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Archive for February, 2011

A Break

I was absolutely dreading today.  I’d been dreading it for weeks.  I had an appointment with the new nephrologist I’m being sent to, to evaluate the condition of my kidneys and the chronic pain they’re causing.  I’ve blogged a bit already about how incredibly awful all my previous nephrology visits were.  One of the asked me what I knew about my condition to try and get ideas for treating me, one, in an attempt to ease the nervousness I was feeling, introduced a whole host of new fears to me which I’d never even thought to be afraid of before.  But all seemed to not care, because I wasn’t in as dire condition as their other patients.  They seemed awkwardly embarrassed that they didn’t have anything to offer me and just wanted to get me out the door as quickly as possible.  They did not care.

And it’s true that so far I’ve absolutely adored all the new batch of doctors I’ve been seeing since we moved.  Geoff kept trying to encourage me that perhaps my luck would hold and the nephrologist would be awesome as well.  I was not optimistic.  But you know what?  He was right.

This nephrologist is amazing.  She has actually seen and treated other people with medullary sponge kidney.  I am not her first patient with it, as I was with other doctors.  She cared.  She listened.  She asked me lots of questions, and let me ask her lots of questions… which she then answered thoroughly.  But her first order of business was to make sure I understood that MSK is a benign condition and there’s no reason to think that it will cause future kidney problems for me in the future… and my kidneys are functioning perfectly well right now. This was very good news to me.  Other doctors had led me to believe that I had two ticking time bombs in my abdomen, and it was only a matter of time before the shit really hit the fan; as if I could feel much worse than I do already.

She’s sending me for an ultrasound of my kidneys since it’s been a few years since anyone has looked at them, and she doesn’t have copies of those pictures anyway.  That will also rule out stones, which neither of us think I have, but is good to make sure of.   Once she sees what the ultrasound shows, we’ll talk about how to proceed.

But, importantly, she is also not convinced that my chronic pain is due to my kidney condition.  They may be two separate issues.  This is good and bad.  It may mean I can really, finally, stop worrying about my kidneys and what they’re doing day to day, and how my future will be colored by them.  But if the pain isn’t caused by my kidneys, we seem to be back to square one with an unknown, mysterious cause.  That’s frustrating.  I just want to know what the fuck is wrong with me so I can have some chance of doing something to make it better.   But if the kidneys really, truly aren’t the cause, well, that sucks that I’ve been believing they were for the past two and a half years, but let’s not waste any more time blaming them and find the real cause.

At one point during my appointment, the doctor asked me about other health problems I have, so I started rattling the list off.  As I got to the end, she looked down at the notes she’d written and said, “That’s too many health concerns,” with great compassion and sympathy.  She told me, after I listed all the medications and supplements I’m on, that she can understand why I’m willing to try just about anything to feel better.  She gets it.  You’d think that wouldn’t be a hard thing to find in a doctor, but it is.

I’ve left just about all my other nephrology appointments in tears, from fear or anger or frustration.  Today I left wanting to cry again, but this time from relief.

I needed to catch a break, and I did.  I am very, very thankful for this.

There are many unknowns still.  But it seems like  I now am being supported by a team who will help erase those unknowns one at a time.

Where She Learned About Joy

Where She Learned About Joy. This one is from my Deerskin series, but the tone of it felt appropriate for today's entry.

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Yes, my valentine’s was lovely, how was yours?  My sweetie knows how to make me happy 🙂

You may remember in an older post of mine that I was quite concerned regarding one of the main forms of treatment available to me.  My previous nephrologist suggested that getting the nerve-blocking injections I periodically subject myself to would lead to eventual scarring around said nerves… rendering them, over time, incapable or receiving any benefit from pain medication at all, and leaving me far worse off than I was before.

This quite stalled me.  The injection procedure is far from fun, but I put myself through it because it’s one of the few things that has been able to give me any lasting kind of quality of life back.  And if that option is now no longer safe… I have no idea what to do.

Luckily I saw this nephrologist shortly before moving and switching over to a whole new group of doctors, including a new pain specialist, who, by the way, I utterly adore.  The first thing I asked her was if the nephrologist had been right; that my injections would lead to permanent scarring of the nerves.  While she couldn’t absolutely promise it wouldn’t happen, she assured me that there was about a 99% chance it would not happen, with the kind I get, at the frequency I get them and the needles used.

Whew.   One huge worry off my mind.

That led us into discussing scheduling another round of injections, which I felt it was time for, and she agreed.  A letter asking for approval was sent to my insurance company while I waited, glad to both have the option to have more injections and also secretly glad that I didn’t have to have them just yet while insurance dragged it’s feet.

And then today I got my approval, so I called the surgery center to make my appointment… and they could get me in as early as next week.   In the past I’ve always had to wait at least a month to get in for these; I’m not at all mentally prepared for next week, let alone I already have my work schedule for then.  I had them push it back a bit, but it’s still looming up at me from March 2nd.

Gulp.  I’ve complained enough about the recovery from the injections in real life and my old blog, and I very likely will again after this set, so I won’t go into it all again now.  But it is not fun.  And while I know it’s going to be really good for me in the long run, I also know that the first few days after are going to be awful, and the whole month after is going to be some degree of fucked up.  It’s hard to steel myself for, and I think it gets a little harder each time.

I will go, and it will be good for me, and I’ll be glad I went through it.  But it’s hard.

I will have to make sure I take lots and lots of photos so I have tons to edit during the days I’m bedridden.  At least that will give me something useful to do 🙂

The Golden Thread Of Fate

The Golden Thread Of Fate; this one feels fitting for the post.

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Models Worth Working With

When I began taking photos, I shot self portraits… partly because I was still learning and wanted to let my mistakes happen only to me, and partly because I wasn’t confident enough to share my visions with other people.  But after a few months of shooting myself, I decided to branch out and start shooting models as well.

I quickly realized that shooting models was going to take its own set of skills, mostly concerning my ability to convey my ideas.  But even more than that, I also realized that I really need a certain kind of model.  Someone who is as much an actress as a model; who is fearless in portraying raw emotions; who understands her body and how to move it; who is able, with the slightest glance, express incredible intensity.

That kind of amazing model is rare, but I have been fortunate enough to work with several who possess that skill… and even more fortunate in that they enjoy my work and come to model for me again and again.  They are brave girls, not afraid to be real and vulnerable.  They have faith in me and my concepts, following my direction even when, I’m sure, my ideas seem quite strange.  They don’t mind getting up before dawn to catch the most perfect light.  They’ll go for long drives with me into the mountains and jump in freezing water for just the right location.  They brave nature and the other, sometimes creepy, people we run across in our adventures.  And they consider the images we create together a worthy payment.

Thank you ladies, and two gentleman, for your trust and help.  You make things possible which I would not be able to do on my own.

Oh yes, don’t let me forget: I am featured in this month’s PH Magazine!

 

Sandy: Amazing model, dancer and friend.

Dedeker: Model, actress and expert emoter.

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