Fatigue Syndrome” is demeaning and only focuses on one symptom.  Those are both true.  They also decided that “myalgic encephalomyalitis” was unsuitable because it also only focused on one symptom.  That is not true.  “Myalgic encephalomyalitis” literally means “muscle pain and inflammation of the brain.”  You have two symptoms being named, both of which are hallmarks of the disease and which have tons and tons of scientific proof backing them up, as well as patients’ own experiences aligning with them.  Additionally, more documentation can be found in the UK documentary Voices From The Shadows where multiple autopsies of patients who died from ME/CFS all showed inflammation in the same area of their brains.  Despite mountains of evidence to the contrary, the IOM decided that while nearly every person diagnosed with ME/CFS complains of chronic pain, that was not a general symptom for ME/CFS patients, and thus should be excluded from the name.

I know a lot of people with ME/CFS.  We are a close community as this disease ravages us in ways only other sufferers can truly understand.  We form deep online friendships since we are so often unable to interact with people in meaningful ways in the real world.  We rely on each other for advice about treatments and medications, as we almost always know more about our disease than our doctors do.  None of my doctors had ever even heard the name “myalgic encephalomyelitis” until I said it to them.  We are our own biggest support system.  And I do not know a single person with ME/CFS who does not experience chronic pain.  Personally, I have not had a pain-free day in over seven years.  To have healthy outsiders negate the 2,555+ days of pain I’ve experienced and say it’s not an important symptom is beyond a slap in the face.

A Fading Girl © Sarah Allegra – model: Brooke Shaden

But even those slights aside, “Systemic Exertion Intolerance Disease” fails their own test by simply naming only one of our other common symptoms; exertion intolerance.

Exertion intolerance is a very real thing for ME/CFS people.  And it doesn’t have to be physical exertion; mental or emotional exertions can leave us just as sick for days, or weeks, sometimes months… or forever, as physical ones.  For years and years, doctors have been advising us to exercise our disease away.  And for many illnesses, exercise does help.  But with ME/CFS, exercise can be absolutely deadly.  Push yourself too hard and you can make yourself house-bound or bed-bound… sometimes for the rest of your life.

We walk a knife’s edge every day, trying to judge what we can and cannot do.  It’s generally considered a fairly good idea within the ME/CFS community to try and remain as active as you can without overdoing it and making yourself worse.  It’s like playing a very stupid game of blackjack with your energy each day.  You don’t want to lose any ability to be active that you do have, but even hitting 21.01 could mean a week of being stuck in bed.  It’s a serious and deadly game we are forced to play every single day.

So yes, exertion intolerance is a very real and dire threat, but even given that, we’re still left with a name which merely cites one of our symptoms again.  And as I said, SEID is ever-so-slightly better than CFS simply because of trading out the word “symptom” with “disease.”  Laymen hear “syndrome” and it doesn’t sound serious; replace it with “disease” and their view shifts.  I have serious doubts that busy doctors, who have no time to read a 304-page document, will hear anything but “exercise avoidance” in place of “exertion intolerance.”  After all, exercise is a cure-all!  There’s nothing it doesn’t help!  That’s the mantra they’ve been taught again and again and it will take very dramatic events to undo those decades of conditioning.

Vanity’s Muder © Sarah Allegra – a self portrait I created after starting to experience ME-related hair loss

Almost every ME/CFS sufferer I know has had at least one doctor who refused to believe there was anything physically wrong with them.  I had one of those too.  Mine decided I was simply depressed and anxious.  In a way, she was right; I was getting very depressed because I felt terrible every single day and nothing was helping it, and I was becoming increasingly anxious about my appointments with her because I was sensing she didn’t believe me.  I have experienced clinical depression.  There was one solid month in a very dark period of my life where I had to rationalize not killing myself every single day.  I know what depression looks and feels like.  It is a completely different beast than ME/CFS.

It’s like saying sharks and bears are the same threat.  Well, no, one lives in the water and generally attacks you if he mistakes you for a seal; the other lives in the woods and might attack you if she thinks you’re a threat to her cubs…  You get the picture.  Both can kill you, but trying to issue a blanket statement that they are both the same threat, coming from the same place, using the same methods to avoid them would be absurd.

The Blue Ribbon © Sarah Allegra – Model: Katie Johnson

ME/CFS is not “just” depression.  I put “just” in quotes because I know how serious depression can be and I never want to be dismissive of it.  It kills too.  But they are completely separate entities.  There is a tendency for people who have ME/CFS to become depressed because they have ME/CFS, but that does not mean they are one and the same.  Almost anyone with a chronic, incurable illness is going to get depressed.  You never hear people accusing cancer patients that the cancer is all in their heads; they’re just depressed and if they went for a nice jog, everything would be fine!

And lest you think I am fear-mongering and making ME/CFS out to be more than it is, let me remind you of a quote by Dr. Nancy G. Klimas, who specializes in treating both HIV/AIDS patients along with ME/CFS patients.  In 2009, she was quoted with the following: “…But I hope you are not saying that C.F.S patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.  I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

The overwhelming majority of ME/CFS patients would have liked to have had our name officially changed to “myalgic encephalomyelitis.”  We made our preferences known loudly during the entire time the IOM worked.  ME is, after all, what most of the modern world calls it.  It was only because of one insidious man that the United States switched to “Chronic Fatigue Syndrome.”  And why was such a name invented?  To create a legal loophole where insurance companies would be able to deny sufferers coverage.  The schism between the United State’s naming of the disease and the rest of the world began with greed from insurance companies.  These are your US tax dollars at work.

And what’s even worse is that there is speculation that the IOM is intentionally confusing the issues around ME/CFS; making the definition unusably broad, ignoring patients’ wants and needs.  Once again, making sure we’re worse off than we were before they came along.

Breakable © Sarah Allegra – a self portrait

The second of the IOM’s tasks, coming up with a diagnostic criteria for ME/CFS, was also unnecessary.  Two excellent, specific and scientific definitions already exist (and are used by most of the modern world as well.)  It was loudly advocated by ME/CFS patients and specialists alike that the IOM adopt these guidelines.  In fact, 50 of the world’s leading ME/CFS experts sent letters asking that the IOM’s contract be canceled along with countless letters written and petitions signed by patients.

That brings up another salient point… who are these people chosen by the IOM for this heavy and delicate task, ripe with repercussions which will ripple through the decades?  They are 15 people, only seven of whom specialize in ME/CFS in any way.  Some are not even doctors.  How is this at all ok?  How was it allowed that a group of people who don’t have anything to do with the disease at hand would be asked to redefine it?

Let’s give them the benefit of doubt for a moment and assume they’ll really try and do a good job.  Who knows.  What did they come up with?  They decided that to be diagnosed with ME/CFS, you need only three of the following core symptoms:

1. A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue – which is often profound – of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest.
   
2. The worsening of patients’ symptoms after any type of exertion – such as physical, cognitive, or emotional stress – known as post-exertional malaise.
   
3. Unrefreshing sleep.
   

And at least one of the two symptoms is also required:

1. Cognitive impairment.
   
2. The inability to remain upright with symptoms that improve when lying down – known as orthostatic intolerance.

Do you know how many diseases and conditions fall under this umbrella?  It’s so broad, it’s utterly useless.  You wouldn’t even need to have a physical ailment to qualify for ME/CFS.  This is a big deal.  If this new standard is adopted, this is the criteria that will be used to find patients to test new drugs and treatments.  Can you imagine how murky and confusing the results will be if your patients could potentially have almost any disease?  Answers will never be found under these guidelines.

In Between Awake and Sleep © Sarah Allegra – a self portrait

As people online have pointed out, SEID backwards spells DIES.  And it’s hard to feel like that isn’t exactly what the IOM, HHS and CDC want us to do.  We are an embarrassment to them because they don’t know what our disease is, what causes it or how to fix it… and, of course, a great deal of that confusion was created intentionally; a fact they’re desperate for us to forget.  They would rather sweep us under the rug, ignore us, talk over us.  And sadly, that is very easy for them to do.  With so many patients house- and bed-bound, it’s extremely difficult to show our numbers, organize protests, or object to our treatment in any meaningful ways.

But this is what they haven’t counted on.

When you are backed into a corner by illness, you can either crumple under it or develop a steel core in the deepest part of your soul to bear it.  Some days you may flip back and forth between the two, but ultimately, your will strengthens.  The stakes are personal to us and they are very high.  Though it might take the help of our caretakers or cost us a week of energy or send us back to bed for months, we will not be silenced again.  Shifty, snakey policy-makers may have the energy and money we don’t, but they do not have this core to draw on.

We will fight.  And we will win.

Silenced © Sarah Allegra – model: Travis Weinand

Are you pissed off?  Good.  We need you to be pissed off.  We need a public outcry so loud that it simply can’t be ignored.  And we need the healthy, compassionate people of the world to join us in demanding change.

Here are some things you can do:

Pass around the image above, Silenced, on your social media platforms.  Linking to this post would be helpful!  I am giving you permission to use the Silenced image to help get our message across!  Put it on Facebook, Twitter, Instagram, Tumblr, Pinterest… wherever you hangout online!  The more people who see it and become aware of the problem, the better!

Tweet to @TheIOM, @HHSgov and @CDCgov letting them know your displeasure in the proposed name change.  We DO have the power to stop this from becoming our reality!  Please use the hashtag #MENotSEID.  Not sure what to say?  Here are a couple examples you are free to use!

.@TheIOM @HHSgov @CDCgov: ME/CFS research will be useless with the name SEID. #MENotSEID

.@TheIOM @HHSgov @CDCgov: SEID is still only naming a single symptom. #MENotSEID

.@TheIOM @HHSgov @CDCgov: ME/CFS patients will not be helped by SEID, it will only hurt us further. #MENotSEID

.@TheIOM @HHSgov @CDCgov: MECFS patients reject SEID and demand the name ME! #MENotSEID

.@TheIOM @HHSgov @CDCgov: Why are we spending a million dollars redefining and renaming what doesn’t need it? #MENotSEID

.@TheIOM @HHSgov @CDCgov: ME/CFS patients WILL NOT be bullied into silence over the proposed name SEID. #MENotSEID

Additionally, you can:

Submit answers to a survey about what you think of the IOM’s proposed name change.

Sign this petition to stop the HHS-IOM contract and accept the CCC [Canadian Consensus Criteria] definition of M.E.

Or this petition!

Every voice counts!

 

Would you also like to support me in my quest to continue making art in spite of ME’s constant presence in my life?  How lovely of you!  🙂  I have added the new Silenced image to my RedBubble shop as well as my Etsy store; you can get it (or most other images) as museum-quality prints, tshirt, stickers, covers for your phones and i-Devices, travel mugs, blank greeting cards, even pillows and tote bags!  Every purchase goes toward helping me continue to produce new art as well as spend the countless hours necessary to delve into issues like this post.  And every single purchase is hugely appreciated!

We Rise Again © Sarah Allegra – a self portrait

Images are from my Enchanted Sleep series, which portrays living with ME/CFS/fibro.**

Istagrammers!  Here is a square version of the image, already Instagram-friendly 🙂

Silenced © Sarah Allegra – model: Travis Weinand

*When you dig into it, no, ME and CFS are not describing the same disease, mainly because the current US diagnostic guidelines for CFS are so sloppy and wide-open.  Further information on the subject can be found here, along with countless other places online.  Since there is a lot to talk about in this post as is, for brevity’s sake, I’m using the term people are most familiar with, ME/CFS, though the definition I have in mind is the CCC and ICC definition of ME.

**Fibromyalgia is, for the most part, also used interchangeably with ME/CFS in the US.  This is not entirely accurate, much like ME and CFS are not really the same thing, but for the sake this post, when I talk about ME or CFS, I am also talking about fibro.

 

Read Full Post »

Prepping For Black Friday #2 – Sale On Etsy Prints!

As we approach Black Friday, Small Business Saturday and Cyber Monday, I have another post about my wares, this time with a big, fat, site-wide discount!

Now Has Come The Time For Silence – © Sarah Allegra – fine art print

Enter code MYTHIC2014 to get a whopping 20% off any and all items from my Etsy shop!  This is a huge sale, the biggest I’ve ever created, so take advantage of it while it’s active!  It will be good until January 31st 2015; perfect for buying holiday gifts for yourself and others, as well as spending any Christmas money you might get 🙂

Let me tell you a little bit about my prints.  They are made at an extremely high-quality printer in downtown Los Angeles.  My printer is not at all easy to get to; there is always traffic and I manage to get lost and the entire experience of getting there is terrible, but I wouldn’t change printers for the world.  Even if I moved out of state, I’d keep using them and have them ship me my prints.  The incredible quality of the prints they deliver is just that high.

Aerie – © Sarah Allegra – fine art print

Each and every image is carefully calibrated to reveal even the tiniest details.  They somehow manage to keep the highlights high and the lowlights low without a single pixel’s worth of detail loss.  The colors are an exact match for how I intend the images to look.  These are NOT easy things!  I have been through many printers before I found POV Evolving.  And a special shout-out and thank you to Lauren, who always handles my orders!  She is a delightful person and makes sure each and every image created is perfect.

In addition to all that, they only use archival inks and paper, making prints that are museum-quality and which will last for a lifetime!  The paper they use is this thick, luscious paper, almost like watercolor paper; nothing cheap or flimsy.  Every single time I have an image printed, I’m impressed with how amazing it looks, even though I’ve been seeing how great they look for several years!

To The Lost – © Sarah Allegra – fine art print

In addition to the incredible quality of every print, all my images come in limited edition runs.  There are a few exceptions, but generally it looks like this:

12 size small prints at 8″ x 12″

10 size medium prints at 10″ x 15″

7 size large prints at 16″ x 24”

That means that there will only ever be 7 prints made of that particular image in that size, in the entire world, ever!

Occasionally, I also have props or wearable art available in my shop as well!  Right now, you can have your own Wind Goddess headdress, which also looks quite wintery, for not very much 🙂

Where Earth Meets The Sky – detail.

The Wind Goddess Headdress available on Etsy now!

I also have a section of my shop dedicated to ME/CFS/fibro-inspired prints from my Enchanted Sleep series!

Each and every print will come signed and numbered along the white border.  If you’d like a short, special message included, I’m happy to add that for you, free of charge!

One more word about my prints; the quality of them was high enough that Peter S. Beagle himself took them along legs of his The Last Unicorn screening tour.

Five of my prints along the left side of this photo (photo not taken by me)

This was extra special because not only was Peter S. Beagle, one of the biggest sources of inspiration to me and one of my two favorite authors (the other being Robin McKinley) had this adorable moment with Game Of Thrones author George RR Martin right in front of my prints:

Peter S. Beagle and George RR Martin with plushies, in front of my prints!

I’d like to say quickly that the above photo went a bit viral and I have been credited as the photographer, but I did not take this photo.  I wasn’t even in the same state as they were at the time!  I tweeted about the photo since it’s adorable and also in front of my prints, and then it really took off, but I did not snap the image, and though I have tried to correct news sources, they continue listing me as the photographer.  So, I’m sorry to whoever did take this photo; I have tried to set the record straight!

This Dying Body – © Sarah Allegra – fine art print

Take a look around my Etsy shop and don’t forget to use your discount code MYTHIC2014 to get 20% your entire order!  Let me restate that this is the biggest, farthest-reaching sale I have ever had on my prints, so be sure to take advantage of it while it lasts!

If there is a certain image you’d like a print of, or you see an image you like but want it in a different size, just let me know!  Some of my images are under contract and I am unable to sell prints of them for that reason, but the majority of the time, I will be able to accommodate you very easily!

Remember, the discount code is only good until January 31st 2015, so get ready, get set… go!!  Happy shopping!

Katie Jonson being silly and posing with a framed print she modeled in

Read Full Post »

A Dream Called Santa Fe

Does anyone recognize what movie this blog’s title is from?  A+ to you if you do!

You guys all know about the cross-country screening tour that Peter S. Beagle, his publisher Connor Cochran and a beautifully new, restored version of the 1982 animated classic The Last Unicorn have been on, right?  Where you can see the film huge, in  movie theater, which, if you’re like me, you’d previously never had the chance to do before.  And it’s not merely a screening of the movie, although that would be wonderful enough.  The whole evening is an event, with Q&A sessions with Peter, prizes, costume contests, and Peter stays for hours and hours after each show to sign books and take photos with every single person who would like to do so.  You may remember that I was at their screening in Long Beach last August, when Connor introduced me and my work to Peter’s fans.  I also had the chance, while they were in town, to “borrow” Peter for a couple hours and turn him into DreamWorld’s King; an incredible honor, and something that I will remember for the entire rest of my life.

Aerie: Peter as the DreamWorld King – one of the five pieces on display at the Modern Fantasy Summit.

And you guys also remember how I’m now contracted with Connor’s publishing company, Conlan Press, right?  There’s a ton of stuff in the works with them that I don’t want to talk about quite yet, except to say that it will be very exciting 🙂  What is very safe to say for now is that the owners of the Jean Cocteau Cinema in Santa Fe, New Mexico, where Peter was going to be screening on January 25th decided to really up the ante at this show.  Not only will you get all the amazing things that happen at every event, but George R.R. Martin, author of the Game of Thrones books, will be there as well.  George R.R. Martin and Peter will be interviewing each other live on stage!  It will be spectacular.

And, as if that weren’t enough, the Jean Cocteau Cinema people decided they needed to have a unicorn fine art show as well 🙂

This Dying Body – one of the five pieces on display at the Modern Fantasy Summit.

A few days ago, I got a call from Connor asking how quickly I could get prints made from some of my The Last Unicorn-inspired pieces.  Thanks to Lauren, my go-to girl at POV Printing, I was able to get a rush order in and she printed off five huge, gorgeous pieces of my work.  They’re traveling with Peter, Connor and their assistant/wrangler Cat through Arizona and into New Mexico and will be beautifully displayed and for sale at the show!

I really have to take just a moment to say what amazing work POV does.  Every single thing I’ve ever had them print has turned out unbelievably gorgeously.  They use archival inks and thick, museum-quality paper, almost like a watercolor paper.  These are not flimsy, cheap prints.  The work they put into each and every print they make elevates it to another level.  I am so glad to have found them!

To Be So Full – one of the five pieces on display at the Modern Fantasy Summit.

So if you are at all in the area, I would strongly recommend getting tickets for the Modern Fantasy Summit!  The tickets will get you in to see The Last Unicorn movie, experience two of the greatest fantasy writers interview each other, all the usual perks of a screening, as well as getting to see the art show, featuring my work along with other artists’… which you can also purchase and take home with you 🙂

Now Has Come The Time For Silence – one of the five pieces on display at the Modern Fantasy Summit.

I wish I were a little closer myself so I could go to this once-in-a-lifetime event!  Traveling with ME is always a challenge, and I’m still recovering a little from traveling over Christmas, otherwise I’d drop everything and chase after Peter and Connor like Molly Grue after Robin Hood.  If you go, please take some photos and let me know what you thought!  And to satisfy my vanity, I would love it if someone could snap a few photos of my pieces up in the gallery 🙂

I hope you guys can go and let me live vicariously through you!  Thanks to all who turn out!

In The Lilac Wood – one of the five pieces on display at the Modern Fantasy Summit.

Read Full Post »

Canary In A Coal Mine

I was contacted recently by a lovely woman named Jennifer Brea, who told me about the documentary she was making.  A documentary called Canary In A Coal Mine, which is all about ME.  She was getting ready to launch a Kickstarter to fund the project, and asked if I would be willing to donate printing rights as part of the rewards offered.  Of course I said yes 🙂

The campaign only began four days ago, and they are already almost to their base goal of $50,000.  In FOUR DAYS!  Clearly there are a lot of other people who want to see this documentary being made just as much as I do!  If they surpass their initial goal, it will only make the film better and better, so please do consider donating to their very, very worthy cause.  And you can get prints of mine as part of your reward for doing your good deed!

The series of prints in an special run on pearl paper, which gives them all a delicate, magical sheen.  I’d been toying with the idea of pearl paper for some time, and this seemed like the perfect setting to break them out, to make the reward prints even better!

Please visit the Canary In A Coal Mine page, spread the word, and donate whatever is possible for you!  I am really proud to be able to help this project in whatever way I can… it’s going to do so much good for so many who are suffering.  Check out their very moving preview below, and thank you to everyone who has or will contribute to it!

 

 

Martyrs To A Name – a semi self portrait with Aly Darling, about the harm caused when the US officially changed the name of our disease from “myalgic encephalomyelitis” to “Chronic Fatigue Syndrome.”

 

Read Full Post »