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Archive for August, 2011

A Potential Ally

I started on a new insurance plan this month and decided to take the opportunity to choose a new GP.  I’m sure you all remember the hellish visit I had with my last GP which made me decide to break up with her.  And while part of me would really like to do the medical break up version of piling all her shit in the yard and setting it on fire, I also want her to not make life difficult for my future doctors.  So I won’t.  Sigh.

Choosing a new GP is not a simple task.  You’re given an almost infinite list of names and the only information you have to go on is if they’re male or female and what languages they speak.  The internet can come in handy here, with more and more doctors getting reviewed online.  But the vast majority of them have no reviews at all, because it’s a relatively new thing to be able to rate your doctor online.

I had one personal recommendation, but the doctor is an hour’s drive away.  And not just a normal hour’s drive away.  An hour’s drive which is at least half in the labyrinthine, many layers of hell which is ground streets in Los Angeles.  The stress and tears accrued on such a trip are immeasurable.  But I did know this doctor would be good.

My other option was a doctor who has an office quite close to where I live, and who had some quite good reviews online, but which I did not have any personal recommendation for.  I went back and forth about it for a while and eventually decided to try to local guy first.  If he sucked, I could always change to the far-away doctor.

I was trying to not put too much pressure on my visit today, but my hopes were lifted when I realized that this doctor worked out of the same office as the doctor who conducted my sleep study.  The sleep study doctor who, you will remember, said that my test results supported a chronic fatigue diagnosis.  At least there would be one doctor in the office who believed that I have an actual medical condition!

It’s a little early to say, but I think I’m going to like this new doctor.  He listened to me, asked a lot of questions and didn’t seem to have any trouble believing me about my illnesses.  He’s referring me out to a pain specialist again (and is trying to get me back to the one I have been seeing since I like him, but the new insurance may not allow that) and is getting all my records sent over from my old doctor.  There will be piles and piles of papers and test results for him to sort through, so I’m supposed to come back in a few weeks, after he’s been able to go over all of them.  And then we’ll see what happens.

But I’m hopeful about him.  It’s nice to not be made to feel like a crazy liar.   It’s nice to feel like your medical team is on your side and wants to help.  We’ll see where this goes.

 

I’ve got some exciting news which I’ll be able to share soon here!  A very special guest may stop by the blog 🙂

 

The Infinitely Simple Solution - An Armless Maiden picture, but one which feels appropriate today.

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Inspired

I had a thrilling encounter recently which is too exciting to not blog about, despite the cold which is still dampening my brain.

I’d heard news that none other than Peter S. Beagle would be doing a book signing near me, right after my birthday.  THE Peter S. Beagle, writer of the beloved book The Last Unicorn.  He has, of course, written much more than The Last Unicorn, but he is perhaps best known for that story, and it is that life-changing tale he wrote which I love him best for.  I can’t even begin to put into words the profound effects The Last Unicorn has had on me, from growing up watching the movie of it, to reading the book for the first time as a teenager, and discovering that as I aged and grew, the story deepened and expanded with me.

I had the great pleasure of meeting Mr. Beagle two years ago at another book signing.  I was completely in awe and could hardly speak.  I think I managed to eventually squeak, “I really love your books.”  But as I had brought my own copy of Unicorn with me, I hoped the worn, well-loved pages would speak more than I could.  Two years ago was before I started taking photographs.  A lot has changed in my life since then.

Several photos of mine have taken direct or indirect inspiration from The Last Unicorn.  The most recent of these, and my current favorite, is the one below:

To Be So Full

After some thought, I decided to take a print of my photo to the signing and ask Mr. Beagle to sign it.  I was very nervous about this.  It bolstered my confidence some that, after I had posted a link to this photo on my Facebook account, Mr. Beagle had seen it and said that it was “amazing.”  And while I didn’t expect him to remember that, I hoped he at least wouldn’t mind me bringing my Unicorn-based art.

So I went to the signing with my print and a pen and my camera and Geoff, who was under instructions to get a photo of me with Mr. Beagle if it was possible.  The line moved very quickly and before I knew it, it was my turn.  Again, I could barely speak, but I managed to get my point across:

He is absolutely the nicest, kindest, more charming man you may ever meet.  You wish he was your long-lost uncle.  And, as you can see, he signed my print 🙂

It was a beautiful moment and I didn’t stop shaking for almost 20 minutes afterward.

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Catching Up

Oh dear.  My poor, neglected blog.  That’s the problem with blogs; when you have lots going on which you would like to talk about, you have no time to blog about them.

I’ll try and give you a quick run-down.  I had my sleep study and more bloodwork and tests run.  Every test came back perfect, including the sleep study.  The doctor going over my study results even said I’d slept better than most people do during one.  As discouraging as that was to hear, he also said that went along with a chronic fatigue diagnosis.

Last time I had seen my doctor, she’d indicated that after these last tests were run, she wasn’t sure what else she could do for me.  I was quite nervous and anxious going in to see her, and not only because I’d had the second-worst night’s sleep ever of 45 minutes.  After she recapped all the tests she’s run on me in the past eight months, and how everything has come back normal, she finished by saying that she thinks my tiredness is from me being anxious and depressed.  There’s nothing physically wrong with me; it’s just all in my head.

I wanted to slap her and burst into tears.  I managed to hold it together and not do either.  That cemented me decision to fire her and find another doctor, which I am still in the process of.

Her statement is utterly, completely absurd.  Not only have three other doctors all diagnosed me with chronic fatigue, my symptoms perfectly match CFS and they do not someone who is tired because they’re depressed.  I certainly am overly anxious at times; I tend to be somewhat emotional in general.  But that is not why I’m tired.  I’ve been so depressed I couldn’t get out of bed for days and weeks; I know exactly what that’s like.  This is not that.  One of the biggest distinguishing factors between the two is what you want.  A person who’s completely depressed doesn’t have any desire to do anything, even the things they love the most.  The depression eats away at your will and ambition and leaves you as an empty shell.  If you asked a depressed person what they would do tomorrow if they woke up and felt better, they wouldn’t know what to say; depression had sucked their desires away.  Someone with CFS, like me, would have a huge list of things they’d like to do.  There are tons and tons of projects I’m at various points of and I would love to have more time and energy to finish them.  I am limited in what I can do by my body.  But if I woke up tomorrow and was fine, I would race around doing things.

I am not tired because I am depressed.  Not that that can’t happen or I’m judging those suffering from depression; not at all.  As I said, I have been there and know exactly what it’s like.  But that knowledge also lets me know that this is something different.  And if my doctor cared to try even a little bit, she would know that.  The strangest thing to me about her dismissing me and my symptoms was her complete lack of desire to do anything about my supposed depression.  If she really believes that’s what I’m suffering from, well, we should do something about it.  But she doesn’t care at all.  So she’s fired.  CFS is hard enough to cope with when they people around you understand and support it.  It’s impossible if someone important as my primary care doctor doesn’t even believe me.

This leads me nicely into one of the projects I am too tired to work on as much as I want.  I have started a new photography series called Enchanted Sleep, chronicling the effects of living with chronic fatigue.  I spent a while talking with other CFS sufferers and gathering details of their experiences… I want this project to not just reflect what my life has been like, but show the common threads which bind us together.  I am also only using models for the project who have either chronic fatigue or our sister illness fibromyalgia.  That will make it more challenging, yes, but also more meaningful when it’s complete.  My hope is that I can find a CFS research group to partner with, to cross-promote and help raise awareness of the disease, and who  I can also donate some of the print sale proceeds to.

I’ll end this entry with sharing the first couple images in this series.  Feel free to spread the word about this; my goal is to reach as many people as possible and let them experience the world through our eyes in a visceral way.  And if you are a model with either CFS or fibromyalgia, please feel free to contact me!

Mourning For Things Lost

Mourning For Things Lost

 

In Between Awake And Asleep

In Between Awake And Asleep

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