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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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Christmas Is Coming

I Felt It Was Glory Model: Travis Weinand © Sarah Allegra

I Felt It Was Glory
Model: © Sarah Allegra, sarahallegra.com

Well, it’s been a little while, hasn’t it?  A big part of the reason I’ve been so silent recently has been due to that bastard ME doing its usual bastardy things, just more of them and more frequently.  Sigh.  I won’t recount each and every thing, since not only would that be boring for you, but it would also take far too many spoons for me to type up.  So let’s just leave it at I was being held hostage by ME.

Between Awake and Asleep Self portait © Sarah Allegra, sarahallegra.com

Between Awake and Asleep
A self portrait, © Sarah Allegra, sarahallegra.com

Ok, I will actually tell you about one thing it’s been doing because it’s new and super annoying.  Keep in mind that I’ve lived through many winters by now, and this has never happened before.  Usually, summer in Los Angeles just about kills me each year, but the winter provides a much-needed break from the oppressive heat.  However, this winter I’ve been experiencing something very strange and it’s difficult to even put it into words.  It’s like my body is having a lot of trouble adjusting to temperature changes.  Say I go to sleep at night (as I usually do) and it gets kinda cold overnight.  I actually like things getting cold; it means it’s not hot!  But then when I wake up in the morning, the air is cold, the house is cold, so I bundle up and turn the heat on.  But then as I’m bundled up, I start to sweat, as if I’ve overdone it and now I’m too hot, only I still feel cold.  Then I’ll start sweating more, which does its job and starts cooling me off, so I feel even colder, so I pile on more clothes and heat, then I sweat more, and I get colder… and the cycle continues until I’m a tearful puddle of both ice and fire, shivering in front of the radiator, stripped down of as many clothes as I can bear, waiting painfully for my body to just figure it out.  Which might take an hour or two for it to do, and by then I’ve used up more than all my spoons for the day and it’s barely breakfast time.
Images from my 2017 calendar. Models: Teri Wyble and Dedeker Winston. © Sarah Allegra, sarahallegra.com

Images from my 2017 calendar. Models: Teri Wyble and Dedeker Winston. © Sarah Allegra, sarahallegra.com

It seems to be more of an issue when I’m stressed (thank you, Geoff, for pointing this out!) so staying calm helps, but you all know how easy it is to simply stay completely peaceful every single second of the day.  If we don’t let it get SO cold at night, that also seems to help, and if I force myself to warm up and cool down more slowly, those things help too.  But it’s just one more obnoxious way the ME toys with me and makes life more difficult.  ME, you’re a sadistic bitch.
Some time soon I will also tell you about FINALLY having another round of nerve-blocking injections after months and months of fighting with my insurance company over them and the recent developments in Calantha’s growth removals, but I’m not ready to get into any of that right now.  So, on with the show!
They Lived To See The Dawn A self portrait with Calantha, © Sarah Allegra, sarahallegra.com

They Lived To See The Dawn
A self portrait with Calantha, © Sarah Allegra, sarahallegra.com

This is the time of the year when I usually remind you guys of all the things I sell which would make excellent holiday gifts for whomever you have on your list, so I’ll keep to that tradition!

Of course, there are my fine art prints, available through my Etsy shop.  It’s not at all cost- or time-efficient to list every single image I have available in every size, so if there’s something you’d like and you don’t see it listed, just email me!

Two more images from my 2017 calendar. Model: Katie Johnson, © Sarah Allegra, sarahallegra.com

Two more images from my 2017 calendar. Model: Katie Johnson, © Sarah Allegra, sarahallegra.com

I also sell my images printed on all sorts of fun items through Red Bubble.  What kind of things?  Just about anything you could want!  Tshirts, mugs, scarves, leggins, clocks, phone and laptop skins/cases, stickers, blank greeting cards/postcards, tote bags, zippered bags… really, you name it, they probably have it!  I like Red Bubble because it gives a really wide range of prices starting just a buck or two for a sticker, so it’s workable for virtually any budget 🙂

2017 calendar, front and back. All images © Sarah Allegra, sarahallegra.com

2017 calendar, front and back. All images © Sarah Allegra, sarahallegra.com

Red Bubble is also my printer for my collectable yearly calendars!  You can get your 2017 calendar right here 🙂  These are some of my favorite things to produce, as well as some of my most popular items.  They’re practical and also give you an inexpensive way to have 12 beautiful images to display on your wall throughout the year; a great value!

I’d also like to mention that I’m really happy with the quality of what Red Bubble makes.  I’ve bought numerous items from them over the years, for myself and others, and I’m always very pleased with how they look and function!

Introspective: A Photographic Quest

Then there’s my self-discovery-through-photograhy-online-course Introspective: A Photographic Quest.  It’s still almost 50% off its normal price because I haven’t had time to figure out another hosting option for it yet (Udemy recently decided to cap all its classes at a maximum of $40 per class, regardless of the original cost).  Take advantage of that savings while you can!  This isn’t a class so much about camera functions, f-stops, shutter speeds, etc (although I provide links which explain those things to those who want to learn).  This is truly about exploring who you are as a person and portraying that through art.

The eight-week course gives you weekly prompts of things to photograph; it’s more like visual journaling than simply taking photos.  You can share the images if you want or keep them all to yourself, the choice is yours!  I built the class based on my experience with the incredible healing power of art and self portraits when I first picked up a camera; this class is completely unique and would make a wonderful gift for anyone who enjoys art and/or self reflection!
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And something new this year; I’ve also selling high-quality skin serum through my other Etsy shop!  This is a skin serum I developed while searching for the perfect serum for my own face.  I couldn’t find what I wanted anywhere, so I took matters into my own hands and made my own blend of oils!  Once I saw the wonderful results it gave me, I started giving it to friends for them to test and they also reported excellent results.  After many glowing reviews from friends and friends-of-friends, I decided to start offering it to everyone!

My serum is blended with high-quality, natural ingredients (no fragrances or fillers).  It’s 100 % vegan and cruelty-free and it is safe for all types of skin.  Each bottle is hand-made in small batches and infused with eternally loving unicorn energies!

Right now I’m offering two different versions, one for your face and one for your hands and nails, but the base of both blends are the same.  They contain rosehip seed oil (high in fatty acids, vitamins A and C, it helps to regenerate skin and stimulates cellular membrane and tissue regeneration), argan oil (an extremely healing oil overflowing with vitamins A and E and anti-oxidants, along with omega-6 fatty acids and linolec acid which helps ease inflammation while deeply moisturizing the skin) and vegan squalene oil (one of the most effective and powerful moisturizing ingredients currently known!  Because it mimics the body’s own natural moisturizers, it can penetrate the skin well and is absorbed quickly.)   And you also have the option of adding vitamin C serum to your oil blend (reduces signs of aging and is especially wonderful for eliminating sun spots or other skin discolorations.  This vitamin C serum has an infusion of enriched organic aloe and jojoba oils to provide additional healing and hydration for your skin.  These unleash powerful antioxidants while preventing the formation of free radicals which contribute to signs of aging.)

Concrete Walls Model: Katie Johnson© Sarah Allegra, sarahallegra.com

Concrete Walls
Model: Katie Johnson© Sarah Allegra, sarahallegra.com

 

So, there you go!  Now go have fun shopping!  🙂  If you choose to purchase anything from the places listed in this post, thank you very much!

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What Else Can I Say About ME?

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

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

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

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

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

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

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

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

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

Living With The Tombstones

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

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

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

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

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

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

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

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It’s time for all those end-of-the-year blog posts!  I admit, I kind of like this tradition.  It’s a nice way to look back on things from a larger perspective.  And I have a brand new DreamWorld image featuring Travis Weinand for those who want to just scroll to the bottom 🙂

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

* * * * *

2015 was a… challenging year, to say the least.  And it turns out I’m starting it with a fresh, new cold and fever.  It has been the worst year I’ve had, ME-wise, so far.  It didn’t help that the year began with a crunched-for-time move of houses which literally took me several months to recover from.  Medication changes gave me months of terrible headaches and migraines, which also meant that this year was the least photographically productive year I’ve had yet also.  Between feeling terrible physically and not having nearly as much access to my art therapy as I wanted, it was a very depressing, frustrating and emotionally trying year as well.  All said, I’m happy to leave 2015 behind me and have set my intentions to have a much more fulfilling 2016.

I made a short video about my experience living with ME for last year’s May 12th (ME Awareness Day).  I generally really dislike making videos, so you can see that this was important to me 😉

There was some drama in the larger world of ME as well.  The US officially changed its name from the very belittling “Chronic Fatigue Syndrome” to the vague and incredibly widely-defined “Systemic Exertion Intolerance Disease.”  Most patients and advocates were very unhappy about this and there was a big backlash, which the powers-that-be mostly ignored, as is their usual method of dealing with us.  I’m still calling it ME, which is what most of us wanted it to be changed to.

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

Then the Senate rubbed salt in the wound by proposing they slash ME’s funding to absolutely $0 per year.  The paltry amount we currently get is the same amount given to research hayfever, despite ME being as deadly and serious as congestive heart failure and HIV/AIDS.  I extolled people to write to their representatives in protest of this; we’ll see what comes of it.

Please save this graphic and send it to the email addresses above!

Please save this graphic and send it to the email addresses above!

I got to meet fan-turned-model-turned-friend Noemi Regalado and photograph her for DreamWorld.

Apprenticeship © Sarah Allegra, model Noemi Regalado

Apprenticeship © Sarah Allegra, model Noemi Regalado

I officially started a series dealing with mental health issues; Eternal Storms.  It seeks to help break down the stigma associated with these illnesses and show sufferers how they are not alone.

A Cry From The Darkness © Sarah Allegra - a self portrait

A Cry From The Darkness © Sarah Allegra – a self portrait

One of the first models I ever worked with, Dedeker Winston, who has continued modeling for me over the five years we’ve known each other, despite me forcing her to wake up early, pose laying in cold, slimy, creeks, regularly get naked in forests and once helping me discover what stinging nettles look like when I accidentally had her pose nude in a patch of them, left for an extended time abroad.  She is having a wonderful, life-expanding time and I’m able to keep in touch and follow her journey online and through social media and texts.  I was sad to see her leave, but glad that we’d gotten in as much shooting as we did before she left, such as the Pink Mother for DreamWorld.  Speaking unselfishly though, I’m really happy she had this chance to do so much traveling and is having such an incredible time!  But I won’t be sad when I have the chance to photograph her again 🙂

The Living Sepulcher © Sarah Allegra, model - Dedeker Winston

The Living Sepulcher © Sarah Allegra, model – Dedeker Winston

My dear friend Danica gave me a priceless chance to work with an incredible, stunning, cream-colored Gypsy Vanner stallion named Booger.  As soon as I discovered she was horse-sitting him, I began planning a shoot with Katie Johnson and him together, utilizing him in every way I could think of.  I have a LOT of his shots still on my hard drive waiting to be edited, but I did at least complete one image from that magical shoot!

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson

I tried my hand at a more editorial style, which is fun, but not going to be the main thing I do any time soon.

Wall 8- model: Travis Weinand. © Sarah Allegra

Wall 8- model: Travis Weinand. © Sarah Allegra

Alabaster 1 - model Dedeker Winston. © Sarah Allegra SarahAllegra.com

Alabaster 1 – model Dedeker Winston. © Sarah Allegra
SarahAllegra.com

I was accepted into the online art gallery A Gallery, and also participated in a group show over the summer at the Creative Arts Group.

The summer show at the Creative Arts Group Gallery in Sierra Madre. This is how I want my work to be displayed, finished works alongside actual props and costumes.

The summer show at the Creative Arts Group Gallery in Sierra Madre. This is how I want my work to be displayed, finished works alongside actual props and costumes.

I FINALLY finished editing an image I started in 2013.

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

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

I was able to attend another screening of The Last Unicorn, which was absolutely delightful!  I dressed up as Amalthea and made a taco purse (get your own here!), which I think was the secret behind me winning the nightly costume contest.  I was also able to introduce my dear friends and ex-neighbors Donna and John to the movie for the first time (though I’d already made them fans of Peter’s writing) and they were appropriately impressed.

Taco purse available on Etsy :)

Taco purse available on Etsy 🙂

At the screening as Amalthea (with purse) and back at home.

At the screening as Amalthea (with purse) and back at home.

Sadly, shortly after this screening it became clear that Peter Beagle is not nearly as well as everyone had thought.  This is leading to a number of problems for him and his manager/publisher Conlan Press, which I’ll leave to them to discuss.  Regardless, it is sad to see him unwell and it makes the conversation I had with him at the screening last January all the more precious.

Speaking of illness, one of my favorite photographers, Ashley Lebedev, let us all know that she has struggled with a chronic illness for a long time.  It was beautiful to see people’s support and desire to help her gather funds for treatment.  I wish her a much better, healthier 2016 also!

The Weight of a Whistle Already Carved, @ Ashley Lebedev

I helped my husband (he helps me SO much with my shooting and projects, I more than owe him!) with a project that he’s been working on for a long time, which ended in his creating the dystopian, sci fi, 8-minute short film A Secret War.  You really should watch it!

My friend Jessi started an Etsy shop which has beautiful jewelry in it!  But it’s not simply pretty, much of it helps raise awareness about various invisible, chronic illnesses, such as ME.  As a spoonie herself, purchasing her jewelry is helping her support herself as well as getting something pretty 🙂

Jessi’s shop, The Hopeful Spoon

I discovered the wonder that is the film Unbroken, which is now one of my go-to stories to tell myself when I need some extra motivation to get through anything difficult.

Speaking of Peter S Beagle, Amazon released an exclusive Kindle offering of 13 of his most beloved titles for the first time in e-editions… and 6 of those titles were released with my images on their covers!  To say I was elated would be a huge understatement.  There may have been joyful tears when I first saw them in my browser window.  🙂

Go buy one of these titles! You'll thank me when you discover how magical Peter's writing is :)

Go buy one of these titles! You’ll thank me when you discover how magical Peter’s writing is 🙂

And, as always, I put out a calendar with a year’s worth of beautiful images to brighten up your walls every day!  Red Bubble does an excellent job at making beautiful, high-quality items and its calendars don’t disappoint.  Feel free to grab your own; I can promise that you’ll love it!

Sarah Allegra 2016 Calendar

Sarah Allegra 2016 Calendar

* * * * *

Since 2015 was so heavy with ME, migraines, frequent colds, injuries, deep ruts of depression and stress in ways I have seldom experienced it, an incredibly huge percentage of my physical energy was devoted to simply existing and not giving up.  It really underscored how precious my time and energy is and how I need to devote it to things that are worthwhile.  No, not just worthwhile, but things which I cannot live life without.  The things are dearest and most deeply important to me.

This has given me a lot to think about as I ponder how I’ll change my management of time and energy in 2016.  I will try and devote myself to not just ideas I like, but the ideas which I think are the best.  The most important.  I simply don’t have time to pursue anything less.  This is helping to bring my artistic goals into much sharper focus.  The dross will be burned away; the leftover gold burnished until it gleams.

I’m also making an effort to set aside more time for self-care activities, like short walks with Calantha or yoga when my body allows, meditation and reading for pleasure.  Few things enrich my life (both my actual and imaginary worlds) as much as reading does and I need to make sure I don’t let that slip away from me by being “too busy” for it.

But of course the most important things are the relationships I have with friends and loved ones.  Those will always be tended to, nurtured and cultivated as best as I can manage!  I am blessed to have many, wonderful friends in my life, online and off, who get me, support me and my art and are incredibly gracious about my health problem.  That’s something I should never forget to be grateful for or take for granted.

* * * * *

Now, as promised, here is my new DreamWorld image!

When I first met model and friend Travis Weinand, I was struck by how truly ethereal he looks.  Not simply in pictures or when in costume, he always looks like he stepped out of a comic book, collection of mythology or possibly Middle Earth.  With a quick stop-off for a dose of Viking and tattoos.  Anyway, I immediately wanted him to have wings.  I wasn’t sure how, but I knew he’d get them before we were done working together.

So at our next shoot, I asked him to sit in front of a dark backdrop and pose angelically.  He made looking strong, gentle, loving and bad-ass all at the same time look effortless.  Editing did take a while since I painted the wings myself and had to figure out exactly how I wanted these “wings made out of light” to look, but it was very worth the effort!

This character lives in DreamWorld, as you would probably guess, a centurion of sorts to DreamWorld’s Queen (whom you have not met yet, but hopefully you will soon).  He leads the Queen’s army, the Glorious Guard, but he’s more than just a devoted servant.  Part bodyguard, part lieutenant, part enforcer, part adviser, he is a dazzling embodiment of good.

The title of this image comes from one of my favorite poems of George Gordon Lord Byron, All For Love.  In it, Byron discusses love being the greatest glory one can receive, far greater than wreaths, trophies or other symbols of glory:

O Fame! if I e’er took delight in thy praises,
‘Twas less for the sake of thy high-sounding phrases,
Than to see the bright eyes of the dear one discover
She thought that I was not unworthy to love her.
 
There chiefly I sought thee, there only I found thee;
Her glance was the best of the rays that surround thee;
When it sparkled o’er aught that was bright in my story,
I knew it was love, and I felt it was glory.

That last line kept repeating and repeating through my head as I edited… thinking about the love he has for his Queen, those he protects and his glorious vestige, so I finally gave in and just used it as the title.

 

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, model: Travis Weinand. © Sarah Allegra

 

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

 

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

That’s it!  Everyone have a happy and meaningful 2016!  🙂

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A Cry From The Darkness

A self portrait that belongs to my Eternal Storm series, which explores depression, anxiety and other mental illnesses. A Cry From The Darkness © Sarah Allegra – a self portrait – detail

Wow, it feels like FOREVER since I finished my last piece!  This year has not been conducive to creating art.  I’ve done my best despite the circumstances which kept popping up (moving, medications, long ME flares, devoting a ton of time to the gallery show, stress from my recent battle among other things) but it’s felt like a very dry year creatively.  All I can do is my best though, and even when the ME really cramps my style, I still manage to get pieces finished… just much more slowly than I would like.

It was in this depressed feeling of “I haven’t created anything in the longest time imaginable” that today’s image was born.  When my regular creative outlets are blocked to me (by, say, solid weeks of migraines as I adjust to each new medication dosage), I become despondent and depressed.  Life slowly loses its flavor and color and if I’m not careful, I’ll sink into a pit of despair just like Artax in The Neverending Story.  Luckily, I have Geoff and my friends and family around to cheer me on and make sure I never sink too low, but much of it is outside of anyone’s control.

As I mentally pictured how I felt, this was it.  A big, ugly cloud of despair, depression, worthlessness, swirling around my head.  But this time, unlike my last self portrait which explored a similar theme, I wanted to show a bit of hope at the same time.  The cloud is surrounded, penetrated and pierced by beautiful, golden rays of light.  They stream in through the darkness, weaving through its thick blackness.  The darkness cannot survive in the light.  It will be broken up and dissipate.  And while I know this will probably not be my last battle with depression, I also know that each round will eventually be over… and once again, the light will have won.  That is the hope I cling to when the clouds cover me.

I’d like to mention my friend and very talented photographer Robert Cornelius’s Dust to Dust series as it provided some inspiration in my planning out of the darkness cloud.  Thanks, Robert!  🙂  He’s an incredible photographer and all-around cool dude, so check out his work if you’re not familiar with it!

A Cry From The Darkness © Sarah Allegra - a self portrait

A Cry From The Darkness © Sarah Allegra – a self portrait

This image belongs to my Eternal Storms series on depression, anxiety and other mental health issues.  These topics are still seen as quite taboo to discuss, something I hope to help with by portraying what living with them is like openly and honestly.  Silence and shame never helped a single illness get cured.  We need to be able to speak openly about our experiences, without judgement or fear, if we’re ever going to healed from them.

A Cry From The Darkness

A Cry From The Darkness © Sarah Allegra – a self portrait – detail

A Cry From The Darkness

A Cry From The Darkness © Sarah Allegra – a self portrait – detail

 

Do you have depression?  Try being a little more honest next time a trusted friend asks how you are.  You don’t have to go into excruciating detail, but try to avoid the temptation to simply answer “fine,” unless you actually are.  And if you have friends or family who you suspect or know suffer from any kind of mental ailment?  Invite them to tell you about it, ask some questions, assuring them that talking to you is safe and you will not judge them or call them crazy.  It is crucial that you answer whatever they tell you with love.  It is incredibly hard for people to open up and talk to others about these problems, so take their trust very seriously and treat it with the gentlest and greatest respect.

A Cry From The Darkness

A Cry From The Darkness © Sarah Allegra – a self portrait – detail

A Cry From The Darkness

A Cry From The Darkness © Sarah Allegra – a self portrait – detail

As we approach Thanksgiving, let’s be thankful for the help and support we have.  For the people dedicated to helping us win our fight.  For the people who will listen to us with only love and understanding in their hearts.  The people who give us hope.  The inner strength we are able to find when we think we’ve exhausted it all.  Those extra beams of light when we need them the most.  We need more people like this in the world.  Let’s try and all be them to each other.  The simple fact that there are people in the world who try to reach this goal is something I am very thankful for!

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This is going to be a quick, short and sweet update.  But it’s vitally important to get the word out about this!
It was announced a few days ago that the Senate has completely SLASHED TO ZERO the meager funding allotted to ME/CFS research in next year’s budget.  ME/CFS is the ONLY disease to have its entire budget taken away.  But, it is possible to change this if enough outrage is heard.

We only have a few days to turn this around.  So, I beseech you all to send the attached graphic to the following email addresses asking them to stop this.  Every ME/CFS sufferer in the world will thank you, as will I.

Laura_friedel@appro.senate.gov; Chol_pak@appro.senate.gov; Alex_Keenan@appro.senate.gov; Lisa_bernhardt@appro.senate.gov

Please save this graphic and send it to the email addresses above!

Please save this graphic and send it to the email addresses above!

You can read a little more about the issue here: http://www.cfstreatmentguide.com/blog/federal-government-slashes-mecfs-funding-to-zero  You are also more than free to spread/post this around wherever you’d like to get the word out more!

Thank you deeply from the bottom of my heart.

 

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 This is a big piece for me, not just size-wise, but for what it represents as well.
Like A Storm © Sarah Allegra - detail

Like A Storm © Sarah Allegra – detail

I shot this self portrait a week or two ago after enduring months of worse-than-usual depression.  Some was due to outside influences, bad news, being sick and other things that any normal, healthy person would feel depressed about.  But a lot of it was that irrational, heavy, demanding, life-draining depression that is clinical depression.  This is not feeling sad about things that you should feel sad about.  This is round-the-clock, punishing joylessness, sucking the beauty out of everything, leaving all around you colorless and meaningless.  This is clinical depression.

 

I’ve battled this beast since it first started manifesting in my early teens.  It took me some time before I learned that what I was feeling was an actual condition, a potentially solvable problem, not just a bad mood that hung around for years.  I’ve also tried more remedied to it that I can recount; anti-depressants, therapy, energy work, supplements, yoga, getting more exercise (before I had ME; over-doing exercise now could do me great harm), self-help books, seminars, journaling, art therapy… on and on and on.

 

And it still clings.

 

I decided to start a series specifically addressing mental illness; clinical depression and anxiety in particular, since those are the two I fight with most.  I manage them, sometimes it’s better, sometimes it’s worse.  Sometimes I want to just die.  I don’t know if it will ever go away completely, thus the series title Eternal Storms.

 

I identify with Eeyore from Winnie  the Pooh, with his constant dark cloud covering just him.  I’m sure that was subconsciously part of the inspiration for this piece.  When I’m going through a bout of depression, this is what it feels like to me.  A dark storm raging round my head, that only I see and feel.  It makes the idea of asking for help feel pointless; even if I break up this cloud, another will come.  And the social stigma of admitting you need help at all, let alone help with your mental health, makes it all the worse.  If I’m having a week where I have to talk myself into continuing to live each day, I can’t talk about it except for a few select, very trusted friends who have also been there, as well as my therapist.

 

I shot this self portrait as a way to work through the cloud I was under, yes, but more importantly, to directly address depression and its stigma.  Admitting you have or struggle with depression doesn’t make you weak or unworthy.  It doesn’t make you a bad person.  It doesn’t mean you’re not trying hard enough, eating right or getting enough exercise.  It just IS.  And society needs to learn to stop judging those who do manage to ask for help.

 

The alternative is that we suffer in silence with our tormentor.  And that can kill.

 

Joel Robison happened to put up an insightful blog about his own battle with depression recently, which was a happy coincidence.  I’m very glad for people like him who will stand with me and admit that yes, we have depression.  It may not make sense to you, you may not understand it, it might *gasp* make you uncomfortable, but that doesn’t mean it will go away.We are no less human that you.  We did not ask for this fight.  This is not an attention-seeking behavior.  This is real, this illness is out for blood.  This is just our fight.  This matters.  And it can be won.One storm at a time.

This series is dedicated to all the others who fight this battle with me every day.  You are all so strong and so brave.  Don’t let anyone ever tell you otherwise.

Like A Storm © Sarah Allegra

Like A Storm © Sarah Allegra – click on the image to see it full-sized on my site!

Like A Storm © Sarah Allegra - detail

Like A Storm © Sarah Allegra – detail

 

Like A Storm © Sarah Allegra - details

Like A Storm © Sarah Allegra – details

Like A Storm © Sarah Allegra - detail

Like A Storm © Sarah Allegra – detail

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New DreamWorld image!!  I’m always happy to have a new installment for this series!

Apprenticeship © Sarah Allegra, model Noemi Regalado - detail

Apprenticeship © Sarah Allegra, model Noemi Regalado – detail

This image is a little bit “out of order,” so to speak.  The Apprentice is, obviously, an apprentice, but to someone you haven’t met yet, although you will.  In an ideal world, I would have shown you the Apprentice’s mistress first so it made more sense why she is out collecting herbs and plants and other ingredients, but you’ll have to just trust me on this for now  🙂  Hopefully I’ll be able to show you her mistress soon, but that’s going to be a pretty complicated shoot.

This image is extra special because it features a new model for me, Noemi Regalado.  Noemi is not someone who actively pursues modeling like most of the other people I work with.  She happened across my work and sent me an email asking if she could be a part of it.  Of course I said yes!  It took us a little while to find a time to shoot (which was all my fault; I think she first wrote me right around the time of my first sinus surgery and we know how that turned out.  And it seems nothing has calmed down since then!) but eventually we got a time set that worked for us both.

In a way, I’m a little glad that we had a few months to email back and forth and get to know each other a little more before the shoot although I’m sure the wait was maddening for Noemi!  (She will probably deny this because she’s very laid-back and easy going, but still.  Waiting sucks.)  In the course of our email exchange I learned that she has had her own health battles despite only being about the same age as I am.  She is a cancer survivor, currently completely in remission, and I suspect that she will stay that way.  She is a gentle soul but I know she fought that cancer out of her body.  She also participates in mud runs, something I probably would never have had the endurance for even before ME, and since her apartment only allows very small dogs, she volunteers regularly at a German Shepherd rescue group.  Every couple weeks she goes down, takes a dog out for a nice walk, socialization and a whole lot of love.  Then she repeats the process several times.  If that’s not one of the best examples of making lemonade from lemons that you’ve heard, I don’t know what to tell you 🙂  Shelter dogs have SO MUCH up against them, even the smallest gesture of love and attention can go a long, long way toward helping that dog find his or her forever home.  And so far she has been directly responsible for at least one Shepherd finding a home with a friend of hers!  I’m sure there will be more.

As you can see, Noemi is a very cool chick!  I wanted to come up with some concepts for her which would fit with her personality and her willingness to get uncomfortable and messy for a photo.  We ended up shooting two concepts; this first one that you’ll see today, as I said, is a DreamWorld image, and the second one, which I have not yet edited, will show off her willingness to do what it takes to get the shot.  And I have to say, she was a great model!  She took direction very well and had a better knack for it than some “actual” models I’ve come across 😉

So, let me tell you a little about making Noemi’s mask/headdress for this shot!  It all started with this lovely purple mask which I found at Rite Aid, of all places, on one of my many, many trips there to pick up prescriptions.  The color really caught my eye, I thought it would compliment Noemi well and I also noticed that it was less expensive than the completely blank, white masks at the craft store!  And no built-in swirls with the blank white masks either.  So that was a pretty easy decision to buy it.

Trying on the mask for research, NOT just because it was fun :)

Trying on the mask for research, NOT just because it was fun 🙂

But of course it can’t just be a basic mask, even if it looked very pretty in its basic form.  The first thing I did was cover it with a layer of lace, which happened to be a remnant cut from my wedding dress (because, surprise!, it was too long ;)).

Mask laceAfter brushing on a layer of fabric glue, I started with a layer of EXTREMELY glittery purple paint.

It doesn't look interesting wet...

It doesn’t look interesting wet…

But it dries into a really stunning color!

But it dries into a really stunning color!

Then I did some trimming on the lace to get the edges to match those of the mask itself.

At this point, I knew I wanted to put some leaves and flowers on it, but I didn’t know much more than that.  So I dragged out my fabric stash (what you’re seeing here is what I’d been able to buy during a HUGE sale!), my glue gun and just started messing around.

mask and loose flowersI knew I wanted to extend the sides of the mask with leaves, so I started there.  Maynard helpfully modeled this part for me.

Maynard is an awesome model, even when he's not facing the camera

Maynard is an awesome model, even when he’s not facing the camera

You can also see that I’d added a bit of black ink around the eye holes, rather like eyeliner.  Just a subtle touch to help draw the viewer’s eye since there was going to be a fair bit going on.

I just played around with different colored flowers and shapes, holding them in place, tweaking things here and there and then suddenly I had a finished mask!  I hadn’t planned on giving it so much vertical volume, that just sort of evolved naturally, but I liked how it looked so I went with it.  Some costumes I have planned out in precise detail before I ever start them, but others are more free-form, like this was.  Always listen to your gut 🙂

mask four small

A mask! Photos from here out are taken in the bathroom to protect it from over-eager cats.

As I looked at it the next day, I felt like it was 95% there but it needed… something.  I didn’t know what.  I mulled it over and when I woke up the next morning I knew it: mercury silver spray paint.

Krylon’s Looking Glass spray paint is no ordinary silver paint.  It has a truly magical quality to it and I end up using it in almost every costume or prop I paint.  Just the slightest mist gives it a mysterious, magical, ethereal touch.  I try to always keep a couple cans on hand because I never know when I’ll suddenly need them.

So that morning I took the mask outside and let the paint gently kiss the mask; just enough to give it that magical feeling without taking away the beautiful colors of the paint and flowers.  In the photos below (which are a little blurry, sorry, they were taken on my phone) the top photos show details of the flowers unpainted and the bottom have had their silver wash.

Flowers with and without Looking Glass paint

Flowers with and without Looking Glass paint

I filled a basket with appropriately magical-looking items and herbs but it didn’t make it into the final image.  Oh well.  You can see just a little of the vial necklace I made full of purple stones and beads and the gorgeous amulet/brooch.  Jewel tones just loved Noemi’s beautiful skin tone!

And now I’ll let you see the completely finished image along with some detail shots!  The show trees had just started blooming in the woods and the wild queen anne’s lace was bountiful.  Both made a beautiful, more neutral backdrop against Noemi’s vividly colored mask and costume.

sarahallegra.com

Apprenticeship © Sarah Allegra, model Noemi Regalado

Apprenticeship © Sarah Allegra, model Noemi Regalado - detail

Apprenticeship © Sarah Allegra, model Noemi Regalado – detail

Apprenticeship © Sarah Allegra, model Noemi Regalado - detail

Apprenticeship © Sarah Allegra, model Noemi Regalado – detail

Thanks to Noemi for being so patient through all this!  I’m very glad to have made a new friend though all this 🙂  And I’m very happy with how this turned out!  You’ll all just have to wait a little while longer to see the image where Noemi really proved her devotion to the finished image 😉

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As so often happens with DreamWorld, the inspiration for this set of images came close to a year ago.

The Pink Mother © Sarah Allegra

The Pink Mother series © Sarah Allegra, model: Dedeker Winston

Last summer, I had recently watched some of the BBC’s episodes of Life, their truly excellent series on all kinds of wildlife.  I was watching it while I edited other images (I rarely watch TV without doing a second activity, unless we’re talking about shows like True Detective, Breaking Bad, Boardwalk Empire, Rectify, etc, which all demand my full attention) but my editing suddenly halted when this segment came on.

I remember backing it up and watching the whole piece again, mesmerized, deeply touched and saddened by such complete, beautiful devotion from any creature to another.  As I watched it a third time, I knew a photo was going to come out of it somehow… it was resonating too deeply with me for anything else to happen.

Now, as to how the medieval elements worked themselves in… I can only give you guesses since I’m not really sure how my brain made the jump myself.  I know that part of it had to do with wanting to give her eight “tentacles” of some kind (which made its way into her hair) and wanting to give her a pouch to carry her eggs in.  For some reason, I thought of a kirtle, a medieval garment which lasted for several centuries.  The kind I was picturing were from, I believe, earlier on in the medieval period and looked more like what we might think of as over-dresses or fancy aprons.

A kirtle from a modern pattern by Burda.

A red kirtle from a modern pattern by Burda.

Researching medieval garments inevitably led to medieval hair… images like these set my brain whirling.

You can see how the braided and wrapped hair, along with beautiful headdresses leaked into my character.

As usual, I wasn’t sure how I was going to do this when I started into it.

I had a longish, dark brown wig which I’d bought very cheaply quite a while ago.  When it arrived, I realized why it had been so cheap; it was already snarled and tangled before I’d even taken it out of the package.  I halfheartedly attempted to work the same wide-tooth comb I use for my own often snarled and tangly hair and quickly realized it was a futile endeavor.  I tossed the wig into the back of the closet and mostly forgot about it.

When this project came up, I remembered it though.  Even though it poofed up like a drying poodle as I combed it, that would work in this case, since I’d be wrapping it up and looping it around.  I spent most of one afternoon just combing it out – not detangling it, mind you; there was never any hope of this wig being tangle-free.  My best hope was to get it to the point where I could separate it into eight segments.  It took all the strength in my arms and they were very unhappy with me for the next few days, but I managed to do it.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

In the meantime, I had discovered arm knitting, which I found I could do without a) using much brain power, b) quickly c) without using much muscle power and d) it had very pretty and interesting results.  The resulting squares and shapes I made from the looping yarn had such a beautiful, organic look, almost like a coral reef or some other under-sea plant/creature, that it felt completely at home with an aquatic-inspired creature.

After the combing session, I put the wig away for a day or two.  I brought it out again after my arms had regained a little strength.  Of course this also meant that it had had a couple days left completely on its own without any outside help to start tangling again, so I spent a little time re-combing it to get it back to a manageable state.  I quickly arm-knit a band of yarn which would form the circlet of my headdress and made sure it would fit.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

Then I divided it into eight more-or-less equal segments and put a hair band around each one to help keep them from getting into too much trouble.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

I put the circlet of yarn back on top of the hair and began crisscrossing the yarn (which was a beautiful, slightly metallic variegated blend of soft pinks, blues,  lavenders and silvers) over the different segments, using liberal help from my glue gun to keep everything in check.  Each segment was attached back up to the main part of the circlet after its crisscrossing was done.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

The two front, face-framing sections of hair were left for last.  I added some looping pieces of yarn between the other segments to make it more headdress-like.  The front segments got crisscrossed with their own lengths of yarn and were then attached to the very back of the circlet, forming two large loops on either side of the face, with hair tentacles hanging underneath them.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

Then was the fun part: beads!  I raided my bead stash, with an eye toward pieces from a very elaborate headdress I’d made which had recently died, spilling beads all over the floor.  I knew there were some really cool pieces which I’d used for it, so I repurposed them again in this piece.  I didn’t want it to be overwhelmingly be-jeweled and sparkly, just enough bling to make the character look a bit important; perhaps some kind of royalty.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

Moving on to her dress, I had a high-necked, sleeveless, pink chiffon dress from Ebay which I’d gotten for little more than a song.  Pink isn’t a color I’m usually drawn to that much, but since the original octopus was pink, my character was going to be pink too.  I kind of eyeballed the general shape of a kirtle from ivory tulle; a lot was going to happen to it and since it was so light and transparent, it didn’t need to be perfectly symmetrical.

I free-styled a yoke for the kirtle with more arm knitting and added some cap sleeves (which are only visible in some of the images unfortunately).  One thing I was finding with the arm knitting was that is is EXTREMELY forgiving.  Arm you within an atom bomb’s range of what you were going for?  Then it will probably work!

To unify the costume and also enhance the organic, oceanic feel, I arm knitted a piece for the bottom of the kirtle, basically a large triangle, and two smaller, upside-down triangles for either side of the egg pouch.  I left several yarn strings loose from the pouch triangles which would be used to tie the kirtle behind the back of the dress, just like a regular apron.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

The eggs were leftover from a shoot I did with Paul Telfer as the Sleeper’s Sentinel.  I’d had to buy a dozen of the super-large plastic eggs so I had PLENTY to use for other shoots!  I kept these fairly simple since there would be a lot going on visually in the images; I started with spray-painting a base coat of a semi-metallic light gold color and added flecks of bronze-black to make them look more like real eggs.  Repeat until they look right.  I knew I’d only need five or six eggs, since that was as many as would fit in the pouch I’d made so I didn’t waste any time painting extra eggs.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

I did do one thing to just one egg though…  I found a nail and a hammer and while the egg was still in two pieces, I hammered a hole through from the inside out.  Some sharp knives, pliers and more hammering later, I’d created what looked like a fracture in the egg from a chick inside starting to hatch.  Eggs = done!

I’d had my faithful model Dedeker Winston in mind for this character the whole time.  I usually cast characters in the same way I create them, just by what “feels right.”  I had not consciously remembered it, but it turned out there was a really wonderful real-world reason to have Dedeker play the octopus-mother caring for her eggs.  Dedeker has been an egg donor many times to couples who are unable to have children on their own.  In fact, one family has two children, both from Dedeker’s eggs, and they just requested a third!  It’s very unusual for a family to have so many children from the same donor, but I think it’s really lovely that all of their children will be linked in this extra way.  And clearly Dedeker produces really fantastic babies!  🙂  Once I remembered that, it felt truly serendipitous that we were shooting this character together.

I knew that my wig was several shades darker than Dedeker’s hair and I had a couple thoughts on how to deal with it.  I knew she had a dark brown wig of her own which we could layer under mine, or we could totally cover all of her hair with a wig cap.  In the end though, she simply twirled her hair into a low bun, I set the wig on top of her head and since there was so much going on with the hair, it looked completely natural and blended right in.  If you looked closely, you could see that some of the hairs on her forehead were a bit lighter than the rest of her head, but I matched them up in about 30 seconds in Photoshop.  Sometimes the simplest method is the best!

We set out on a morning last summer to capture these shots of the character I’ve dubbed the Pink Mother.  We got started early and the sun was already blazing; it promised to be a miserably hot day but at the moment it was still pleasant.  I started shooting Dedeker in a dryer, dustier, yellower scene and led her along a path which gradually got greener and lusher, mirroring the octopus’ journey to find the perfect environment for her eggs to be born into.  The color pallet moved from warm and vivid to cool and less saturated, especially in regards to the Pink Mother herself.  As she nears death, the paler she becomes until the last shot, where she is very white.

She sacrificed everything she had for her eggs.  She loved them, cared for them, caressed them.  She journeyed over countless miles to find a safe, green place for them to be born.  Though it cost her everything, she never hesitated.  And, it seems, her journey was worth it.  The cracks in the eggs prove her right.  They were brought forth from the deepest love there is, and that can only be the best start to these new beings.

So thank you to Dedeker for being my medieval octopus mother and letting me share your story about your own eggs!  And thank you for trusting my vision even if it seemed questionable at the time 😉  You were the perfect, purest-loving mother to those babies!

And now enjoy the full images, some detail shots and behind-the-scenes captures!

A Journey Into Strange Lands © Sarah Allegra

A Journey Into Strange Lands © Sarah Allegra

A Journey Into Strange Lands © Sarah Allegra - detail

A Journey Into Strange Lands © Sarah Allegra – detail

A Journey Into Strange Lands © Sarah Allegra - detail

A Journey Into Strange Lands © Sarah Allegra – detail

A Journey Into Strange Lands © Sarah Allegra - detail

A Journey Into Strange Lands © Sarah Allegra – detail

 

The Air Of A Quest About Her © Sarah Allegra

The Air Of A Quest About Her © Sarah Allegra

The Air Of A Quest About Her © Sarah Allegra - detail

The Air Of A Quest About Her © Sarah Allegra – detail

The Air Of A Quest About Her © Sarah Allegra - detail

The Air Of A Quest About Her © Sarah Allegra – detail

 

Migration's Imminent End © Sarah Allegra

Migration’s Imminent End © Sarah Allegra

Migration's Imminent End © Sarah Allegra - detail

Migration’s Imminent End © Sarah Allegra – detail

Migration's Imminent End © Sarah Allegra - detail

Migration’s Imminent End © Sarah Allegra – detail

 

Her Last Act Of Devotion © Sarah Allegra

Her Last Act Of Devotion © Sarah Allegra

Her Last Act Of Devotion © Sarah Allegra - detail

Her Last Act Of Devotion © Sarah Allegra – detail

Her Last Act Of Devotion © Sarah Allegra - detail

Her Last Act Of Devotion © Sarah Allegra – detail

Her Last Act Of Devotion © Sarah Allegra - detail

Her Last Act Of Devotion © Sarah Allegra – detail

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

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

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

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

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

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

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

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

Inside Looking Out © Sarah Allegra - model: Katie Johnson

Inside Looking Out © Sarah Allegra – model: Katie Johnson

Here’s what’s wrong with SEID.

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

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

A Fading Girl © Sarah Allegra - model: Brooke Shaden

A Fading Girl © Sarah Allegra – model: Brooke Shaden

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

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

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

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

Vanity's Muder © Sarah Allegra - a self portrait after I started experiencing ME-related hair loss

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

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

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

The Blue Ribbon © Sarah Allegra - Model: Katie Johnson

The Blue Ribbon © Sarah Allegra – Model: Katie Johnson

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

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

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

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

Breakable © Sarah Allegra - a self portrait

Breakable © Sarah Allegra – a self portrait

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

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

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

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

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

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

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

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

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

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

But this is what they haven’t counted on.

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

We will fight.  And we will win.

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

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

Here are some things you can do:

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

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

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

.  : SEID is still only naming a single symptom.

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

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

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

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

Additionally, you can:

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

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

Or this petition!

Every voice counts!

 

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

We Rise Again © Sarah Allegra - a self portrait

We Rise Again © Sarah Allegra – a self portrait

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

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

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

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

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

 

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