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Oh my goodness… so, so much has happened recently that I feel completely overwhelmed in sitting (or, rather, laying) down to tell you about it!  But I have a new image to share with you and I really wanted to post it and maybe give you guys a little gloss-over update at least, so I’m just going for it.  If I let myself think about it any longer, I’ll just get frozen with intimidation over how much I’d like to cover!

First news: health is poor.  I mean, yes, you all know my health is pretty much always poor, but it’s been even more so lately.  I feel like it’s been slowly sliding downhill over the past… year?  year and a half?  two years?  But the last six-to-nine months have been extra bad.  I think I’ve told some of you at least about the “hot flashes” I’ve been getting.  It’s actually quite a lot more complicated than calling them “hot flashes” implies, but I don’t know a better name to get the general idea across with, so we’re going to call them “hot flashes.”  What it really is, is my body suddenly seems unable to regulate its temperature properly, which sends me into sudden, drenching sweats, often while I’m shivering with cold at the same time.  Very similar to the sort of sweats you get with a fever, but it only lasts a few hours, it comes and goes quite randomly, I have absolutely no other fever symptoms and it seems to ONLY happen in the morning (because that’s when my day is busiest, I have the most appointments scheduled, etc, so it can be the most obnoxious).  This sounds like something that’s just annoying, which it is, but it’s quite a bit worse than that.  It makes me weak and lightheaded, it’s not something I can simply push through by will alone; I might have to cancel appointments or send Geoff to the grocery store on his own.  We both utterly detest grocery shopping, but I’m much too weak to do it on my own anymore, and if I at least go with Geoff, it’s company for a task no one enjoys, so I always feel bad if I have to make him do it by himself.

These were getting so bad and disruptive for a while that I saw my GP about it.  He tested my thyroid and a couple of other things in my blood, examined me, decided it wasn’t anything menopause-related (which, yes, would be QUITE young to start having them, but stranger things have happened), said it sounded hormonal and sent me on my way.  I saw my neurologist, he said it wasn’t anything neurological and I should probably see an endocrinologist; a doctor who specializes in looking at your hormones.  I also happened to see my pain specialist during this time just for my every-three-months-check-in, and mentioned it to him, and he agreed it sounded hormonal, but was outside his expertise.  So I did some research, found an endocrinologist nearby who got good reviews online and made an appointment.

The first bad sign was that the endo’s office doesn’t accept credit cards of any kind, only cash or checks, which they had not mentioned in ANY of the conversations I had with them when I set my appointment up.  Not only is that just absurdly behind the times, but I, like most people this day and age, very, very rarely carry either cash or a checkbook on me.  Before going to this doctor, I couldn’t tell you the last time I wrote a check.  Thankfully, I happened to have shoved my checkbook in the bottom of my purse anyway, but I had a mini panic attack in the waiting room wondering how I was going to pay these people.

Eventually I found it though and went into my appointment, which was mostly going over my medical history with the doctor and explaining what the problem I was seeing him for was.  Obviously, my medical history is much more like something George RR Martin would write about than a quick-read paperback, but the doctor interrupted me quite a lot as I tried to tell him details which were important and extremely pertinent to the hot flashes I was seeing him for.  Obviously, I did not care for that, but it is a very common problem with doctors.  If I wrote off every doctor who interrupted me while I was explaining things, I wouldn’t have any doctors left to see.  Anyway, he ALSO agreed it sounded hormonal and said we’d run a bunch of blood tests to see what was going on.  We’d be repeating everything my GP had already run because, the endo said, his tests were more thorough.  Ok, fine.  Six vials of fasted blood later, they were sent to the lab, Geoff bought me breakfast and I waited a week’s time until I could get my results from the doctor.

In this appointment (paid for with the check book which I’d triple-checked was still in my purse after the stress of the first visit), the doctor went over each page of the bloodwork results with me, explaining what was tested and how every single thing came back normal.  My blood was normal, thus, I was “perfectly healthy!” and did not need to see him any more expect for in another six months to recheck my blood and make sure it was still all normal and I was healthy.

Obviously, I am not healthy.  Even if you discount my mountain of other ME-related issues, the fact that I was presenting with extremely hormonal-sounding problems should indicate that something is amiss.  This doctor had absolutely no interest in finding out what this life-interrupting issue was though.  The impression he gave me was that he thought I was an overly worried, mildly hypochondriac girl getting her pigtails in a twist over nothing and that showing me that my bloodwork said there was nothing wrong would make the problem go away, because it was  probably something I’d dredged up on my own through pure will.  But the most offensive part of all… he did not check one single motherfucking hormone.  Not ONE.  On a case where three other doctors all had said the issue sounded hormonal, I told him I was concerned it was hormonal, he didn’t bother to check anything.

I’ve since been told by other people who have to see endos regularly that you usually have to specifically ask them to check your hormones, if that’s something you want.  WHY???  You don’t have to do this with ANY OTHER medical specialty.  I don’t have to tell my neurologist to check my brain, I haven’t had to tell my gynecologist to examine my lady parts.  How is this something that is not only allowed, but is COMMON in this one niche???

At the time he was going over the bloodwork with me in the room, I was trying to control being wildly disappointed over having yet another problem come back testing as “normal” and being shunted off again, again being treated as if I was making this all up, again being patronizingly patted and being told to not worry my pretty little head about it.  Look, I’m sorry that my disease isn’t something they teach a lot about in medical school, I really am.  I’m sorry that most doctors feel threatened when confronted with something they can’t simply write a prescription for and it’s solved.  I’m sorry that it makes them feel insecure, as if they don’t know what they’re doing because I don’t have an easy fix.  I am far, far sorrier about that than any doctor who’s treated me like a hot potato could ever be.  But I do not go around to doctors’ offices for fun to mock them for their lack of knowledge.  I go in with an open mind every time, despite years of consistent disappointment, hoping that, just maybe, this will be the time when I get an answer.  Not even THE answer, just a part of it.  But to not test any hormones for a presenting issue that, to every lay-person and doctor I’ve spoken to, sounds extremely hormonal is inexcusable.  I spent a lot of money in copays, I spent six vials of blood my body could have used, I spent a lot of time gearing up for appointments and recovering from them, I spent incredibly precious energy getting to my appointments, getting tests done, and sobbing after my last appointment as my hopes were again dashed and I realized it had all been wasted.  The absolute least the doctor could have done was run the tests I wanted done but didn’t know that I had to ask for specifically by name, because that’s how endocrinologists are.

Each time I have one of these horrible experiences with medical professionals, it makes it so, so much harder to even fathom trying again.  Why should I if most of them are going to just call me crazy and kick me out of their offices as quickly as possible?  And of course I know that I have to keep trying because giving up isn’t an option, but for fuck’s sake, can’t they at least try and meet me in the middle somewhere?

After that edifying experience, I couldn’t even bear the thought of looking for another endo and starting the process over again, even knowing now that you have to ask for your hormones to be tested.  The wound was just too raw.  What I did have was an appointment set up with Celestine Grace, my very favorite medium, who’s helped me a lot in the time we’ve been working together.  I asked her what would help my body and she told me to take rose hip supplements, which I knew are very high in vitamin C.  They’re cheap and easily available from Amazon, so I got a bottle and started taking them.  And you know what?  Within a couple weeks, my hot flashes had gone down considerably.  They still popped up now and then, but the difference was huge.  I ran out of them and it took a few days before I could get my replacement bottle in, and while I was off them, my hot flashes spiked again.  I’m back on them now and they’re going back down, but it might take a couple weeks, like it did the first time.

I am so, so grateful to Celestine for that bit of advice and for helping to turn around a very bad situation (and also all the other help and advice she’s given me over the year or so we’ve known each other) but it’s so incredibly ironic to me that four conventional doctors couldn’t or wouldn’t help me, but my medium did.  It goes to show the strength of her talent while underscoring how little conventional Western medicine has to offer me.  Thank you, Celestine, I can’t tell you how much those rose hips have helped me!

The whole thing got me thinking that I may just need a whole different approach to my health, so I began to look into different specialists and alternative treatments.  I mean, that’s something I’m continually on the lookout for, but I was searching with a new urgency this time.  Giving vitamin C intravenously has been a growing trend… since my body had responded well to the rose hips, maybe it would like a more concentrated dose even more!  I have found a naturopath who is nearby, returned my phone call herself to discuss if we would be a good fit for each other and offers IV vitamin C along with a ton of other therapies I’ve been interested in but haven’t been pushed far enough to try yet, since most are expensive and not covered by insurance.  I have an appointment with that doctor next Monday morning, which will just be a consultation between one to two hours where we just go over my history, what changes I’d like to see and what treatments might be good for me.  They also test hormones.  🙂  As hard as it is for me to allow myself to be hopeful that maybe this time it will work, I can feel hope trying to quietly creep in.  I’ll let you guys know how that appointment goes.

As my body has gotten more and more painful and uncomfortable to inhabit, I’ve been turning to my own form of spirituality for strength and comfort.  It works for me.  It helps significantly, so much so that Geoff has noticed its effect.  It’s a bit too much to get into it all now, but it’s based in meditation and finding my own path up the mountain toward god/source.  A lot of it might sound like new age woo-woo, but I stick with what works, and this does.  My variety of spirit guides have been a big part of keeping me from utterly falling apart as things have gotten more and more difficult all around… just thinking about them makes me feel more peaceful.

I frequently mourn the health I once had, the life I once had, everything ME has taken away from me.  I mourn for those who I wish I could have gotten to know in this life and not just in the next.  I still mourn the loss of our previous home with our incredible neighbors, even though this place is finally feeling more like home and we have great new neighbors here.  Mourning is a universal human experience; I’m sure every one of you can think of things you mourn.

My new city has a lovely, tiny, serene, old little cemetery within what would be walking distance for most people from my home.  I wanted to shoot there when I had the excellent Teri Wyble over (quite a while ago now, I’m terribly behind on editing).  I didn’t know exactly why I wanted to shoot there, or what I was trying to say at the time.  This sometimes happens.  I’ve learned by now to just go with it, that its reason will become clear to me later.  That was the case with this image.  I asked Teri to imagine this was the grave of someone she loved and missed horribly; someone whose loss she still mourned.  I don’t know if she was tapping into a loss in her own life or if she’s just very good at imagining, but she portrayed exactly what I wanted:

Loss.  An inability to move on from the blow of death.

But I didn’t want it to be completely bleak.  The birds swooping in to comfort her speaks to me of the healing that comes after we let ourselves grieve.  Yes, you have to pass through the darkness first, but there is eventually light.  Sometimes it comes to you on feathered wings when you least expect it.

Whether the viewer has recently experienced this themselves or not, it’s such a common part of just being human, I wanted to create this.  Not to wallow in the mud of despair, but to remind myself that the heaviness will someday lift.  The pain will ease.  The grief will lessen.  Maybe even, a treatment will eventually work.

Thank you so very much, Teri, for your beautiful, emotive modeling!  You are a wonderful human being and model.  🙂

Enjoy, my friends!  If this speaks to you, I’d love to hear what it brings up if you’d like to share that in the comments!

Mourning Dove

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I have known Erick Reidell for several years, but he and Geoff go way back to high school.  Erick has always been an adventurous, creative, gregarious person, and we found a lot of artistic common ground to talk about when I first met him as Geoff’s new girlfriend a little over five years ago.  Which was a relief to me, since I just wanted Geoff’s friends to like me!

It was a shock to everyone when he was diagnosed with cancer that same year.  Cancer cruelly seems to always pick on the best, most wonderful people.  Erick would not be anyone’s “typical” cancer patient.  He doesn’t smoke, lives healthfully and is always full of optimism and cheer.  That first year Geoff and I were dating, Erick had a seven-pound tumor removed from his abdomen.  There were many breathless months while Erick endured chemo and treatments and recovered from surgery.  I vividly remember the night Erick’s wife called Geoff to tell him that the most recent scan had come back clear, and for the time being at least, Erick was in remission.  Everyone was, of course, extremely relieved.

Since then I’ve gotten the chance to get to know Erick better myself, and I can say he is one hell of a guy.  Hard-working, artistic, funny, a great husband and dad and always ready to face the next challenge his body throws at him.  He is such a lovely man that I suggested he become ordained online so Geoff and I could have him marry us at our wedding, which he did.  The wedding was, of course, a wonderful, beautiful blur of a day, but it will always mean so much more looking back and remembering it was our dear friend, and not some stranger, who performed the ceremony.

Alex/my man of honor, me, Erick, Geoff and Geoff's dad/best man, Larry.

Alex/my man of honor, me, Erick, Geoff and Geoff’s dad/best man, Larry.

Late winter, after several years of being clear, Erick’s cancer once again returned, and once again, he beat it.  Not without great effort from him and his doctors, but he did it.  When we knew we’d be seeing each other over Christmas, Erick asked to be a part of DreamWorld, which I gladly said yes to.  I also felt that a very serious charge had been given to me.  I wanted to make sure I did something special for Erick, something true to DreamWorld, something that spoke of his struggles and also something that would ring true to other cancer sufferers.

Out of these swirling thoughts came the Yellow Knight.  Yellow, since that color is associated with cancer-awareness ribbons, LiveStrong bracelets and the like.  His armor is made out of little bits and swirls of ribbon (or paper, as it ended up, but it looks like ribbon) much like the awareness ribbons.  Though ribbon would seem like a frail and flimsy defense, he defeats the horrible cancer-monster.

I’ll talk briefly about how I made Erick’s costume on, again, a next-to-nothing budget.  His cloak was the same one I’d used in Paul Telfer’s Sleeper’s Sentinel photos, so that was already made.  I wanted to make a chestplate and bracers for Erick’s armor.  Ihough I’d originally planned to use actual ribbon, I was dissatisfied with the ribbon selection both in my ribbon drawer and the craft store, so I decided to use paper instead.  That was also quite a bit less expensive, so double win!

For the chestplate, I stared by gluing two layers of cardstock together to give it a firm, stiff base, and covered one side in muslin for a more “polished” finish.

Matching up cardstock and fabric shapes.

Matching up cardstock and fabric shapes.

Cardstock back of the chestpiece.

Cardstock back of the chestpiece.

And fabric front, with a slight seam down the center to help shape it.

And fabric front, with a slight seam down the center to help shape it.

You can see my black and red suitcase on the floor, which just shows how hurriedly I was trying to put this together before we left for our trip.  I got the bracers made too; fabric shapes with cardstock bones to give them sturdiness.  I was planning on just tying the bracers on with ribbon, and I figured I’d do the same for the chestpiece since you wouldn’t be able to see the back or sides anyway, so the problem of keeping them on was easily solved.

bts4

Bracer with cardstock bones.

At this point, we really had to leave, so I just cut lengths of paper and used my rotary cutter to slice nice, straight even strips into them.  I packed my glue gun and other supplies I might need and we hit the road.

Our time visiting family was short, so we decided to shoot right after Christmas.  I spent one long afternoon of our trip bent over the chestpiece and bracers, hot gluing the ribbon strips to them as quickly as I could.  I alternated the colors, types and thicknesses  the papers frequently to give it more depth, using cardstocks, vellum and tissue paper.  Unfortunately, I was so busy feeling stressed about getting it done before the shoot the next morning, I completely forgot to take photos of the gluing-on process.  But you can probably imagine what a slightly-crazed woman wielding a glue gun in one hand, paper ribbon strips in the other, muttering dark curses under her breath, hunched over fabric/paper constructs and commanding the glue gun to heat up faster and just GLUE looks like.

The morning of the shoot came, and I’d managed to finish the costume (though my lower back was still complaining from having hunched for so many hours).  I knew I’d be doing a lot of work to the cancer-monster in post, so I simply had one black trash bag bunched up into a ball which Erick could punch, and I’d made a very, very rough wire frame for another black trash bag into something that was somewhat wing-shaped.

I scotch-taped the bags as needed to hold their shapes and let Erick pummel the central mass of the creature.  Geoff helped tremendously with flipping the cloak and holding the wings up for me to photograph separately and composite into the final image.  All said, it took perhaps half an hour.  The park we were in was just beautiful and quite deserted given the very cold weather and early hour, and I couldn’t resist taking some snapshots of plants covered in jewel-like snow.  I’ve said it before, but as a California-native, snow is UTTERLY MAGICAL to me whenever I encounter it.

Little Jewels

Little Jewels

Erick looked incredibly noble and at home in his costume, and I’m so glad Geoff reminded me to take a portrait of him not in action.  They’re quite different shots, but I think a lot of Erick’s quiet, inner strength and grace shows through, especially in the second portrait.

After that, we all had a lovely breakfast at a local cafe and warmed up with hot food and coffee.  A successful shoot!

I hope these image can be an inspiration to others fighting their own battles; perhaps simply reminders to not give up quite yet.  If you have had experiences with cancer or other long illnesses yourself, I would love to hear from you!  I hope I can make the cancer community proud.

And with that, let’s see the finished photos!

The Yellow Knight

The Yellow Knight

The Yellow Knight

The Yellow Knight -detail

The Yellow Knight -detail

Ribbon Armor

Ribbon Armor

Ribbon Armor - detail

Ribbon Armor – detail

Thank you, Erick, for coming to play in DreamWorld!  🙂

This is not the time or place to get into it all, but it seems I will be heading into another of my own health battles, of the bureaucratic nature this time, and any well wishes and prayers would be appreciated!

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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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When I started planning my DreamWorld series, one of the first characters that came to me was a dryad; a nature spirit representing our connection with nature.  I saw her as a strong, benevolent queen, keeping watch over the woodland creatures and protecting them.   The first concept I came up with that made my heart pitter-patter with excitement was the idea of building a huge crown for her from sticks and branches.   I had no idea how I was going to accomplish this, but I had a vision.  And I have learned over the years that having a vision will pave the way to making it a reality, regardless of if I know how that will come about.

A sample of the three completed photos

A sample of the three completed photos

I tried to get a lot of photos to document the lengthy creation process, so this will be a longer post.  Bear with me!  Or just skim over it and scroll down to the finished photos 🙂

After I sketched out my designs, I decided to just dive into the project and tackle each step as it came.  So the first part was simple; I needed sticks and branches.  There are lots of trees in my yard, so there was no shortage of sticks to choose from!   The challenge was to try and find ones that already held the kind of shapes and curves I was looking for.

I started by bundling the branches together into small clumps, and eventually joining the smaller clumps into larger ones.

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It was quite simple and  low-tech, it just took wire, wire cutters, pliers, time and patience.

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I gently guided the branches into the directions I wanted them to go, and wired them into place.

Calantha bomb

Calantha bomb

Once the shape was right, I spray painted it with various layers of black, bronze and silver paints, giving it a subtle, organic variation of colors.

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At this point I started working on the dress and, in particular, the lace leaves.   Oh, I was excited about the lace leaves!  I’d found a really beautiful yard of lace with an iridescent shimmer to it.  I cut out hundreds of leaves from it in several different sizes.  And I decided that any mild flaws would only enhance the natural and organic look I wanted 😉  After the leaves were all cut out, I painted veins on them with pearly fabric paint; you can see a small sample of the veined leaves trying on my bathroom floor below.  I had to paint them in the bathroom so they could dry without the cats trying to help.

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Lace leaves and happy owl shower curtain!

After they were painted, I created a small landscape of bubble wrap and plastic bottles to give a wide variety of angles for them to take shape from, and covered them thoroughly with spray adhesive.  As they dried, they took on gentle curves and curls much more like actual leaves.

Most of the leaves were for the dress, but I wanted to bring a few of them onto the crown as well.

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Hot glue is a crafty girl’s best friend.

Lastly, I added pinecones and a small plant holder which I thought had a very regal look, all of which had been painted to match the rest of the crown.

sarahallegra.com

sarahallegra.com

The $2 plant holder, pinecones and lace leaves

This whole time I still wasn’t sure how I would attach the crown to my model.  The crown was really pretty huge, fragile and awkwardly shaped, but it was quite light.  After some deliberation, I decided to try mounting it to some extra thick foam board with zip ties, using a piece long enough piece to run from the base of the crown to where the model’s hips would be.  I covered the back of the foam board with adhesive-backed Velcro, and cut matching Velcro lengths, planning to use them as straps around the model’s shoulders and waist.

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There was the crown; next was the dryad’s dress!  I wanted it to be long and flowing, with a very natural feel to it.  I planned on having the bottom of the dress be cut into strips, using fabrics with different textures and colors to help emulate the look and feel of a tree.

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The back of the dress, lace pinned onto and under it.

I used plain, unbleached muslin to make the dress, both for it’s inexpensive cost, and because I suspected it would dye easily.  After the form of the dress was created, I tied a rope between two trees to make a clothesline, bought a HUGE amount of instant ice tea and a spray bottle…

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I sprayed and sprayed and sprayed it… letting each layer dry, so the color could build up and have a natural gradation.  It worked, but oh my heavens, did it SMELL.  I drink tea, and I’ve never found its smell offensive, but apparently I’d never experienced it in such a large and intense quantity.  I had to email the model and warn her that her dress would be beautiful, but stinky.  It had to lay out on a chair on the porch the first night; I couldn’t even deal with it being in the bathroom.

Once it was dyed, I needed to tie up the metaphoric loose ends of the dress; put grommets in the back, sew the ribbons around the waist, etc.  Byron and Maynard both did their best to help with this.

sarahallegra.com

sarahallegra.com

They do their best despite their lack of thumbs

After that, it was finally time for the part I was most excited about: attaching the lace leaves!  All along I had been planning on creating a collar and cuffs out of the leaves, and I was quite excited to have finally reached that point after all the work I’d done leading up to it.

sarahallegra.com

Hot glue again works wonders

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I had suspected that I would need to paint in some shadows to define the various layers of the leaves; with white on white, I thought it would look like a white blob from far away.  After some thought, I decided to “paint” the shadows on using eye shadow.  I wanted the shadows to be very light; I love the pearly iridescence of the leaves and I didn’t want to cover that up.  I thought eye shadow would offer me a wide range or affordable colors (and I ended up just using an eye shadow variety kit I’d had forever) and allow me to gradually build up subtle changes of color.  After working on the dress all day, and the shoot looming in the near future, I spent one whole evening painting eye shadow in between the leaves of the collar and cuffs (with an awful headache, I might add).  I loved the result; it was beautiful and just like I had wanted.  To help preserve everything, since shadow can smear so easily, and also fortify the shapes of the collar and cuffs, I gave them all a light mist of spray adhesive to bring it all together.

That was the wrong thing to do.

Somehow, the spray adhesive turned my carefully constructed, beautifully built-up shading into a nasty, muddy blob.  It looked awful.  I wanted to cry.  At this point, I was only a day away from the shoot, and I had no idea what I was going to do.  I absolutely couldn’t use the dress the way it looked.  And it was now very late on a day I’d spent every hour of working on the dress, I was tired, cranky and tearful.  Just to feel like I was doing something potentially useful, I painted on a couple different colored swatches of acrylic paint I had on hand for another project, and decided to let the whole thing dry overnight.  I’d figure it out in the morning.

The acrylic paint worked.  And I ended up liking the end result of the paint even more than I’d liked the initial eye shadow ones.  It still took a lot of time to do the next day, but I was able to work on it without feeling panicked or totally stressed out, because I knew it was going to look beautiful.  And of course, acrylic paint dries quite quickly, which helped!

The back of the painted lace collar

The back of the painted lace collar

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One of the cuffs

So much work, but so worth it!

So much work, but so worth it!

There!  The costume was done!  All I had to do now was shoot the photos.

I had been envisioning one of my go-to models for this, Dedeker Winston.  I love working with Dedeker; we’ve been creating images together for several years now, and she always delivers above and beyond what I ask of her.  It also turned that she especially likes dryads, so she was very enthusiastic from the beginning!  Since this was going to be a more challenging shoot, I asked my sister-in-law Kim, who is herself a very talented artist, if she would come along and assist.  Kim was also excited about the shoot, so the three of us got up a bit early on a Saturday morning and went out to one of my favorite woods.  Kim was also kind enough to take some behind the scenes photos for me, which I will share with you here 🙂

Getting Dedeker into the costume required a bit of work and was definitely not something I would have been able to do without Kim being there.  Dedeker had to step into the dress, I strapped her into the crown while Kim stabilized it and kept the branches from gouging Dedeker’s eyes out.  After that I got the back laced up around the foam board.  I had Dedeker stand on a stool to give her extra height and presence, adding to her ethereal feel.

Helping Dedeker onto the stool; it was not very easy for her to navigate with all that she was wearing.

Helping Dedeker onto the stool; it was not very easy for her to navigate with all that she was wearing.

I had been considering adding an additional underskirt of some really beautiful, shimmery green fabric I’d had in my fabric stash.  Once I saw Dedeker with the crown in the actual location, I thought it would add a lot, so I quickly safety-pinned it under the dress.

sarahallegra.com

There is a Frisbee golf course at this wood, and one of the “holes” is quite near the location where we were shooting.  Every now and then a golfer wandered into the background.  No one seemed to think what we were doing was particularly odd.

Frisbee golfers golfing

Frisbee golfers golfing

I made some bird stand-ins out of soft foam sheets and a little wire.  I thought it would be useful to have something casting a realistic shadow when it came to adding in the birds in post.

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I clambered around on the trees, trying to find the perfect location to shoot from.  I went tumbling off this log at one point, but managed to twist in the air and not land on my camera.

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More shooting

More shooting

I had my photos!  The weather had been perfect, and I was really excited about the shots I got.  Next it was time to edit them, and add in the birds and squirrels.  Editing ended up being more difficult and complicated than I had expected (which often happens) but I got through them all eventually.

I had been taking photos of the birds at my feeder and yard with this shoot in mind, so I had built up a bit of a library already.  Stalking the birds for so long has given me a much greater appreciation for wildlife photographer; it can take a long time, LOTS of patience and a fair bit of luck to get the shots you want.

I’m really pleased with the final images, and even more pleased that I managed to create these with a very limited budget.  The sticks and branches were free, I already had the wire and some of the fabric.  The only money I spent money on was some fabric, paint, instant ice tea and the crown decoration.  All together I’d guess I spent about $40 or $50 on this, most of which went to the different colors of spray paint.  Huge budgets are not mandatory to create great things!

Below are the the final edited photos, along with some detail shots from each one; the small size these have to be on the internet just can’t display everything I’d like you to be able to see.

The Court Of The Dryad Queen

The Court Of The Dryad Queen

The Court Of The Dryad Queen detai  l

The Court Of The Dryad Queen – detail

The Court Of The Dryad Queen - detail

The Court Of The Dryad Queen – detail

The Court Of The Dryad Queen - detail

The Court Of The Dryad Queen – detail

The Court Of The Dryad Queen - detail

The Court Of The Dryad Queen – detail

The Court Of The Dryad Queen - detail

The Court Of The Dryad Queen – detail

The Court Of The Dryad Queen - detail

The Court Of The Dryad Queen – detail

Annunciation

Annunciation

Annunciation - detail

Annunciation – detail

Annunciation - detail

Annunciation – detail

Annunciation - detail

Annunciation – detail

The Queen's Consort

The Queen’s Consort

The Queen's Consort

The Queen’s Consort

The Queen's Consort

The Queen’s Consort

By the way, does anyone know what kind of bird this is?  It’s one of my favorites who frequents the feeder; I’d like to know what to call her!

Thank you so much to Dedeker and Kim for their help in making these images happen, and to Geoff for all his support!  I couldn’t have done it without you guys.   I’m so pleased to be able to have these photos completed.  They really sum up what I want DreamWorld to be about; beautiful, ethereal, mysterious characters with a lot of production value.  Thanks to all who read all the way down to here!  🙂

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