Friday, March 17, 2017

Nowhere to Run

     I hate dealing with the pain management aspect of my husband's disorder probably more than I hate anything else about it. The mental health aspect is probably my second least-favorite, but even that pales in comparison to the fuckery that is pain management. I hate it, I hate it, I hate it. I can't even think of a clever or non-repetitive way to say that, because it makes my brain want to shut down.

      The problem with pain management as it's currently treated in today's society is multi-faceted, as I see it. The most immediate issue is that it's just not very effective in my husband's case. He had his first spinal fusion when he was only twenty-two, and it wasn't a small one; unlike many spinal surgeries that fuse two or three vertebrae of the spinal column together, his was eighteen inches long and involved three titanium rods. It's the center of his spinal column, the thoracic area, that's fused, and all that hardware is now crushing  his lower spine, or the lumbar area. That, combined with the degenerative issues brought on by the Marfan's, is where the problem now lies.

     He's been on painkillers for more than half his life at this point, and nothing really works very well anymore, as you might have guessed. Anybody who's been on painkillers for any length of time has probably experienced the acclimation to the drugs that comes along with it. Your body can adapt to just about anything, and narcotics are no exception. Eventually, heavier and heavier doses of whatever you're on will be required to achieve the desired effect. In some cases, like my husband's, you build up a tolerance so that your doctors have to start prescribing you things that generally are only used in the worst situations, like the fentanyl patches he currently wears. They don't really do a whole lot beyond keeping the worst edge of it at bay, at this point in the game, but there isn't anything stronger.

      Beyond the practical issues, though, is the one that really puts a bee in my bonnet, as the saying goes - the societal issues surrounding pain management. There's this persistent, pervasive image that it seems like I run into everywhere - people who use pills/patches/needles are junkies, and screw them, because their hell is one of their own making.

     I'll be the first one to admit that yeah, I'm sure that's the case sometimes. Absolutely, there are people out there who would run over their own grandmother if it meant they could snatch her bottle of oxy and get high for a couple of days. What about the others, though, the ones who don't want to be on painkillers, but whose only other choice is to go slowly insane from the pervasive pain that finds its way into every crack of their bones, every wrinkle of their muscles? My husband has told me before that the best way he can describe the nerve pain in his spine is that he imagines it to be what it would feel like if someone shoved a hot flathead screwdriver between your vertebrae, and then twisted it.

      I can't even get my head around what that must feel like, and I like to think I have a pretty good imagination; I sincerely hope I never have an opportunity to experience anything even close to that. And yet, that's what's always waiting, hiding with its bony, wretched fingers just waiting for a chance to dig into my husband's nerves and send them screaming. You tell me - how else can that be mitigated but with heavyweight painkillers? How else do you help someone try to live with a body that's crumbling from within? Sometimes, your only option is to fight fire with fire, or, in this case, fight fire with a synthetic analgesic.

      The fentanyl patches he's been on for the past three years or so have thus far been the most effective method we've tried, not only because it's the most powerful, but because with the time-release method, it's a slow, steady dose with little room for human error. (I say that with the understanding that my husband only uses his patches as prescribed, and I know this isn't always the case with everyone who uses them.) With pills, there's a lot more room for error, even down to a person metabolizing the meds at different rates, thus causing different degrees of efficacy.

     Now, though, it's apparently becoming an issue. For reasons unknown to either of us, his pcp has suddenly decided, after a year of treating him, that he needs to see a pain management specialist in order to continue his current regimen. I know it's not the worst thing in the world, and probably a small issue in the grand scheme of things, but it still leaves a bad taste in my mouth. Pure speculation on my part, but it feels like she wants to be disengaged from the whole pain meds aspect of his care, because they're icky. It's the same feeling I get whenever we go to the pharmacy to get his monthly prescription; it's like no one wants to even handle the box the patches come in.

     I guess then next step then, is to see what the pain management specialist says. I know my husband wants them to figure out a way to get him off the fentanyl altogether, but in my opinion, and maybe I'm way too close to the situation to be able to see things objectively, I don't know how that's going to be a viable option. I know how much he hates the drugs, I know how much he hates the unpleasant side effects, I know he hates that they don't really do much more than keep him propped up. At this point, though, I see them as a necessary evil.

      Consider for a moment the practical implications - what about the time off he'd have to take from work? Even when you're under a doctor's care, coming down off that level painkiller is no joke, and the withdrawal symptoms from fentanyl can come on hard an fast. Believe me, I've seen it - if my husband doesn't change his patch with almost dead-on accuracy, meaning he can't wait an extra six hours or so to do it, if we're not at home, he feels it. Hell, I'm not even the one wearing them, and I can look at him and know if he's running late. Is his employer going to be okay with the sick time he's going to need?

     And once he's done with the patches, what then? It's not like his spine will be miraculously fixed. It's actually a whole lot worse now than it was when he started on pain management. So what's the substitute for painkillers to allow him to live his life? What's the magic bullet? I mean, this is a damned-if-you-do-damned-if-don't situation if ever I've seen one.

      Maybe I'm wrong. Maybe this pain guy, who is already familiar with my husband's case, as he was his pain management doctor previous to our move to North Carolina in 2012, will have discovered some wondrous new treatment that neither of us is aware of. I don't think so, though.