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Posts Tagged ‘ANW’

It seems like 2016 just sucked incredibly hard for just about everyone.  I wasn’t very fond of it either, on the whole.  True, there were some really good things that happened, but like most of you, I’m very happy to put it in my past and move on.  Let’s continue the tradition of looking back over the last year’s highlights and low spots!

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

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

I like to start with the bad stuff so I end on a positive note, so with that said, 2016 was overall a very shitty year ME-wise.  It was an extra painful, extra exhausting, extra low-immune-system year where I seemed to hardly ever not have a migraine, cold or spiked pain day.  For a while it looked like I had a recurrence of the hideous sinus infection which led to my sinus surgery in November of 2014, which, if you’ve been around for a while, you will remember was not an easy procedure for me.  For completely unknown reasons, an artery in my nose burst a full six days after my surgery and required two very urgent visits to my ENT and ultimately a second emergency surgery, while I lost a total of almost two pints of blood.  Remember, I’m TINY; two pints is a LOT for me.

Needless to say, I am not quite anxious at the thought of having to have the surgery repeated, even though it was such a freak thing that happened; it probably won’t ever again.  But, I’m sure you’ve noticed, emotions rarely respond well to rational discussions.  So all the colds and sinus infections were very stressful for me, not just for the usual reasons of feeling extra terrible on top of my usual ME symptoms, but because the threat of another surgery kept looming in the back of my mind.

My insurance company utterly refused to cover my nerve-blocking injections for about six months.  These are the injections I’ve been getting approximately every nine months for the last seven years.  They don’t completely rid me of my mystery flank pain but they make life much more bearable.  Going without them for months really, seriously eats away at the quality of my life.  I imagine that most people would find that feeling like a dagger is constantly plunged into your side would not enhance their day-to-day experience.  Thankfully, insurance finally relented and I HAD my injections done.  I’ve already noticed a bit of a difference in my daily pain levels in that area!

I’ve also been veeeeeery sloooowly weening off Cymbalta over the last year or so.  It took a while for me to reach the maximum dose, then for me to be on it long enough for my neurologist to agree that it wasn’t doing anything, and ok my tapering down.  But as much as it takes your (or at least my) body a while to adjust to it being there, it takes much longer for it to get used to it NOT being there.  Even though having it in my system seemed to only increase my pain, make my sleep worse and make me gain even more weight, any time I step the dose down, I know to expect a week of migraines, nausea and general awfulness.  I’m on the lowest dose possible right now and hesitating before I leap into complete non-use.  There just aren’t many easy times to plan when you’re going to have migraines for a week.  But I am eager to shed the weight I’ve picked up being on it, in addition to seeing if my pain levels go down even more, so those will outweigh the discomfort of going off it eventually.

Most important for people who read my blog because of my art, feeling so awful most of the year put a HUGE damper on my ability to create in 2016.  I still did… a little… but it was nothing like what I wanted to be doing.  I created the fewest new images in 2016 than I ever have since I picked up my camera in 2010.  That was extremely depressing.  But I am hopeful that with meds out of my body, new supplements and my injections back in my system, 2017 will be a very different story!

I keep getting to about this point in my post, then getting overwhelmed with everything I want to say about the past year.  But no one wants to read a novel-length post anyway, so let’s see if I can lightning-round at least some of the 2016 highlights!

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

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

It must have been planned by the fates, because shortly after I wrote the beginning of this post, I simply forgot to take my Cymbalta one morning.  That has NEVER happened ever in the whole time I’ve been taking it.  I didn’t realize I’d been off it until the next morning, at which point I decided to just suck it up and let myself go completely off it.  There were migraines and nausea, extra fatigue and need to sleep while struck with insomnia, but best of all, there were lots of what the Cymbalta literature describes as “brain zaps,” where you feel like you stuck your finger in a light socket for a second.  At first this was happening whenever I made any sharp movement or looked quickly from one place to another (even if my head didn’t move), but it’s been getting a little better each day, and I’m hardly zappy at all now, thank goodness.  I also have a variety of medications which help curb the zappiness, which helps a lot.  I HAVE already noticed a big difference in my general level of motivation and desire to do things… I’m not really able to actually DO anything more, but I have the DESIRE to do more back, which is a wonderful, frustrating relief.  This is HOW I AM.  This is my normal.  And even though it sucks to always wants to do 50,000 things when your body will only let you do 50, it feels SO GOOD to want the 50,000 again.  On Cymbalta, I wanted to do, I’d guess, about 5 things.

One piece of somewhat sobering news: Calantha had two small growths removed in November.  One was just a little wart, no big deal, but the other was a type of cancer called spindle cell cancer.  Of course, the bad news is that “cancer” is part of the name.  The good news is that the vet appears to have removed it entirely, leaving clean margins behind, and it’s not terribly common for spindle cell growths to recur.  If they do recur, they tend to not spread very much; Cal’s growth was on her toe, so if drastic action was needed to keep it from spreading, her toe could be amputated with relatively few adverse effects.  Calantha just turned 12 on the 20th (happy birthday, Cal!!) so getting little growths isn’t shocking at her age.  Silkens are generally a very long-lived breed, especially for their size; some can even make it into their early 20’s!  That’s nearly unheard of for dogs at all, let alone any dogs that aren’t very small.  That’s all thanks to extremely careful and ethical breeding.  Thanks, Joyce, who is responsible for bringing Calantha into the world!

Anyway, my instructions from the vet are simply to wait and watch her toe.  If it looks like it’s coming back, the toe may have to be removed to keep it from spreading.  I don’t relish the idea of having to have one of her toes amputated, but I think she’d agree that if it kept the cancer from spreading, it would be worth it.  But it does seem that the most likely thing that will happen is that it will never come back and the stress and tears Calantha, Geoff and I went through over this will stay in the past.  But if you’d like to say a prayer, send healing energy or light a candle for my girl, that would be fine with me.  🙂

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This year has been a HUGE year of spiritual growth for me, which was a pretty good use of time when I couldn’t do much outside of laying in bed!  I’d like to say I planned that, but I know better.  No, I am not “religious;” although if you are, I fully support you perusing that as long as it makes you happy.  I was already certified in Reiki level 2, but this year I became a certified Fairyologist as well as a Unicorn Healing Practitioner™.  The Unicorn Healing absolutely changed my life and I would strongly recommend it to anyone who feels called to it!  If you’re interested in learning more about Unicorn Healing, my best suggestions would be to listen to the podcast on the subject from Calista, creator of the course (who is the embodiment of all things Unicorn and just the most loving person ever) and then read the specifics about the course here.  It is WELL worth the money.  You guys know I’m always on a budget, but this is one of the best things I’ve ever spent money on.  Possibly the best part?  You get to meet your own personal Unicorn spirit guide(s)!  🙂

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I also discovered and threw myself into the Channeling Erik movement.  Erik was a 20-year-old kid who struggled a lot with bipolar disorder, along with other issues, and in 2006, he killed himself.  However, while his family (and especially his mother) obviously grieved heavily for a very long time, his mother, Elisa, eventually turned to mediums to see if her son was still alive… somewhere, in some form.  And the results she got completely convinced this once hard-core atheist that there not only is an afterlife, but Erik is in it and he’s still Erik.  He’s since become a spirit guide for many, including me.  My first personal experience with Erik was while I was listening to one of his channeled YouTube videos, when Siri was set off on my phone (I was not using or even touching it) and said, “Hey sexy!”  My jaw dropped and then I burst out laughing; what a 20-year-old-guy thing to say!

Second piece of Erik evidence came during my injections.  As I’ve said before, I’m put out during the actual injections (and thank god because I woke up once during them and they hurt like a motherfucker).  My usual experience of the injections is that I’m wheeled into the OR, I start to feel sleepy as they give me drugs, I decide to close my eyes just for a second, then I instantly wake up in the recovery room what feels like half a second later.  This time, the familiar sleepy feeling came, so I closed my eyes, but instead of a nothingness, Erik appeared, holding my hand.  He was crouched down so his face was level with mine, he was smiling and speaking soft, reassuring words the whole time.  What struck me was that while I obviously recognized his face from the photos I’ve seen, it was also just a little bit different.  Have you ever met someone you’ve known for a long time online, and when you meet them in real life, they look exactly the same, but also slightly different?  It was just like that.  Also, for some reason I’d thought he had brown eyes, but when I saw him, I noticed they were blue/green.  After I’d recovered, I looked up some photos of him and he did indeed have blue/green eyes.

Last, and possibly most convincing Erik evidence has been in the private sessions I’ve scheduled with two of his translators.  I won’t get into the whole story here, but there were some emotional issues I’ve struggled with for years and years, despite therapy, self work, meditation, crystals, Reiki, and every other kind of healing I could seek out.  The first session, I asked him why I felt X when Y happened and he immediately said, “It’s because of Z.”  Instantly, I knew he was extremely correct.  His answer rang out through my soul, echoing up and down it, the truth of it shining forth from every bit of my body, mind and soul.  I can’t put into words exactly HOW TRUE I KNEW that he was, I can only describe it to you, but if you’re ever in that kind of situation, you know the feeling.  No one could ever convince you otherwise because you know in your deepest, most sacred, inner sanctum of self that it is true.  And that was only my first question, at my first session!

I know some of you will roll your eyes and skim over those last few sections and wonder why I’m so weird and why I feel the need to experience these things, let alone share them, but it’s incredibly important to me.  Not because I want to convince anyone of anything (although I do strongly believe in the truth of what I’ve learned and experienced), but everyone is here on earth to have different experiences.  I can share things that work very well for me, and they might not be a good fit for you, and vise versa, and that’s fine!  Take what you like and throw the rest away.  As long as you’re ultimately striving to be an embodiment of love, I consider that we’re on the same path, no matter how different they might look on the outside.

Another reason for sharing this is because I KNOW it will come up in my work.  Everything in my life seeps into my art; I am my art, my art is me, we cannot be separated.  Every new experience I have will color what I create, even if it’s not in a way that’s obvious.  I consider myself a fulltime student forever because I’m always learning (about a very wide variety of subjects from historical figures, spirituality, unicorns, nail art, baking, making natural products instead of buying things, how to best tea-dye cotton, how to sing Sia’s Chandelier [which I am not very good at yet, so don’t ask], animal behavior, animal communication, how to grow roses, basket weaving, applying makeup really well, the tenets of Druidry, everything I can about ME, the life lessons of Kurt Cobain and Joan of Arc, why lentils taste so good when they’re cooked with just a little care, meeting and talking to my angels [my main guardian angel lets me call him Richard, after Richard Harrow, so you know he’s just awesome], if Bigfoot exists, the exact definition of a kirtle, how the hell those medieval women kept those pointy, princessy, fairy-tale-looking hats on their heads with seemingly no support systems ever recorded… anything and everything).  Occasionally, I also study things that are directly related to photography, such as using artificial lighting; something I want to learn how to do better.  Whether you’ll ever see Erik or Kurt or Joan of Arc or pointy princess hats turn up in a photo is beside the point.  Everything I learn goes into my brain where it all marinates.  My subconscious gets all Joseph Campbell and Carl Jung, the collective unconscious chimes in, and art comes out.  That’s really the best explanation I can give to my “creative process.”  Sometimes I’ll try and work the images out more directly, but the best ones usually come from me stepping back and letting my subconscious work it out.  Everything is connected, in the macro and micro sense.  It’s all going to work into my art somehow.

Changing the subject, I feel DEEP down the rabbit hole of nail art this year, especially after discovering Cristine from Simply Nailogical.  I discovered it was something creative/artsy I could do when all I felt well enough to do was lay in bed!  Sorry/not sorry for all the photos of my nails on my social media feeds.  😉

Speaking of creative things, I’ve also been helping Geoff with a really amazing project of his own!  You guys of course know him as an incredibly talented photographer; if you’re in the LA area, you can see some of his work at The Hive Gallery through March of this year!  What you may not know is that Geoff is an even more talented writer!  He’s been working on a graphic novel called Frontiers for many years.  The story first took root in his brain when he was all of about 10 years old and has grown, matured, been refined and reworked since then until we have a glorious version of it before us today!

Frontiers is a beautifully original sci-fi story summed up as “sex, violence and sarcasm!” by the astute Katie Johnson (yes, Katie, my muse, who also acts as Geoff’s spokesmodel for Frontiers, and who is also a very talented writer herself!).  The longer tagline is, “It’s the humble story of a man destined to destroy humanity… and why that really isn’t such a bad thing.”  In addition to those delightful tidbits, Geoff skillfully mixes in striking social commentary, humor, horror, fate and love.  And yes, I did do some work on the issue too.  Mostly coloring, but a fair bit of digital art as well.  🙂

Don’t you want to give the first issue a read?  You should!  And lucky for you, you can get your very own copy for a mere 99 cents right here!  If you’re in the area, you can also see Geoff, Katie and Frontiers at the Long Beach Comic Expo’s Artist’s Alley on Saturday, February the 18th, from 10am-7pm and Sunday the 19th from 10:30am-5pm.  Go check Frontiers out, online, in person or both!

Mountain Dweller 10 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 10 – © Sarah Allegra. Model: Teri Wyble.

I also had the pleasure of working with a new (to me) model last year, Teri Wyble, who goes by Aeir online.  She lived in New Orleans, but I am so, so excited that she is moving to Los Angeles shortly!  She’s not only an incredible model, stunningly beautiful, immediately understood what I was looking for from her, but is just an incredible human being as well.  I’m really looking forward to shooting more with her as well as just going to get coffee and have pillow fights in our underwear and doing those things that girls are supposed to do together.  🙂

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Oh yeah, I launched my Spiritual Skincare line of skin serums on Etsy!

I’m sure I could go on and on, but I’ll stop myself there.  Briefly, briefly, I’ll try and give you a little taste of what to expect for 2017….

More DreamWorld.  This is my main goal for the year.  More shooting, more editing, more promoting.  Being off that brain-sucking Cymbalta will improve all these areas.  But if you’d like to help to spread the word about my little world, I certainly won’t stop you!  🙂

I suspect there will be some connections with my art and New York, but I’ll wait to see more of what happens before I talk too much about it.

In a similar vein, there will be some very cool new things happening with Connor Cochran, my business manager, of Conlan Press!  Including some new, more affordable, but still extremely high quality prints to be coming!  I don’t have a date on when they’ll be released yet; there are many steps to go through first before they’ll go up for sale, but I will keep you all informed!

Hopefully my body will stop zapping me soon and I’ll regain the strength and clarity I had before Cymbalta took over my brain and body.  And hopefully that will lead to many excellent things!  Yes, I do believe 2017 is going to be a better year for my art and health.  That’s my affirmation and I’m going to do my best to make it happen!

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Wall 1- © Sarah Allegra

Wall 1- © Sarah Allegra

Though I’m very happy calling myself a fine art, conceptual photographer, it’s fun now and then to stretch outside of your comfort zone.  I would never consider myself a fashion or editorial photographer, but when I started working with Travis Weinand, he had a looked that just screamed “FASHION/EDITORIAL” to me, so I decided to give it a go.

Wall 2- © Sarah Allegra

Wall 2- © Sarah Allegra

And you know what?  It was fun!  It was nice to do something different, and something which didn’t require 20+ hours of editing for each image.  As I made my editing selections, I just had a gut feeling that they should be black and white.

Wall 3 - © Sarah Allegra

Wall 3 – © Sarah Allegra

I very, very rarely shoot anything that’s black and white, but, as with most of my art, I listened to my instincts.  And I love how they look!

Wall 4- © Sarah Allegra

Wall 4- © Sarah Allegra

Travis is so easy to work with and friendly, despite how he can look quite intimidating at 6′ 5″, very muscular, an American Ninja Warrior alumni, and beautifully adorned with tattoos.

Wall 5- © Sarah Allegra

Wall 5- © Sarah Allegra

He does moody and deeply thoughtful looks well, but I was also pleased to have captured several shots with him being a bit more natural; an easy grin and laughing.

Wall 6- © Sarah Allegra

Wall 6- © Sarah Allegra

It turns out that we have a shared love of Norse mythology and I’m a little jealous that Travis actually has some Norse ancestry.

Wall 7- © Sarah Allegra

Wall 7- © Sarah Allegra

I gave the images just a tiny touch of viking by braiding Travis’s hair; nothing terribly complicated, but he wore it well!

Wall 8- © Sarah Allegra

Wall 8- © Sarah Allegra

Thanks, Travis, for being such a good sport and easy to work with!  Not a lot of guys would say “sure!” when I asked if I could braid their hair 😉

Wall 9- © Sarah Allegra

Wall 9- © Sarah Allegra

I’d be interested in hearing which images are your favorites!  Feel free to let me know in a comment 🙂

Wall 10- © Sarah Allegra

Wall 10- © Sarah Allegra

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I have had this image in my head for about four or five years and the timing was just never quite right for it.  Thankfully, since I’ve been working with the multi-talented Travis Weinand, I had the chance to do it the way I’d been picturing it for so long!

Are you all familiar with the Tiananmen Square Massacre in 1989?  I’ll give you a rough summary of events.  Some of the details still remain repressed though, such as the number of people actually killed, but I’ll do my best.

In April of 1989, the death of Hu Yaobang, the former Communist Party General Secretary triggered massive protests calling for political reform.  The protests began peacefully and were led mostly by university students, who gathered in Tiananmen Square to mourn and protest.  This went on for several weeks and some of the students took to hunger strikes to express their desire for reform.  Since the entire incident has been so thoroughly repressed, it’s hard to get an inside take on what was happening in the minds of the Chinese government – you can’t very well ask about an event which never officially happened.

However, after the protests went on for weeks and showed no signs of slowing, Chinese leaders decided force was called for to disperse the protesters.  Marshall law was declared, approximately 250,000 troops were sent in; given permission to use lethal force if necessary.

And, as is so often the case, once lethal force has been approved, means for using it will be found.

By June 5th, the heavily outnumbered and out-armed protesters had been largely slaughtered.  Exact numbers remain unknown; official records report 200-300 died; earlier reports fro the Chinese Red Cross on the morning of the 4th recorded 2,600 deaths, which was later retracted.  Regardless, the students stood no chance against an armed and deadly militia with orders to make them go away, whatever it took.

And then we come to June 5th.

After weeks of unrest leading to a brutally bloody and deadly fever pitch, by the 5th, one man, at least, had had enough.  As the tanks came rolling into the square to continue to get rid of the protestors, one man made his stand in a way which still shocks and awes people today.

With nothing more than a few shopping bags in his hands, he stood in the tanks’ path and forced them to stop.  The tanks tried to maneuver around him, he stepped back in front of them.  After the massacre he had surely witnessed over the past several days, this goes beyond mere heroism.  This was fearlessness.  He was angry, and no matter that the tanks could have kept rolling and ran him over, or they could have chosen to shoot him as soon as he came into view, he stood.  And for minutes, a single man stopped an entire line of tanks.

At one point he even climbs on top of the tank, bangs on it and demands to speak to the person in charge.  After a few minutes, a group of people, who seem to be protesters also, join him and hustle him out of the way, probably fearing, with good reason, for his life.

No one knows who this man is.  The world has called him Tank Man, a fitting name.  We don’t know what happened to him.  Was he arrested, was he killed, or did he simply never know the incredible impact his act of sheer bravery had on the world?  With the extend to which the massacre has been suppressed in China, it’s quite possible he never knew his act was recorded or that it became famous.  I would love to know what happened to him, but so far no one has come forward claiming to be Tank Man or knowing who he is.

One man against a line of tanks.  He knew the events of the days before and how deadly the protests had become.  He knew that he would likely be shot or run over.

But his one act of peaceful, quiet defiance stopped an army.

That is what I wanted to celebrate in my image with Travis.  I wrapped a mantle of white flowers around his shoulders, both to symbolize purity and peace, which we typically associate them with in America, and also for its association with death in the Chinese culture.  I instructed Travis to be quietly, peacefully strong, but unshakeable, and rolled up a piece of craft foam into a tube to shoot the image through, as if you were looking down the barrel of the tank at him.  I climbed a ladder to get a view where I’d be higher up than Travis (not as easy as you’d think since he’s so tall and I’m so short!) and shot away.  Travis perfectly embodied the exact emotion and look that I’d asked for.  It doesn’t get better than that.

I hope that Tank Man is alive and well.  I hope that he knows the impact his defiance had on the world.  I hope we discover some day who he is.  Until then, he will be Tank Man, the many who stopped an army.

Tank Man © Sarah Allegra

Tank Man © Sarah Allegra

Tank Man © Sarah Allegra - detail

Tank Man © Sarah Allegra – detail

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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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I think I’ve told you guys a little bit about shooting with Travis Weinand for the first time recently.  He moved here fairly recently from Philadelphia, is an accomplished musician as well as visual artist and also trains and competes regularly in American Ninja Warrior.

Travis Fights Giants

His sheer size (measuring a full 6′ 5″) along with his strength and muscle control which come from hours and hours of training every day make him an ideal model.  There are so many things he can do for real which I would have to use Photoshop trickiery for anyone else (including me!)

Seriously, for real? For real.

Crazy

You can follow Travis’ training on his Instagram feed; I find it equally inspiring and humbling 🙂

I’m still working out exactly how to best showcase Travis’ unique skills, but I noticed that he has a really great look for a more editorial kind of shoot… which was something I’d been wanting to do recently.  Luckily, Travis came equipped with a couple suits, I gave him a dagger to add an extra element to the “fashion story.”  I explained the premise I had in mind; his character was a James Bond-type who went around doing amazing, dangerous things while looking flawless and set him loose.  Travis did not disappoint 🙂

I’m happy to present the first part of what will hopefully become an ongoing series, named after Travis’ Tumblr page: Travis Fights Giants.

Travis Fights Giants

Travis Fights Giants

Travis Fights Giants

Travis Fights Giants

Travis Fights Giants

Travis Fights Giants

Travis Fights Giants

And lastly, a little behind-the-scenes fun 🙂

bts small

I hope you enjoyed this little dip into a different genre!  I hope to have more to bring you along the same line soon 🙂

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I may have mentioned before that I often have the TV on while I’m editing.  It has to be the right kind of show; something I can mostly listen to and just glance at periodically, it has to be interesting without being too engaging.  I end up watching a lot of documentaries, nature, science and history shows.  I also catch a lot of shows about the paranormal; I love stretching my imagination entertaining the ideas they present whether or not I think they might actually be true.  Often these shows have a benefit beyond simply enhancing my editing time; I learn new things, I expose myself to new ideas.  And sometimes I learn about problems in the world and I want to do something to try and help fix whatever is wrong.

Details from today's images

Details from today’s images

I’ve known for some time about the terrible future the wild lions in Africa are facing.  Poaching and habitat loss have killed off about 80% of their population in the last 20 years.  Sadly, the traits humans find most beautiful about lions are also the things that make them genetically stronger, which means not only are people driving lions to the edge of extinction, but the lions which are left are weaker and less able to survive.

There are approximately 20,000 wild lions left in the world now.  This is a drop in the bucket from 450,000 about 30 years ago.  If nothing changes, lions could become extinct within the next decade.

Can you imagine a world without lions?  The fragile ecosystem which would be thrown into chaos by their loss?  A world where children would grow up never seeing the majestic animals?  Where lions would seem as unreal to them as dinosaurs?  Telling your child that yes, these animals all once roamed the land, but now they are gone forever.

And it is because of humans that lions are teetering on the edge of this chasm.

If people are the cause of their destruction, we have a moral obligation to try and save them.  As my close, personal friend Rustin Cohle would say, we have a debt to pay.

As is my usual first course of action, I decided to address the problem with photography.  As I began building the concept in my head, I realized it would fit in well with DreamWorld.  While most of the land is beautiful and verdant, there are less lush areas and also touches of actual evil.

It was at this time that I came across Travis Weinand.  Travis is a multi-talented transplant from Philadelphia; he models, of course, acts, sings and plays bass in his really great heavy metal band Burden (seriously, I genuinely like their music!  Give it a listen!) illustrates and paints beautiful images, he’s been a tattoo artist and has been competing in the last several seasons of American Ninja Warrior.  Travis has promised to show me how to make my voice sound evil like I’m singing in a metal band and I’m going to show him how to levitate… in a photo at least 🙂  ANW isn’t something I’d seen much of; I quickly discovered it’s really physically demanding; here’s a short video from Travis to impress your socks off:

Travis’s physical strength, size (he’s 6′ 5″, so anybody seeing us walking together must have gotten a chuckle since I am all of 4′ 11″) and blond hair made him feel like a perfect lion-man.  I decided to make a mane headdress, something more symbolic of a mane rather than something that was trying to perfectly replicate what a lion’s mane looked like.  I had some really lovely blue and brown metallic yarn that I’d gotten on sale and wasn’t sure what I was going to do with, which seemed like a good place to start.  Since Travis has brilliantly blue eyes, I decided to work some blue into the mane; this was a metaphoric mane, I decided I could bend the color rules a little.

Various amounts of blue yarn and other colors braided together

Various amounts of blue yarn and other colors braided together

It happened that, of course, I got sick again while I was getting ready for the shoot – I think I’ve told you guys this but apparently my body has decided that it’s going to have a cold every 2-3 weeks until I have sinus surgery to stop its evil plan.  My surgery is November 4th (wish me luck!) and I am so eager to have it done with.  I’m really looking forward to a time when I can go more than a few weeks without getting sick on top of already being chronically sick.

That has, of course, been very draining, but knitting is one of those activities that you can do (if you’re making up your own pattern anyway) without engaging very much of your brain.  It’s also quite soothing, the repetitive motions over and over again, and once I got through the really feverish first couple days of the cold it was a relief to have something I could work on and feel a little bit productive about.  So a lot of braiding and arm-knitting happened while I was well enough to be bored but not well enough to do much of anything else.  Above, you see the braided loops I made with varying amounts of a brighter blue yarn worked into the rest.

The under-mane

The under-mane, loops attached

Lion’s manes are typically darker close to the skin with the hair lightening as it gets longer.  I made the “under-mane” from the original blue and brown yard that had started the whole idea, arm-knitting a general idea of the shape I wanted.  I hand-tacked some of the braided pieces around the bottom to hang down decoratively.

The... main... mane

The… main… mane

The, uh, main mane was also arm-knitted, into a similar shape, but fuller and more expanded toward the bottom.  I love this brand of yarn.  I want to arm-knit everything right now.  It has such a beautifully organic look when it’s finished, even if you’re making it up as you go!

Ruffs

Ruffs

Lion manes are often majestically full right over the center of their chests, so I quickly knit up a couple filler-pieces to give extra fullness to Travis’ mane.  You’ll notice that one is a little bigger than the other.  The official reason is because it’s natural for there to be a slight asymmetry to any kind of animal markings or fur.  The real reason is because I’d run out of yarn and didn’t have money to go buy another skein.  Plus, I didn’t think it would really show in the final images, so I didn’t worry about it too much.

The beginning of a mock-up

The beginning of a mock-up

I’m including this photo because for one, Aly gave me the unicorn-on-a-stick toy so I wanted her to see it is being used and loved, and also because it just really looks ridiculous 🙂  I needed to build up a shape that was going to let me see how the mane would actually be hanging and my regular foam head wouldn’t nearly do the job.  Not only because it’s far too short and becomes unstable if I pile it high on a lot of other objects (I know this from experience) but I needed the mane to spread out so I could really see it.  So this is the unicorn-on-a-stick sandwiched between the end of my bed and the blue dresser at the end of my bed, wrapped up with a very fluffy pink bathrobe which is so long that I use it as a blanket.  In the next photo you’ll see another bathrobe draped over the unicorn’s head to give it more a human-head shape.  There’s a method to all the madness.

And if anyone is wondering, the cardboard box is there for the cats (mostly Maynard) to lay in and the big pile in the background is my Costume/Fabric/Backdrop Pile.  I’m working on a better way to store it all.  There are only so many hours in a day.

First draping

First draping

I’d been planning to braid the mane into Travis’ actual hair, which is cut in a very cool undercut style which makes me think of Jimmy from Boardwalk Empire.  I seem to be leaving a hole in the middle of the mane; that’s on purpose to allow for Travis’ hair.  You can see the under-mane some and I’d started adding extra braided bits which just hung down.

Finsihed!

Finished!

And here it is all done!  Braided loops, hanging braids, front ruffs; it’s all there.  It’s probably hard to picture how it will eventually look, but don’t worry, you’ll see very soon 🙂

I had come across some boulders in one of my walks (my doctor’s suggestion of a safe exercise for me right now, which makes me sad when I think about all the yoga, Pilates and ballet I used to do.  I like to do the walks in nature since that makes it much more interesting and enjoyable).

The plants around it, which had been brilliantly green in spring were now brown and dying, so it felt like the perfect setting for my Last Lion, as I am calling this new DreamWorld character.

I imagine that the Last Lion had a vast kingdom once where his people thrived.  During the Yellow King’s grab for power, his people and land suffered greatly when they stood up against the Yellow King.  They are fighters.  And though the Yellow King is now banished, he did real harm to the land and its people before he left.

They are fighters.  They have been greatly wounded and they could vanish forever and be a mere memory in DreamWorld as the lions could be in our world… but I think they’ll prevail.  They have not been beaten yet.

And if you would like to help our world’s lions, look into the Big Cat Initiative.  They have a really solid plan of how to get the lions back on their feet while still keeping the farmers and cattle in the region safe, promoting harmony between them.  Another very quick, simple yet effective way is to add your name to any or all of the petitions below, all working toward protecting lions from extinction:

http://www.change.org/p/save-african-lions-from-extinction-by-listing-them-as-an-endangered-species

http://www.ifaw.org/united-states/node/92726/

http://www.thepetitionsite.com/1/save-lions-from-extinction/

Harmony between man and nature.  It’s such a common theme in DreamWorld, and one we need more of in this world.

Please enjoy the Last Lion images below and consider signing a couple petitions and joining the Big Cat Initiative!

Lost Pride

Lost Pride © Sarah Allegra

Lost Pride detail © Sarah Allegra

Lost Pride detail © Sarah Allegra

Lost Pride detail © Sarah Allegra

Lost Pride detail © Sarah Allegra

 

Dying Trophies © Sarah Allegra

Dying Trophies © Sarah Allegra

 

Dying Trophies detail © Sarah Allegra

Dying Trophies detail © Sarah Allegra

 

You can look forward to seeing more of Travis soon!  I’m very excited about using his incredible physicality strategically in images; he can do things for real which I’d normally have to rely on Photoshop for.  Should be fun!  Thanks, Travis!  And thanks to all my readers 🙂

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