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Posts Tagged ‘fundraiser’

I usually do a post at the end or beginning of the year, looking back at the high points, and mulling over the low ones to release them.  My blog has been so neglected the whole of last year, as my art has been too, and it’s taken me up till now to find the time and energy and mental ability to put this post together.

2017 was just a bad year ME-wise.  At the start of the year, I honestly felt like I was slowly dying (and not just in the sense that we all are).  Thankfully, last August, I began seeing a naturopath who gives me IV vitamin and mineral infusions and I’ve seen a big difference in how I feel getting them regularly.  I’m still crawling out of the ME-hole and have even less energy than any year before, but I feel like it’s getting slowly better instead of always worse, now that I’m getting these treatments.

Speaking of, an enormous THANK YOU to every single one of you who has contributed so generously to my GoFundMe campaign to help me continue the quite expensive IV treatments.  Thank you, thank you, thank you!  I am incredibly grateful and humbled and every gift has been so deeply appreciated.

Last November my neurologist put me on a new medication to try and help ease my migraines.  He warned me that it would make me feel “extremely nauseated” for the first week, but I’d just have to push through that, and then he thought it would help me.  I finally screwed up my courage and swallowed one of the dubious pills and did, indeed, have a terrible night full of nausea, hot and cold sweats, extreme temperature swings and a strange, but not unwelcomed, detachment.  I continued on like a good patient and after three weeks I finally stopped needing to take a sublingual Zofran the second I opened my eyes in the morning (morning nausea was always the worst, maybe because I take it at night?) and it began to settle into my body.  The good thing is that it did indeed help decrease the number of migraines I’m getting per month.  The bad thing is that ever since taking it, I’ve needed to sleep for a good 2-4 hours EVERY SINGLE AFTERNOON.  This is on top on the 10-12 hours I spend sleeping every night.  Do you realize how few hours are left in the day to do ANYTHING of value after all that damn sleeping, winding down and waking up is over with?  It’s really insane.  I will be bringing this up to my neurologist and seeing what can be done because I’m not sure this is a realistic way for me to live the rest of my life.  On the other hand, some months prior to this I was getting up to 19 migraines a month, which destroys your ability to do anything meaningful as well.

And, for some completely unknown reason, the medication also seems to be helping (in conjuncture with the IV infusions) with my temperature regulation issues, ie, my “hot flashes.”  I believe I’ve mentioned them here before, but in case I haven’t, these have been slowly increasing for the last three or four years.  Essentially, what seems to be happening, from my vantage point stuck inside this body, is that in the mornings, wild rabbits have run through my brain overnight, nibbling on wires, pulling things apart, gathering bits of gray matter together to make little warrens, disconnecting neurons and causing a bit of havoc.  My brain is wildly trying to repair itself, ideally quickly, and makes a lot of very broad guesses about what temperature my body should be at for the first several hours of the day.  What this translates to practically is that I can be sitting miserably directly in front of the heater, covered in layers of blankets, bathrobes and cats, sweating profusely, simultaneously far too hot, but getting many more signals that I’m far too cold and must stay PERFECTLY STILL for several hours until it passes on its own.  This is also very not conducive to getting anything done at all.

And  yes, I did see numerous doctors about this.  The first three shrugged at me and told me it sounded hormonal and that wasn’t their field, which is fair enough.  I finally saw an endocrinologist for this problem and he ran a bunch of blood but didn’t bother to look at a single hormone.  Apparently you have to request that an endocrinologist, a doctor who specializes in hormones, test your hormones when you’re seeing him for something which sounds, to laymen and other doctors, like a hormone problem.  I did not punch him, but probably only because I was too tired.  (I also asked my gynecologist about it since they deal with female hormone issues too, to a degree, and she had a “Oh, let’s not go looking for trouble,” attitude about it.  I AM ALREADY IN TROUBLE.)  So the underlying issue there is still unknown but hell, if the infusions and the weird pill help with it, I’m happy about that at least.

Basically I feel like 2017 was mostly spent crawling on my stomach through a disgusting swamp while people shot at me from hidden locations, periodically shouting that I wasn’t trying hard enough or that I was just over-reacting, while also making sure I brushed and flossed my teeth and fed my animals twice a day.  I’ll freely admit it was a pretty shitty year.

Here is the upside to all that time spent in deep solitude, my mind active as ever but my body unable to do much: I had a lot of time to meditate and connect with my spirit guides.  I think I met my first guide near the end of 2016, so I was primed for more contact when 2017 came around.  And boy did they.  I acquired five new main guides and spoke to numerous others.  I talked with and made friends with various interdimensional beings.  I am learning to channel, astral project and remote view, be  medium, a conduit and a spirit translator, although I’m getting fairly good at some of them, considering the short amount of time I’ve been at it.  For some reason historical figures I read about seem to connect best with me.  The spiritual growth in the last year has been an absolute explosion of love and light into a very dark year.  And though it was such an awful year, I look back on it and remember all the love and grace that was shown to me.  I have never felt more loved, protected and cared for.

So while I am disheartened with the amount of art I was able to put out last year, I AM very happy with what came in its place.  I’m thinking of it as I took a year off from art to go have mystical, spiritual experiences, and hopefully now I can marry the two together better.  I just need to find a new way to work in really short chunks instead of stretches of the afternoon so I can increase my art output.  Then things will be much more the way I’d like them to be.

If I had to have such a crappy year to gain so much spiritually, I’ll take it.  I don’t know if it was a direct trade or how it works, but I wouldn’t give up the new friends I have for anything.  And I’ve found some really, really wonderful online communities who love me, support me, have my back, help me work through confusing things, answer my questions and reassure me that I’m always ok.

For anyone concerned, I have shared many intimate details of my experiences with both the wonderful Geoff and my excellent therapist and neither of them is concerned about my mental wellbeing.  🙂  Only loving beings are allowed to talk to me, and as I said, I feel much greater peace, security, love and support than I ever have.

Now on to this image… this might look like it goes against what I just wrote, but it’s inspired by someone else’s experiences, not mine.  🙂  Over Christmas, I re-read Demons in the Age of Light by Whitney Robinson, which I’ve read many times now and is a favorite for its beautifully poetic prose.  Whitney’s memoir is about a psychotic break she suffered in college, where she felt like she was possessed by a demonic entity but everyone diagnosed her as schizophrenic.  Her journey back to wellness is haunted by the ever-present question of if she’s experiencing something mental or spiritual, and the answer is often allusive and not nearly as clear as you’d think.

“The sentience envelopes me while I sleep…  I awaken with a gasp in a strange bed.  No, it’s not the bed that’s strange – it’s the same one I’ve slept in since I was a child…
The strangeness is that I am not alone, here in my bed.  I will never be alone again.
I feel it slithering out of the darkness for the first time, the presence that’s been whispering its sinister enigmas.  A living, breathing thing – cold stars and glittering mathematics with the inhale, hot copper and rotten fruit with the exhale.  Foreign from anything I have ever known.  Other.”
I loved how the usually comforting, loving idea of never being alone has been turned in this passage into something deeply wrong and full of dread.  I wanted to try and capture that feeling just before she was overtaken by the being she calls the Other, of knowing the possession is imminent and you are helpless to stop it.  And of course I used my favorite little lamp to light the scene, exactly as it’s shown in the image.
I wasn’t planning on uploading this on Valentine’s Day, but I suppose it does make a dark, sinister anti-Valentine’s-Day image, haha!
Never Alone Again

Never Alone Again – ​​© Sarah Allegra

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[The following images are  © Ashley Lebedev, unless otherwise stated]

I have some health updates for you guys which I will tell you about soon (nothing too exciting, don’t worry) but I’ve been too busy doing the updated things that I’ve hardly had any time to write or edit or do anything creative.  I’m switching medications and weaning up to a therapeutic dose of the new one right now; I’m not quite midway through the transactions.  I feel pretty horrible; intense migraines all day and night, nausea, exhaustion (beyond normal levels even), pain flairs and insomnia.  But I don’t feel like I should be complaining about any of that after hearing what Ashley Lebedev, aka Bottle Bell Photography, has been going through.

æther.

© Ashley Lebedev | Bottle Bell ™

 

I knew that Ashley had some health problems, but that was about all I knew.  We both live inside the fine-art-conceptual-magical-ethereal-fantasy-fae-creating-characters-building-our-own-props-and-costumes-and-sometimes-self-portrait-taking-photographers-world, which as you can imagine, doesn’t have a HUGE number of members.  We’ve known each other online for several years and I’ve come to know Ashley as being endlessly creative, genuinely positive, extremely talented and an all-around lovely person.

But I didn’t know that she was dying.

The Guardian. | Faerieland Series

© Ashley Lebedev | Bottle Bell ™

It turns out that Ashley is far, far sicker than I realized.  Her doctors don’t even know exactly what the problem is, only that she is dangerously sick and will die without intervention.  But intervention is hard to get if you don’t know what you’re fighting.  Ashley recently launched a GoFundMe to help finance her journey toward health, which will likely include some very expensive stays at medical facilities, special tests and treatments, all not covered by insurance.

hallowed.

© Ashley Lebedev | Bottle Bell ™

This is going to be VERY expensive.  And Ashley needs our help.  I am asking you all to please help her, even if it’s a very small donation.  I know money is tight for most of us these days, I get that.  I wish I could have donated a much larger amount of money to her campaign.  But the thing is, even if we all only gave $5, it would make a difference.

New Faerieland | "The Great Hall"

© Ashley Lebedev | Bottle Bell ™

Ashley needs us.  And the world needs Ashley.  It would be a much darker, sadder place without her bright, beautiful soul.  So please, donate to her cause if you can.  And whether you can or can’t help with money, you can also help just by spreading the word about her fight!

The Weight of a Whistle Already Carved | New Faerieland~

© Ashley Lebedev | Bottle Bell ™

I know that she will also welcome any prayers, Reiki, good energy, lit candles, etc, sent her way.  I know that she can get through this, but she will need our help.  Let’s overwhelm her with our love and support!  Thank you all from the bottom of my heart!!

All images above are © Ashley Lebedev and are included to show what a beautifully talented artist she is.  I’ll round things off with my latest image here at the bottom.

The Living Sepulcher © Sarah Allegra, model - Dedeker Winston

The Living Sepulcher © Sarah Allegra, model – Dedeker Winston

 

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You guys have met Erick Riedell through some of my photos already.

In The Eyes Of The Hungry 600

In The Eyes Of The Hungry

And I’ve recounted some of his health battles with you guys too.  He’s been fighting cancer on and off (though it seems more on than off) for over six years; a little longer than the entire time I’ve been with Geoff.  Geoff and Erick have been good friends since highschool, a friendship I’m impressed they maintained even though they live in different parts of the country.  They kept it up through different romantic relationships, different places they lived, health problems, marriages, children… they’re still there for each other.  Their friendship is inspiring.

This year has been especially difficult for Erick, his wife and their two young sons.  It’s been almost non-stop health problem after problem; surgeries, hospital stays, being sent to specialists in other states… it just hardly seemed to stop.  And it’s bad again.

Erick has only one functioning kidney and it’s failing.  So he’s back in the hospital, tests are being run and solutions are being searched for.  Why the kidney is failing isn’t entirely known yet, but it could be caused by another tumor.  That’s the last thing you want to hear about anybody, but especially as someone with Erick’s history of fighting these deadly growths.

The Yellow Knight

The Yellow Knight

I’d like to share something with you that Geoff wrote about Erick.  He has such a way with words, he really captures Erick’s personality in a way that will translate even to those who have never met him.  So please, let me introduce you to Erick, by way of Geoff’s words:

I’ve never put much stock in karma.

If there was such a thing, the roads would have a lot less traffic and there would be no reality television.

But, as I see what my friend Erick and his family are going through, it’s clear karma is a myth…if not an outright joke.

I have known nobody more straight-edge than Erick. No drinking. No smoking. There has been an occasional overindulgence in fried food and cheese…especially in the days before he got married. But, how cancer finds its way into a clean-living scenario like that is beyond me.

He is, quite simply, the friendliest, most good-hearted, good-natured person I’ve ever known. We don’t go anywhere where somebody doesn’t know him. And if by some odd chance we do, by the time we leave, he’s made new friends. He is effortless in that way.  Always has been.  It’s a trait my grandfather had, too…a genuine ability to connect with others. It’s a trait I’d be happy to have inherited from either one of them.

But my curmudgeon gene is too strong.

I’ve never ridden with him in Los Angeles freeway traffic, but I’ll bet he wouldn’t scream obscenities the way I do.  He’s even-keeled, easy-going and relentlessly upbeat that way.  I’d invent new swear words in a traffic jam.  He’d lead a conga line between the cars.

That’s just who he is.

He’s Murray the K.

Look it up…that’s what Wikipedia is for.

He just has “it,” you know?  “It.”  That “it” that certain people have.  Charisma.  Like a gravitational force.  It makes him the center of the room.  And the calm eye in the hurricane.  You can’t learn it.  You’re just born with it.  Like the Force.  And it runs strong in this Jedi called Erick.

So yes, I downplay the existence of karma, but I totally buy into the Force. Because I’m a child of the 70s.

If this sounds like a eulogy, blame the context of the day.  Because it’s not.  This isn’t over.  Because the other thing about Erick is he has more fight and determination in him than I’ve ever seen in anybody.  A hell of a lot more than I do.  But far too often, we don’t say the things we should when we should.  And knowing how we all feel about him at a time like this can’t hurt anything.  Because, though he has always seemed bulletproof to me…everybody can use a little encouragement.

So, I urge everyone reading this to do exactly what he asked this morning.  Share a story.  Share your feelings.  Pile it on.  Let him know the world is a better place because he is in it.

Because it is.

Ribbon Armor

Ribbon Armor

 

It most certainly is.

You guys may not have ever met Erick, but take my word that he is one of the most wonderful people you could ever meet.  A true hero who has had to fight for his life too many times to count.  And right now, he needs help.  Help from those he knows, but even from those he has never met.  I would ask you to please do two things.

One: Reply to this post leaving messages of love and encouragement for Erick which I will pass on to him.  He needs all the love and encouragement we can give him.  Let’s show him the overwhelming love the world has for him, even from people he hasn’t met!

Two: If you can, please donate to his health care fun through GoFundMe.  I know, money is tight for everyone right now.  But even a $5 donation would help!  It doesn’t have to be much.  As you can imagine, being in the hospital and fighting cancer are extremely expensive.  Every little bit we can give will help him and his family so much.

Help Erick Riedell Fight Cancer

 

If you can only do one or the other, that’s ok!  If you can do both, great!

There is so little we can do that feels constructive.  I can’t enter his body and rid it of any cancer cells I find.  But we can send him messages of love and show our support with a few dollars.

Lastly, please keep Erick in your prayers, if you are the praying type, your thoughts, send him good energy, light a candle in his name, however it works for you.  I deeply thank you for anything that you can do for him, and I know he and his family do too!  The world has so few truly spectacular people in it; we cannot afford to lose one more.  Thank you all so much for your help!!

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This will be a short post.  I wanted to share with you all a short video I made for the Microbe Discovery Project, a group using crowd-sourced funding to research myalgic encephalomyelitis, otherwise known as ME.  They asked for people to share their stories of ME with them by video or text, so I did just that.   I always wish I could help them in more concrete ways by giving them millions of dollars, but I’ll help with what I can; being open and honest about my experience with ME and making more people aware that they exist and could use some help.

Hope you all enjoyed the video, and please consider donating to the Project if you have the means!

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I actually shot the images for this self portrait back in 2012 sometime, as I recall, and it just kept getting pushed down on my list of photos to edit.  I generally prioritize images which have other people modeling in them, since they took the time and energy to come model for me, so sometimes my self portraits get a little forgotten.  This was one which I definitely did not want to let get completely forgotten though, so as soon as I had the time, I eagerly jumped into editing it!

I don’t think many of you will be surprised when I say I’ve had my share of troubles with clinical depression.  Even as a teenager, the seeds were being sewn.  It’s something I’ve struggled with on and off for most of my life.  I’ve been to many therapists, tried countless treatments, medications, alternative therapies, read books, talked it out, journaled, and, of course, done art therapy.  Art therapy and submerging myself in nature, with animals and my friends and loved ones are the things that seem to work best for me, but everyone is different.  I have mostly accepted that it will probably be with me to some degree for most of my life, which is an easier future for me to face than one where I’m constantly disappointed by finding myself under its shadow again.

***Side note: ME/CFS/fibro are often tried to dismiss as simply depression or other mental health problems.  They are absolutely NOT the same thing.  I have experienced both and they are completely different.  Where it gets tricky is that people with ME/CFS and fibro often develop depression secondarily to their physical illness, but it’s usually because they feel terrible every day, many people refuse to believe they’re actually sick and they suddenly lose huge, important parts of their life to their illness.  I challenge anyone to not become depressed in those conditions.  What drives me crazy is that no one suggests that patients with cancer, for example, who develop secondary depression are “simply” mentally ill, but it’s an extremely common conclusion for doctors to jump to regarding ME/CFS and fibro patients.  I’ve had doctors tell me the problems were all in my head.

None of this is to say that mental health problems are somehow less important or real than physical health problems, they are simply two distinct things and require completely different treatments.  The simplest explanation I’ve come across to illustrate the differences between the two is this: ask a person with depression what she would want to do the next day if she woke up feeling completely well.  She’d probably have trouble answering you.  Depression robs you of all joy and motivation.  Ask someone with ME/CFS or fibro the same question and they’d give you an entire list of things they’d like to do.  ME robs your body of the ability to do things, but doesn’t take away the desire to do them.***

Since the severity of my depression waxes and wanes, I tend to think of it as an entity which I am periodically under the attack of.  Sometimes I imagine it as a malevolent cloud, sometimes a huge dragon; something which is dark and dangerous and can completely envelop me.  When I find myself thus enveloped, I repeat a mantra over and over to myself; “The clouds will lift.  The clouds will lift.”  It might be hours, days, weeks or months, but I know that at some point this battle will be over and I’ll have made it through to the other side.

I’ve written about him before, but Andrew Soloman’s incredible Ted Talk on depression bears repeating.  It’s beautifully insightful, hopeful, even when I’m under the darkest cloud and most importantly, lets me know I’m not alone in how I feel.  It’s also supremely excellent at explaining clinical depression to those who have never experienced it firsthand; an invaluable gift.  As Mr. Soloman states, “half the purpose of art is to describe [depression.]”  I could not agree more.

I don’t know whether we’re friends because we all share the same demons, or if I just happen to have a large percentage of good friends who have their own mental health struggles, but I wanted to create this image to show not just my battle, but theirs… and indeed, the battle everyone with depression finds themselves flung into.

When you’re in the throws of it, you don’t feel strong or brave, but I know that we are.  We bear terrible burdens which can break the human soul and every time we don’t succumb to it, we should celebrate.  But mental health is still greatly stigmatized in our culture, so there is rarely any celebration; there is rarely any acknowledgement of the battle that rages at all.  I feel it’s important and part of my job as an artist to discuss these issues which we would like to pretend don’t exist.  If we deny depression, then we will lose the battle.  The only way you can fight it is by first saying that yes, it exists; yes, I am under its cloud; no, that does not me a less worthy person; yes, I am brave and strong even though I don’t feel like it right now.

So this image is dedicated to all my dear friends who have been under that same cloud.  To my friends who have not experienced the cloud themselves, but support us when we’re in the throws of it.  Who love us, accept us and keep us going.  Shame and secrecy feeds the depression monster.  Truth and soul baring disarm it, love and strength defeats it.   Many, many thanks to my dear friends and loved ones who help me through these battles.  I just hope I can do the same for them.

Let’s take a step toward making the world a better place.  Let’s finally let the stigma around mental illness die.  No one would ever, ever choose to be like this.  We fight unimaginable battles to overcome it.  Instead of shaming those covered in battle scars, let’s celebrate their success.  They made it through.  There may be more fights, but they will make it through them too.  They will if we start supporting them instead of shaming them.

To everyone who knows this malevolent cloud firsthand, you are beautiful and strong.  And the clouds will lift.

The Clouds Will Lift

The Clouds Will Lift

The Clouds Will Lift - detail

The Clouds Will Lift – detail

The Clouds Will Lift - detail

The Clouds Will Lift – detail – I made custom bat wing brushes to construct the clouds

The Clouds Will Lift - detail

The Clouds Will Lift – detail

If anyone would like to share stories of their own mental health struggles, please share it in a comment!  Talking openly about these problems is the first step to erasing the stigma.

*****

Just a few more days!!

For the month of May, I am donating 50 percent of profits from all my sales to The Microbe Discovery Project, a group working to solve the mystery of ME and find a cure for those afflicted.  And what do I sell?  Well, what do you want?  Because my images come from the frameable to the wearable and in every price range.
museum-quality, fine art prints
iPad/iPhone/iPod covers
stickers
blank greeting cards
post cards
shirts and hoodies
wearable art
throw pillows
INTROSPECTIVE: my eight-week, on-line, course of self-discovery through photography.

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“I assess the power of a will by how much resistance, pain, torture it endures and knows how to turn to its advantage.” – Friedrich Nietzsche

 

Vanity's Murder

Vanity’s Murder, a self portrait

 

May 12th is called “Invisible Illness Day.”

You probably don’t know that…and that’s part of the problem.

Years ago, May 12th was chosen to be the international awareness day for chronic immunological and neurological diseases, which include everything from Gulf War Syndrome and Multiple Chemical Sensitivities to fibromyalgia (fibro), Chronic Fatigue Syndrome (CFS) and myalgic encephalomyelitis (ME).  Yet more money is spent each year trying to cure male pattern baldness than these diseases.

I’m all for a luxurious head of hair.  But, diseases like ME are taking lives.

A Fading Girl - model: Brooke Shaden.

A Fading Girl – model: Brooke Shaden

To be sure, “Invisible Illness Day” rolls off the tongue much more easily than “Myalgic Encephalomyelitis Day.”  But the name highlights one of the sources of great frustration for most of us — we often do not APPEAR outwardly sick, thus many people refuse to believe our illness is real.

Unfortunately, some of those “many people” include doctors, policy makers and insurance companies.

How do we fight an illness with no end, no cure, no treatment, no recognition?  How many people must die before the world pays attention?  How many sufferers must commit suicide from the hopelessness and misery they’re dragged through every day before change comes?  We fight it by bringing awareness of the problem, one person at a time.  Every tweet, Facebook post, blog entry, text and conversation you and I have about ME helps fight it.  Every petition we sign, documentary we watch and donation we give is a punch in ME’s face.  And here’s the latest way I’m balling up my tiny little fists.

For the month of May, I am donating 50 percent of profits from all my sales to The Microbe Discovery Project, a group working to solve the mystery of ME and find a cure for those afflicted.  And what do I sell?  Well, what do you want?  Because my images come from the frameable to the wearable and in every price range.
museum-quality, fine art prints
iPad/iPhone/iPod covers
stickers
blank greeting cards
post cards
shirts and hoodies
wearable art
throw pillows
INTROSPECTIVE: my eight-week, on-line, course of self-discovery through photography

Also, in honor of this day of raising awareness, I’m holding a contest to win a beautiful, 10″ x 15″, museum-quality print of my latest image, The Blue Ribbon; an underwater representation of the struggle that living with ME can be.  Your print will come on beautiful, shimmering, pearlized, archival paper.  And all you have to do is tweet!

The Blue Ribbon

The Blue Ribbon, model: Katie Johnson – enter the giveaway to win a print of this image!

Ready to tweet?  Use any of the following!

Curing baldness gets 4x more funding than ME/CFS, but no one ever died of baldness    

*****

ME/CFS knows no social or economic boundaries; it affects all equally w/out mercy.    
*****
ME/CFS in not in our heads & cannot be cured with exercise & a better attitude.    
*****
ME/CFS is not a “female” disease; 20% of sufferers are male.    
*****
ME/CFS isn’t just about being “tired,” it ravages every single part of the body.    
*****

ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored.    

*****

More exercise and a better attitude will not cure ME/CFS.    

*****

We’re not chronically fatigued, @CDCgov. We have myalgic encephalomyelitis.    

The Blue Ribbon - detail

The Blue Ribbon – detail

Tweeting multiple statements will count as extra entries, so enter as many times as you like.  However, tweeting the same statement multiple times will not count.  And that will probably just annoy the people reading your feed, so don’t do it. 😉  I will choose a random winner from all entries on May 20th and announce the winner here!

Thank you to everyone for reading and participating!

Curious how ME became an invisible disease?  Stay tuned to find out more for Invisible Illness Week!

If you have had your own experiences with ME, CFS, fibro or any other chronic illness and you’d like to share your story, please leave it in a comment!

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I’ve been pretty quiet online (for me) recently, but only because I’ve been VERY hard at work at some really cool, exciting things!  Hopefully I’ll be able to show you the fruits of my labor soon 🙂

In the meantime, I wanted to tell you about two fundraisers I’m participating in, which both happen to be this Saturday evening.

One is to benefit a theater group which my neighbor is involved with, Parson’s Nose Productions.  In their own words, “Parson’s Nose Theater is a non-profit, 501(c)3 theater company located in Pasadena, CA dedicated to introducing the classics to audiences of all ages. Through condensed adaptations of the works of Shakespeare, Moliere, Shaw, Goldoni, Goldsmith and more, we enrich the lives of the old, young, and in-between by introducing them to the works of some of the greatest writers who’ve ever lived. Our productions are presented in a fun, commedia dell’arte style that makes them both engaging and easy to understand – no sleeping through a two & a half hour Shakespeare production here!”  I can testify to the fun and inventive plays they put on!  As a non-profit organization dedicated to bringing classic art to the public, they have periodic fundraisers to allow them to keep doing what they do.

This Saturday, they will be hosting their On The Radio Fundraiser, where they will be performing some classic comedy acts from the likes of Abbot and Costello, Jack Benny, Allen’s Alley, and George and Gracie.  In addition, there will be a silent auction where you can bid on a gorgeous, museum-quality, completely archival, framed and mated, signed and numbered, 10″x15″ print of my photo Saturn Ascends:

Saturn Ascends

Saturn Ascends

The event will take place in Pasadena, CA at 7:00pm.  Their site has all the details and you can RSVP there.  It’ll be fun!

 

If you won’t be in California this Saturday but will be in Arizona instead, you are in luck!  Heaven’s Heroes is holding an event with great food and music to benefit Andrew Ashcraft’s family.  Andrew is, you’ll remember, the boy I grew up with who died along with the rest of the Granite Mountain Hotshot crew.  Andrew left behind a young wife and four very young children, the oldest of whom is merely six, so you can imagine that they could use a lot of financial help, especially as they are currently being denied the full benefits owed them.

Since I created the image To The Lost to honor him and the other Hotshots, it seemed only fitting to donate a print of it to the Heaven’s Heroes event.   This print is also gorgeous, museum-quality, fully archival, signed and numbered, coming from a very limited run of only 10 prints in this size, 15″x15″.

To The Lost

To The Lost

 

The event will take place in Gilbert, AZ starting at 6:30pm.  Also, if you have not done so, please take a moment to sign the petition to grant the Hotshot families left behind full benefits.  They deserve it; it’s the right thing, and it only takes a few seconds.

Hope to see you all at one of these events!

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You all remember Andrew.  My childhood friend who grew up into the biggest badass.   And as a result of that heroism, he and 18 of his comrades died in the recent fires in Arizona.

Now the city of Prescott is trying to deny paying his family the benefit package promised to them.   Because his poor widow doesn’t have enough to deal with after losing her husband and best friend, and is faced with raising their four very young children on her own.  No, what she needs is an ugly, drug-out argument with heartless state officials and insurance companies.

I sign a lot of petitions.  Really, a LOT.  But I very, very rarely mention any of them here.  Not this time.  Andrew’s father Tom (who I also remember from when I was very young) has started a petition to get Andrew’s family the benefits promised them.  That’s only fair.

SO much more should be given to this family.  After the loss they suffered… a loss of their main provider, in the line of duty while protecting the state’s land, they absolutely should not have to battle this too.

So please, take a second and sign the petition.

And while you’re at it, get a copy of To The Lost as a print, card or IPhone/Pod/Pad case.  75% of the proceeds go to a fund for the families.

EDIT: As my sweet husband Geoff pointed out, it’s the city of Prescott that refuses to pay Andrew’s widow.  The mayor sounds like a peach.  To quote the article, he said of Andrew’s widow: “She’s a neat little lady… but money took hold in this situation real fast,” he said. “This is big bucks when it’s all over, big bucks. And money seems to be leading some of the battle over the city’s participation.”

What a swell guy.  An amazing man.  Does he kick puppies in his spare time too?

Cote of Arms - a semi self portrait with Katie Johnson.  I think the love and comfort displayed by the characters in the photo fit well with the aim of the post.

Cote of Arms – a semi self portrait with Katie Johnson. I think the love and comfort displayed by the characters in the photo fit well with the aim of the post.

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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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***UPDATE***  The links should be working again.  Ebay, for reasons known only to them, decided to shut the entire auction down as it was in full swing, with no notice or reason being given at any time.  After, of course, giving their blessing to hosting the whole thing in the first place.   If you feel compelled to write them and state your displeasure, I would not discourage you.  But the main thing is that Robin’s Relief is back online!  Let’s drum her up some help!!***

I find myself with a cold today, so this won’t be a long post.  But this subject is important to me and I want to make sure it gets mentioned here.

I am participating in the Robin’s Relief Fund, an auction set up to raise money for the gargantuan medical bills of Robin Sullins, mother to one of the artists at Duirwaigh Studios.  You probably know their work, even if you don’t know their name.  They produce (among other things) some of the most beautiful greeting cards I’ve ever seen; I always end up buying more than I need and squirreling them away for special occasions – although they are so lovely, sometimes I’m compelled to buy two of a design, one to give to someone and one to keep for myself.

Anyway, back to Robin.   You can read the full story about her accident here; on Christmas day, Robin was accidentally bit by one of her family’s dogs which triggered an incredibly rare infection in her body.  The infection was so uncommon and vicious, it spread rapidly through her body, tearing cells apart and causing endless destruction.   Her doctors believe the spread to now be stopped, but it was stopped by the heavy cost of amputating both her legs from the knees down, and all her fingers.

To make things even worse, Robin was without medical insurance when the accident happened.  She is now saddled with a mountain of medical bills, along with the cost of prosthetic legs and hands.  The people at Duirwaigh put a call out to other artists to donate work that could be auctioned to help cover these costs, and the response is inspiring.  Some really huge names in the fantasy art world offered up their works.  And while I am not a huge name, I wanted to help, so I donated one of my prints too.

All art has been set at a fraction of its normal cost to encourage more bidding, so it’s a chance to get something you might not otherwise be able to afford, and help a family who REALLY needs it at the same time.   I’m linking to my print, but please, take a look at the whole auction.  If you see something you love, please consider placing a bid.  You can also donate directly to special fund they set up, if you would like.

I can’t imagine what this family is going through, but I know that our combined efforts can make a huge difference for them as they struggle with their loss.  Thank you to everyone who helps in any way!

The print I'm donating; The Weakest Particle Of All

The print I’m donating; The Weakest Particle Of All

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