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Posts Tagged ‘neurologic’

This is one of those things that built up slowly in my head for a while, then suddenly crystallized with numerous people and sources suddenly (unaware of each other) all started giving me the same advice.  After some thought, and a little bit of regret, I’ve decided that they are right and I need to make some changes in how I approach my art.

I need to slow down.  This is very hard for me to do; art is my obsession and I want nothing more than to be producing all that I can as often as I can.

I also need to set my focus more narrowly on DreamWorld.  There is SO MUCH that you guys have no idea about yet, and I need to get to the place where I CAN show you all that stuff!

The thing is, I have to accept that for the time being, I have very limited supplies of time, energy and money.  I’m hopeful, of course, that I will eventually start feeling better, but for now, I have to accept that this how things are right now.  My energy and time allowances have shrunk every year since I first came down with ME.  My chronic pain, daily headaches and frequent migraines don’t help anything.  Since I’m dealing with far, far fewer productive hours in the day than your average person has, I need to hoard them and make the absolute most that I can with them.  None of those minutes can be wasted.

I’m still weighing things, but I may (for now at least) not edit every shoot on my hard drive.  Don’t despair, models waiting for images, I’m not saying none of them will be edited, I just have to really pare things down and only spend the time editing images which I REALLY love.

This also means that I’ll probably be putting out fewer images per year.  This makes me sad, and is the main source of my resistance to the idea of slowing down.  It’s really hard to watch all my friends and colleagues churn out fantastic image after fantastic image and have nothing even on the radar to be shown soon.  You get used to a certain amount of being left behind by the rest of the world when you’re always sick, but it doesn’t make it sting less each new time you feel it.  I love getting to show you guy a new piece!  It’s usually the highlight of my week when I post an image.  🙂  But despite this, I know that this is the right thing for me to do now.

I’m also making some big changes with a lot of DreamWorld concepts; changes which will make the images I do create even better and more impactful, but which requires quite a lot of work on my end which and won’t produce anything I can show you guys, even as a work-in-progress sort of thing.  On one hand, I feel dangerously close to being forgotten and left behind while other artists quickly turn out magnificent pieces… but again, I know that I need to do this preliminary work.  It’s going to have a ripple effect through all of DreamWorld and the images which come from it will be better than ever!  I hope you guys will be patient and not forget about me or DreamWorld in the periods when I have nothing new to show.  🙂

Thank you all for the love and support you have shown me and my work over the years.  It really means so much more than I can say!  I am so grateful for every single person who enjoys and follows my work.  Even if I can’t put out as many images as I have in the past, I can make sure that the ones I do create are the BEST that I can do.  It may frustrate me sometimes, but the extra work I’m pouring into DreamWorld is only going to make it better, brighter, tighter, more emotional and more meaningful.  Thank you for bearing with me.

You’ll notice there isn’t a new image with this post; that’s kind of the point!

And thank you, as always, to Geoff for being an unending font of wisdom, clarity and sage advice.  🙂

A Strange New World

A Strange New World © Sarah Allegra. A self portrait, one of the first images I shot for DreamWorld. I imagine this girl has just returned to our world after years of journeying through DreamWorld only to find that not a day has passed, much like Narnia. 🙂

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First of all, happy Thanksgiving to all who celebrated it!  I had planned on a Thanksgiving post, listing what I’m grateful for and whatnot, but I woke up yesterday with a swollen, very unhappy wrist on my dominant hand.  I’m being ginger with it today, and trying to really limit my computer use, but I did want to get this timely post out.

So, the holiday shopping season has officially begun!  I, for one, despise the idea of shopping on Thanksgiving or Black Friday.  Crowds are not my thing in the best situation.  Even a gentle trip to the grocery store on an average day can be too much for me.  This is my hiding out period where I really try to leave the house as little as possible.

A less stressful approach to holiday shopping, in my opinion, is in Small Business Saturday and Cyber Monday.  Now, I may or may not technically qualify as a “small business,” but I think I fit the spirit of it if not the letter 🙂  You don’t get much smaller than buying from a single person!  And Cyber Monday?  Heck yeah, I’ve got that covered!  Everything of mine is available online.

And what, pray tell, are these wondrous wares?  Well, let me give you a little run-down!
I have blank greeting cards available at my Red Bubble shop!

One of the many blank greeting cards I offer.

Personally, I love having a stash of blank greeting cards in a drawer, ready to go at a moment’s notice!  You never know when you might need them.  And I’ll confess, I sometimes buy cards for their sheer beauty, with no intention of giving them away.  Those ones usually end up on my wall somewhere.  Either way, they’re very well-made, handy and inexpensive!  And if there’s an image you’d like but don’t see in my shop, let me know; in almost every case I can add it for you!  Stocking stuffers, anyone?
I also sell 2014 collectable calendars!

Sarah Allegra 2014 Calendar

Sarah Allegra 2014 Calendar

Each year I put out a new calendar with 12 of my most popular recent works.  This year’s batch includes images from my DreamWorld and actor portraits series as well as my CFS/fibro/ME series Enchanted Sleep.  I genuinely love the quality Red Bubble puts into their calendars; they’re printed on gorgeous, thick, heavy paper which is perfect for jotting down as many notes and reminders as you’d like!  Plus, I love the extra magic the calendars sprinkle into every day.  And need I tell you they make excellent gifts?  🙂

On a side note, I keep my Red Bubble prices low so that they’re available to as many people as possible.  I don’t make much from these sales, but it’s important to me that as many people as possible have access to my images.

For those looking for a unique gift, either for themselves or someone they love, my on-line, self-discovery-through-photography course Introspective is an excellent choice!

Introspective

Introspective

Introspective is a fun and truly unique, eight-week experience.  Each week I will guide you through a new concept to explore with photography, such as love, fear, secrets and joy.  What do those subjects mean to you?  And how would you portray them in a photograph?  Let’s find out!  Self portraiture is encouraged (as I think it’s an invaluable way to know yourself better), but by no means is it required.  At the end of the eight weeks, you’ll have gotten to experience yourself in a new way and learned things you never knew before.

This would be perfect for your artsy sibling, the person who has everything or anyone with a desire to have an adventure and come out knowing themselves better!
And of course there are always prints available!

Sarah Allegra Etsy Shop

I sell prints through my Etsy shop, which are printed by an amazing local printer.  They are printed on museum-quality, archival, thick, luscious paper which is not unlike watercolor paper.  All the images are printed in very small, limited edition runs and come individually signed and numbered.  They come in three different sizes and are truly stunning.  These really have to be seen to appreciate how beautiful they are.  The level of detail captured in these prints is spectacular.  And as with the cards, if you would like a print of something and you don’t see it in my shop, just let me know!  In almost every occasion, I can accommodate your request.

Thank you to everyone for supporting my art through your kind comments, well wishes and purchases.  I so appreciate all of them and I hope everyone has an excellent holiday season!  Here’s a lovely DreamWorld image, featuring the gorgeous Katie Johnson!

Faerie Dust

Faerie Dust

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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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