The Living Artist

Today I’m semi-voluntarily undergoing withdrawal from hydrocodone, otherwise known as the big, bad, EEEEEVUL Vicodin.

Why am I on it in the first place? Because of chronic pain caused by a car accident two and a half years ago. I’ve tried many other medications; this, the lowest-level narcotic painkiller, is the only one that’s ‘worked’ without horrendous side effects.

‘Worked’ has to go in quotes, you see, because it doesn’t kill the pain. It just makes it possible for me to get through my day. But tolerance keeps building up, so I have to take as absolutely little as I can manage. Most of my weekdays are spent in bed because that aggravates my pain the least. I take my kid to and from school, I do the grocery shopping, and I lie in bed doing what art and writing I can, when the pain is low enough that I can still think. That’s my week.

I see my doctor once a month for a new prescription, because she won’t give me one with refills. (To be honest, I’m unclear if this is her policy, the hospital’s policy, or state law. My impression is that it’s the hospital.)

Last month the one person in her office who knows how to work the computer was out, so I had to have my husband call in to make my next appointment. By the time he got through to the office (which is incredibly hard to reach by phone) their next available appointment was 6 weeks after the last one. He pointed out that I would run out of my medication before then, and they said they’d see what they could do. Of course we then heard nothing.

I tried to stretch it out. I did. Some days I can get away with only taking two pills instead of three; my pain levels vary with my activity level (hint to the ignorantly “helpful”: more activity doesn’t help my pain, it makes it worse), the weather, my stress level, and my nutrition. Some of those things are under my control. Some of them, like the fact that I have a very active child that I *must* be medicated to deal with for more than ten minutes at a stretch, are not. And October was a busy month for us; lots of travel, which also jacks everything up.

So here I am, more than a week before my next appointment with my doctor, and I have three days of pills left; four if I stretch it. My poor husband has been trying to get ahold of my doctor all day, but right now I’m still in limbo. So I’ve not taken a pain pill in just over 24 hours.

I could wait until I’m completely out, I suppose, before inflicting this on myself. Then I wouldn’t have a choice, which might make it easier. But doing it now accomplishes a few things.

First of all, I remind myself that I’m not an addict*, even if I am experiencing physical symptoms. The remaining pills are within view from where I write this, and I don’t feel a temptation; if anything, I’m repulsed by them. I hate the fact that I need them to function. I hate that I’m going to have to take one in an hour before I go pick up my kid from school, just to be able to drive safely. It’s a dependency – a medical requirement for a thing in order to function normally – and that shouldn’t be pathologized the way it is.

Second, I keep a safety net if something happens that I must respond to, and I need the medication to make my body work. Certainly if I have no new medication by the time the weekend rolls around and my kid is home for 63 hours in a row, I will need it. I will hate it, but I’ll use it, because I do everything I can to have this hell impact my kid as little as possible.

Third, the knowledge that I did exercise some degree of control over this process is really the only thing getting me through it.

I suppose in the grand scheme of things it’s not so bad. Some fever, chills and sweating, a wretched headache. Oh, and the unmitigated PAIN that is the reason for me being on this drug at all. I have the luxury of being able to take this day – hell, this week – off to deal with it, for all that it drives me up a wall to be so useless.

I’ve been through several rounds of physical therapy before. Both times, it felt good to be doing *something*, it was useful to isolate the particular areas I was having problems in before I really knew what was wrong, but with one exception it really didn’t do much in terms of making me feel better. (The exception was getting my TENS unit through PT, which is a very useful tool to help me manage my pain.)

So when the latest doctor suggested PT yet again, with the added wrinkle of anesthetic injections, I was skeptical. Desperate enough to try it, but skeptical.

I’ve had two appointments now – and not even an injection yet – and it’s close to miraculous.

It hurts, of course. It hurts like fuck, 8- and 9-level blistering, searing, close-to-blacking-out pain. Afterwards, I feel…. dead, heavy, poisoned, with a desperate need to drink liters upon liters of water. Yesterday I had to do 15 minutes of breathing and energy work in the car after the appointment before I even felt safe to drive. I get home, I fall into bed, and sleep like the dead for two or three hours.

And then I get up. And I feel… fine. Sure, I still have limitations, and if I hit a tender point it still hurts like hell, but I can move. I can play with my kid. I can exercise. I can think. I was even able to stop using my cane so much.

Two days after the first appointment it wore off, but you know, I’ll take those two days! And if only two appointments have done this for me, it no longer seems like such an unimaginable stretch that I could get my life back.

To get theoretical for a moment, it feels like I’ve been storing my pain and stress for the last (nearly) two years in my muscles, and the deep massage of PT is releasing that. I then have to flush it out, with the water drinking, the rest, the energy work. (Have you seen The Green Mile? Where the guy inhales the death of the mouse and then exhales it like a cloud of locusts? It feels like that.)

I get my first injection on Thursday. It’s got me nervous, and the copays are killing us, but I will put up with a hell of a lot in order to feel human again. Two appointments is hardly a robust sample size. And I don’t call miracles lightly. But this sure feels like one.

What a difference it makes to have adequate pain medication.

Saw a new doctor yesterday, who among other things did something I’ve been trying to find someone to do for over a year now: talk openly about the narcotic medication I’m on (hydrocodone). I discovered that the dosage I’d been on (which is no longer working) is actually incredibly low, that developing a tolerance is completely normal and that needing more over time is not a sign of addiction. She said it was obvious that I was not addicted (which I knew, but it was so refreshing to hear an MD say it), and wrote me a prescription for a much higher dosage, allowing me the flexibility to figure out what works for me.

I came home, took the higher dosage, and my pain went down to a 2. Or, as my husband kept saying throughout the afternoon, “TWO?!??” To put this in perspective, the last time I was at a 2 was when I was in the ER with food poisoning and they had me on IV morphine. The last time before that…. might have been before the accident. My “normal” is a 6-7.

Today it’s more like a 4-6, but, you know, I’ll take it. Have a bit of a sedation effect (annoying as hell but easier to ignore than pain!) but I expect that to wear off within a week or two.

On the downside for this new doctor, she poked me painfully hard and it took several outbursts from me to really register how sensitive I am. She also claims she can cure fibromyalgia, and I’m incredibly skeptical about that. But a lot of what she says and wants to do makes sense, and I don’t have to believe in her overall view in order to make use of her treatment.

The treatment (in addition to better pain meds) is basically injections of anaesthetic to calm my nerves down enough to do some deep bodywork. My structural alignment is all kinds of out of whack – unsurprising – and I have trigger points galore. While I have strong doubts that my alignment is the root cause of my neurological issues, I do believe it’s part of the vicious cycle making things worse. So it’s worth a shot. Literally in this case.

Edited to add: Ok, upping the meds isn’t going completely smoothly. Headaches and spaciness not fun. But again, I have the flexibility now to find what will work best.

There are the days when the pain is distant, muted, and you feel light on your feet from the absence of its crushing weight.

There are the days when the pain is present but separable, you can focus on your work without too much extra effort, moving slowly and carefully.

Then there are the days when the pain constricts you, restricts your activities to only what you can do from your soft and safe space, propped in your chair, medications close at hand. But at least you can still think.

Then beyond that you find you can’t think, and you grind away the hours with mindless, repetitive web games, anything to distract you from the howling fire in your veins.

And then you can’t even do that. You sit and stare out the window, tears rolling down, unable to move or think. Just… waiting.

The below was conceived and written as a guest post for the inspirational Loolwa Khazzoom at Dancing With Pain.

I used to be very grounded in my body. I was a dancer, an artist, with big expansive movements, carefree in my expectation that my body would do what it asked without complaint. The first thing people would comment on upon meeting me was the grace in my movements, despite having had very little formal dance training. Then I was in a car accident, and everything changed. What I say below I offer not as any kind of an expert, but merely what I have learned in the last nineteen months as a person with chronic pain.

It’s not been easy. I am nowhere near the kind of dance that Loolwa describes in her work (oh, how I wish I were in LA this week so I could take her new class!). I spend most days curled in a comfy chair, trying to find mindlessly repetitive ways to distract myself from my screaming nerves. But in those odd moments between where the pain subsides, I can move, and have learned some things about how to move safely and with less pain.

Read more…

Okay, I just – I have to rant about this.

Today, over a year after the car accident that destroyed my car and permanently damaged my back, the insurance company made us an offer for less than 10% of what we were asking for, which in turn we had made clear was far less than we believed the injury was worth. Medical bills only, not a dime for pain and suffering, the loss of my career and ability to be active clergy in my church, the damage it’s done to my marriage and my family. Apparently this is a widespread tactic in “the new economy”. Next step: lawsuit. Another one to two years of bureaucracy and legal fees.

The truly appalling thing is that I’m only too aware of how much privilege I’ve had throughout this process. I’ve never been without health insurance or medical care; we have had a lawyer from the beginning, and the resources to make the endless calls and deal with paperwork and get more childcare to make up for what I can’t do anymore.

But if I give up now, the insurance company will have won, and that’s just wrong. I can’t sue them directly, as their contract was not with me but with the other driver; but they are required to defend him in court, and then he can sue them if he wants. But the only options I have now are to take the chump change or sue.

This drills down to the heart of what I believe is wrong with the current health care system. Crisis-based necessities should not be for-profit. An organization cannot serve two masters; they cannot do both what is right and what maximizes shareholder value. Which means the people who need help get screwed, again and again, increasing the class divide and the hopelessness of the majority of people that anything will ever change.

And the free market is no solution. Someone with a pressing medical problem does not have the resources to go shopping for the best option. Nor does anyone know what issues may crop up in future, no matter how good care they take of themselves. No amount of exercise or healthy eating would have prevented that kid from rear-ending me, or mitigated the half-million dollars in medical bills I will accrue over the course of my lifetime due to this. An informed choice is not possible; so, again, the people who need help get screwed.

All right, it’s time for me to come out of the closet.

I’ve been doing my best to make this blog just about art, but that’s not working. Because I am (gasp!) a whole person, with a lot going on in my life, and really this blog isn’t an art blog, it’s an artist blog, and a blog about, or at least by, one particular artist: me!

So, some other aspects to my life. I’m severely hard of hearing. I have ADD. My father is a science fiction writer. I’m a mother, wife, former software engineer, pagan, polyamorous, bisexual. I’ve played piano since I was five. I’m an ordained priestess of EGC. I love to dance, especially bellydancing. Six months ago I was in a car accident that injured my spine and, while I escaped functional impairment, it causes me severe pain daily.

All of these things affect my art and my life as an artist. That last, however, is really what led to this blog being created, because I wanted a space in my life that wasn’t about the pain, where I could connect to the artist’s mindset and my greatest love even when I wasn’t physically able to paint. (And with that I realize that “pain” is 4/5 of “paint”. How ironic.)

Unfortunately with that subdivision came the feeling that I couldn’t mention my injury or pain here, even when I was having such a bad day that the pain was all I could think about.

Today is such a day. And so I am giving myself permission to be in pain even here, in my safe space. Because that’s who I am today.