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Posts Tagged ‘health’

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

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

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

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

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

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

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

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

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

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

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

Fiverr header

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

 

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

 

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

Unicorn Healing Header

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

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

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

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

Introspective

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

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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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Let me start by saying that I’m sorry I can’t give you more actual details about what’s going on, but I’ve been advised to continue to keep them under wraps.  Those of you who follow me on social media have already heard that I’m going through a difficult time right now.  What I can tell you is that I am about to do something on the 14th which is absolutely terrifying to me and has incredible, life-altering implications.  For me, Geoff and the fur-kids.  And while I have lots of people (like all you dear, lovely folks reading this) who are loving and supporting me, it’s all going to come down to the words I speak and actions I take on the 14th.  I will be alone at the critical moment; the pressure feels crushing.

I feel like Louis Zamperini in the POW camp holding his wooden beam.  I feel like Aerin facing the giant dragon Mar.  I feel like the unicorn standing up to the Red Bull.  I feel like one of Leonidas’ 300.  Frodo off to Mordor.  Rosie and Pernicia.  Lissar and her father.  You get the idea.

One small, anxious girl going up against something far, far bigger than she is; ill-equipped for the job.  The higher the pressure, the more my brain feels scattered and forgets important details.  And it’s crucial that I remember everything, no notes allowed.  The outcome of this will have a huge impact on my financial state, which is currently pitiful.  I need this win.

To say this has been stressful would be a huge understatement.  This sincerely feels like one of the single hardest, most frightening thing I have ever had to do.  But there’s no getting around it, I HAVE to do it.  And I will do my best.

The stress is causing giant waves of discord through my body, mind and soul; causing mayhem and destruction.  For weeks now, every night, I either have stress dreams or I dream that I’m dying… the dying ones are the worst because, in my dream, it’s wonderful, beautiful, the most peaceful, joyful thing I’ve ever experienced.  And then I wake up and remember real life and it feels like a glorious gift has been snatched from my hands while the weight of life crushes down upon me again.

Despite numerous antacids of all kinds, I’m having persistent heartburn, often in the middle of the night.  My pain levels are all elevated.  And as you can imagine, my sleep is suffering in quantity and quality.

I’m not writing about this to simply throw myself a pity party.  I am asking for your support.  If you pray, please pray for a quick and overwhelmingly successful outcome.  If you do Reiki, please send as much as you can.  If you light candles, please light one for me.  Please send all the love, good thoughts and energy that you can spare, whatever your system of faith may or may not be.  I will gladly take it all!

I am determined to win this battle.  And while it traditionally takes a while to hear about the exact outcome from the fight, I am equally determined to get an overwhelmingly positive answer, right then and there.  I am visualizing myself being victorious.  As much as I am afraid, I am doing my best to catch myself when I start to go into a spiral of worry over what will happen if I fail.  When I notice those thoughts, I actively change my vision of the future to one that I want.  I don’t need to open myself up to attracting any negative energy!

One thing about all the metaphors I listed a few paragraphs ago; despite the odds, they all succeeded.  Thinking about others who have overcome incredible trials is deeply comforting to me.  If they could do it, I can do it too.

I can say one thing: this is not about a new turn in my health or anything else along those lines.  My health is fairly crappy right now, as is usual, but I have not taken a turn for the worse…  other than the spiked pain, non-stop migraines, constant tension in my whole body, wildly increased anxiety, panic attacks and depression as well as extreme exhaustion brought about by all of this.  It’s stressful to the point where I don’t even want to edit or create many days, which is an almost unheard-of low for me.  But these are clearly responses to the weeks and weeks of stress and worry.  I don’t want you guys to worry that I’m hiding some terrible new diagnosis from you.

I know I will get through this.  And I know that with Geoff, I will deal with the outcome, whatever it is.  But more than that, I know I will win.  I have to.  Knowing that doesn’t take all my fear and anxiety away, but it does give me hope to cling to.

I feel incredibly fragile in every way, but I will battle and I will be victorious.  Still, your prayers, well wishes and love would mean a great deal to me right now.  I can use all the help I can get.

I promise that I will try and let you guys know exactly what’s happening just as soon as I can.  I appreciate that you’re all being very understanding about that and respecting the fact that I simply can’t divulge much right now.

This self portrait felt especially appropriate for this post.  It serves as a reminder and inspiration to me to keep fighting, to get up when I’m knocked down, and most of all, never give up.  Thank you all so very, very much for all your support!  I cannot thank you enough.

With that said, please wish me a miraculous victory as I go into this battle.  Now, let me go find my suit of armor.

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra

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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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Something you’ll know about me if you follow me anywhere or have read any other blog entries is my deep, abiding love for Peter S. Beagle and all of his creations.  Yes, he is best known for his beloved masterpiece The Last Unicorn (the same story that was made into an animated film and you probably saw as a child, not grasping its full, profound meaning).  The Last Unicorn deserves every bit of praise it gets and more.  It’s the most incredible story, full of wonder and love and great sorrow… and joy, despite, or because of, the sorrow.  What many people don’t know is that Peter is an exceptionally prolific writer, having written more books and short stories than I can count (A Fine and Private Place is a very close second favorite to The Last Unicorn).  And every single one is just as brilliant of a masterpiece as The Last Unicorn.

In The Lilac Wood, a self portrait

In The Lilac Wood, © Sarah Allegra, a self portrait

I actually don’t remember a time when I didn’t know the story of The Last Unicorn.  As in the book, “there has never been a time without unicorns,” so there was never a time for me without The Last Unicorn.  It came out the year before I was born and I grew up knowing it.  My brother and I both loved it, and to this day can still quote nearly the entire thing by heart.  We would make a game out of it, seeing how long we could volley the script back and forth.  As I got a little older, I started reading the book, and each time I did, I discovered new levels, new depths, new nuances that I hadn’t been old enough to understand before.  It’s a common misconception that Unicorn is a children’s story, simply because the movie made from it was animated. There’s nothing wrong with children reading or seeing the movie, but it is a story for grown-ups.  You can’t fully appreciate the skillful, deft writing, the terrible tragedy, the glorious splendor, the tear-inducing sacrifice, the depth of the characters until you’ve experienced more of life yourself.

And Other Secrets, © Sarah Allegra, Model: Anna Wood

And Other Secrets, © Sarah Allegra, model: Anna Wood

It doesn’t surprise me now that I look back and remember that the very first self portrait I ever took, far before I was a “photographer” or a “self portrait artist” was inspired by the book.  The character of the unicorn, magically transformed unwillingly into a human girl for much of the book, taken from immortality into a body she feels dying all around her, resonated so deeply with me.  I probably don’t have to draw you a very detailed map of how it relates to my experience of living in a shitty body possessed by ME.  And yet the unicorn gains something which sets her apart from all the other unicorns in the world by her ordeal.  She learns regret.  She learns to love.  She is made more full for all her suffering.  It’s a hope I cling to for myself, sometimes harder than others, but one I return to again and again.

The Importance Of Mortality, © Sarah Allegra, a self portrait

The Importance Of Mortality, © Sarah Allegra, a self portrait

About two and a half years ago, Peter magically discovered some of my work which had been inspired by his writing (both The Last Unicorn and other stories) and his business manager, Connor Cochran, reached out to me.  There is still much under wraps and it will all be revealed in time, but we began working together, which was more than a dream come true for me.  Bless him, Peter is the antithesis of the saying “never meet your heroes.”  Meeting Peter only me love him and his writing more.  There truly are few more kind, generous and relentlessly creative people on earth.  And he is this generous with everyone.  At The Last Unicorn Screening Tour (which I HIGHLY recommend you attend!!) he will stay until EVERY SINGLE PERSON who would like to meet him, hug him, have him sign their book or take a photo with him is seen.  Despite the often very long lines, he doesn’t make you feel rushed, he takes his time and lets you say whatever you need to say.  In the moment you’re with him, you are the only person in the entire world and you have his full attention.  This does mean the screenings often end in the wee hours of night, and I don’t know how they all do it, those hours would kill me, but it’s just who Peter is.

Salt Wine - © Sarah Allegra, model: Peter Onorati

Salt Wine – © Sarah Allegra, model: Peter Onorati

A little while after I had signed my contract with Conlan Press, Peter’s publishing house run by Connor, I gathered up my nerve and asked Connor if I could borrow Peter and photograph him as DreamWorld‘s King when they were in town for the next screening.  To my joy, Connor gave me the go-ahead.  This led to a nightmarish few weeks when I frantically created Peter’s incredibly elaborate costume made almost entirely out of paper (fully documented here) but the results were worth every tearful, over-tired night I had getting ready for it.  No one could be DreamWorld‘s King better than Peter.

Beloved Of The Crown - Peter as the King, with Dedeker Winston and Katie Johnson as his maids.

Beloved Of The Crown – Peter as the King, with Dedeker Winston and Katie Johnson as his maids.

Aerie - Peter as the DreamWorld King.

Aerie – © Sarah Allegra, Peter as the DreamWorld King.

Why am I telling you all this?  Just to illustrate what an incredibly special and remarkable person Peter truly is, and how wonderful Connor and everyone at Conlan are.  They put their all into every single screening.  They are genuinely all wonderful people, and Peter is everything you would hope he would be and more.  I’ve been fortunate enough to have attended two of them; the first time was the same day that I photographed Peter so I had no energy for dressing up myself for the show, but the second time I went as Amalthea, as seen below (which won the costume contest that night, probably because of my handmade Have A Taco Purse, which I can make for you too!).  Seeing the movie in a theater never fails to bring tears to my eyes.]

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

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

Which, in my rambling, round-about way, leads to the main thrust of this post.  The tour had planned on traveling to multiple countries in Europe this year, and while the movie will still be shown and everyone will still have a fabulous time, Peter will be unable to attend due to a non-threatening health issue.  Peter is ok, there’s nothing to worry about, but still… even non-threatening health issues suck.  Peter hopes to be back on the road soon, but I thought that it might cheer him up if we all rallied and showed him some love.  What do you say?  For our beloved author who writes the stories which make us weep simultaneously from sorrow and joy?  He has given SO MUCH to the world, let’s try and give even a fraction of it back to him!

To Be So Full, © Sarah Allegra, model: Dedeker Winston

To Be So Full, © Sarah Allegra, model: Dedeker Winston

What do I mean by that?  Well, feel free to leave a comment here on the blog.  I’ll send them on to Connor who can forward them to Peter.  Feel free to leave kind words of encouragement on his Facebook page or send him an email at contact@conlanpress.com.  I’m sure he will really appreciate everyone’s show of support!

Sleight Of Hand © Sarah Allegra, featuring my neighbor John Harnagel

Sleight Of Hand © Sarah Allegra, featuring my neighbor John Harnagel

And let’s face it; we owe him.  For decades of wonder, joy and poignant insight.  For holding up mirrors full of fantasy which still reflect ourselves back and help us make new discoveries.  For every brilliant word typed, every tear shed and every heart which grew in size because of his writing.  For showing us what heroes are for.  For bringing us unicorns.

Get well soon, Peter.  We all love you 🙂

Now Has Come The Time For Silence -© Sarah Allegra, a self portrait

Now Has Come The Time For Silence – © Sarah Allegra, a self portrait

See all my Peter S. Beagle-inspired images here and buy fun things with these images on them here!

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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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