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Posts Tagged ‘self’

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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I have VERY BIG, GOOD NEWS.  I’ve felt like bursting from holding it in!

Where Earth Meets The Sky, model Katie Johnson.  © Sarah Allegra

Where Earth Meets The Sky, model Katie Johnson. © Sarah Allegra

My work has been accepted into A Gallery!  A Gallery is a fantastic online gallery who represents some truly stellar other artists in whose company I am proud to be.  You might know of Christy Lee Rogers or Tyler Shields, who are both extraordinary and whose work I knew before I was to be shown alongside them.  One of the most giddy, fan-girl moments though was discovery A Gallery also represents Chris Parks whose work you will know if you’ve seen one of my very favorite movies ever; The Fountain.  That magical, swirly, organic background used in so many shots (especially in clouds of stars and gas in space) are his creation.

Chris Park's dreamy, swirly, organic creations in The Fountain

Chris Park’s dreamy, swirly, organic creations in The Fountain

Chris Park's dreamy, swirly, organic creations in The Fountain

Chris Park’s dreamy, swirly, organic creations in The Fountain

*Squealing, fan-girl hopping*

Ahem.  I am VERY happy to have found such a wonderful home for my art!  I’m thrilled to be working with A Gallery’s owner, Fraser Scott; it’s going to be a really great, long-lasting relationship for everyone involved!  I can’t wait to see what this brings!!  This feels like a really big accomplishment to have checked off my life’s to-do list… and yes, there was champagne when I checked it off 🙂

Vanity's Murder - © Sarah Allegra

Vanity’s Murder, a self portrait – © Sarah Allegra

**Please do take a look at my work on their site!  If you like something, buy it!  You deserve it 🙂  And you’ll be supporting an independent artist and a fantastic gallery at the same time!**

The Shepherdess - © Sarah Allegra

The Shepherdess, model Lucea Shipler, my grandmother! – © Sarah Allegra

When you purchase a print, you will receive one of my gorgeous, luscious, limited-edition, signed and numbered museum-quality prints, printed on the thickest, most delicious fine art paper.  I am going to be printing all my images on Hahnemuhle Fine Art Pearl Paper.  It’s almost like a watercolor paper and it picks up every tiny detail for your viewing pleasure!  As a wonderful bonus, the paper itself is ever-so-slightly shimmery, which truly adds a whole other depth to the images and enhances their magical, mythical feel.  It’s been a long time searching for exactly the right paper which would give me the lifetime of quality I want along with the subtle, fae-like touch of pearl, and this paper is it.  You really have to see it to understand how gorgeous it is

Fae Light - © Sarah Allegra

Fae Light, model Dedeker Winston – © Sarah Allegra

I have sung the praises of my printers, POV Evolving, before and I’ll say it once more.  They are not close to me.  Their location is somewhere between a hassle and a nightmare to get to, I can never go without getting a little lost coming or going, and it’s a big mental and physical drain to make the trip down.  I don’t care.  Their work is so fantastic, I do not care where they are, how long it takes, how snarly the traffic is; it’s completely worth it!  Lauren, who does my printing, is also a truly lovely person who makes the trip extra worthwhile by being so pleasant when you get there.  Pleasantness aside, POV just does astonishing work which will last a lifetime and more.  I have been told by clients who have my work hung in their homes, that when people come over and see my prints for the first time, there are often gasps.  I feel immodest saying that, but that really is the level of beauty you’ll be getting!

End Of Line - © Sarah Allegra

End Of Line, model Aly Darling – © Sarah Allegra

It feels truly wonderful to have found a home gallery run by such a great person who has a commitment to my work, an emphasis on working ethically with everyone, and being in the company of such immensely talented other artists!

A Drop Of Blood, © Sarah Allegra

A Drop Of Blood, model Katie Johnson © Sarah Allegra

I’ve scattered some of Fraser’s image choices through this post, but please take a look at which images he has selected for his prestigious gallery!  And if something strikes your fancy, feel free to purchase a print for yourself or a loved one!   🙂

Hope Of Heaven When Their Lives Ain't Lived - © Sarah Allegra

Hope Of Heaven When Their Lives Ain’t Lived, model Veronica Ricci – © Sarah Allegra

I will still be selling prints through my Etsy shop; either way you will be receiving the same, incredibly high-quality item!

Again Throughout Eternity - © Sarah Allegra

Again Throughout Eternity, model Sandy Moore – © Sarah Allegra

I should have some more good new to share soon, but in the mean time, feel free to join me in having a celebratory drink of your choosing!  Cheers!

3 Good Days

3 Good Days, a self portrait – © Sarah Allegra

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Originally, I’d intended on posting this around Black Friday/Cyber Monday but I was prevented by forces outside my control.  The week of Thanksgiving, Los Angeles was oppressed relentlessly by Santa Ana winds which are always a challenge to my body, but especially so this time.

With my recent sinus surgery (which I still need to tell you about!) I was already at less than my usual lower-than-average health and my sinuses just about lost the will to live once the winds started.  This meant almost a week of migraines every day, but even after the worst of it had passed, I was terribly behind on everything I hadn’t been doing while I was laying in the dark with an ice pack on my head.  Things fell behind.

This really has no connection to either Black Friday or Cyber Monday now but a large percentage of my sales happen around the holidays, so I hope you’ll indulge this post anyway 🙂

sarahallegra.com

I have a perfect gift idea for anyone in your life (or perhaps you!) who is a bit artsy or introverted or just wants to develop their self-awareness.  INTROSPECTIVE: A Photographic Quest is a truly unique experience unlike anything else I’ve found.  I created this online workshop after searching for something like it, and not finding anything that resonated with me.  In the eight-week course, you will use your camera to explore your inner self, receiving a new assignment each week challenging you to delve into your secrets, fears and joys.

A Student's Image

A Student’s Image

No photography experience is needed (although links to more technical information are provided for anyone who wants to learn more about it).  This is not a class about photography, it’s about you taking you exploring your inner self, making new discoveries and using art to document what you find.  It’s also an extremely therapeutic experience; I based the structure of the class on the healing I found in photography and self portraiture.

A Student's Image

A Student’s Image

In a sense, you could say it’s a course about self portraiture since everything you create will be imbued with who you are, but there are no requirements to put yourself within the image, or even have any people in your images.  If you find that, say, tea leaves on a saucer express what you’re feeling, that’s just as valid as any other way of expressing yourself!

You will learn about yourself over these eight weeks and make wonderful discoveries.  The best, and most long-lasting, of these may just be discovering the profound healing power in art.  This is an eight-week adventure full of fun and joy in a safe, love-filled environment.  If you want to share your images with the world, you’re more than welcome to, but there’s no requirement to do so.  INTROSPECTIVE is about you, through and through.

A Student's Image

A Student’s Image

With the new year and its resolutions quickly approaching us, I can’t think of a better gift to start the year off with!  Whether you take the class yourself or give it as a gift to someone, I can guarantee that not only will it be completely different than every other gift you or they will receive, but that it will do wonders for the soul of every participant.

To jump-start this for the holiday season, I’ve created a special promotion to receive $25 off INTROSPECTIVE That’s 30% off!  Just enter code INTROXMAS2014 when you check out, whether you’re buying for yourself or someone else 🙂

A Student's Image

A Student’s Image

I’d like to point out that INTROSPECTIVE has not been hosted on Udemy for its whole existence; in the beginning, I hosted it on my site.  While Udemy shows that very few people have taken the course, the number is actually higher.  And somehow some of the reviews have gotten erased as well.  Sigh.  Luckily, I have another one I can share with you from student Aly, two of whose photos are right above and below!

I have taken part in Sarah’s Introspective course twice, not because I missed anything the first time, but because her course offers the unique quality of fresh opportunity for introspection and growth, with each round. Much like a “Choose your own Adventure” book (but with far more substance, of course), the beginning, journey and end of the Photographic Quest are what you make it, with Sarah’s guiding topics, suggestions, questions and technical encouragement, to keep the journey on track. Through her course, I created several self portraits which spoke from my heart, of which I am very proud and thankful to have been guided toward. I absolutely recommend Introspective: A Photographic Quest, for anyone interested in exploring themselves through self portraiture. I’ve come from this course with much more confidence in my ability to realize self portraits, from concept to fruition, and of course, a closer understanding of myself, through this Introspective journey.

A Student's Image

A Student’s Image

Thank you, Aly!  Her review sums up what I want the class to be for everyone; something you can return to again and again, adjusting it for yourself each time.  And you can retake it at any time; the lesson outlines are downloadable, so you can go through the journey as many times as you want for the one price of admission!

A Student's Image

A Student’s Image

With all that said, think about INTROSPECTIVE as a gift for yourself or a loved one.  It will certainly be a completely unique gift, unlike anything else they might receive!  And with the benefit of being able to repeat it at any point, it just keeps giving 🙂  On top of that, use code INTROXMAS2014 when you check out to get an entire 30% off!  I hope you’ll take the journey and go on an adventure!

A Student's Image

A Student’s Image

I’d love to hear your thoughts about it, both as you’re on your quest and after.  And if you upload your images to the Flickr group for INTROSPECTIVE, they just might get featured here!

Be bold!  Go on a quest and return a deeper person 🙂

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******* NEW! *******

Red Bubble is holding a 15% of Stocking Stuffers Sale!  Use promo code STOCKING15 to get 15% off all stocking stuffers until 11:59pm PST on Friday, November 21 2014

I have also released my 2015 calendar, featuring 12 of my most popular images from the previous year!  I put out a new calendar every year making each one different and unique, as well as being a great value in getting 12 images to display.  Snap up this collector’s item and add a little magic and beauty to every day of 2015!

My 2015 Calendar!

My 2015 calendar!

The calendar features the beautiful models, actors and actresses Katie Johnson, Dedeker Winston, Dan Donohue, Travis Weinand and Aly Darling.  Images span many of my series’ such as DreamWorld, Enchanted Sleep, Glass Walls, Orphans Of The Mother Road and self portraits!

My Red Bubble store carries calendars, tshirts, hoodies, stickers, blank greeting cards, post cards, phone and tablet cases, laptop skin, throw pillows, tote bags, mugs (travel and regular) and even a few duvet covers, all covered in my images!  Every item they produce is extremely high quality and will last forever.  You can knock out all your holiday shopping in one stop, so come on by!  🙂

*******

It’s been a very crazy couple of weeks since my last post!  My sinus surgery is over, including an odd complication I had which caused an artery near the back of my sinuses to burst unexpectedly.  This led to me losing 2-3 pints of blood and having to have an emergency surgery last Tuesday to correct it.  I’m happy to say I seem to be all done bleeding and nothing else strange has happened since then!  I’ll tell you more about my adventure in another post; it’s a rather long story.  I’ve regained most of my strength but I’m still recovering a bit.  So let me tell you about today’s self portrait for now!

This image has been in my mind for a long time, ever since I this post.  I had discovered, in the course of looking through my blog’s stats, that someone had found my blog by searching “I have Chronic Fatigue Syndrome and I want to give up.”  My heart still breaks for this person.  I wrote a post at the time replying to them but I’ll probably never know if they saw it or what happened to them.

I’d wanted to create an image for my Enchanted Sleep series based on the idea of being beaten down by chronic illness yet getting up, but it took a while.  My first attempt was unsuccessful and I had to think for quite a while about what wasn’t working and then find time to reshoot it.  Eventually though, I had created the image I wanted to make.

While I had physical, chronic illness in mind when I was creating this, the image is certainly not limited to being interpreted just in that light.  Mental illness, for example, is another example of something you have to rise from again and again.  And it happens that I’m in a bout of depression myself right now.  The reasons are long and complicated so I won’t get into them now, but every day recently, I’ve felt like this just trying to get out of bed… never mind how I might feel physically.

Chronic illness, mental illness… they are not something you can beat in a day.  You’ll have good days and bad days.  You may have entire days, or even weeks or months where you don’t struggle with whatever it is that knocks you down.  But when it comes, you have to get back up.

Every time.

Every time.

Every time.

It can be exhausting, and you might not have anyone in your life who knows that you’re even battling like this.  Those who have a strong support system in place are fortunate; it helps, a lot.  But whether it’s something others know about or not, it’s a demon which must be faced and conquered every time it arises.

I hope that everyone reading this has their own support system to keep them going.  Friends and family, online or off, who can cheer them on.  Who can give them the push or pull they need.  We all need help from each other; there’s absolutely nothing wrong with asking for or receiving help.

Asking for help can seem more daunting than fighting the beast holding you down.  But do it.  No matter who is reading this, you have people in your life who love you, who care about you, who want you to succeed, who will extend the hand you need to get you through this.

Whether it’s an internal struggle no one else will ever see or you have countless loving people help guide you through your troubles, we must rise every time we get knocked down.

Every time.

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra

If you need help and you don’t feel comfortable approaching anyone you know, you can always talk to The Samaritans.  You can call them, email them or even text them.  They have people around 24/7 to help you through whatever you’re facing and it’s completely confidential.  They are well trained and caring.  Give them a try if you’re in need of someone to talk to!  I can personally vouch for how much they help.

 

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Yesterday, the 27h of May, marked my five-year anniversary with ME… which leads me to talking about why I call it ME verses the multitude of other names given to it, in addition to introducing my latest photo on the subject which you can WIN a print of!  Make sure you read all the way to the end to find out how to enter 🙂

Vanity's Murder

A detail shot from my new photo

I’ve been wanting to address this for some time and it just keeps getting pushed down to the bottom of my blog to-do list.  But my anniversary seemed like a good time to bring it up.   In the United States, we call ME by a whole host of other names; Chronic Fatigue Syndrome (CFS), fibromyalgia (fibro), chronic fatigue immune dysfunction syndrome (CFIDS), post-viral fatigue syndrome (PVFS), Chronic Epstein-Barr virus (CEBV), and most insultingly, the “yuppie flu.”  Luckily we seem to have mostly left the “yuppie flu” label behind us, but many of the other names are not much better.  Calling it Chronic Fatigue Syndrome has been likened to calling tuberculosis “Chronic Coughing Syndrome,” or stomach cancer “Chronic Upset Tummy.”  The names are not indicative of what’s really happening in our bodies.  They are trivializing and patronizing.

I like myalgic encephalomyelitis (ME), which is what most of the rest of the world calls it.  It literally means “inflammation of the brain and spinal cord with muscle pain.”  This at least hints more accurately at what may be going on.  Muscle pain is one of the defining characteristics of reaching that diagnosis (as I can personally attest to; I woke up nearly weeping from muscle pain after a strenuous shoot yesterday) and the evidence is suggesting more and more that this is ultimately a neurological condition.  ME at least doesn’t carry the negative connotations of the other names; people are generally under the assumption that they are not “real” diseases.

In Between Awake And Asleep

In Between Awake And Asleep

I should be perfectly clear that there is still a tremendous amount of controversy over what name to give us, and if they really are all more or less the same disease.  I genuinely believe they are the same disease from everything I’ve seen and read, but there will be many who do not agree with me.  However, since the entire reason the US broke off from the rest of the world’s name in the 1980’s was to create an insurance loophole so companies could deny coverage to patients… I am reluctant to believe what anyone on that side of the table claims.

So I call it ME, though since it is a lesser-known name here in the US, I’ll often consent to referring to it as ME/CFS.  Meeting the names halfway, so to speak.

As I said, yesterday was my five-year anniversary with ME, although the signs were certainly starting to form years before that.  I was unnaturally tired all the time, I got sick and injured easily and seemed to have a little more trouble healing.  But since I barely knew ME existed, and I was young, in my late teens and early twenties, I figured it would pass.  You think horses, not zebras; you don’t automatically jump to the conclusion that you have a strange, little-known disease.

A Fading Girl

A Fading Girl

Some of you have heard the story of how I became acutely sick with ME before, so I will try and just hit the high points.  Five years ago Geoff and I went out to lunch.  We’d been dating for exactly a month.  After lunch, I felt tired so I laid down and took a nap.  When I woke up, my stomach was very upset and I thought I had food poisoning.  Though it wasn’t pleasant, I figured it would pass quickly.  Several days later I still felt nauseous, so I saw a doctor who was very unconcerned about me and suggested I take some Pepto Bismol.  How helpful.  Over the next several days the pain in my stomach gradually changed from an all-encompassing gripping, nauseous pain to an extremely sharp and localized pain in my right flank.  Appendicitis? I wondered.  The pain was higher than would be classic, but it was so sharp, extreme and had come on so suddenly, I worried nonetheless.

After 10 days of pain and nausea, I finally saw a good doctor.  They determined pretty quickly that it wasn’t my appendix, ordered an ultrasound and a LOT of bloodwork (the only reason I didn’t faint was because I was sitting down, but I felt bad enough to wish I’d fainted.)  Everything came back normal.  They thought it must be a kidney infection, so I took the antibiotics, glad that we had figured out what was wrong and that I’d be over it soon.  But the treatment didn’t do anything; I still felt terrible.

That same story repeated and repeated over the next few years.  For a long time it was thought that my crazy flank pain and my fatigue were two separate problems; at this point, I believe the evidence indicates they both stem from the same cause.  I have undergone more tests and procedures than I care to remember, I have tried every food and supplement imaginable; every Western and alternative approach.  Occasionally I find something that helps even fractionally, and I cling to it like a drowning girl.

When I think back on this time, I feel like what was happening in my body is best expressed by this scene from Akira, near the end of the movie.

Tetsuo's grim end.

Tetsuo’s grim end.

My body seemed to completely fall apart and spiral out of control, with me stuck in the middle of i.  Up until then, I had been quite consistent with doing Pilates and yoga, and enjoyed their effects on my body.  I ate pretty well, I didn’t smoke, drink or do any drugs.  I felt like I was doing things right.  But when ME finally hit, none of that mattered any more.  My body became a disgusting, horrible prison with a mind of its own, seemingly bent against me in every way.  And the fact that almost none of this showed outwardly made it even worse.  One of the things I hear from other ME people as being the most frustrating thing is having people say to them, “You don’t look sick.”  It’s true, often we don’t (until you get into the very dire, extreme cases of ME) but inwardly, that movie clip is what I felt was happening to me.

Thankfully, the flank pain has been reigned in somewhat over the years through arduous nerve-blocking injections, although it never truly goes away.  And we still have absolutely no idea what’s actually causing the pain in the first place.  But since it used to feel like I had a shard of glass trapped inside my abdomen, I’m very grateful for every bit of pain chipped away from it.  The fatigue and muscle/tendon/anything-but-my-flank pains have all gotten steadily worse over the past five years.

The Fog Rolls In

The Fog Rolls In

My life has become smaller and quieter each year in response to the unreasonable demands of my body, only to have it ask for even more.  To a degree, it’s generally agreed that staying as active as possible is best; that “if you don’t use it, you lose it.”  This is tempered with one of the few things known with absolute certainty about ME: if you continually push yourself past what you can handle, you WILL get worse.  And it can get much, much worse than what I experience.

The UK documentary Voices From The Shadows paints an uncomfortably vivid picture of how bad ME can really get.  It shows people completely bed-bound, in constant, wracking pain, despite morphine drips, eyes continually covered as they are unable to endure even sunlight filtered through curtains.  Ears always protected with earplugs because they are so sensitive to sound.  From my end of things, going to the grocery store is only barely tolerable.  All the light and noise, oh the cacophony of noise… people talking, carts wheeling, plastic crinkling, children crying, music playing, announcements made… I genuinely dread the necessary trip each week.  And if I feel that way about it when my case of ME is one of the mildest diagnosable forms, I can hardly imagine the miserable existence the poor souls with severe ME endure.

Unjust

Unjust

I don’t want to have to know what severe ME feels like first-hand.  So I keep trying treatments and supplements.  I modify my bedtime, my sleep habits and try to rest as much as possible, without giving up any of the physical ability I still have.  I try to do gentle yoga and do more walking, which I can also use as time to scout locations.  My family and friends all know that any plans made are subject to the whims of my body and I may have to cancel at the last minute.  Very, very thankfully, they have all been extremely understanding and supportive.  It’s a hard enough battle to fight your body every day; I am sorry for those who also have to fight with their loved ones too.

People not understanding is at the core of our problems.  The medical community that doesn’t understand what our disease is or how to help us.  The public, who have been led to believe our disease is not valid.  And we ourselves who are trapped in these confusing, maddening bodies that seem to be actively working against us.

Breakable

Breakable

Luckily, I do believe the tide is finally starting to turn.  More and more noise is being made about ME, and we are starting to get even a little bit of recognition and validation.  More research is being dedicated to finding out what’s really going on in our bodies.  I try to maintain a balance between being open to changes coming and breakthroughs being made without actually hoping for them.  The disappointment is too great when they don’t pan out.

Through it all, the highs and lows, the dinners I can attend and the ones I have to stay home from, the times I weep from pain and frustration and the days I walk easily through meadows, I have my art.  I’m sure you’ve all heard me talk about my Enchanted Sleep series, photos from which are scattered through this post, and how I use my photos to portray what living with ME is like.  Art has helped me keep my sanity through these last five years.  It’s something I can do, not just in a metaphoric sense and raising awareness, but it’s physically something I can do.  Walking through the woods scouting locations is good for me, body and soul.  I can still edit even when I need to lay down (which is frequent) since I work on a laptop.  Sometimes muscle or tendon pain in my right arm or wrist will force me to stop for a few days or weeks, and those are always agitating times.  I want to be creating.  That is where my soul finds meaning and pleasure.

Spoon Theory

Spoon Theory

It’s been a rough five years.  But it’s also brought some incomparable joys to my life; my discovery of photography, for example.  And most importantly, Geoff.  Geoff who stuck by me when I became very ill after we’d only known each other for two months, and been dating one month.  Lesser men would have run.  He has supported and loved me every step on this tricky road, and is always there in the dark moments when I want to give up.  He gently pulls me up and sets my feet going again.  I am so incredibly grateful for him.

To be honest, I have been depressed with this anniversary looming ahead of me.  I have heard that if you don’t go into remission within the first five years, you’re never going to.  And while intellectually I realize that’s a pretty ridiculous, sweeping statement to make (how could anyone possibly know that when we don’t even know what it is we have?) it’s made this date feel even gloomier.  I am choosing to not believe that I will automatically never go into remission, simply because it hasn’t happened yet… but it’s also ok for me to feel sad.  It’s ok for me to mourn the things I have lost.  It’s ok for me to have bad days when I just cry and burrow under the covers all day.  It’s ok to be human and have emotions.

Mourning For Things Lost

Mourning For Things Lost

I work hard at my art, not only because it’s so deeply satisfying, but because it’s something I hope to make a career out of.  Means of employment get fewer and fewer for me every year, but I can do art.  It’s a way for me to earn money and contribute to my family’s income, things very important to my sense of identity.

I think this is going to be a good year for my art.  Not only with my recent good news, but other things are starting to happen too.  I think this is going to work.  But please feel free to support my work and pick up some blank greeting cards, limited edition prints or sign up for my online self-discovery-through-photography course.  🙂

Each journey through ME is different.  This is just my story.  I can only hope that by telling it, it adds another drop to the sea of change coming and will bring us a tiny bit closer to recognition and a cure.

Longing For Better Days

Longing For Better Days

I’ll just say a few words about my latest Enchanted Sleep photo, Vanity’s Murder.   My hair has always been quite fine and refused to grow any longer than my shoulders.  No matter what I did, how often I did or didn’t cut it, nothing changed that.  While it’s always annoyed me, since I would love to grow it romantically long, it was a fact of my life that it never would.  A few months ago, I thought my hair seemed a little shorter, but I dismissed the thought.  It kept nagging at the back of my mind though, even though I hadn’t gotten it cut in months.  Finally, I looked at a photo of me from about six months ago and I was shocked by the proof of how much shorter my hair was; nearly down to chin-length.

I went in to my doctor, since hair thinning and loss is a possible side effect of almost every medication I take, but he suspected it was a response to stress, not medication.  I finally made an appointment to see my fantastic hair guy (Hurley, at The Hair Pyrates).  He agreed that the loss was probably stress-related too, but importantly mentioned that the hair I’m seeing now first started growing four to five years ago… and I think we can all agree that I started undergoing a great deal of new stress five years ago.

After everything ME has taken from my life, all the things it’s made me give up, my hair just felt like the absolute last straw.  I had no idea how much of my feminine identity was tied into my hair until its existence felt threatened.

The good thing about stress-induced hair loss is that it’s usually pretty reversible, at least in theory.   At Hurley and my doctor’s suggestions, I started taking a hair, skin and nails supplement and I was startled by how quickly I saw a difference.  It still has a ways to go, but I’m so grateful that it is coming back.  Worrying about my hair may seem like a very superficial, frivolous thing, but it wasn’t to me.  It was about having one more thing taken away from me, it was about losing control over another big factor of how I appear to the world, and the things that contribute to my identity.  There is so much about ME that is outside of my control.  I am very thankful that this time, I could fight back, and actually win a little.  Let’s hope this is a sign of things to come.

Vanity's Murder

Vanity’s Murder

Vanity's Murder - detail

Vanity’s Murder – detail

Vanity's Murder

Vanity’s Murder – detail

Vanity's Murder

Vanity’s Murder – detail

Vanity's Murder

Vanity’s Murder – detail

Lastly, let me tell you about how you can win a signed and numbered limited-edition print of Vanity’s Murder!  The very kind people heading up the ME and You fundraiser were very receptive when I wrote them and offered to donate a print to their cause if it would help them.  And while I’m sure they have more than enough on their plates, they quickly came up with a way to do this!  Want a chance to win the print?  Follow the directions below!

  • Click on the ME and You button below and donate whatever amount you can through the big yellow “Donate” button on their site.
  • Leave a comment on this post saying that you donated and mention that you’re entering to win Vanity’s Murder, as several artists are doing similar giveaways.  Make sure that the name you leave in your comment matches your Paypal name!
  • Leave a message for the ME and You people during your Paypal  checkout, again stating that you’re entering to win Vanity’s Murder.
  • A winner will be randomly selected on June 6th and I will announce the winner here!

Click here to donate!!

That’s it!   This is such a win-win situation; the cause is so worthy and someone will get a beautiful print as well.  🙂  For anyone who missed it, the amazing people at ME and You are trying to raise funds to do further testing of a new drug that has shown real promise in helping to cure ME.  This is something we absolutely must study more, and hopefully, within a few years it will be approved and people all over the world will be able to try it.  And just maybe, some of them will go into total remission like some of the people who it’s been tested on.

Remission.  I can hardly imagine what that would feel like.  But I would love to find out.  If you can, please consider donating to this great cause.  And thank you very much!

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I’ve been talking a lot recently about the art side of my life here recently, which is perfectly appropriate; there’s nothing wrong with that.  But I intended for this blog to also touch on other parts of my life, and especially my constant struggle with my health.

I’ll be repeating myself a bit for older readers, but it’s been nearly five years since my body started dramatically falling to pieces.  There were many months before I had any idea what was happening at all, and really, I still don’t have the answers.  Eventually it was determined that I have myalgic encephalomyelitis, aka Chronic Fatigue Syndrome, and mystery chronic pain for which there is NO explanation, except that it may be related to the ME.  Most of you probably know all this already.

The quest over the last few years to find answers and, hopefully, cures or a least treatments, has been extremely frustrating and rarely fruitful.  I have seen nearly a dozen different specialists during this time, and of course I have done tremendous amounts of my own research and reading about anything that seemed like it even might be helpful.  The problem always boils down to the simple fact that no one knows what causes ME.  If you talk to 50 different doctors or ME sufferers, you will get 50 different opinions about what the cause is, an what treatments might help.  It seems I have tried nearly everything at this point, although I’m sure that if I did a little more digging I could learn about rarer, more exotic and expensive non-Western things to try.

In all the reading I’ve done, and in listening to my own body and seeing how it behaves and responds (or, often, doesn’t respond) to things, I’ve come to believe that ME is ultimately a neurological disease.  There are several articles which come to mind that support this idea, but one of the things that really helped convince me was the documentary Voices From The Shadows.  I will warn you, it is not a cheery piece.  You may find watching it quite upsetting, especially if one of your loved ones has ME.  But they talk quite a bit about the autopsies done of people who died of ME, and every single one of the showed brain abnormalities.  Inflammation of the central nervous system if I’m remembering right, but don’t quote me on that.  But it just seems to make sense that this really all starts somewhere in the brain from what I see in my body.

Because I believe ME is essentially a brain malfunction, I’ve been wanting to see a neurologist for quite a while, but without any more blatantly neurologic symptoms to convince my insurance, they wouldn’t approve a visits.  But for better or worse, I’ve been tripping a lot lately.  The first couple times you can write it off as just being clumsy or not paying attention, but then it started increasing.  As the tripping increased, I also began to feel more disoriented while I was driving; mostly over longer distances and on the freeway… it just felt like everything was hurtling at me so fast I was having trouble processing it all, which was a bit alarming.  Armed with those new symptoms, my insurance finally agreed to let me see a neurologist.

The first neurologist I was sent to refused to see me for very suspicious reasons that really, truly seemed to be based solely on me having ME.  Well, I wouldn’t be the first ME patient to be discriminated against, and if the doctor was going to be such an asshole about it, I’m glad I didn’t even have to have an appointment with him.  The second one I was sent to was very different.  I loved him.  He not only believes in ME’s mere existence, but also believes that it is a physical and neurological disease.

But, as he told me in the kindest and most caring way, there was absolutely nothing he could do for me.  The only way he knows how to do any fighting against the disease is simply treating the symptoms, which he admits is woefully inadequate.  He did a neuro exam on me just to be 100% sure I don’t have MS, or a brain tumor, or anything else they might be able to actually treat, but I passed all the tests beautifully.  He made an interesting argument suggesting that fibromyalgia and ME are essentially the same thing, which was a new thought for me, and raised other interesting points and questions also.

His theory about what causes fibro and ME is that, essentially, our brains let in more stimulus than they ought to, and the amplify it even more.  Which would explain the completely disproportionate pain we feel, our sensitivity to light and noise and smell, and plain old visual stimulation.  Every time I go to the grocery store, I have to steel myself beforehand, because I know all the lights and people and noise and navigating through it all is going to suck.  Unless someone comes up with a more sound theory, I’m going to stick with this one.

The appointment was informative, the doctor was so caring and kind; he went out of his way to answer questions and took a lot of time with us.  He talked a lot about the problems fibro and ME people face with the medical community and public disbelieving us often.  It was a very valuable appoinment just for the sheer validation from the doctor.

But, oh, I had not realized how much I was hoping he would be able to help me until I knew he couldn’t.

I don’t think there are any other specialists left to see.  He was the last one on the list of anyone who even might have something to offer me.  He was also the one I was holding out the most hope for.  It felt like I’d finally reached the Wizard of Oz, and there was nothing in his black bag for me.  Truthfully, it was heartbreaking.

For most of this health journey, I’ve felt that I’ve been mostly on my own; that it’s up to me to find a cure for myself, and I feel that more than ever now.  The neurologist suggested that the medical community might have answers, and perhaps cures (or at least better treatments) within my lifetime, but that is a cold comfort right now.

This disease wears on you.  Bearing it for a day is something anyone could do; it’s the relentless suffering with no relief that breaks you.  Having only the vaguest, most nebulous hopes for it ever changing is a bitter, bitter pill.  The last few days have been very depressing.

I have not given up.  I will not give up.  But having what seemed like the best chance of change and improvement disappoint so will require some time to bounce back from.  For the time being, I need to metaphorically retreat and let my wounds heal before I can start battling again.  I need time to shed some tears and allow myself to grieve the lost hope.

And whenever I write posts like this, I always want to say that I know it can be worse.  I do not think that the things in my life are the worst things that have happened in anyone’s life ever.  I know that.  But I also know that other peoples’ pain and suffering doesn’t invalidate mine, and refusing to acknowledge them for being as painful as they are will do me no good.  You can’t heal from something you deny.

So thank you all for listening to me, and special thanks to those who have been sending well wishes and prayers.  Extra thanks to my friends and family for listening to me so patiently and lovingly.  This too will pass.  It will take time, and it may suck for a while, but it will pass.

They Lived To See The Dawn - This photo feels appropriate for this post; a girl and her dog who have made it through some very dark times, but made it out ok.

They Lived To See The Dawn – This photo feels appropriate for this post; a girl and her dog who have made it through some very dark times, but made it out ok.

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