Wednesday, September 3, 2008

Last Resort

The acupuncturist tells me to meditate while I wait for the needles to work, to imagine my spine as a red dragon unfolding on water. Wherever there is tension, I'm supposed to allow it to unwind and let the water hold the dragon up. My dragon's heart chakra weighs him down and he starts to sink. He's sad, he can't let go. Truly, in my mind, I can't get him to stay afloat. He needs an assistive device. I give him a inflatable liferaft, just his size, to hold him up. It begins to sink too. I put wooden beams into the water, sinking them into the silt below, to hold up the liferaft. He settles there, he'll stay. But he needs those supports. You can see where he won't lie quite flat, there's that tendency of the heart to pull him down again.

My pain has increased and I have difficulty getting out of the house at all. Not just my spine, but my knee, my hand, my heel, my hip hurt, and with the extreme level of inflammation comes a high level of fatigue. As a last resort, in an attempt to avoid taking Enbrel since I'm prone to resistant pneumonia, I've gone to a different chiropractor, one who is also a licensed acupuncturist and herbalist, who knows energy techniques, and who was a practicing orthopedist in China. He practices Western medicine in the East and Eastern medicine in the West. He knows when to refer people to traditional doctors. I tell him about my surgery; "yes, that was a necessity," he says. I relax. I don't have to defend here, as I do with my former chiropractor. Since I am limited in time, money, and energy, I do seek multiple modalities at the same time when I can get them, especially when insurance will cover, as it does here. I know gentle chiropractic will help, but acupuncture, say the clinical trials, is not helpful with spondylitis, though I'm still not entirely convinced that's what it is. (Alternate diagnosis: denial.) It is clear I have sacroiliitis, a definite inflammation of the SI joint that is characteristic of spondylitis but which can occur for other reasons. Am I just an atypical case? A lot of women are atypical cases. He thinks it's probably it's not AS either. But he does think there are both arthritic and biomechanical changes. When people ask me what's wrong with me, I hardly know how to answer, not only because of the negative and loaded phrasing of the question, but I don't know for sure what all the causes of my pain are, and there are multiple and interrelated causes. Everyone has their opinions, as do I.

He asks me when I started using the scooter. "January," I say, "but I truly needed it last September and tried to get one then." He writes down "September." He hands me herbs to take. This I'm not sure about. There's a long list of ingredients on the side, many of them familiar, but I can't research all of them. I imagine the rheumatologist asking next week, as he always does, if I'm taking any different medicines or supplements. "Yes, but I'm not really sure what," I imagine saying. Shouldn't I keep the same skeptic's mind as I do with Enbrel? I'm told to avoid cold food, cold drinks, cold air, that my kidneys have slowed down and my qi is affected. Since I spent the night cuddled with an ice pack, I'm not surprised he can pick up on my frozen dragon spine.

What I do know about Enbrel is that it works and works well for about half of patients with spondylitis and other forms of arthritis. According to the clinical trials, patients did no better after 6 months on a placebo than they did before; in some ways they fared worse. And since spondylitis is progressive, they might have fared much worse in a few years. But for patients put on Enbrel, there was a signficant decline in pain and disability, to about a third of the previous levels. Nevertheless, Enbrel raises the risk of cancers, of multiple sclerosis, of blood disorders many times over. Interestingly, for both groups of patients, the doctors assigned the patients the same scores the patients assigned themselves for level of health, disability, pain.

The woman I know who takes Enbrel is hardly a poster child for it. Last spring she raved about her arthritis drugs, so I thought I'd get a pep talk from her. Now she has blood, kidney, and stomach problems and surgery for some of these. She is on a liquid diet. She is in crisis. Still, such side effects are rare. However, I do have small children and a propensity for upper respiratory infections already, and Enbrel is an immunosuppressant. I know someone who died from pneumonia last spring. My husband's lost his voice with an early fall respiratory infection he caught from my daughter. I had pneumonia for well over a month last winter. I don't like having to make decisions like this. I can live with a fair amount of pain. I don't expect to be pain free. But I don't like the idea of a toxic drug. I do like the idea of being able to be out in the world more.

On the way out, someone parks in the wheelchair access aisle. It's a loading zone, he informs me. There's a sign saying so, he says. It looks just like every other access aisle next to a ramp. He leaves, and I see there is no sign. He's lied. Maybe I should be more forgiving. A sense of entitlement is so difficult to recover from.

And, and, and. One of the spine doctors told me that the needles for testing nerve function are like acupuncture needles. Said by someone who's probably never seen an acupuncture needle but who's used to working with large gauge needles to inject thick steroids into spinal spaces. There's still a difference. Acupuncture doesn't even hurt. Those needles aren't tiny.

Update: in-laws did not go on cruise, going tomorrow. Wish they'd told us last night, but anyhoo.


Donimo said...

I really feel for you as you wrestle with the decision about the medication. It's very hard to look at side-effects and weigh out your options. And this drug is targeted at a disease you're not certain you have, right? I wonder if your new chiro would have an opinion on if there are things you might be able to do naturally that might help prevent any toxic effects of Enbrel. I can understand your desire for some relief. Good to hear you have a multi-modality doc who is covered. That's quite amazing, money-wise. I'll keep my fingers crossed that he can help you. As I sit here with my SI joints (among other things) screaming, I'll send floating, relaxed dragon images your way.

FridaWrites said...

I'll send you floating, relaxed dragon images back. My SI joints are screaming with you--they're really a pain, aren't they?

Enbrel can also help with other forms of arthritis, so if it's any of the inflammatory arthritis conditions, it should have a 50-50 chance of working; I know it's not osteoarthritis. I'll revisit this again with the rheumatologist this week--my main trouble is that my pain is no longer worst in the morning, though it was at one time, and it no longer improves with exercise/movement throughout the day. So I don't know if that means I don't have it or if I just reached a certain threshold of inflammation. He actually wrote down spondyloarthropathy, which is the more general category under which AS falls, though he said AS--I don't know if that makes a difference. I think if I went to several rheums. they'd all give me different opinions.

With all the sneezing and snuffling going around in this house, I'm temporarily germaphobic even without being on Enbrel. Erk. I've avoided it so far. Whereas I like to be supernurturing when people around here are sick, I'm starting to pull back from that after the pneumonia episodes; they get sick a few days, I get sick 3 weeks to a few months.