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Posts Tagged ‘disease’

As we approach the Holiday Season, I’m dedicating the next few days to promoting my artwork-related items, which would make wonderful gifts for anyone!  Whether you’re looking for straight artwork you can hang on the walls, some inexpensive stocking-stuffer/Secret Santa gifts, or something with a more practical application, I’ve got you covered 🙂

Today I’m focusing on items which can be found in my Red Bubble shop!  I talked about this some in my last post, but I can go into it a little more in its own post.  What do I sell in my Red Bubble shop?  A LOT.  All of the following can be found with my artwork on it!

I started buying Red Bubble calendars before I ever started selling any of my own and I’ve been constantly impressed with the incredibly high quality year after year!  The paper is thick and lush, the inks print vividly and the design maximizes the room for artwork!  I truly love having one of these in my house each year (and I get frequent requests for these as gifts for friends and family).  It’s such a simple way to get 12 unique pieces of art to hang on your wall, adding beauty and magic every single day and it comes at a great price!

My 2015 Calendar!

My 2015 Calendar!

And if that’s not enough for you, you can also shop by series!  Want to see everything DreamWorld-relatedEnchanted Sleep, for those who chronic illness has touched?  Orphans of the Mother Road for vintage-lovers?  Glass Walls for the animal-lovers in your life?  Pop Culture-inspired?  How about Music- and Literary-Inspired images?  Or are you a fan of a good old self portrait?

I have never had any issues with any of the items I’ve ordered from them myself, nor have I heard anything negative from others.  Red Bubble really makes buying fun and easy!  You can visit one site and take care of many people on your to-buy-for list and get your shopping done quickly!  And if you’re looking for any image in particular on any item in particular, just let me know!  I can very likely accommodate any requests!

As always, I sincerely thank anyone who helps support independent artists with their buying power!  You guys help make what I do possible 🙂  Keep an eye on the blog for the next couple days as we approach Black Friday and Cyber Saturday/Monday!  New items will be showcased and some really fantastic savings will be revealed as well!

Happy shopping to all!

Lady Death, by Sarah Allegra

Lady Death, by Sarah Allegra

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Well.  You may remember from my last post that I was talking about taking a bit of a vacation because I’ve been almost constantly sick for over two months – sick on top of any fibro or ME stuff,  I mean.  Ironically, the day I woke up and posted that, I quickly realized I was coming down with yet another cold which turned into strep throat this time.  It’s only been about 9 months since the last time I had strep throat.  Since my health has been so incredibly sub-par recently, I realized pretty quickly it was turning into strep and got myself to urgent care (again) for antibiotics (again).  Last time I had strep, I let it go for a while before I realized what it was, so I was pretty much dying every time I breathed or swallowed.  While I was certainly uncomfortable this time, it wasn’t nearly as horrific as the last episode, so I’m thankful for that.

I am just finishing up my last antibiotics today, so while I’ve been resting to get over the strep throat, I did not take the “vacation” I was planning on taking.  At this point I think I’ll try and start it now… it’s not 100% ideal since I have two appointments this week (which for me is about as many “things” as I can put into a week) but I feel like I really need to just focus on this resting up and recuperating as soon as  I can to prevent more illnesses.  I’ll probably extend it a little longer than I’d originally planned on also, but again, I think it’s very, very called for.

I saw my new ear/nose/throat doctor last Friday since I’d about exhausted my regular doctor’s knowledge of what could be going on with my crazy, absurd body this time.  The new doctor had bloodwork done to test for allergies and (assuming I can stay relatively healthy) he’s going to do a CT scan of my head in the next couple weeks to see what’s up with my sinuses, among other things.  The idea is to have the scan done while I’m at my “baseline” and not sick with anything new, so that adds another level of needing to stay quiet, rest and be healthy.

And did I mention pain spikes in the last post?  OH MY GOD, pain spikes.  And migraines.  Serious, grabbing-your-brain-in-a-vice, I-am-not-fucking-around migraines.  It was all enough that my pain specialist added a new, stronger pain medication to my collection of pills.  Do I win a prize if I collect enough pills?  Is it like Pokemon?

Today I feel well enough to write this, so I’m trying to knock it out before my energy wears off.  I’m still planning on being a little less active online than has been typical for me in the past (and of course I was VERY inactive while I was in the grip of strep) so please continue to bear with me as I work on improving my health.  I will not be intentionally ignoring or neglecting anyone.  I would much, much rather be happy and chipper and be able to do whatever I wanted, whenever I wanted, but that’s not the way things are right now.  Please don’t take any unresponsiveness on my part personally; I just may not be on the computer that day, or a migraine might not allow me to open my eyes, etc.  Regardless, it won’t be you, it’ll be me.

I did have one photo that was all ready to go, and one which doesn’t require a ton of promotion as others sometimes do.  So I’ll slip this one quietly online then go about my resting and vacationing and watching endless cat videos on YouTube through the TV.  (How amazing is it that you can watch YouTube on your TV now??  I love that!)

This image is a new DreamWorld photo, featuring the ever-wonderful Katie Johnson. It gives us a glimpse of a human girl who has been given a sleeping draught of some kind which sent her into a deep, silent slumber… who gave it to her and for what purpose are a mystery.  The billowing blue smoke tells me that something important is about to happen; perhaps a new creature will make itself manifest!  We may find out more in a later image.

We shot this… gosh, at least several months ago, though it may have been longer than that.  A while is safe to say.  I’m wearing a sweater and scarf in the behind-the-scenes photo so it was definitely NOT recently as California has been doing its best impression of the scorching depths of hell the last few months.  This is actually in my front yard (I love it when I can shoot without driving anywhere!).  There are some marvelously old trees here, and this one had a delightfully curly branch which Katie gracefully draped herself over.  It took a little maneuvering on her part to get into position without sliding right off due to the slippery fabric of the dress she’s wearing, but Katie is a pro and didn’t let that stop her.  I lit a few blue smoke bombs in my “smoke bomb bucket” and tried to scurry around, spreading the smoke generously through the frame to composite together later.  It took a number of smoke bombs and careful placement, but I was able to get pretty much all the background covered up and filled any holes in Photoshop.

Sleeping Draught - spreading blue smoke

Sleeping Draught – spreading blue smoke.  Also, ignore the way Katie’s dress is pooching strangely; I can promise you it has to do with the unusual cut of the dress and does not reflect Katie’s body 🙂

So please enjoy this latest DreamWorld photo and the detail shots below!  Thanks to Katie for always being up for all my crazy ideas and for being able to look so serene and beautiful while pretend-sleeping on an uncomfortable tree branch!  Now if I could get my hands on this sleeping draught, I think my resting would be a lot more healing and easier to handle!  Lastly, please don’t feel like you can’t talk to me or interact with me while I’m “vacationing;” I’m sure to get lonely, I just might not get back to you as quickly as I’d like depending on how the day is going.  Thanks to everyone for your support and encouragement!

Sleeping Draught

Sleeping Draught

Sleeping Draught - detail

Sleeping Draught – detail

Sleeping Draught - detail

Sleeping Draught – detail

Sleeping Draught - detail

Sleeping Draught – detail

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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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My dear friend and frequent collaborator Katie Johnson has recently started a new video series which profiles the artists she works with frequently.  I was honored to be featured in the first of her videos!  She put a great piece together which includes an interview with me and lots of behind-the-scenes peeks into how we work.

Take a look!

I often think of lines from the song the princess sings in Peter S. Beagle’s legendary work The Last Unicorn:

Oh, I am a king’s daughter
And I grow old within
The prison of my person
The shackles of my skin

And I would run away
And beg from door to door
Just to see your shadow
Just once and nevermore

The prison of my person, the shackles of my skin” perfectly describes how I feel about my physical body most days.  Though I doubt Mr. Beagle had ME in mind when he wrote it, it resonates so strongly with me.  And I’m sure people with other chronic illnesses will be able to identify with it; it’s a pretty universal problem across the chronically ill spectrum.

Feeling so trapped has always made me instantly know something of what Amalthea felt at finding herself in human form.  I imagine it was even harder for her though.  The disharmony we chronically ill feel with our body was something I’d wanted to express in my Enchanted Sleep series for quite a while and I was glad to finally bring the image to life!

There’s something more visceral about images than you often can’t replicate with words.  Words are powerful, they can build and tear down mountains, but the visual world offers the same information in a different form.  One that, if used well, can strike like a snake and bring instantaneous understanding.  That’s my hope with this series; to illustrate the life of a person with myalgic encephalomyelitis in a way that reaches where words cannot.

I will admit… I’d beg from door to door just to catch a glimpse of a unicorn’s shadow too 🙂

Here’s a look at the final image from our shoot:

Inside Looking Out

Inside Looking Out

And a detail shot:

Inside Looking Out - detail

Inside Looking Out – detail

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I like to check my blog statistics every few days.  You’re shown a wealth of information, some helpful, some less so.  In theory you can use this info to fine-tune your posts to get the maximum response… for me, it’s mostly just interesting, as I’m going to write what I’m going to write, regardless of how popular it is or isn’t.

One of the pieces of information it shows are the keywords people type into search engines which lead them to my blog.  By far and away, the most frequent phrase that pops up is “Veronica Ricci nude” or some variant thereof.  For a long time, the second most common phrase I’d see was “cyborg costume” (because of this photo); currently, people looking up things about Jack Hanna and Blackfish come my way a lot.  Sometimes the phrases are weird and creepy, but it’s still always interesting for me to see what people are looking for when they, intentionally or not, find my blog.

Recently I saw a very new phrase come up: “I have Chronic Fatigue Syndrome and I want to give up.”  My heart just about broke.  So if you’ll indulge me for a moment, I’d like to address the person who typed that.

 

I know how you feel.  This is a shit hand to be dealt.  It’s not fair, and it’s not your fault.  I understand why you feel like giving up.  It’s something everyone with any chronic illness of this caliber has to deal with.  The idea of having to fight the same dragon every day for the rest of your life is utterly overwhelming.  I think of it like the disease form of water torture; it’s not so much the individual moments which break you, but how they build up on each other.

I hope that whatever you found on my blog gave you some hope.  I hope that at the very least it helped you feel less alone.  I wish that I could promise you that there will be a cure soon, but we don’t know.  Regardless of what your precise situation is, you don’t have to bear it all yourself.  There is a wealth up support available online, and I personally have found great help from seeing a therapist who is a perfect fit for me.  You can also contact The Samaritans if you’re feeling really desperate.  I’ve done so myself on more than one occasion, and they really do help.

I would like to hug you and tell you everything will be ok.  Since I can’t, I hope that you can feel like love and kinship I am writing this in.  You are not alone.  I hope you’re able to find the strength to keep going.  Just as much as it becomes so overwhelming to think about the rest of your life being like this, I find it more bearable when you concentrate just on today.  Just worry about getting through this one day.  That can be more than enough overwhelming just on its own without projecting into the future.  I hope you come back, read this and it helps you, even a little bit.  And no matter what you feel from the people who surround you in your daily life, please know that I at least love you, and I care about you.

If you’d like, you can email me directly at sarah@sarahallegra.com.  You are not alone, and you are loved.

 

Much love to a fellow spoonie <3

Much love to a fellow spoonie ❤

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During the five years of being chronically ill to the point of having to change my life to revolve around my illness, I have tried to keep my spirits up.  I’ll readily admit I’m naturally more of an Eeyore, but I also know that having a positive outlook can have a huge impact on one’s quality of life.  So I try to train my brain to be on the lookout for silver linings; for the beautiful amidst the ugly.

Of course, I can’t speak for everyone with ME, everyone with fibro, or everyone with other chronic illnesses.  These are just the shiniest of the silver linings that I have discovered personally.  Yes, there is a lot of bad along with this good, but that’s a subject for another time.  For now, I want to highlight the positives.

 

1. You Become More In Tune With Your Body

I, for example, have learned that I am quite sensitive to nearly all medications, even more than my small frame would account for.  There is a certain cold feeling I get in my stomach which is the warning for a bout of coldsweats and vomiting coming.  While I used to drink lots of caffeine and couldn’t get through an afternoon without some kind of energy dose, I now drink black tea in the morning, and rarely anything beyond that.  My body felt noticeably cleaner and fresher after I made the switch, and again when I became vegetarian.  You learn to listen harder to the signals your body gives you and take them more seriously.

Vanity's Murder

Vanity’s Murder

 

2. You Learn Who The True Friends In Your Life Are

After the fifth time in a row of my having to reschedule an outing due to the unpredictable whims of my body, most people would stop trying to make the outing happen.  I have been extremely fortunate to have wonderful people in my life who are as understanding about my forced flakiness as anyone who doesn’t have a chronic illness could be.   They know by now that evening events, large crowds and physical exertion are especially hard for me, but they continue to invite me to dinners and parties, always letting me know that it’s ok if I’m not up to it.  I love them for continuing to invite me, even when I have to say no 90% of the time, but even more for not holding it against me.

To The Lost

To The Lost

 

3. You Come To Terms With Your Mortality

Everybody dies.  That is an unavoidable fact.  I’ve found that I, along with many of my chronically ill peers, have given our lifespans much greater thought than our healthy counterparts.  Whether our disease is something known to shorten your lifespan or whether it’s a roll of the dice, we are generally able to come to peace with the knowledge we won’t be around forever much earlier in our lives than is typical.  This can even lead to what I call The Walter White Effect, which essentially says that when you have faced the fact that your life may not be as long as you had once believed, you are motivated into working much harder in the present.  It’s true, any of us could go at any time in an untold number of ways.  But there seems to be a quieter acceptance of this inevitable fate when you’ve had your body occupied with chronic illness for a long time.

All Hail The Queen

All Hail The Queen

 

4. You Life Distills Into The Most Important Components

I have days when there are only a couple hours (often scattered through the whole day) when I can actually get anything done.  Usually I’m able to get a little bit more done than that, and it helps that much of what I do can be done laying in bed with my laptop, but if you only had three or four hours to accomplish anything, what would you use that time for?  Lunch with friends?  Taking care of your pets?  Showering?  Taking photos?  Making love?  While chronic illness robs you of so much time, it also forces you to look long and hard at each of the things you do choose to engage in.  I won’t, for example, spend time editing photos which I’m less than satisfied with.  Which activities you choose to keep can say a lot about what’s truly important to you.

Beloved Of The Crown

Beloved Of The Crown

 

5. You Look At The Big Questions

Can you believe in a god who would allow you to live your life so sick with no cure?  Would that strengthen your faith or wipe any trace of it from your life?  What kind of legacy will you leave behind?  If you’re too sick to work and thus always short on cash, how do you define success in your life when society places so much emphasis on status, power and wealth?  If you, like most of the chronically ill, had to scrap your original plans for what you wanted to be when you grew up, how will you find meaning in the life you’re given?  What is the meaning of life when that life is often confined to a single room?

In Between Awake And Asleep

In Between Awake And Asleep

 

This is, of course, an extremely subjective round-up, based mainly on my own experiences.  What will my distilled, concentrated life look like?  What causes will I champion and where will my energy reserves go?  Where will yours?  Chronic illness tends to create mini philosophers, whether we will have it or not.  And while I will never have all the answers, the questions are still worth pondering.

 

Fae Light - Dedeker looks like she's pondering Big Questions.

Fae Light – Dedeker looks like she’s pondering Big Questions.

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It was brought up in a recent interview I did that I am pursuing my art career somewhat “aggressively,” as the interviewer said.  Which is not a negative thing, he was just surprised by the intensity with which I am trying to bring my visions to life, and also make art my full-time career.  And while I hadn’t thought too much consciously before he asked me about it, I know why I’m like that.  For one thing, I rarely pursue anything halfheartedly; I’m either all in and completely obsessed or not in at all.  That’s just part of me being me.

But there is another cause, which I’m calling the Walter White Effect.

Someone put these two screen captures together which is so handy for this post!

Walter White, from the AMC show Breaking Bad… he begins the pilot episode as a repressed, quiet, brilliant but afraid, somewhat henpecked, overqualified high school chemistry teacher.  He and his wife have a surprise baby on the way and a teenage son with cerebral palsy.  To supplement his family’s meager income, he has a second job a a car wash, which he truly hates.  Then he’s told he has cancer and his prognosis is not good.  His internal clock immediately starts ticking.  He looks around at his life, his family and realizes he will have almost nothing to leave them with if he dies.  So he jumps into action.  He begins making meth as a way to quickly make a lot of money to secure his family’s future.  I’m not spoiling anything here, this is all set up in the first episode.  Where his journey takes him is another matter, and is very, very worth watching for yourself.  I, for one,  am counting he days until we get to see the final episodes of the show.

Now, my plight is nowhere near as desperate as Walter’s is, and a show about my life would be incredibly boring to watch.  It would be mostly watching me spend hours and hours and hours editing photos in my pajamas, sprinkled with taking pills, doctor’s appointments, letting Calantha in and out and watering the flowers.  No one wants to see that.  My internal clock is not as loud or desperate as his, but I do hear it ticking away.  There’s no reason to expect that I will get sicker from the ME… but there’s no evidence that I won’t, either.  There is just so little really known about it.  So I do feel a self-imposed pressure to make as much art as I can while I have the ability to, to further my career as much as I can now so that it might support me when other means of work are no longer options.

We finally have our first official death listed as ME on record.  Poor Sophie; I’m sorry that she had to be the one to break this ground.  No one really knows how many of us die from ME, since we’ve had such a hard time just getting validation  about our illness being real.  From speaking with doctors, and what I’ve found out from my own research, we rarely die directly from ME, but it plays a heavy hand in things… organ failure as a result of taking pain meds for decades to combat the ME-caused pain, as an example.

Let me be clear, I do not expect to die soon, and I also don’t expect to get suddenly much sicker and be unable to create.  The future is wide open, and I need to embrace it.  But I also have to keep in mind possible changes and try to be prepared for them without giving in to them.  That’s another thing I can learn from Walter White.  He never threw his hands up and decided he was just going to wait for the cancer to consume him.  He fought it with every part of his being.

This photo made me laugh, but it does illustrate what I’m trying to say.  The future is cloudy.  No one knows what will happen.  But it’s wise to try and fight against, and prepare for, possible negative outcomes.

So fuck it, I’m making art.

I would deeply appreciate any of you taking a moment to sign this petition to change the name CFS to ME.  It’s greatly needed, so a huge thank you to anyone who signs it!

All Hail The Queen - my Breaking Bad-inspired self portrait

All Hail The Queen – my Breaking Bad-inspired self portrait

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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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“The rhinoceros went on, ‘I was very interested in the comparison you drew between Spinoza and Thomas Hobbes. I would enjoy continuing our discussion.

‘I do not think I can,’ the Professor said at last.  ‘I do not want to talk anymore.

‘In that case, perhaps we should be on our way,’ the rhinoceros said.  ‘I have lived in your house for a long time.  We have talked together, days and nights on end, about ways of being in the world, ways of considering it, ways of imagining it as a part of some greater imagining.  Now has come the time for silence.  Now I think you should come and live with me.’

– excerpt from Professor Gottesman And The Indian Rhinoceros, by Peter S. Beagle.

This short story is one of my favorite from my tied-for-favorite-author-with-Robin-McKinley-author Peter S. Beagle.  His work always has an exceptional balance of sadness and joy; in such a way that the sadness doesn’t counteract the joy, but somehow enhances it and adds a poignant radiance.

This story has quite a range of themes, remarkable considering how short it is, and manages to cover not judging by appearances, accepting wonder and awe, healing and moving on, to name a few.  And with the new year upon us, the healing and moving on feels appropriate to bring up now.

It seems just about every person with a blog is tempted to write an end-of-year summary, and I am not immune to such desires.  The last year was certainly very difficult for many reasons.  It was perhaps the worst health year I’ve had since my body started falling to pieces with ME almost five years ago.  I’ve been tracking my daily fatigue on my wall calendar for the last couple years, to denote how tired I am each day.  A good day is blank, a bad day gets an X.  A day that I’m so tired that I feel I could be a danger to myself or others while driving, or find myself secretly wishing just a little bit that I would get in a car accident, just so I don’t have to do whatever I’m going out to do, that gets a skull an crossbones.  There are a few other designations for when it gets even worse, but you get the idea. This year I’ve had about 20 blank days, most near the beginning of the year, and far more skulls than X’s.  As I said, it’s been a rough year.

But through it, I’ve made progress, and have come to see some new doctors who I feel hopeful about.  And while the struggle was there, there was also overcoming the struggle.  I’ve had wonderful experiences with my friends and loved ones that I hold close to my heart.  I moved into a new home that I absolutely adore, and which is an incredible step up, both for Geoff and I and the animals.  Calantha now has a doggy boyfriend with the Australian kelpie next door… they do lots of snuggling when she isn’t running circles around every living thing.  I’ve had another year to spend with my sweetie, sharing new experiences and growing closer.  I achieved some artistic goals; I had a great gallery show, got on the cover of a book, and I won some contests and awards.  And of course, I took lots and lots and lots of photos.  Through everything, there is always art.  I’ve spoken much about the power and healing found in art, and this year it has been more evident to me than ever.

Speaking of the wearying health year, I will keep this entry on the shorter side.  But I know this new year will bring wonderful new adventures.  There will be more growth and change.  And, I hope, healing.  I would very much like to move on from the part in my life where I am chronically ill.  I don’t know if that will ever happen.  But I can hope.  The story of Professor Gottesman And The Indian Rhinoceros brings me hope.  Healing and moving on is always possible.  Though the body I inhabit, the part of me everyone sees, may often fail me, my spirit is strong.  Even if my body never changes, my soul always can.  Good will come.

I am genuinely bubbling over with excitement over the projects that I have planned for the near future.  A great deal of work needs to be done before they’re ready to be seen, but they are underway… and I can’t wait to unveil them 🙂  These upcoming photos will, on the whole, be the most detailed, labor-intensive works I have yet produced, but I am loving the whole process of creating them.  It makes it all the more meaningful and personal.

What are your hopes and goals for the upcoming year?

I hope you all find this new year to be magical and full of delightful adventures 🙂

Now Has Come The Time For Silence

Now Has Come The Time For Silence

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