Thursday, May 29, 2014

One Fine Day

     One of my greatest strengths also happens to be one of my biggest weaknesses, which, believe me, is no end of annoying. I think a lot of people are like that, though. I feel like most people have that contradiction within themselves, that thing that allows them to succeed, but only as long as they keep it in check and don't let it run away. In my case, it's the fact that I'm a long-term, overall-picture kind of thinker. I tend to loose the pieces of the puzzle because I'm so busy trying to see the end result and making sure it's going to be what I want it to be. It's amazing how much you lose sight of when your brain is hardwired to keep the eyes on the prize.

     I've been reminded of that lately, the idea of stopping to pay more attention to what's happening right now, instead of always trying to figure out what's coming up around the corner and how we can prepare for it. Adam and Carrie got married on Saturday, and it was a day that many of us had been looking forward to for awhile. It was one of those days that, miraculously, didn't feel horribly rushed or tiresome or as though someone was always in one place when they were supposed to be in another. I can't even refer to it as a beautiful chaos, because that would be inaccurate, as it wasn't chaotic at all. It was just...so lovely. 

     Obviously, I can't speak for everyone involved, but my officiant husband and I enjoyed our friends, our family, each other, without that sense of "Ohmygod, we're late and we're supposed to be there and I FORGOT TO WEAR MASCARA, WE HAVE TO TURN AROUND!!!!" that I've known too many weddings to suffer from. This one didn't. There was love, there was dancing, there were old friends my husband hadn't seen in far too long, and there were new friends for me to connect with. Yes, great, that's wonderful, but what the hell does a wedding have anything to do with my husband's Marfan's? The point I'm trying to ever-so-gradually get to is that it was the kind of day that we both sometimes forget can happen, because his disorder pushes the possibility of what could be and the memories of what has been right out of our heads.

      I suppose I should clarify that last to make it apparent that it happens to me far more than it does him, because as I mentioned before, I am by nature a big-picture girl, not a take-it-as-it-comes girl. Rolling with the punches, while a talent of mine in certain situations, is not really something I do across the board. When you combine those tendencies with the everyday uncertainty of my husband's health, it can be a bad situation, one that effectively blinds me to what's happening at my fingertips. 

       In this case, instead of worrying if the percocet was going to ease the pain in my husband's spine long enough to perform the wedding ceremony, I made a decision to say, "Screw it. Not today, Marfan's, not today." And you know what? The world kept spinning, my husband did not fall apart, and we had a great day, both of us. I'm hoping, if I can make progress in figuring out how to safely wield my double-edged sword, that we'll start having those days with increasing frequency.  

Thursday, May 22, 2014

Carry On Wayward Son

     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. 

Tuesday, May 6, 2014

Gentleman Junkie

     It never works out in my favor when I try to force myself to blog, not once. I tried to last weekend and this post was something completely different, something that I was tripping all over. As frustrating as it is when that happens, because I'm denied a pressure-release, I've learned to ride it out. Now, it's easier, what I want to say, how I want to say it. Thank God for that.

     My husband had an appointment at his primary care physician's office this morning, but not with the doctor. Instead, he saw the awesome nurse practitioner who is empathetic and listens to him and is just an all-around incredible human being. This appointment was one that my husband didn't make for himself, but rather that the NP made for him to come in so that they could find a solution to the pain issue that's been front and center in our lives for too damn long. While our doctor's office really is that great, that they'll go out of their way to schedule you for appointments that you didn't know how to ask for, this wasn't quite an unprovoked meeting of the minds.

     A little over a week ago, not last Friday, but the one before, my husband finally decided to go to the ER to get some help for the spinal pain that hadn't allowed him to really sleep or eat for almost forty-eight hours prior. Why'd he wait so long, when I've made it clear that we frequent the emergency room like most people frequent Target? Because. Appearances matter, like it or not, and until last weekend, my husband could, with very little effort, easily be mistaken for a stereotypical homeless junkie.

     I really, really didn't want to write that last sentence, because it feels like I'm just reinforcing the image some people seem to have of anyone who's less than clean-shaven.  I myself work in a large-ish law firm and, not surprisingly, conservative, business-casual attire is required. This means I have to keep my hair a normal-ish color, not the purple I so desperately want, and I have to ignore eight of the ten piercings in my ears, because to do otherwise doesn't really present the image I'm sure my employer is going for. I like my job, want to keep it, and  I understand why I can't wear my beloved Dr. Martens and band t-shirts to the office, but it doesn't mean I'm not inwardly cringing at having to spend forty hours a week in ballet flats and cardigans.

     I've learned, over the time spent in medical adventures with my husband, that appearances matter a hell of a lot when it comes to narcotics and any treatment involving them. It sucks, it's horrible, and it's the one of the two things that's ever made my fingers itch to beat someone stupid with their own shoe, but it's also a nasty catch-22, because it's one of those things that you can't really complain about. Why? "DRUG SEEKING! DRUGSEEKINGDRUGSEEKING! ALL DAY LONG, DRUG SEEKING!" And once that particular brand is burned into your medical records, it never leaves.

     We've encountered it for a long time, my husband and I, but never with the frequency that we started running into when we got to North Carolina. I have no idea what it is about this city, but Jesus Christ, this town hates painkillers. Or maybe it likes them too much, got into trouble, and then had their hand slapped. I don't know. What I do know is that I don't feel like my husband ever had this much trouble with being treated like an addict in St. Louis as he's had since we've moved here. No idea why. None.

     He tried a pain-management doctor, and he was treated so poorly that he asked his pcp if he could refer him to another one. My husband told his doctor why, and he was happy to refer him somewhere else. Went there, and that time, my husband made sure to bring me with him. It's sad, but he gets better treatment when I'm around than when he's by himself when it comes to anything involving narcotics. I mean, to the point that he will wait for me to get home, suffering and barely able to move, so that I can go to the ER with him, because surely a true addict wouldn't have a well-dressed, wells-spoken little wife, right? That's the logic the ER doctors seem to use, so we do what we can to play the game.

     The second pain-management doctor was worse than the first, and only started treating my husband like a human being with a disorder than no one seemed to know how to accurately treat, when he brought up the fact that he'd only wanted the painkillers to be a stop-gap, not his actual treatment. It was at that point the doctor became an actual human who treated my husband in kind, after he pointed out that he'd never wanted to be on painkillers for any length of time and what other options were there?

     None, as it turns out. None that were viable, anyway. So he's just been trying to push through the pain, working and living with a screwdriver prying his vertebrae apart. That's how he describes it to me - a flathead screwdriver wedged between the still-movable pieces of his spine, trying determinedly to break it apart. Some days it's a gentle persistence, some days it's particularly indelicate maniac.

     He was afraid to go to the ER, afraid of how he knew he'd be treated if he went there seeking relief from the burning in his back, the shooting pains down his legs. Two and a half days he stayed like this, wishing for a break so he could catch his breath. It didn't come, so he finally made up his mind to drive himself to the ER while I was at work - he couldn't wait. Okay, that's cool, I'll come get you on my way home from work.

     Already-long story short, my husband had the worst experience he's yet had at a hospital. The asshat who was overseeing his "care" did nothing but take an x-ray that showed nothing except what my husband had already told him was there and send him on his way with extra-strength Tylenol and a smug, "I'm feeling generous today, or you wouldn't have gotten that." (No, really - he actually said that to his patient. Fuck. You.) I wanted to cry from the unfairness of the treatment when my husband texted me to tell me what happened.

     Part of that attitude, I get. I'm far from stupid and I know how prevalent the abuse of prescription painkillers is. It's everywhere, rich and poor, polo shirts and Ministry tees. It's both sides though! Really, it's just as much the doctors who abuse the privilege of being able to write prescriptions for those drugs fault as it is the abusers. That's what kills me, when I see them look with distaste at my husband, when they ask him pointed questions that he learned a long time ago don't really mean what they say they mean. It kills me that he's seemingly being punished for a crime not committed, and for what? Because he doesn't/does look the part, depending on how you look at it?

     I would say, "Fuck that noise," and walk away, except the noise drowns everything else out; neither of us knows what to do about that.