Maybe my breaking point came while I was watching old episodes of House, M.D this evening after talking with my husband earlier today about his latest misadventure with pain management. For those of those that aren't making the immediate connection between the two, House was a show about a brilliant doctor who had a painkiller addiction. Though obviously a work of fiction, the show felt very real to me with the questions it raised about the use of narcotics, chronic pain, and all the thousand of issues that those two things create when one is in the same vicinity as the other. It's a question my husband and I have been struggling to find an answer to for over two years now, and we're no closer to finding it than we were when we started.
I'm a smart kid, and so is my husband. But I have wracked my brain until I can feel it bleeding into my skull and I cannot see any good option here; neither can my husband. We have been to multiple spinal specialists, pain management doctors, massage therapists, and various and sundry oddballs with even odder treatment plans - nothing has yet been effective. He has endured spinal blocks (the first one resulted in a t.i.a, the second was completely ineffective), super-painful physical therapy and muscle manipulation, CT's with contrast in which the doctors could see approximately nothing because the dye couldn't travel past his eighteen-inch spinal fusion, every imaginable painkiller in every imaginable dosage and combination, and about 352 other things that I can't remember at the moment.
He's got more than one thing working against him in this fight and that's part of the problem. No, that's actually the majority of the problem. That, and the attitude so damn many medical providers have when it comes to narcotic use, but we'll get to that. Right now, we're fighting a war on multiple fronts on the same battlefield, if that makes sense. My husband's daily pain is probably more than what the average person could tolerate for more than a few hours, and that's on the good days. The bad days mean he can't move without the assistance of his wife or his cane, and has trouble breathing. That kind of pain puts a hellacious amount of stress on your system, which is dangerous when yours is held together with the biological equivalent of shitty duct tape.
So that's problem one - the sheer amount of allover pain caused by your spinal structure coming apart at the seams, compounded by the muscle pain that results from spinal fusions such as his because it essentially locks the muscles in that part of his back in place. He's unable to bend and flex like someone would ordinarily be able to, and those unused muscles cramp and twist into themselves and spasm like it's their job. Neat.
Now let's talk about the dural ectasia. That's a fun little trick his spinal column pulls when it doesn't feel like distributing the spinal fluid as it should, because it can't. Remember, Marfan's syndrome is a connective tissue disorder, a degenerative one that causes said connective tissue to degrade to the point of uselessness. Guess what's in your spinal column? Connective tissue ftw! It's wearing out, my husband's is, and it's just not strong enough anymore to push the spinal fluid up his spinal column like it should, resulting in dull hammer-blows to his lower back. No treatment for that one. At all.
Another spinal fusion, a smaller lumbar procedure below the large one, that might offer some relief, but since my husband's a wretched candidate for surgery, nobody will touch him until there's no choice. Even then, the improvement is only marginal, nothing life-changing. Oh, and that fusion that he had when he was 22 in order to continue being able to walk? All that hardware is sitting on top of the deteriorating lumbar spine, crushing what little is still functional. Yes, Alanis, that is ironic.
All roads lead to painkillers, at least for now, until his spine gets bad enough to endure the circus that any surgery he's involved with becomes. The doctor at the urgent care we visited a few weeks ago told us the same thing, that it was the only viable option she could see, given all the extenuating circumstances. I know it, my husband knows it, and though neither of us is pleased by the prospect of using heavy-hitter pain meds (I don't mean oxy, I'm talking hydromorphone) as a way to be able to get through the day, it's all we've got.
The wall we keep running into, though, is this nasty attitude of the pain management doctors. If I'm being really honest about it, though, it's not actually just the pain management guys that treat my husband like a liar and an addict; the ER docs do it, too, though usually with less venom and less frequently when I'm with him than when he's on a solo trip. It's the worst mix of heartbreaking and rage-inducing, every time I watch him suffer the indignity of trying to explain the levels of pain he's in while knowing that he's being judged simply for seeking help.
Please, before the medical professionals of the world show up on my lawn with pitchforks and torches, let me say that I know why you have to be cautious, really I do. I've worked with drug-seeking behavior before and I know the dire consequences that can come of being attached in any way to drug abuse. It's a prevalent thing in most areas of the country, but in my experience, it's even more of a problem in more rural areas, like the one in which I was raised and the one I live in currently. I know all this, I swear; smart kid, remember? Why, though, are the innocent being presumed guilty until proven innocent?
My husband has never done anything to earn such disdain, such distrust, and yet, we're having a hell of a time finding someone who will both treat him like an intelligent human being and work to get his pain levels under control. He's ready to give up and give in, and I'm running out of reasons why he shouldn't. He asked me tonight, "What in the hell am I supposed to do? I haven't done anything wrong, I didn't ask for this." I had no answer for him.
Despite all that, though, I'm not out of the fight yet. I still have a couple of ideas yet to be explored, ways to make this bearable for the pair of us. I still feel like, as low as I get, and it's been pretty damn low lately, I know we're not actually going to give up and give in, no matter how badly one or the other might want to. It's not in my genetic structure to do so, and I suspect it's not in his, either. So we'll carry on, wayward or not, until we figure this out.