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Shades Of Sleep: Invisible Illness Day

Sometimes I get a little daunted when May 12th rolls around each year, wondering what new I can say about the subject.  If you didn’t know, May 12th is Invisible Illness Day; a day to bring attention and awareness to illnesses and diseases which don’t manifest obvious outward symptoms for the world to see.  If someone has the measles or is in a wheelchair, you can hopefully tell that just by looking at them.  Diseases like fibromyalgia*, Chronic Fatigue Syndrome*, Crohn’s Disease, multiple sclerosis, mental health problems, Complex Regional Pain Syndrome7, Celiac Disease, lupus, rheumatoid arthritis, Lyme disease and the one I have, myalgic encephalomyelitis* (ME for short) are considered invisible illnesses.  This is by no means a comprehensive list, just a few examples.

Shades Trio

According to Wikipedia and the 2002 US Census Bureau, 96% of chronic illnesses are invisible.  This adds in an enormous extra challenge in obtaining proper medical care and treatment as well as being misunderstood by the population in general.  If people don’t know that there are quiet, private, hellish wars being fought every day by millions of people all over the world, how can we ever expect our treatment to improve, let alone find cures?

That’s why May 12th is so important.  We, the sick, need people to understand, to care, to help us advocate when our treacherous bodies won’t allow us to.  Awareness is the critical first step in any change happening.

Why is it so important that we treat ME?  What makes our disease so special?

It can be fatal.  People die from this.  If not from the disease ravaging our bodies for years and decades, then it often comes by our own hands as we can no longer endure the daily torment.

No one should have to live like this.  As someone who has what’s considered only a “moderate” case of ME, I can tell you it’s a living hell.  Pain is nearly constant, sometimes to the point where I’m in tears and desperately wishing to die.  It takes away the plans you had for a normal, fulfilling life.  Careers, hobbies and passions are taken from you.  You either simply cannot expend the energy on anything non-essential, you lack the basic funds to sustain most pursuits because most of us can’t work, or your brain is compromised by what we call “brain fog” and you’re unable to focus on and accomplish anything.  (More on brain fog later.)

We deserve to live happy, fulfilling lives, just like everyone else.  When you’re constantly in pain, always exhausted and unable to think clearly, this doesn’t leave much room for whatever kind of life you wanted for yourself.  And when I say exhausted, I don’t mean that we’re tired because we didn’t sleep well the night before.  On a good day for me, it’s like how other people when they have the flu.  A constant, crushing weight that makes the slightest exertion a Herculean effort.  On bad days all I can do is lay in bed and drag myself to the bathroom periodically.  Sometimes even feeding myself is a challenge.  I might have to choose between feeding my animals or myself, because I don’t have the energy for both.  And of course the animals always win; they’re my responsibility.

I am mostly house-bound and I require help with the sort of tasks I used to take for granted.  Forgot something at the store?  No problem, just go back tomorrow!  Nope, not with ME.  Any time I take a trip outside my home, I have to plan at least one full day of recovering at home from it.  If it’s something late at night, very noisy and extra stimulating, plan on 2-3 days at least.  (But frankly, late night, noisy, stimulating activities happen EXTREMELY rarely because of the damage they cause later.)  When I do gather my strength to photograph models, that is my exertion for the entire week at least.

ME is extremely isolating.  You can’t just go hang out with friends.  You can rarely make it to family functions.  Last year, I had to miss a surprise party thrown for my own mother, something which still upsets me today.  I was just too exhausted to go, and I knew that if I REALLY pushed myself and forced myself to go, I would pay for it for a very long time.

ME is vengeful god.  If you violate any of its insane decrees, you WILL be punished.  Probably for a long time; sometimes forever.  There have been cases where someone with ME did just a little too much one day, they spent the next day in bed… and then they were never able to leave it.  At the same time though, if you try and do as little as possible, your energy supply will shrink and you’ll be worse off too.  Damned if you do, damned if you don’t.

Right now ME received approximately 5 million dollars a year in funding from the US government.  To put that in perspective, that’s about the same amount given to researching hayfever.  Male pattern baldness gets at least four times as much.  HIV/AIDS, which is comparable in both frequency in the population and severity of illness, gets about 600 times that amount.  I’m not saying that HIV/AIDS patients shouldn’t receive that much; I think they should!  What I’m saying is that ME needs to be recognized at all levels of society and government as the deadly, hellish disease that it is and get proper funding as well.

This year I decided to do something that was a big stretch for me physically.  I planned a set of self portraits (all shot at the same time) with a rather complicated makeup look for my Enchanted Sleep series on living with ME.  Doing that much makeup on myself normally would have been enough exertion for one day for me, but that plus shooting the images, even with Geoff’s generous help, put me in bed for days afterward with migraines pounding my head.  But I’m not sorry.  It was worth it.

Oh yes, brain fog.  (Which I’ve got a bit of as I’m writing this.)  It’s like when you have a fever and can’t concentrate or think clearly.  Sometimes it reaches new heights where people suddenly can’t spell, remember their names or understand their native language.  Most days it’s more like mentally wading through a bog, at least for me.  I decided I wanted to portray this visually in the images I created since it’s such an annoyance at best and terrifying at its worst.  I think it will be obvious how I incorporated that element into the images.

I have the video I took of me applying the makeup as well as the finished photos to show you, but I want to issue a challenge as well!  I want you: you, who are reading this right now, to #GoBlue4ME!  Why blue?  Because that’s our disease’s awareness ribbon color.  What does “going blue” mean?  There are any number of things you could do to go blue.  I created a couple images that you could use as your profile photos for May 12th, or even this whole week (or more!).  You are more than welcome to download them and use them however you’d like!  You could dress all in blue and post a photo of yourself with the #GoBlue4ME hashtag on any of your social media accounts.  You could get a bunch of blue balloons, take a photo of them and use the hashtag on them too; anything blue works!

For makeup artists, I’m issuing a special challenge.  As you’ll see in my video applying my makeup, I used ONLY blue shades for this entire look.  Foundation, concealer, eyeshadows, blush, mascara, EVERYTHING.  I challenge you all to do the same and post your looks using the #GoBlue4ME hashtag!  If you’re on YouTube and create makeup tutorial videos, this would be perfect for you.  There are so many fun makeup challenges going around YouTube, Instagram and other social media sites; let’s make this the next big trend!  You’ll not only be stretching yourself, you’ll be contributing to a wonderful cause and helping us raise awareness for the whole world!

I did allow myself to use shades of teal, green and purple in my look because they’re offshoots of blue and I really thought it would make for a better overall look, so feel free to do the same.  And you don’t have to make the blue tie into your foundation color as well, but bonus points to you if you do. 🙂  Let’s have some fun, create gorgeous looks and help a community in need of a lot of support by coming together!

Ready to see the video and my images?  Here you go!  I’ll be releasing the images individually over the course of the week leading up to May 12th, but you can always find them all here.

And please, pass these around!  Share the links, video and images with anyone and everyone!  We have to make a lot of noise to get the change we so desperately need.  You have my full permission to share far and wide!

And please, if you take up the #GoBlue4ME challenge, let me know!  Of course, I can search the hashtag and see what you guys have been up to, but I’m very excited to see what you come up with!

One last note, your going blue does NOT need to happen on or before May 12th.  Keep doing it as long as you’d like to!  The longer we can keep the word spreading, the better.

Thank you to absolutely everyone who has and will participate in this!  You are helping so many more people than you know.  I thank you from the deepest wells of my heart.

Download these images and make them your profile photos for a day!

ME avatar 1

ME avatar 2

Shades of Sleep

Shades of Sleep, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

Shaed of Dreams

Shades of Dreams, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

Shades of Blur

Shades of Blur, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

*[There are various theories and arguments about weather ME, CFS and fibromyalgia are all the same disease or separate.  You’ll find as many different opinions as there are sufferers.  It is my personal belief that they’re probably all the same thing, or at least all very closely related.  Some people are extremely militant about using the “correct” name; I find it more important to help people understand by using the name they’re most familiar with.  I tend to use them all interchangeably depending on the situation and who I’m talking to, but if I had my druthers, I’d simply call it ME and be done with it.]

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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!

Unicorn Healing Header

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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I want to give you all a few quick updates here on the blog.  First though, I’d like to introduce my first Blackfish-inspired photo today, titled “Concrete Cell.”  It is the first in a series, but I was too excited to share this photo to wait until they’re all finished.
The often-cited comparison of SeaWorld’s whale enclosures being the equivalent size of a bathtub to you or me not only deeply saddened me, but also sparked the idea for this photo.  Imagine it.  When you’re not forced to perform, you live in this sad, colorless, sterile world of concrete and shadows.  The intelligence of these whales makes their living conditions even crueler and more heartless; sentient beings shoved into tiny compartments where they die a little more every day.
If you also agree that SeaWorld’s practices are abusive and need to be changed, please see my open letter to Jack Hanna regarding his defense of SeaWorld.  You can read more about the issues there and take action with petitions to sign!Thank you to Katie Johnson for her beautiful underwater modeling in this!  Underwater modeling is a skill unto itself and quite tricky, but she makes it look effortless.
Concrete Cell

Concrete Cell

Secondly, there has been a lot of response to my post about suicide and Chronic Fatigue Syndrome/myalgic encephalomyelitis.  This is one of those topics that is very, very real, but rarely discussed in public.  Or even in private, for that matter.  There is always a correlation between any kind of chronic illness and suicide, because there is only so much a person can endure.  This post has been shared quite a bit already, but I would love for it to reach even more people, and hopefully find its way to the original person who found my blog by searching “I have Chronic Fatigue Syndrome and I want to give up.”  I understand that feeling.  My blog will rage in its way against cruelties, abuses and atrocities, but its arms are always open to the ill, the hopeless, the voiceless and those in need.  This is not a place of judgement.  This is a place of love and acceptance.

Lastly, my 2014 calendars are now available!  Printed on thick, gorgeous paper, each month features a popular new image from my most recent works, including photographs from my DreamWorld, actor portraits series and my CFS/fibro/ME series Enchanted Sleep.  So add a dose of magic to your day…or the day of someone you love…with a collectable calendar!

2014 Calendar

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To give credit where it’s due, I have to say that I originally got the idea to shoot my grandmother for DreamWorld from Ashley Lebedev’s beautiful portrait of her grandmother.  It immediately struck a chord with me, and I began brainstorming concepts for my grandmother right away.

My Gramma is a really cool lady. She’s led a fascinating life and has been a inspiration to me of being a strong, spiritual, independent, loving woman. She taught kindergarten for 30+ years (and is endlessly patient and cheerful, as you would expect), is well read and recently got her first Iphone. I have such fond memories growing up with her, and I am so glad to have her in my life! I wanted this photo to celebrate her, and all that she is to me… or at least all that I can cram into one photo 🙂

My grandfather tragically died quite suddenly of a heart attack when I was 17. He was the love of her life… and really, the love of everyone who he came into contact with. He was a truly remarkable man, and I will tell you more about him one day when I finally get the photo honoring his memory shot in a way that I’m satisfied with. But for now we can say that he was extraordinary, and everyone was shaken by his loss, most of all my grandmother. I can only imagine how incredibly difficult and painful that must have been.

But Gramma handled it with such grace and strength, I was deeply impressed, even at my young age. She delivered a celebratory and wonderful eulogy at his memorial which left everyone smiling through their tears. And since then, though we all miss him greatly, his memory has been kept alive in a spirit of appreciation and love.

After my grandfather’s death, Gramma became even more involved with her church and eventually became a deaconess! For many years she helped lead a support group for those who had lost loved ones, something she could draw on her own experiences of her path to healing and let others know that it was possible to get through, no matter how dark it looked at the time.

So when I sat down to figure out what I wanted her photo to be like, I tried to distill Gramma’s essence into a single image. I saw her as a gentle leader, always leading by example, indescribably warm and accepting, looking for the best in people, and of course someone who is quite spiritual as well. It seemed like a shepherdess would be the best way to portray all of these qualities. I especially wanted to play up her radiating light in a world that is often dark, so I began to think of ways I could show that as well. A crown of light, I eventually decided, would be just perfect.

So, now to build a crown of light. After Googling a lot, I discovered electroluminescent (EL) wire! It’s wire that comes in a wide range of sizes and colors and every bit of it glows. It’s not just a string of LEDs in a plastic tube, this stuff actually produces solid light all on its own with a handy little battery pack. Perfect! I ordered some and eagerly waited for it to arrive.

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I wanted to give it a little bit of an art nouveau flavor, since that’s one of my favorite visual styles.  I started building a light wire frame, enforcing it as I went.

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After I had the frame fairly sturdy, I started adding in nouveau-like swirls with the EL wire.  You can see one of my Mucha books under the crown for inspiration as I went along.

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Ok!  It was a little rough, but the general shape was there and it definitely glowed!

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At that point I strung along some very small, light, and also battery-powered LEDs, which I would encase in a small flower.  You can see one here covered with a flower while the rest are bare.

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The finished crown!  I knew I’d be doing some adjusting of it once I actually saw it on Gramma’s head, so I didn’t worry about making it 100% perfect right then, but the bones were all laid.  Now there was the problem of finding a lamb….

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Google again came to my rescue by connecting me with Terry from Task Farms.  Terry is just a sweetheart of a man.  He runs the farm just out of the pure pleasure of it and has lots of sheep and goats.  None of the animals end up on anyone’s dinner plate, which made it an even more perfect place to shoot!  I ended up getting several photos taken that day, but you’ll hear more about the farm in detail when I get the rest of the images worked up.  As it happened, he had an adorable and very silly little lamb named Too Cute who was just perfect.  Task Farms is out near Palmdale, which is a bit of a drive from here, so Katie, Brooke, Meredith (who wanted to take behind-the-scenes photos) and I all drove out together.   I had Katie put on the costume Gramma would be wearing, chose a neutral location and let Katie be Gramma’s stand-in.

Thanks to Meredith Lynn for coming along and taking great behind-the-scenes photos like these!

Thanks to Meredith for coming along and taking great behind-the-scenes photos like these!

Once I had the photos of Too Cute, I set up a shoot with Gramma, which was delightful.  She is a natural model, and I found out during this that she had been a live model for art classes while she was in college!  What a fun fact to know about her 🙂

So what do these photos convey to me?  They show my grandmother being the strong, gentle, and completely loving woman that she is.  She is a ray of light in darkness, someone who always lifts you up, cares for you and supports you.  She has been one of the most supportive people in my life when it comes to my art, always encouraging me and loving what I do… and I sincerely think it’s not just because she’s my grandmother and she has to like whatever I do, but because she genuinely believes in me and loves what I do.

So please meet my grandmother, Lucea, a truly wonderful and remarkable woman who I am so thankful to have in my life, and to have had the chance to photograph her!

The Shepherdess

The Shepherdess

The Shepherdess - detail

The Shepherdess – detail

The Shepherdess - detail

The Shepherdess – detail

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