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It’s been quite busy in my life since I last posted!  It seems that’s always the way though, isn’t it?  Part of what I’ve been so busy working on is what I’d like to show you in this post: three whole new product lines!

Well, to be strictly honest, one is brand new and the other has been around for a bit but I’m just getting around to blogging about it.  I’ll start with the one I’m most excited about and I think you guys will be excited about too!

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I have a new Etsy shop!  I’m sure you guys know about the one I use to sell my prints through; this shop is for completely different kinds of things.  I’m calling it “Spiritual Skincare!”  Let me tell you how this came about.

I have long been on the quest for the perfect skin serum; something completely natural, vegan, with ingredients which not only help my skin in the short term, which prevents premature signs of aging, but is also extremely gentle, healing and will only make your skin healthier and healthier the longer you use it!  I’d narrowed in on several key oils that I knew my skin responded to well so I decided to create my own custom blend!  And, as it turns out, the oils are all incredibly good for your hair, nails; basically every single part of your body!

In addition to all that, you also have the option of having vitamin C serum added to your oil blend!  Vitamin C acts something like a bouncer for your skin; it keeps all the bad stuff out.  Anything that might try to sneak it, it finds and throws it out on its ass!  I have not been able to find reliable information on what vitamin C serum might do for your hair; until I do, I can’t recommend its use in hair, but it’s fabulous for your skin!

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Artos The Bear’s Wares: Spiritual Skin Care Products and More – All images © Sarah Allegra

My exact blend is proprietary, but I can tell you that my blend contains vegan squalene oil, argan oil and rosehip seed oil (and vitamin C serum if you choose).  I won’t bog this post down even more highlighting exactly what INCREDIBLE things each of these oils do, but I’ll give you a brief highlight!  My serum:

  • Is all natural, vegan, completely cruelty-free, fragrance-free and pure, with no fillers.
  • Is extremely gentle, suitable for all skin types and (despite it being an oil) actually fights acne!
  • Fights virtually ALL signs of aging – lines, crows feet, sun damage and stimulates cellular membrane and tissue regeneration.
  • Heals scars and stretch marks, dark circles, under-eye bags and acne.
  • Is extremely moisturizing, penetrates deeply, yet absorbs quickly and feels light, not heavy.
  • Is incredibly good for your hair and scalp!  It can be used as a flyaway-tamer, added to your conditioner or styling product, or a few drops can be used on their own for a light hold (I love using it this way myself).
  • Comes in three sizes so you can try a little before you stock up.

In addition, to make it really my kind of serum, each and every bottle is infused with the divine, healing energy of the angels and Unicorns.  Every time you apply your serum, you are getting a little dose of unconditionally-loving, magical, ethereal angelic and Unicorn energy absorbed straight into your being!  Geoff even asks me to apply it to him every night!  I utterly adore it, I’ve gotten wonderful feedback from it and I think you’ll love it too.  🙂

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I think you all know that I’m a big fan of the site Fiverr!  It’s a wonderful site where people sell products (mostly digital) and services of ALL kinds – all starting at, you guessed it, $5.  What you probably don’t know is that I have several of my own gigs on Fiverr!

Do you like the textures I use in my images?  I sell my own grunge-style textures in this gig.  For the base order, you get a total of 10 textures, perfect for adding atmosphere and mood to any image!

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One secret trick of mine is using layers of light textures!  I use them in almost every single image I create these days.  They can be a bold or subtle wash of color, which helps lend a dreamy, ethereal, beautiful look to your photos!  I have a LOT of these textures which I have all shot myself, so while the base gig starts at $5, if you want more, you can get up to 25 at a time!

 

I’ve been a Reiki practitioner for a number of years now.  It’s a really beautiful and powerful energy healing modality which does not even require the person I’m working on to be in the same room as me.  Pure, healing energy knows no boundaries of time and space!  I’ve had wonderful results from this as you can see by the reviews, and I can also attest to having had incredible feedback from people not on Fiverr!  I offer Reiki sessions for people (yourself, a friend, a child, anyone whose permission I have to send energy to), or I can send it to the animal (wild or domestic) of your choosing.  Animals respond very well to energy healing!reiki5r

 

Now that I am an officially certified Unicorn Healing™ Practitioner, I can also offer Unicorn healings, again for yourself (or any person who has given permission) or animals, wild or domestic.  Unicorn healing is like nothing else I’ve worked with or done before.  It has a very different feel than Reiki energy; neither is better than the other, they’re just different.  The best way to describe it is that Reiki feels more earthy and grounded, while Unicorn energy feels much more celestial and divine.  I have been COMPLETELY blown away by the incredible changes I’ve seen in myself and others, often after just one treatment!

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Both kinds of energy healing work to restore balance and vitality to every part of you; mind, body, emotion and soul.  By its own nature, it can never harm and will always work for the recipients’ highest good.  I highly, highly recommend trying one of them, it can be an absolutely life-changing experience!

Last for my Fiverr gigs, I now have an oracle card reading gig!  I tested this with both friends and strangers before I decided to start charging, even just $5, to make sure it would be worth peoples’ money.  Boy, was that an overwhelming success!  I really enjoy doing oracle card readings, especially with the beautiful deck my sweet friend Andrea gave me!  Got a question?  It doesn’t matter what kind of question it is, the cards will help reveal the answer to you!

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Lastly, this is not a new product, but it has a whole new price!  My online self-discovery-through-photography course Introspective: An Online Quest is currently hosted on Udemy.com.  Udemy recently changed its pricing structure and capped all its classes at $40, which is WELL below what Introspective is worth.  However, until I figure out a better way to deal with a host for the class, I’m happy to let people get in on this deal!  Prior to this, Introspective was priced at $75 for the entire 8-week course, so enjoy getting almost 50% off until I have time to deal with this!  🙂

Here’s a brief description of what Introspective is all about: Introspective is an eight-week, on-line course in which you will use your camera to explore your inner self.  Each week, you will receive assignments challenging you to delve into your secrets, fears and joys.  This is not a class about camera basics such as f-stops, apertures and shutter speeds…although links to helpful technical articles will be provided.  This class is about digging deep into your core and capturing what you find there in photographs.

Introspective

So there you guys go!  Enjoy, and please feel free to leave feedback on any of these!

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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

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!

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! ❤

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Hey guys!  2016 calendars are HERE!!

First, let me quickly update those of you who are regular readers.  You may remember my Preparing For Battle post where I talked about… well, preparing for the big battle I was about to face.  I was sick with stress and worry about it; it was honestly one of THE hardest things I have ever had to do.

But guess what?  I WON!!!  I’m afraid I still can’t give many details about the nature of the fight, but this is a huge, wonderful victory for me and will help make my life a little bit easier.  So thank you VERY much to each and every one of you who said a prayer for me, lit a candle, sent Reiki or good thoughts… they all melded together and produced one hell of a win for me!

Now, with that’s said, let me tell you about my calendars!

Sarah Allegra 2016 Calendar

Sarah Allegra 2016 Calendar

These guys are always a favorite; they’re probably my single best-selling item.  And with good reason!  Red Bubble packs a ton of quality into these babies with thick paper, almost like a heavy cardstock or watercolor paper.  The pages have a subtle sheen without being shiny.  The daily squares are big enough to make notes in.  I still have calendars (both my own and from other artists) from years ago which hold up beautifully, even after years of flipping through them to see the lovely pictures!

Sarah Allegra 2016 Calendar back

Sarah Allegra 2016 Calendar

This also brings something else up: getting this calendar is like buying 12 small prints of my work!  Each year’s images are different, making each year a unique and collectible item.  And if you want to keep the calendar after the year is over, like I do, to enjoy the images whenever you want to pull it out?  That’s fine!  Red Bubble does a great job at printing the images and making them look the way I want them too; this is a solid buy!  You’ll get images which span across my series, from my DreamWorld, Enchanted Sleep, Eternal Storms to self portraits, which feature Katie Johnson, Dedeker Winston, Travis Weinand, Noemi Regalado as well as the beloved author of The Last Unicorn, Peter S. Beagle!

Also, while I was uploading a diptych of Travis for one month of the calendar, I noticed that it made a really awesome pattern for Red Bubble’s leggings.  So get your Travis-printed leggings now!  😀

Travis Leggings

Travis Leggings

All of us independent artists and craftmakers REALLY appreciate your purchases, whether it’s for Small Business Saturday, Cyber Monday, regular holiday shopping, something for yourself, or any other reason you might have!  Please keep shopping small in mind during this holiday season!

And remember if you want to support my art with your purchases, there are always museum-quality prints of my images that you can buy, my online self-discovery-through-photography class Introspective, the Peter S Beagle e-books that have my images on their covers (but buy his other books too!), along with Red Bubble which has a myriad of other items with my images on them.  Everything from stickers to leggings to mugs to laptop/iPhone covers.  There’s really something there for everyone 🙂

A smattering of offerings from my Red Bubble shop

A smattering of offerings from my Red Bubble shop

And don’t forget to check out my friend Jessi’s Etsy shop, The Hopeful Spoon, full of beautiful, hand-made earrings (and other jewelry pieces coming soon!) full of lovely semi-precious stones at very reasonable prices.

One of Jessi’s many offerings!

She also has a section dedicated to raising awareness about different illnesses, which would be perfect for the spoonie in your life!

The Hopeful Spoon

Thanks to everyone for your patronage!  Artists like myself could not survive without help from people like you 🙂

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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!

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

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

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 after I started experiencing ME-related hair loss

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

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

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

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

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!

.  : ME/CFS research will be useless with the name SEID.

.  : SEID is still only naming a single symptom.

.  : ME/CFS patients will not be helped by SEID, it will only hurt us further.

.  : MECFS patients reject SEID and demand the name ME!

.  : Why are we spending a million dollars redefining and renaming what doesn’t need it?

.  : ME/CFS patients WILL NOT be bullied into silence over the proposed name SEID.

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

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

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.

 

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First of all, happy Thanksgiving to all who celebrated it!  I had planned on a Thanksgiving post, listing what I’m grateful for and whatnot, but I woke up yesterday with a swollen, very unhappy wrist on my dominant hand.  I’m being ginger with it today, and trying to really limit my computer use, but I did want to get this timely post out.

So, the holiday shopping season has officially begun!  I, for one, despise the idea of shopping on Thanksgiving or Black Friday.  Crowds are not my thing in the best situation.  Even a gentle trip to the grocery store on an average day can be too much for me.  This is my hiding out period where I really try to leave the house as little as possible.

A less stressful approach to holiday shopping, in my opinion, is in Small Business Saturday and Cyber Monday.  Now, I may or may not technically qualify as a “small business,” but I think I fit the spirit of it if not the letter 🙂  You don’t get much smaller than buying from a single person!  And Cyber Monday?  Heck yeah, I’ve got that covered!  Everything of mine is available online.

And what, pray tell, are these wondrous wares?  Well, let me give you a little run-down!
I have blank greeting cards available at my Red Bubble shop!

One of the many blank greeting cards I offer.

Personally, I love having a stash of blank greeting cards in a drawer, ready to go at a moment’s notice!  You never know when you might need them.  And I’ll confess, I sometimes buy cards for their sheer beauty, with no intention of giving them away.  Those ones usually end up on my wall somewhere.  Either way, they’re very well-made, handy and inexpensive!  And if there’s an image you’d like but don’t see in my shop, let me know; in almost every case I can add it for you!  Stocking stuffers, anyone?
I also sell 2014 collectable calendars!

Sarah Allegra 2014 Calendar

Sarah Allegra 2014 Calendar

Each year I put out a new calendar with 12 of my most popular recent works.  This year’s batch includes images from my DreamWorld and actor portraits series as well as my CFS/fibro/ME series Enchanted Sleep.  I genuinely love the quality Red Bubble puts into their calendars; they’re printed on gorgeous, thick, heavy paper which is perfect for jotting down as many notes and reminders as you’d like!  Plus, I love the extra magic the calendars sprinkle into every day.  And need I tell you they make excellent gifts?  🙂

On a side note, I keep my Red Bubble prices low so that they’re available to as many people as possible.  I don’t make much from these sales, but it’s important to me that as many people as possible have access to my images.

For those looking for a unique gift, either for themselves or someone they love, my on-line, self-discovery-through-photography course Introspective is an excellent choice!

Introspective

Introspective

Introspective is a fun and truly unique, eight-week experience.  Each week I will guide you through a new concept to explore with photography, such as love, fear, secrets and joy.  What do those subjects mean to you?  And how would you portray them in a photograph?  Let’s find out!  Self portraiture is encouraged (as I think it’s an invaluable way to know yourself better), but by no means is it required.  At the end of the eight weeks, you’ll have gotten to experience yourself in a new way and learned things you never knew before.

This would be perfect for your artsy sibling, the person who has everything or anyone with a desire to have an adventure and come out knowing themselves better!
And of course there are always prints available!

Sarah Allegra Etsy Shop

I sell prints through my Etsy shop, which are printed by an amazing local printer.  They are printed on museum-quality, archival, thick, luscious paper which is not unlike watercolor paper.  All the images are printed in very small, limited edition runs and come individually signed and numbered.  They come in three different sizes and are truly stunning.  These really have to be seen to appreciate how beautiful they are.  The level of detail captured in these prints is spectacular.  And as with the cards, if you would like a print of something and you don’t see it in my shop, just let me know!  In almost every occasion, I can accommodate your request.

Thank you to everyone for supporting my art through your kind comments, well wishes and purchases.  I so appreciate all of them and I hope everyone has an excellent holiday season!  Here’s a lovely DreamWorld image, featuring the gorgeous Katie Johnson!

Faerie Dust

Faerie Dust

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