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Archive for April, 2011

Condition Labels

I can’t remember if I blogged that I was going to have an MRI done… pardon me if I’m repeating myself.  The thought was that since the nerves I’m feeling chronic pain in originate at the spine, maybe (hopefully) there was something wrong with my spine, maybe even something fixable. So I had the MRI done which was indescribably awful.  By which I mean I really cannot put into words what exactly made it so awful, but it was.  When they put me inside the machine, it was in a clinical setting, knowing ahead of time that it couldn’t hurt me and would only last 25 minutes.  But this thing could easily be used to torture people and extract information.  Just don’t give them those key pieces of information.  If I didn’t have them, I’m sure I would have started spilling secrets about whatever the people holding me had wanted to know; never mind that it was all made up, just let me go.

I saw the pain doctor again today to go over the results of my.  My spine is disagreeably perfect.  There is absolutely nothing wrong with it which would make my nerves hurt.

There is a stupid condition where the nerves of your spine (usually the ones I feel pain in) just start hurting for no good reason, and you can’t fix it.  This is looking more and more likely to be the case.  Which really is more or less the same diagnosis I had before, except I’m blaming spine nerves instead of kidney nerves.  But I did very much want there to be something wrong with spine; something I could do something about.

And I also found out that my pain specialist is moving to Portland in May.  Wah 😦  Her replacement may be the doctor who did my injections, whom I liked a lot, but I’m still very sad to see her go.  She’s been trying so hard to help me.  She’s even researching herbal remedies in her special doctor’s-only database to help with fatigue to see if she can suggest anything for me, which isn’t even what I see her for.

Anyway.  Geoff has been cracking me up recently.  He read this letter written by another chronic pain sufferer to the “normal” people in his life, correcting misconceptions and trying explain it in a way the “normal” people understand.  I thought was spot-on, and applied equally well to my pain as my fatigue.  One particular paragraph struck both of us:

“If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker,(or poorer!) not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it.”

Now it’s true that when people suggest things for me, it’s always well meant, and I don’t think I’d go so far as to tell people not to suggest things to me.  What if they somehow heard about something that actually would help?  But it’s also true that the vast majority of the time it’s something I’ve already heard of, usually already tired, and has not worked.  I know that when people say things like this, it’s from a genuine desire to help, but it can come off as condescending; them trying to educate me about the supplements I should be taking.

As a result of this letter, every time I have complained about any kind of pain in the last few days, Geoff will say, “Have you tried ass-per-in?”  He over-enunciates every syllable, saying it slowly and clearly so I’m sure to understand him.  Then he goes on to explain how it’s a new wonder drug and designed just to treat pain! It’s really adorable and never fails to make me laugh.  Oh, by the way, have you heard that laughter is the best medicine??

Mostly I’m just tired, and tired of feeling bad and being tired.  But I did manage to do a bit of editing in the midst of all this moping and moaning, and worked up a couple photos from my most recent shoot.  This shoot was with Abby Rose, whom I have a six-degrees-of-Kevin-Bacon sort of connection with.  She was lovely and didn’t give me a hard time for getting a little lost of the way to our location.  This particular photo was inspired by Tool’s Swamp Song.

Wander In And Wandering

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Restoration

There are just a few days left to get in on Introspective at it’s early bird rate.  If you’re interested in taking it, I suggest signing up before the 15th to get the special rate!

I have been having a hell of a time fighting my chronic fatigue lately, so this post won’t be very long.  Tired, tired tired.  But of course I have to keep going to my all-to-frequent doctor’s appointments, researching new supplements, scouring the ends of the earth for any glimmer of hope, while feeling more drained every day.  Sleep deprivation is used as torture for good reasons.

On a lighter note, I came across a Meetup in my area for CFS people, and my first thought was about how they must never actually meet up together because everyone is too tired.  Maybe they all have people who drive them 🙂

And so that I’m not a complete downer, here is a happy photo I completed recently called Restoration.  Being in nature has such an uplifting effect on the soul; a special healing quality unique to it.  Thanks to Aly Darling for modeling for me 🙂

Restoration

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