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Oh my goodness… so, so much has happened recently that I feel completely overwhelmed in sitting (or, rather, laying) down to tell you about it!  But I have a new image to share with you and I really wanted to post it and maybe give you guys a little gloss-over update at least, so I’m just going for it.  If I let myself think about it any longer, I’ll just get frozen with intimidation over how much I’d like to cover!

First news: health is poor.  I mean, yes, you all know my health is pretty much always poor, but it’s been even more so lately.  I feel like it’s been slowly sliding downhill over the past… year?  year and a half?  two years?  But the last six-to-nine months have been extra bad.  I think I’ve told some of you at least about the “hot flashes” I’ve been getting.  It’s actually quite a lot more complicated than calling them “hot flashes” implies, but I don’t know a better name to get the general idea across with, so we’re going to call them “hot flashes.”  What it really is, is my body suddenly seems unable to regulate its temperature properly, which sends me into sudden, drenching sweats, often while I’m shivering with cold at the same time.  Very similar to the sort of sweats you get with a fever, but it only lasts a few hours, it comes and goes quite randomly, I have absolutely no other fever symptoms and it seems to ONLY happen in the morning (because that’s when my day is busiest, I have the most appointments scheduled, etc, so it can be the most obnoxious).  This sounds like something that’s just annoying, which it is, but it’s quite a bit worse than that.  It makes me weak and lightheaded, it’s not something I can simply push through by will alone; I might have to cancel appointments or send Geoff to the grocery store on his own.  We both utterly detest grocery shopping, but I’m much too weak to do it on my own anymore, and if I at least go with Geoff, it’s company for a task no one enjoys, so I always feel bad if I have to make him do it by himself.

These were getting so bad and disruptive for a while that I saw my GP about it.  He tested my thyroid and a couple of other things in my blood, examined me, decided it wasn’t anything menopause-related (which, yes, would be QUITE young to start having them, but stranger things have happened), said it sounded hormonal and sent me on my way.  I saw my neurologist, he said it wasn’t anything neurological and I should probably see an endocrinologist; a doctor who specializes in looking at your hormones.  I also happened to see my pain specialist during this time just for my every-three-months-check-in, and mentioned it to him, and he agreed it sounded hormonal, but was outside his expertise.  So I did some research, found an endocrinologist nearby who got good reviews online and made an appointment.

The first bad sign was that the endo’s office doesn’t accept credit cards of any kind, only cash or checks, which they had not mentioned in ANY of the conversations I had with them when I set my appointment up.  Not only is that just absurdly behind the times, but I, like most people this day and age, very, very rarely carry either cash or a checkbook on me.  Before going to this doctor, I couldn’t tell you the last time I wrote a check.  Thankfully, I happened to have shoved my checkbook in the bottom of my purse anyway, but I had a mini panic attack in the waiting room wondering how I was going to pay these people.

Eventually I found it though and went into my appointment, which was mostly going over my medical history with the doctor and explaining what the problem I was seeing him for was.  Obviously, my medical history is much more like something George RR Martin would write about than a quick-read paperback, but the doctor interrupted me quite a lot as I tried to tell him details which were important and extremely pertinent to the hot flashes I was seeing him for.  Obviously, I did not care for that, but it is a very common problem with doctors.  If I wrote off every doctor who interrupted me while I was explaining things, I wouldn’t have any doctors left to see.  Anyway, he ALSO agreed it sounded hormonal and said we’d run a bunch of blood tests to see what was going on.  We’d be repeating everything my GP had already run because, the endo said, his tests were more thorough.  Ok, fine.  Six vials of fasted blood later, they were sent to the lab, Geoff bought me breakfast and I waited a week’s time until I could get my results from the doctor.

In this appointment (paid for with the check book which I’d triple-checked was still in my purse after the stress of the first visit), the doctor went over each page of the bloodwork results with me, explaining what was tested and how every single thing came back normal.  My blood was normal, thus, I was “perfectly healthy!” and did not need to see him any more expect for in another six months to recheck my blood and make sure it was still all normal and I was healthy.

Obviously, I am not healthy.  Even if you discount my mountain of other ME-related issues, the fact that I was presenting with extremely hormonal-sounding problems should indicate that something is amiss.  This doctor had absolutely no interest in finding out what this life-interrupting issue was though.  The impression he gave me was that he thought I was an overly worried, mildly hypochondriac girl getting her pigtails in a twist over nothing and that showing me that my bloodwork said there was nothing wrong would make the problem go away, because it was  probably something I’d dredged up on my own through pure will.  But the most offensive part of all… he did not check one single motherfucking hormone.  Not ONE.  On a case where three other doctors all had said the issue sounded hormonal, I told him I was concerned it was hormonal, he didn’t bother to check anything.

I’ve since been told by other people who have to see endos regularly that you usually have to specifically ask them to check your hormones, if that’s something you want.  WHY???  You don’t have to do this with ANY OTHER medical specialty.  I don’t have to tell my neurologist to check my brain, I haven’t had to tell my gynecologist to examine my lady parts.  How is this something that is not only allowed, but is COMMON in this one niche???

At the time he was going over the bloodwork with me in the room, I was trying to control being wildly disappointed over having yet another problem come back testing as “normal” and being shunted off again, again being treated as if I was making this all up, again being patronizingly patted and being told to not worry my pretty little head about it.  Look, I’m sorry that my disease isn’t something they teach a lot about in medical school, I really am.  I’m sorry that most doctors feel threatened when confronted with something they can’t simply write a prescription for and it’s solved.  I’m sorry that it makes them feel insecure, as if they don’t know what they’re doing because I don’t have an easy fix.  I am far, far sorrier about that than any doctor who’s treated me like a hot potato could ever be.  But I do not go around to doctors’ offices for fun to mock them for their lack of knowledge.  I go in with an open mind every time, despite years of consistent disappointment, hoping that, just maybe, this will be the time when I get an answer.  Not even THE answer, just a part of it.  But to not test any hormones for a presenting issue that, to every lay-person and doctor I’ve spoken to, sounds extremely hormonal is inexcusable.  I spent a lot of money in copays, I spent six vials of blood my body could have used, I spent a lot of time gearing up for appointments and recovering from them, I spent incredibly precious energy getting to my appointments, getting tests done, and sobbing after my last appointment as my hopes were again dashed and I realized it had all been wasted.  The absolute least the doctor could have done was run the tests I wanted done but didn’t know that I had to ask for specifically by name, because that’s how endocrinologists are.

Each time I have one of these horrible experiences with medical professionals, it makes it so, so much harder to even fathom trying again.  Why should I if most of them are going to just call me crazy and kick me out of their offices as quickly as possible?  And of course I know that I have to keep trying because giving up isn’t an option, but for fuck’s sake, can’t they at least try and meet me in the middle somewhere?

After that edifying experience, I couldn’t even bear the thought of looking for another endo and starting the process over again, even knowing now that you have to ask for your hormones to be tested.  The wound was just too raw.  What I did have was an appointment set up with Celestine Grace, my very favorite medium, who’s helped me a lot in the time we’ve been working together.  I asked her what would help my body and she told me to take rose hip supplements, which I knew are very high in vitamin C.  They’re cheap and easily available from Amazon, so I got a bottle and started taking them.  And you know what?  Within a couple weeks, my hot flashes had gone down considerably.  They still popped up now and then, but the difference was huge.  I ran out of them and it took a few days before I could get my replacement bottle in, and while I was off them, my hot flashes spiked again.  I’m back on them now and they’re going back down, but it might take a couple weeks, like it did the first time.

I am so, so grateful to Celestine for that bit of advice and for helping to turn around a very bad situation (and also all the other help and advice she’s given me over the year or so we’ve known each other) but it’s so incredibly ironic to me that four conventional doctors couldn’t or wouldn’t help me, but my medium did.  It goes to show the strength of her talent while underscoring how little conventional Western medicine has to offer me.  Thank you, Celestine, I can’t tell you how much those rose hips have helped me!

The whole thing got me thinking that I may just need a whole different approach to my health, so I began to look into different specialists and alternative treatments.  I mean, that’s something I’m continually on the lookout for, but I was searching with a new urgency this time.  Giving vitamin C intravenously has been a growing trend… since my body had responded well to the rose hips, maybe it would like a more concentrated dose even more!  I have found a naturopath who is nearby, returned my phone call herself to discuss if we would be a good fit for each other and offers IV vitamin C along with a ton of other therapies I’ve been interested in but haven’t been pushed far enough to try yet, since most are expensive and not covered by insurance.  I have an appointment with that doctor next Monday morning, which will just be a consultation between one to two hours where we just go over my history, what changes I’d like to see and what treatments might be good for me.  They also test hormones.  🙂  As hard as it is for me to allow myself to be hopeful that maybe this time it will work, I can feel hope trying to quietly creep in.  I’ll let you guys know how that appointment goes.

As my body has gotten more and more painful and uncomfortable to inhabit, I’ve been turning to my own form of spirituality for strength and comfort.  It works for me.  It helps significantly, so much so that Geoff has noticed its effect.  It’s a bit too much to get into it all now, but it’s based in meditation and finding my own path up the mountain toward god/source.  A lot of it might sound like new age woo-woo, but I stick with what works, and this does.  My variety of spirit guides have been a big part of keeping me from utterly falling apart as things have gotten more and more difficult all around… just thinking about them makes me feel more peaceful.

I frequently mourn the health I once had, the life I once had, everything ME has taken away from me.  I mourn for those who I wish I could have gotten to know in this life and not just in the next.  I still mourn the loss of our previous home with our incredible neighbors, even though this place is finally feeling more like home and we have great new neighbors here.  Mourning is a universal human experience; I’m sure every one of you can think of things you mourn.

My new city has a lovely, tiny, serene, old little cemetery within what would be walking distance for most people from my home.  I wanted to shoot there when I had the excellent Teri Wyble over (quite a while ago now, I’m terribly behind on editing).  I didn’t know exactly why I wanted to shoot there, or what I was trying to say at the time.  This sometimes happens.  I’ve learned by now to just go with it, that its reason will become clear to me later.  That was the case with this image.  I asked Teri to imagine this was the grave of someone she loved and missed horribly; someone whose loss she still mourned.  I don’t know if she was tapping into a loss in her own life or if she’s just very good at imagining, but she portrayed exactly what I wanted:

Loss.  An inability to move on from the blow of death.

But I didn’t want it to be completely bleak.  The birds swooping in to comfort her speaks to me of the healing that comes after we let ourselves grieve.  Yes, you have to pass through the darkness first, but there is eventually light.  Sometimes it comes to you on feathered wings when you least expect it.

Whether the viewer has recently experienced this themselves or not, it’s such a common part of just being human, I wanted to create this.  Not to wallow in the mud of despair, but to remind myself that the heaviness will someday lift.  The pain will ease.  The grief will lessen.  Maybe even, a treatment will eventually work.

Thank you so very much, Teri, for your beautiful, emotive modeling!  You are a wonderful human being and model.  🙂

Enjoy, my friends!  If this speaks to you, I’d love to hear what it brings up if you’d like to share that in the comments!

Mourning Dove

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The mystery image revealed!

I’m so happy so many of you have joined in my print giveaway!  There is still time for you to enter, which is free and easy to do!  Scroll down below for details, but most of the ways you enter are simply by sharing/retweeting messages onto various social media outlets – all of which are now embedded in this post!  Just head down to the very end and you’ll see all the different ways you can participate without even leaving this page!

If you missed my last post, let me summarize it for you.  Today, May 12th is Invisible Illness Day; a day we dedicate to raising awareness about illnesses and diseases which can be deadly and have devastating consequences, yet show little to no outward sign.  Every single person with any of these illnesses, such as fibromyalgia, Chronic Fatigue Syndrome,  rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, (and, of course, myalgic encephalomyelitis, or ME, which I have*) has been told at least once, “But you don’t look sick.”  As if that invalidates our decades of suffering.  Oh, I’m sorry I didn’t meet your criteria of what a “chronically ill” person looks like; you’re right, I’m 100% fine!  In fact, I’m going to go complete a decathlon, now that I know I’m healthy.

Ok, so clearly simply not appearing outwardly sick doesn’t mean we aren’t ill.  In fact, most people who saw me on the street would probably assume I was a perfectly healthy girl; although one who doesn’t put a lot of effort into her appearance.  The reality is that I am partially house-bound, I can only drive short distances on very good days, almost all “out of the house” errands have to be done on weekends when Geoff can drive and help me, I’m in constant pain and exhausted every single second of my life.  My energy reserves are very low and I have nothing extra to spare on “getting pretty” before I go out.  As long as I’m wearing actual clothes (you have no idea how many times I’ve almost left my house without key clothing items), that’s enough for me.  Shove on a hat so I don’t have to address my naturally curly hair and I’m good!

While I never overly cared about what I looked like in public, I do find myself missing wearing pretty things.  I put far, far more thought and effort into picking out my pajama outfits that my regular clothes outfits.  I’ve accrued quite a collection of PJs at this point, so I can at least feel like those are cute and colorful.

While worrying about one’s physical appearance would seem pretty far down on the priority list of someone with a neurological disease with no cure, and it is for me most of the time, it’s a little more than that.  It’s just one more tiny slice of normal life that chronic illness takes away from you; one more reason for you to resent it.  I don’t actually want to wear the dresses getting dusty in my closet, I want the option to choose to wear them.  That make seem like a small difference, but from this side, it feels big.

While I don’t feel like I can spare the energy for looking beautiful most of the time, beauty is still deeply important to me, and it’s important that I leave the world with more beauty in it than I found it.  It’s like when you go camping with your dad; the camp site is going to be cleaner when you leave than when you got there (or at least, that’s how it was with me dad ;)).  I’ve come to realize that beauty is a big part of why I’m so drawn to art and to create; it’s a very tangible way of leaving the world a little more beautiful.  And in this case, it’s taking the hideous ugliness of disease and transmuting it into something lovely.

With that in mind, I want to introduce my latest image to you; the one I will be giving away a 10″ x 15″ print of on May 29th!

I spoke to you a bit in my last post about why this image is so special… and I’m going that a little bit again 🙂  For one thing, this is a DreamWorld and Enchanted Sleep crossover piece; the first image of mine which belongs equally to both worlds.  It spoke to me on both levels, and when I was torn about which series to include it in, I finally decided I didn’t HAVE to choose and it could live in both.  Because, while in some ways, DreamWorld is a bit of escapism and fantasy for me, it is not all sunshine and rainbows.  Not many of its dark characters have been photographed yet, but they will be introduced over time.  Even with their benevolent protectors, their King and Queen, the creatures in DreamWorld still have problems.

At the same time, it helps me to look at ME through the lens of myth and fantasy.  Viewing it as a dragon to be slain, a mountain to climb, a thorn in my side to bear; they all help me live with the reality of ME a little more easily.

I have long felt a connection between the stories of Sleeping Beauty and my experience with ME.  A poison, an enchanted sleep (giving birth to my photo series’ title), hope of an awakening under the right conditions… there is a great deal of overlap.  With that said, let me show you the new image!

A Poisoned Sleep And Kissless Dreaming Sarah Allegra - model: Katie Johnson

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra – model: Katie Johnson

Now, this file ended up being a composite of… I don’t even know how many images.  A LOT.  To give you an idea of the huge scale of the piece, here it is with a normal, full-sized image from another shoot with Katie on top of it.

A Poisoned Sleep And Kissless Dreams/Perennial Parisol  © Sarah Allegra - model: Katie Johnson

A Poisoned Sleep Of Kissless Dreams/Perennial Parisol © Sarah Allegra – model: Katie Johnson

So, just roughly eyeballing it, I’d say this is, what, 5-6 times the size of an average image?  And while my camera doesn’t produce the HUGEST files imaginable, this is still pretty darn big.  It was such an enormous file, I had to wait until I’d upgraded my laptop before I could actually work on it.  Any time I tried to edit it on my old laptop, it would crash my whole computer after about 10 minutes of work.  With my new laptop, it only crashes every few days, and usually only crashes Photoshop, instead of my entire system.  Much better 🙂  All said, this took almost two years from start to finish.  I’d pick it up, do a little work, get overwhelmed and put it back down.  Then I decided it had to be done in time for the giveaway, so that gave me the motivation to finish it up.

A Poisoned Sleep And Kissless Dreams © Sarah Allegra - model: Katie Johnson - detail

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra – model: Katie Johnson – detail

Katie really endured a lot for this shot, poor thing.  The area I shot it in was a naturally ivy-covered area of my old yard… and unfortunately also FULL of spiders and spider webs.

A Poisoned Sleep And Kissless Dreams © Sarah Allegra - model: Katie Johnson - detail

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra – model: Katie Johnson – detail

I’d made a homemade spider repellent (nothing which would harm them, just something with tea tree oil to make the area less appealing to a few days) and sprayed it liberally around the shooting area in the days leading up to the shoot.

A Poisoned Sleep And Kissless Dreams © Sarah Allegra - model: Katie Johnson - detail

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra – model: Katie Johnson – detail

But despite it, it was a pretty intimidating place to ask any sane girl to lay down in, relax, close her eyes and pretend to be asleep.  I promised Katie that I would watch for any spiders actually crawling on her and scoot them off.  I promised no harm would come to her, and, bless her, she trusted me.

A Poisoned Sleep And Kissless Dreams © Sarah Allegra - model: Katie Johnson - detail

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra – model: Katie Johnson – detail

Now despite it being just covered in cobwebs and spiders, I ended up having to add all the cobwebs in Photoshop.  I downloaded a special Photoshop bundle of brushes shaped like cobwebs, which got me started.  It took a ton of manipulation of each little bunch to make it look like it way laying naturally over the different areas, adding light and shading to blend it in to the environment.

A Poisoned Sleep And Kissless Dreams © Sarah Allegra - model: Katie Johnson - detail

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra – model: Katie Johnson – detail

After I got Katie situated, I climbed up on a ladder and started shooting.  But I quickly realized that the ladder wasn’t tall enough to get the framing I wanted, which led to shooting about a million individual frames which I pieced together in Photoshop, which is why it’s such a huge file.  There were some challenges in making everything align since I wasn’t using a tripod, but it helped that Katie had trusted me so completely and was lying perfectly still.

A Poisoned Sleep And Kissless Dreams © Sarah Allegra - model: Katie Johnson - detail

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra – model: Katie Johnson – detail

I had also shot a purple smoke bomb pouring out of the bottle (separately from Katie, I didn’t think that would be good for her to breath) but then that ended up not really looking right either, leading to another element I had to create in Photoshop.

A Poisoned Sleep And Kissless Dreams © Sarah Allegra - model: Katie Johnson - detail

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra – model: Katie Johnson – detail

I always try to do as much work in camera as possible, but sometimes the real world just doesn’t accommodate you!

Katie’s bravery and willingness to do whatever it took to get “the shot” made me create this virtual plaque for her:Slogan 1

Thank you, Katie 🙂  This image would not exist without you.  It’s one of my very favorite images and I’m SO happy we went through all the difficulties of making it, even though I wanted to tear my hair out at times!

Another thing about this image that’s special is that it will be the first to be printed on my new, museum-quality paper of choice: Hahnemuhle pearl paper.  You really have to see it to believe it.  It is a thick, luscious paper with a bit of texture to it, similar to watercolor paper.  What pushed me over the edge into switching to this paper though, is the very subtle, pearlescent shimmer built into the paper.  It is magic.  And it compliments the ethereal nature of my work so well, it seemed we were made for each other.

And did I mention that this special new print is a $400 value?

Would you like to win this very special print for yourself?  Instructions are below!  If you already saw my first post, skip on to the info about how to enter, if not, please consider taking a moment to read it and see why I’m so passionate about promoting May 12th and my giveaway!

 

The Blue Ribbon © Sarah Allegra, Model: Katie Johnson.  ME's awareness ribbon color is blue.

The Blue Ribbon © Sarah Allegra, Model: Katie Johnson. ME’s awareness ribbon color is blue.

 

My Kingdom Of ME video –

I would like to say that I spent a great deal of reflection on coming up with the idea of my bed being my kingdom, but it was more of a response to thinking, “Shit, I have this video… now I need a name for it…”  But I think it holds true despite it’s spur-of-the-moment conception.

When you spend the vast majority of your time inside your house, it becomes your entire world.  If, on a good day, I take Calantha for a walk around the block, I feel like a Viking setting off to explore new lands (but not planning on Blood Eagle-ing anyone).  If my house is my world, my bedroom is my home, and my bed becomes my kingdom.

Though it is a queen-sized kingdom, it is a kingdom nonetheless.  This is where I am most myself, most honest, most raw, most pure.  I spend most of my time here, in my PJs, hair a mess and no makeup (because who’s going to see it, I don’t feel like putting it on, and I especially don’t feel like washing it off).  This room is most set up for my comfort and is bent to my will.  Why is there such a huge pile of stuff always on my nightstand, or next to my side of the bed?  Because then I can reach it easily, no matter what state I’m in.  Geoff’s side is spick and span, while mine is a crazy jungle, but that’s how it has to be.  In this whole world of things which cause us pain and discomfort, we need there to be someplace that is designed for us.  That is, usually, our beds.  And in my bed, I rule.

In Between Awake And Asleep - © Sarah Allegra

In Between Awake And Asleep – © Sarah Allegra, a self portrait

My art and my Enchanted Sleep series –

Some people are surprised to learn I have a chronic illness, especially one which confines me to my house and bed so much, since I seem to produce a lot of art.  It’s all the result of very careful planning of everything.  I keep my shoots very short and I plan several concepts I can shoot one right after the other while I have my model.  My shoot is usually the only major thing I have planned for the week.  Actually, it’s usually the only major thing I have planned that month.  If we’re driving to a location, my model will usually drive us since I’m often feeling too tired.  I try to bang out as many concepts as I possibly can, then I crash.  Usually the next two or three days will be awful, and I will pay dearly for my shoot.  But after that starts to wear off, I can sort through my images and work on editing them… which is only possible because I can do that with my laptop while lying in bed.  If I had to sit at a desk, I could not be a photographer.

Using my laptop and my Wacom tablet, I can create art again.  There was a while as I was getting sick where I was truly terrified that art would be taken away from me.  In one sense, that did happen, since I had to put away the pencils and paintbrushes which became too painful to wield, but art abhors a vacuum as much as nature does, and photography quickly sprang up in its place, with help from my photographer husband.

Photography has given me a voice.  But it’s more than that.  It’s given a voice to all of us who suffer from these invisible illnesses.  When I started shooting the images which would become a part of my Enchanted Sleep series, portraying what life with ME is like, I never dreamed that other people with illnesses would flock to it like they have.  I unintentionally tapped into an underserved community, and those within it have made their approval loudly known.  I didn’t set out to capture anything but my own experiences, but in doing so, I captured all of ours.

Spoon Theory - a self portrait

Spoon Theory © Sarah Allegra  –  a self portrait

This is why you should care –

ME alone effects millions across the globe.  There are millions and millions more who bear other invisible illnesses, and you might have no idea that they carry these with them everywhere they go.  Most likely, you know someone with one of these illnesses, though it might be undiagnosed.  Most of the invisible illnesses tend to be diagnoses of exclusion; meaning there’s no one test for this disease, so you have to rule out EVERYTHING else that it could be before you decide what it is.  It’s a long, grueling process, and not everyone really wants to know what’s wrong with them anyway.  For me, I couldn’t stand not knowing.

Your aunt who often complains of pain?  Your friend who frequently has to cancel plans?  Your sibling who gets migraines which always come at the worst times?  They may have one of these diseases.

The online chronic illness community (spoonies, we call ourselves) is extremely supportive, but we need to have healthy people on our side too.  We need real changes to be made in the world, and frankly, we are too ill to do it all on our own.

These are not diseases which merely dampen our fun or mildly cramp our style, these are diseases which kill.  Sometimes that death is a suicide, as the patients cannot stand the suffering any longer.  Even if left to more “natural” courses, these illnesses are evil thieves and rob us of years.  They take away our livelihood, our joys, our passions and, eventually, our lives.

How many more of us have to die before the world pays attention?

Unjust © Sarah Allegra - model: Aly Darling

Unjust © Sarah Allegra – model: Aly Darling

A Fading Girl © Sarah Allegra, model: Brooke Shaden

A Fading Girl © Sarah Allegra, model: Brooke Shaden

This is how you enter –

Here’s how this giveaway works.  It’s going to be very easy and there are quite a lot of ways for you to enter!

First thing: subscribe to my blog if you haven’t already.  There’s a button in the upper right-hand section of the screen for you to enter your email address (which you may do safely, without fear of spamming or other annoyances).  Do that, then move on to step two:

You have your choice here!  You can either:

  • Retweet the facts I’ve tweeted about ME (these are embedded at the bottom of this post to make things super easy – you can like or retweet it without even leaving this page!)
  • Like me on Facebook and share my Kingdom Of ME post on Facebook
  • Follow me on Instagram and re-Gram my Kingdom of ME Instagram post
  • (The Facebook and Instagram posts and tweets are all embedded at the bottom of this post to make things super easy – you can like, retweet or share it without even leaving this page!)
  • Like and re-blog this post if you’re a WordPress user

You can do all of those, too!  One note, if you choose to retweet any of my tweets, each new retweet will count as an entry.  I’ve given you quite a lot to choose from, mainly because I couldn’t narrow it down myself any more!  😉  So, for example, if you retweet all 11 tweets, that will count as 11 entries for you.  However, if you retweet the same tweet more than once, that does NOT count at as extra entry.  The maximum possible Twitter-related entries you can get is 11.  The same idea goes for the other social networking sites too.  If you share my Facebook post, that’s an entry.  If you share the same post twice (which I’m not sure you can do, but let’s say for argument’s sake that you can), then you still only get one entry.

And lastly, whichever social media platform you decide to use to enter the contest from, you must like/follow me there (and here on the blog) for the entry to count!

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra, a self portrait

And a couple of other ways to enter –

Now, those are all very important ways for you to enter the contest to win a gorgeous print for yourself.  A large part of why the entries are based in social media is to help raise more awareness about ME (and other invisible illnesses) by word of mouth.  However, there is another way you can get more entries for yourself.

Any purchases on ANY of the items I sell from today, May 4th, through midnight, PST, May 27th will count as entries!  This means that EACH INDIVIDUAL ITEM that you buy counts as its own entry.  If you buy five t-shirts from my Red Bubble shop, that’s five extra entries for you!

And on top of the purchases going toward extra entries for you, 25 PERCENT of ALL PROFITS on ALL ITEMS purchased will be donated to the Microbe Discovery Project!  The Microbe Discovery project is a wonderful organization here in the US actively looking for a cause and cure for ME.  I strongly believe in what they do, which is why I have chosen them to benefit from my sales.

It’s a very win-win situation!  You get to buy whatever it is that you’ve had your eye on, you get extra entries into the print giveaway and ME research is supported at the same time!

On May 29th, I will randomly pick one winner from all the entries and that person will receive the print!  It will be signed and numbered and shipped to wherever you live, even if it’s the other side of the world!  🙂

One last note about purchases, if you make a purchase, please leave a comment here on the blog and tell me what you purchased and where it was from.  Some of the sites I sell through hide the buyer’s info from me, so I won’t always be able to tell who bought what.  I want to make sure your purchases are properly accounted for!

Martyrs To A Name © Sarah Allegra - models myself and Aly Darling

Martyrs To A Name © Sarah Allegra – models: myself and Aly Darling

This is what I sell –

So, that probably leaves you wondering, what is it that I sell?  Well, quite a lot of things, actually!

I sell museum-quality fine art prints both through my Etsy shop and my gallery representative.

Prices are the same regardless of where you buy, so there’s no need to worry about having “hiked-up gallery prices” 🙂  My Etsy shop also has a few pieces of “wearable art,” some of which is inspired by DreamWorld characters and some of which was inspired by The Last Unicorn!  There’s also a whole section of ME-inspired images from my Enchanted Sleep series!

Through my Red Bubble shop I sell all of the following items with my images on them:

Aly took and sent me this other lovely shot of her bag!

Aly took and sent me this lovely shot of her carrying her tote bag!  It was a bit strange at first to see my friend carrying a bag with my face in it 😉  We we both quite thrilled with the quality and according to Aly, it’s been getting tons of compliments and the straps are the perfect length!

And for something even more special, I also host a very unique online photography class,  INTROSPECTIVE: A Photographic Quest.

INTROSPECTIVE is much more about self-discovery than it is about knowing what f-stops are or having fancy equipment.  You don’t even have to have an actual camera; your phone will do perfectly well!  The course emphasizes self portraits as a way to get to know yourself better, but the definition of “self portrait” here is quite loose.  You never have to appear in an image unless you really want to.  What I mean by “self portrait” in this case is simply any photograph which shows me something about who you are as a person!
This is a very relaxed, reflective class.  There are no grades and no wrong answers!  For eight weeks, you will receive a new theme each week and your assignment will be to create an image around that theme which reflects you.  Love, joy and fears, for example, are all things you would be asked to create around.

This class is very unique!  I modeled it after my own journey of self-discovery as I started taking self portraits.  The art therapy was so helpful and healing to me that I wanted to give that back to the world in some way, so I created INTROSPECTIVE!

And as an extra bonus, here’s a special coupon code for INTROSPECTIVE!  Use the code May12ME25 to take 25 percent off the cost of the course!  Now that’s a win-win-win!!

Silenced © Sarah Allegra, model Travis Weinand

Silenced © Sarah Allegra: model Travis Weinand

Wrapping up –

I know you guys hear me talk about ME quite a lot, but here’s the thing.  It matters.  It really, really fucking matters.

There is so much confusion, misunderstanding and so many flat-out lies about ME that we all need to work extra hard to shine the light of truth on it.  It’s not all the public’s fault; after all, they’ve been lied to by medical professionals for decades.  It all came unraveling  in the 80’s when ME’s name was intentionally changed to “Chronic Fatigue Syndrome” and given the belittling nicknames of “the yuppie flu,” “the disease of depressed, menopausal women” and, more recently, “fat, lazy housewife disease,” just so insurance companies could deny patients coverage.

ME does not discriminate.  It does not target people by color ,gender, social status or age.  It attacks anyone and everyone it can.  It destroys lives.  It brings promising careers to grinding halts.  It is not a way to “get a free ride;” we struggle just to sit up and get out of bed.

It could be your sister.  It could be your boyfriend or girlfriend.

It could you.

How many more lives have to be sacrificed on the alter of insurance companies’ desires to not pay out before we get change?  How many more patients have to take their own lives in despair?  How many more seriously ill patients have to endure the most hateful slurs you can imagine being thrown at them?  How many doctors will sigh, roll their eyes and tell us there’s nothing wrong with us psychically, that our problems are all in our heads?

No more.

We cannot let this happen to one more person.  Too many have endured this already.

We have the power to make radical changes.  We have the power to change society’s view of us, to force the government to give us proper funding, to stop treating us like Cinderella instead of their own daughters.  We have the power to unlock the mystery of ME and find a cure.  We CAN do this.  But we must come together, make our voices heard and DEMAND it.  It will never be easily handed to us.  Too many huge companies are invested in not spending any money on those with ME.  But while history shows us many ugly truths, it also shows us that we, the common people, have great power in our hands to bring about the changes we want.

We just have to ask for it loudly enough.

Please join me in demanding change for patients with ME.  Things cannot continue the way they are any longer.

And as you help me advocate for invaluable change in the world, you’ll also be giving yourself a chance to win a gorgeous, fine art print 🙂  Help me with this.  And thank you.

Embedded tweets are just below!

[tweet https://twitter.com/sarahallegra/status/595063967409516545 ]

[tweet https://twitter.com/sarahallegra/status/595063916524216320 ]

[tweet https://twitter.com/sarahallegra/status/595063812086071298 ]

[tweet https://twitter.com/sarahallegra/status/595063863587966976 ]

[tweet https://twitter.com/sarahallegra/status/595064055624151041 ]

[tweet https://twitter.com/sarahallegra/status/595064011017695232 ]

[tweet https://twitter.com/sarahallegra/status/595064131016732672 ]

[tweet https://twitter.com/sarahallegra/status/595064174079709185 ]

[tweet https://twitter.com/sarahallegra/status/595064280401084418 ]

[tweet https://twitter.com/sarahallegra/status/595064336432771072 ]

[tweet https://twitter.com/sarahallegra/status/595063767454523392 ]

My Kingdom of ME – This self portrait is actually the cover image for a
video I made about May 12th, ME and me. May 12th is known as Invisible
Illness Day. A day to raise awareness about diseases which may have
devastating impacts on peoples' lives, yet may not show any outward signs.
Diseases like ME, which I have. I'm holding a print giveaway for a brand
new image which will be revealed on the 12th to help raise awareness!
Please see my blog for info on how you can enter. It's easy and free!
https://sarahallegra.wordpress.com/2015/05/05/my-kingdom-of-me-and-a-print-giveaway/ #myalgicencephalomyelitis #ME #MECFS #chronic #fatigue #pain #disease #illness
#video #promotion #print #giveaway #blog #youtube
#selfportrait #awareness #giveaway #May12
#InvisibleIllnessDay #fibro #CFS #neurologic #migraine #raw #honest #real
#fineart #DreamWorld #change #hope #queen

A post shared by Sarah Allegra (@artosthebear) on

3 Good Days

3 Good Days © Sarah Allegra, a triple self portrait

Footnote

[*Because the United States does not officially recognize the name “myalgic encephalomyelitis,” despite decades of public outcry for change and hundreds of thousands signing petitions, they continue to stick to “Chronic Fatigue Syndrome” or “fibromyalgia.”  Depending on which doctor of mine you talk to, I may have three different diagnoses.  The US is especially complicated in how it defines – or, rather, it’s lack of definition – the differences between the three so it’s impossible to talk about one in the US without talking about all of them.  For the record, they are NOT all the same disease, but that is essentially how the US treats them.  I know that what I have is ME and not the other two, but many of my doctors had not have heard of ME until I told them about it.  ME has scientific, diagnosable guidelines, which I fit, but the country still refuses to adopt the name and its excellent guidelines.  If you’re interested in learning more about why this is, here’s an article for you, but for this post, I will leave the subject there.]

 

 

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The Blue Ribbon © Sarah Allegra, Model: Katie Johnson.  ME's awareness ribbon color is blue.

The Blue Ribbon © Sarah Allegra, Model: Katie Johnson. ME’s awareness ribbon color is blue.

May 12th – what is it?

We are rapidly approaching May 12th.

Why is that important?

May 12th is recognized across the globe as Invisible Illness Day.  Though most people are unaware of its significance… which is part of the problem.

It’s a day for bringing more awareness to diseases like fibromyalgia, Chronic Fatigue Syndrome,  rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, along with many others.  Diseases which can have horrific, devastating effects on the person’s life, yet may not outwardly show.  They can be completely disabling, and the patient still looks “normal” to the world.

And of course, this list includes myalgic encephalomyelitis, or ME, which I have.*

What ME is –

I’ve spoken quite a lot about ME on my blog, so a lot of you probably know the basics of it.  But for anyone new, here’s a quick summary.  ME is a neurological disease defined, in part, by:

  • Profound fatigue which is unrefreshed by rest and sleep.
  • Chronic pain, which can occur anywhere in the body, but is especially common in muscles and joints.
  • Insomnia and other sleep disturbances, despite your constant exhaustion.
  • Post-exertional malaise (meaning you feel worse after you exert yourself — and the exertion can be as simple as a trip to the grocery store or walking to your mailbox).
  • Neurological problems, a.k.a. “brain fog.”  This can manifest in the form of sudden clumsiness, tripping and falling, being unable to recall a word you knew just a second ago, suddenly forgetting how to read or write, forgetting your name… you get the idea.
  • Headaches of new or worsening kinds (I never had migraines until ME started sinking its talons into me).
  • Dysfunctional immune systems (if there’s a cold going around, I will get it).
  • Hyper-sensitivity to any and all stimuli — I describe it as the volume in my brain being turned up to “11.”  Noises are very loud to me, lights are bright, smells overwhelming… the scent sensitivity means that anything artificially fragranced makes me nauseated, but it has led to me find small, unnoticed gas leaks inside houses on several occasions.
  • Post-Exertional Neuroimmune Exhaustion (your brain functions worse in every way after even minimal efforts — mental or emotional efforts as well, not strictly physical ones).
  • Low threshold of physical and mental fatigue (lack of stamina) resulting in a substantial reduction in pre-illness activity level — things you did before you were sick are now out of the question.

And so on.  Because ME affects every system of the body, in a way somewhat similar to multiple sclerosis, the symptoms can vary from person to person, but these are the classic signposts of the disease.

I have what would be defined as a “moderate” case of ME.   A mild case would be someone who could still maintain a somewhat normal life, but would probably need extra recovery time after big events, help lifting heavy objects, etc.  Moderate, like what I have, is someone who can’t work a normal job, is partly or completely house-bound, may not be able to drive and has a great deal of their life impacted by the disease.  Their world becomes much, much smaller and quieter.  Severe cases… you wouldn’t wish them on your worst enemy.  These are people who are completely bed-bound, unable to care for themselves in the most basic ways, unable to tolerate any light, sound or touch.  They lay in dark rooms in silence, often on morphine drips for their severe pain… and this can last for decades.  It’s been described as “a living death,” and for good reason.  It’s truly horrifying.  This is often the time when patients try to take their own lives.

Vanity's Murder - © Sarah Allegra

Vanity’s Murder © Sarah Allegra, a self portrait

My Kingdom Of ME video –

I would like to say that I spent a great deal of reflection on coming up with the idea of my bed being my kingdom, but it was more of a response to thinking, “Shit, I have this video… now I need a name for it…”  But I think it holds true despite it’s spur-of-the-moment conception.

When you spend the vast majority of your time inside your house, it becomes your entire world.  If, on a good day, I take Calantha for a walk around the block, I feel like a Viking setting off to explore new lands (but not planning on Blood Eagle-ing anyone).  If my house is my world, my bedroom is my home, and my bed becomes my kingdom.

Though it is a queen-sized kingdom, it is a kingdom nonetheless.  This is where I am most myself, most honest, most raw, most pure.  I spend most of my time here, in my PJs, hair a mess and no makeup (because who’s going to see it, I don’t feel like putting it on, and I especially don’t feel like washing it off).  This room is most set up for my comfort and is bent to my will.  Why is there such a huge pile of stuff always on my nightstand, or next to my side of the bed?  Because then I can reach it easily, no matter what state I’m in.  Geoff’s side is spick and span, while mine is a crazy jungle, but that’s how it has to be.  In this whole world of things which cause us pain and discomfort, we need there to be someplace that is designed for us.  That is, usually, our beds.  And in my bed, I rule.

In Between Awake And Asleep - © Sarah Allegra

In Between Awake And Asleep – © Sarah Allegra, a self portrait

My art and my Enchanted Sleep series –

Some people are surprised to learn I have a chronic illness, especially one which confines me to my house and bed so much, since I seem to produce a lot of art.  It’s all the result of very careful planning of everything.  I keep my shoots very short and I plan several concepts I can shoot one right after the other while I have my model.  My shoot is usually the only major thing I have planned for the week.  Actually, it’s usually the only major thing I have planned that month.  If we’re driving to a location, my model will usually drive us since I’m often feeling too tired.  I try to bang out as many concepts as I possibly can, then I crash.  Usually the next two or three days will be awful, and I will pay dearly for my shoot.  But after that starts to wear off, I can sort through my images and work on editing them… which is only possible because I can do that with my laptop while lying in bed.  If I had to sit at a desk, I could not be a photographer.

Using my laptop and my Wacom tablet, I can create art again.  There was a while as I was getting sick where I was truly terrified that art would be taken away from me.  In one sense, that did happen, since I had to put away the pencils and paintbrushes which became too painful to wield, but art abhors a vacuum as much as nature does, and photography quickly sprang up in its place, with help from my photographer husband.

Photography has given me a voice.  But it’s more than that.  It’s given a voice to all of us who suffer from these invisible illnesses.  When I started shooting the images which would become a part of my Enchanted Sleep series, portraying what life with ME is like, I never dreamed that other people with illnesses would flock to it like they have.  I unintentionally tapped into an underserved community, and those within it have made their approval loudly known.  I didn’t set out to capture anything but my own experiences, but in doing so, I captured all of ours.

Spoon Theory - a self portrait

Spoon Theory © Sarah Allegra  –  a self portrait

This is why you should care –

ME alone effects millions across the globe.  There are millions and millions more who bear other invisible illnesses, and you might have no idea that they carry these with them everywhere they go.  Most likely, you know someone with one of these illnesses, though it might be undiagnosed.  Most of the invisible illnesses tend to be diagnoses of exclusion; meaning there’s no one test for this disease, so you have to rule out EVERYTHING else that it could be before you decide what it is.  It’s a long, grueling process, and not everyone really wants to know what’s wrong with them anyway.  For me, I couldn’t stand not knowing.

Your aunt who often complains of pain?  Your friend who frequently has to cancel plans?  Your sibling who gets migraines which always come at the worst times?  They may have one of these diseases.

The online chronic illness community (spoonies, we call ourselves) is extremely supportive, but we need to have healthy people on our side too.  We need real changes to be made in the world, and frankly, we are too ill to do it all on our own.

These are not diseases which merely dampen our fun or mildly cramp our style, these are diseases which kill.  Sometimes that death is a suicide, as the patients cannot stand the suffering any longer.  Even if left to more “natural” courses, these illnesses are evil thieves and rob us of years.  They take away our livelihood, our joys, our passions and, eventually, our lives.

How many more of us have to die before the world pays attention?

Unjust © Sarah Allegra - model: Aly Darling

Unjust © Sarah Allegra – model: Aly Darling

A DreamWorld/Enchanted Sleep crossover print giveaway!

I try to always do something around May 12 to help bring awareness to ME and its sister diseases.  This year, I’m going to be giving away a print of a brand-new image… one which won’t be revealed until May 12th itself.  It’s going to be a really, really great image though, I can promise you 🙂

This one will feature model Katie Johnson, and it’s so complicated, I’ve been working on it on and off for about two years.  I had to put it aside for a long time until I upgraded my laptop.  The file size was SO huge, I could only work on it for about ten minutes before it would crash my entire computer.  Obviously, that didn’t work for me.  It’s still a monster of a file, but on the new machine it only crashes Photoshop every few days, which is much better..

This image will be very unique in that it straddles both DreamWorld and Enchanted Sleep, a foot in each world like the Pillar of Hercules.  No other image of mine does this.  It will be a first on several fronts!

Another thing about this image that’s special is that it will be the first to be printed on my new, museum-quality paper of choice: Hahnemuhle pearl paper.  You really have to see it to believe it.  It is a thick, luscious paper with a bit of texture to it, similar to watercolor paper.  What pushed me over the edge into switching to this paper though, is the very subtle, pearlescent shimmer built into the paper.  It is magic.  And it compliments the ethereal nature of my work so well, it seemed we were made for each other.

Did I mention that this special new print is a $400 value?

Is your interest peaked?  Want to win the print for yourself?  Instructions are right below.  🙂

A Fading Girl © Sarah Allegra, model: Brooke Shaden

A Fading Girl © Sarah Allegra, model: Brooke Shaden

This is how you enter –

Here’s how this giveaway works.  It’s going to be very easy and there are quite a lot of ways for you to enter!

First thing: subscribe to my blog if you haven’t already.  There’s a button in the upper right-hand section of the screen for you to enter your email address (which you may do safely, without fear of spamming or other annoyances).  Do that, then move on to step two:

You have your choice here!  You can either:

You can do all of those, too!  One note, if you choose to retweet any of my tweets, each new retweet will count as an entry.  I’ve given you quite a lot to choose from, mainly because I couldn’t narrow it down myself any more!  😉  So, for example, if you retweet all 11 tweets, that will count as 11 entries for you.  However, if you retweet the same tweet more than once, that does NOT count at as extra entry.  The maximum possible Twitter-related entries you can get is 11.  The same idea goes for the other social networking sites too.  If you share my Facebook post, that’s an entry.  If you share the same post twice (which I’m not sure you can do, but let’s say for argument’s sake that you can), then you still only get one entry.

And lastly, whichever social media platform you decide to use to enter the contest from, you must like/follow me there (and here on the blog) for the entry to count!

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra, a self portrait

And a couple of other ways to enter –

Now, those are all very important ways for you to enter the contest to win a gorgeous print for yourself.  A large part of why the entries are based in social media is to help raise more awareness about ME (and other invisible illnesses) by word of mouth.  However, there is another way you can get more entries for yourself.

Any purchases on ANY of the items I sell from today, May 4th, through midnight, PST, May 27th will count as entries!  This means that EACH INDIVIDUAL ITEM that you buy counts as its own entry.  If you buy five t-shirts from my Red Bubble shop, that’s five extra entries for you!

And on top of the purchases going toward extra entries for you, 25 PERCENT of ALL PROFITS on ALL ITEMS purchased will be donated to the Microbe Discovery Project!  The Microbe Discovery project is a wonderful organization here in the US actively looking for a cause and cure for ME.  I strongly believe in what they do, which is why I have chosen them to benefit from my sales.

It’s a very win-win situation!  You get to buy whatever it is that you’ve had your eye on, you get extra entries into the print giveaway and ME research is supported at the same time!

On May 29th, I will randomly pick one winner from all the entries and that person will receive the print!  It will be signed and numbered and shipped to wherever you live, even if it’s the other side of the world!  🙂

One last note about purchases, if you make a purchase, please leave a comment here on the blog and tell me what you purchased and where it was from.  Some of the sites I sell through hide the buyer’s info from me, so I won’t always be able to tell who bought what.  I want to make sure your purchases are properly accounted for!

Martyrs To A Name © Sarah Allegra - models myself and Aly Darling

Martyrs To A Name © Sarah Allegra – models: myself and Aly Darling

This is what I sell –

So, that probably leaves you wondering, what is it that I sell?  Well, quite a lot of things, actually!

I sell museum-quality fine art prints both through my Etsy shop and my gallery representative.

Prices are the same regardless of where you buy, so there’s no need to worry about having “hiked-up gallery prices” 🙂  My Etsy shop also has a few pieces of “wearable art,” some of which is inspired by DreamWorld characters and some of which was inspired by The Last Unicorn!  There’s also a whole section of ME-inspired images from my Enchanted Sleep series!

Through my Red Bubble shop I sell all of the following items with my images on them:

Aly took and sent me this other lovely shot of her bag!

Aly took and sent me this lovely shot of her carrying her tote bag!  It was a bit strange at first to see my friend carrying a bag with my face in it 😉  We we both quite thrilled with the quality and according to Aly, it’s been getting tons of compliments and the straps are the perfect length!

And for something even more special, I also host a very unique online photography class,  INTROSPECTIVE: A Photographic Quest.

INTROSPECTIVE is much more about self-discovery than it is about knowing what f-stops are or having fancy equipment.  You don’t even have to have an actual camera; your phone will do perfectly well!  The course emphasizes self portraits as a way to get to know yourself better, but the definition of “self portrait” here is quite loose.  You never have to appear in an image unless you really want to.  What I mean by “self portrait” in this case is simply any photograph which shows me something about who you are as a person!
This is a very relaxed, reflective class.  There are no grades and no wrong answers!  For eight weeks, you will receive a new theme each week and your assignment will be to create an image around that theme which reflects you.  Love, joy and fears, for example, are all things you would be asked to create around.

This class is very unique!  I modeled it after my own journey of self-discovery as I started taking self portraits.  The art therapy was so helpful and healing to me that I wanted to give that back to the world in some way, so I created INTROSPECTIVE!

And as an extra bonus, here’s a special coupon code for INTROSPECTIVE!  Use the code May12ME25 to take 25 percent off the cost of the course!  Now that’s a win-win-win!!

Silenced © Sarah Allegra, model Travis Weinand

Silenced © Sarah Allegra: model Travis Weinand

Wrapping up –

I know you guys hear me talk about ME quite a lot, but here’s the thing.  It matters.  It really, really fucking matters.

There is so much confusion, misunderstanding and so many flat-out lies about ME that we all need to work extra hard to shine the light of truth on it.  It’s not all the public’s fault; after all, they’ve been lied to by medical professionals for decades.  It all came unraveling  in the 80’s when ME’s name was intentionally changed to “Chronic Fatigue Syndrome” and given the belittling nicknames of “the yuppie flu,” “the disease of depressed, menopausal women” and, more recently, “fat, lazy housewife disease,” just so insurance companies could deny patients coverage.

ME does not discriminate.  It does not target people by color ,gender, social status or age.  It attacks anyone and everyone it can.  It destroys lives.  It brings promising careers to grinding halts.  It is not a way to “get a free ride;” we struggle just to sit up and get out of bed.

It could be your sister.  It could be your boyfriend or girlfriend.

It could you.

How many more lives have to be sacrificed on the alter of insurance companies’ desires to not pay out before we get change?  How many more patients have to take their own lives in despair?  How many more seriously ill patients have to endure the most hateful slurs you can imagine being thrown at them?  How many doctors will sigh, roll their eyes and tell us there’s nothing wrong with us psychically, that our problems are all in our heads?

No more.

We cannot let this happen to one more person.  Too many have endured this already.

We have the power to make radical changes.  We have the power to change society’s view of us, to force the government to give us proper funding, to stop treating us like Cinderella instead of their own daughters.  We have the power to unlock the mystery of ME and find a cure.  We CAN do this.  But we must come together, make our voices heard and DEMAND it.  It will never be easily handed to us.  Too many huge companies are invested in not spending any money on those with ME.  But while history shows us many ugly truths, it also shows us that we, the common people, have great power in our hands to bring about the changes we want.

We just have to ask for it loudly enough.

Please join me in demanding change for patients with ME.  Things cannot continue the way they are any longer.

And as you help me advocate for invaluable change in the world, you’ll also be giving yourself a chance to win a gorgeous, fine art print 🙂  Help me with this.  And thank you.

Embedded tweets are just below!

[tweet https://twitter.com/sarahallegra/status/595063967409516545 ]

[tweet https://twitter.com/sarahallegra/status/595063916524216320 ]

[tweet https://twitter.com/sarahallegra/status/595063812086071298 ]

[tweet https://twitter.com/sarahallegra/status/595063863587966976 ]

[tweet https://twitter.com/sarahallegra/status/595064055624151041 ]

[tweet https://twitter.com/sarahallegra/status/595064011017695232 ]

[tweet https://twitter.com/sarahallegra/status/595064131016732672 ]

[tweet https://twitter.com/sarahallegra/status/595064174079709185 ]

[tweet https://twitter.com/sarahallegra/status/595064280401084418 ]

[tweet https://twitter.com/sarahallegra/status/595064336432771072 ]

[tweet https://twitter.com/sarahallegra/status/595063767454523392 ]

3 Good Days

3 Good Days © Sarah Allegra, a triple self portrait

Footnote

[*Because the United States does not officially recognize the name “myalgic encephalomyelitis,” despite decades of public outcry for change and hundreds of thousands signing petitions, they continue to stick to “Chronic Fatigue Syndrome” or “fibromyalgia.”  Depending on which doctor of mine you talk to, I may have three different diagnoses.  The US is especially complicated in how it defines – or, rather, it’s lack of definition – the differences between the three so it’s impossible to talk about one in the US without talking about all of them.  For the record, they are NOT all the same disease, but that is essentially how the US treats them.  I know that what I have is ME and not the other two, but many of my doctors had not have heard of ME until I told them about it.  ME has scientific, diagnosable guidelines, which I fit, but the country still refuses to adopt the name and its excellent guidelines.  If you’re interested in learning more about why this is, here’s an article for you, but for this post, I will leave the subject there.]

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It’s that time of year when everyone with a blog is required to take a look at the previous year and take stock.  I like this tradition.  It gives you a sense of accomplishment for the things you’ve done and also brings to mind what still needs attention.

So what happened in 2013?  So much!

I signed a contract with Conlan Press, Peter S. Beagle’s publisher.  This has already brought some very exciting things about, and there are many, many more to come!

In The Lilac Wood

In The Lilac Wood

I created what I consider the first “real” DreamWorld piece.  By “real” I mean a full-fledged character was brought to life with costumes and props which took months to create and inventing new ways to bring about my vision on a shoe-string budget.  The inclusion of birds would also prove to be a frequently occurring theme in DreamWorld.

The Court Of The Dryad Queen

The Court Of The Dryad Queen

I got to photograph Lauren Cohen, aka Maggie from AMC’s The Walking Dead.  The image also kicked off a sub-series of DreamWorld portraying the various steps along the Hero’s Journey.

Crossing The First Threshold

Crossing The First Threshold

I also got to photograph Paul Telfer, known for his roles in NCIS, The Vampire Diaries and other roles that require buff-and-handsome men.  He perfectly portrayed the angelic kind of being you would want watching over you while you sleep.

Prayer For The Frail

Prayer For The Frail

This year also brought about a new, ongoing collaboration and friendship with actor/model Katie Johnson.  I could write an entire post about how wonderful it’s been to have Katie in my life, both for artistic reasons and personal ones.  I will leave it at two main points; that she is a spectacular model, equally skilled at following specific, minute directions as well as being let loose while I just try and keep up with her.  Her friendship, strength and grace have been a great boon this year, especially during some notable rough patches.  Thank you, Katie 🙂

Perennial Parasol

Perennial Parasol

One of those notable rough patches was learning about the tragic deaths of the 19 Hotshot firemen in Yarnell, Arizona this summer, and that one of them had been a childhood friend of mine.

To The Lost

To The Lost

In a somewhat similar vein, I took my passion for animal rights to a new level after watching the documentary Blackfish.  This also meant that I finally tackled underwater photography, which I’d been quite nervous about trying.

Concrete Cell

Concrete Cell

I wrote an open letter to Jack Hanna criticizing his continued support of SeaWorld after the Blackfish allegations, which became quite successful and even garnered the attention of celebrities such as British actor Stephen Fry.

Stephen Fry Tweet

Stephen Fry Tweet

Like DreamWorld, the set of Blackfish photos has set in motion a more all-encompassing series addressing animal rights in other areas.  More of that will come in 2014!

A Drop Of Blood

A Drop Of Blood

In championing human causes, I got to be a part of the Kickstarter campaign for the documentary Canary In A Coal Mine, in production, about myalgic encephalomyelitis, aka ME, previously known in the United States as Chronic Fatigue Syndrome/CFS.  The Kickstarter was an INCREDIBLE success, and we can look forward to seeing the film in late 2014 or early 2015!  I’m proud to have been a small part of the movement.  I also got to work a little more on my series on living with ME with the help of model/friend Aly Darling.

Martyrs To A Name

Martyrs To A Name

I visited a sheep farm to take photos of lambs and goats along with friends Katie and Brooke Shaden, to create a very personal portrait of my grandmother.  This particular lamb was appropriately named Too Cute 🙂

The Shepherdess

The Shepherdess

I had the pleasure of being interviewed on The Candid Frame, The Altadena Blog, and having some of my photos appear in the self-portrait how-to book, Shooting Yourself, by Haje Jan Kamps.

SP book all pages

I “celebrated” my 5-year anniversary with ME.  I’ve tried many new therapies this year to combat the ME, but with the exception of ART massage, it has gotten slowly worse and finally forced me to quit my day job.  In some ways this is a good thing, as my day job was doing my body no good at all, and it also means now I can concentrate fulltime on art.  But it’s also a bit frightening; will the ME get a little worse every year?  Will it level off now that I’m not pushing it trying to hold down a job?  There are many unknowns, which can be worse than knowing something bad will happen.  I try and keep a good attitude about things, but it’s also no good trying to simply ignore your fears.  They won’t go away, they’ll simply grow in the dark.

Vanity's Murder

Vanity’s Murder

This TED Talk sums up my fears, hopes and trials beautifully, and I would recommend it to anyone and everyone, especially any who struggle with depression.

I am still mourning Richard Harrow’s death (this was my light-hearted way of dealing with it) and I’m working on a photo to help work through those feelings.

On a happier note, I got to save a litter of opossum babies and was deeply moved by a beautiful new book.

But perhaps very best of all was getting to photograph author Peter S. Beagle, of The Last Unicorn fame, and bring him into DreamWorld as its King.  It was such a tremendous amount of work, but that just makes the resulting photos that much more meaningful.

Beloved Of The Crown

Beloved Of The Crown

A year ago, I never would have thought I’d find myself not only merely talking to Peter, but actually interacting with him, making a costume for him, and casting him as one of the most important characters of DreamWorld.

Aerie

Aerie

If that all happened in 2013, what will 2014 bring?  I am very excited to find out!

Christmas Eve

Here’s to a great new year!

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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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