Sunday, July 22, 2012

The Times They Are A-Changin'

     I've kept a journal since I was fourteen and with every passing year, I'm more and more glad I have that record of who I was and who I've become. While reading some of the earlier entries are painful at best, it's something that I do from time to time. It helps when I get down on myself for not being the person I think I should be or thinking things I wish had never crossed my mind. This blog serves much the same purpose, I've discovered, albeit in a much more public way.

     My high school self, not nearly as obnoxious as some of the brats I've run into who now populate my former high school, was a rather overly dreamy, unfocused sort of girl. "Idealistic" doesn't even begin to cover it, truth be told. And while there are certain elements of my personality that are still here today, ones that were probably present the day I was born, there are several other that have definitely changed over the course of the years since I filled those black and white composition books.

     There are some things in there that make me shake my head and sigh, some that make me laugh (hello, bad, angst-ridden poetry!) and a few that just make me cringe. There's one in particular that I must have written when my mother pissed me off about something or other that's just ugly. It actually bothered me so much that I briefly considered ripping the pages from that particular journal so that I wouldn't ever have to be reminded that those nasty thoughts were mine.

     I realized, though, that it's far more productive and conducive to becoming the person that I want to be to read over those records, analyze them, and think about how far I've come. Or not come, as the case may be once in awhile. If I get rid of everything about me that I don't like, then that's just being dishonest about who I am/was. And that's not something I ever want to happen.

     Reading back over some blog entries, I saw that the same thing still happens more than a decade later, though in my heart of hearts, I wish it didn't. I read back over things and realize that those feelings don't hold true anymore. Hell, maybe they weren't all that true to begin with and I was just having a bad day - I don't know.

     One entry in particular that bothers me is Harder, Better, Faster, Stronger because when I read it now, I realize that I was not so much discussing an issue as making trouble in my head where there was none. That entry bothers me because I actually put into words that I felt my husband and I weren't equal partners, that I had to pull more weight than him. What an awful thing to think, especially when I knew it was one of his weak points and that he tried to hard to compensate for what he saw as his shortcomings.
     I wanted to delete it and I almost did, until I realized that it was actually a good thing I'd gotten those feelings out and into the open where I could break them down and analyze them. When I did, it became very clear to me that it wasn't a matter of my husband pulling less weight than me - it was just a matter of figuring out how to accommodate what he could and couldn't do.

     It's akin to when we figured out that yes, my husband could actually help me with the yard work at our house, so long as I pushed the lawnmower and he used the weedeater. Perfect solution - I did the thing that could cause his back to go out and he took on the equally-important, less physically demanding job that I hated doing anyway. Reading back over that entry made me think just how far we've come as a unit to be able to make little tweaks and changes like that which allow life to roll on with the least amount of fuss.

     I'm not saying that we've got it all figured out, because we're far from it. What I am saying, though, is that I'm glad to have record of the ugly, disheartening thoughts so that I can see and be glad that I'm totally capable of looking at things in a new light. It's becoming clearer and clearer to me that the key to getting over the next mountain is just the approach I take in contemplating whatever problem is at hand. It sounds so cliche that I hardly want to say it, but I'm beginning to think that simply looking for a solution outside the straight and narrow path might just be the key.

Friday, July 20, 2012

Cluck Old Hen

     Is that what I've become? An overly-involved wife clucking concernedly around my husband's hospital bed? I never thought so and my husband has never voiced that opinion to me, but after a conversation/argument with my sister tonight, I find myself doubting what role I truly play in my relationship with my husband.

     I know, I shouldn't let something as seemingly insignificant my little sister's shitty mood cause me to question myself this way. The thing is, though, her brain is the closest thing to my own and I was caught off guard that this thought was raised at all when it had never before occurred to me. We've disagreed before on the topic of how to care for our broken mates, but this is an angle I've yet to explore.

     Lizzie's perspective on the whole thing is that her partner is essentially on his own when it comes to his medical care. They're not married, but they've been together longer than a lot of married couples I know. Seven and a half years, to be exact. They've been through a break-up, an engagement and a subsequent broken engagement and somehow they're still the only one the other wants. While I'm happy for them to have found each other and at such a young age, she and I differ wildly on our level of involvement with our respective partners' respective medical conditions.

     Her boyfriend somehow acquired ulcerative colitis and it's a real bitch of a disease, trust me. In its own way, it's as difficult to deal with as my husband's Marfan's Syndrome. Not as rare, certainly much more treatable and not degenerative in nature like my husband's disorder is, but God knows it's caused more than enough trouble for one person to deal with. I feel for him, for my sister.

     And yet, she's so much more hands-off than I am when it comes to his medical treatments. They've been together more than twice as long as my husband and I, but she essentially leaves him to fend for himself whenever he gets sick. I don't understand this line of thinking, not when I know she loves him so much. The only rational explanation I can think of is that she's gotten her opinion on his medical care rebuffed so many times that she just can't do it anymore.

     My husband and I are unit, though, and we make decisions about his treatment together. I always accompany him to the hospital, keep track of which meds he's on and for what, and ask him to recount the minutes of his doctor's visits so that I can have a good idea of what's going on, what the professionals are going to experiment with next. I never thought it should be any other way and my husband has never expressed any desire to change up the way we do business. Does that mean it's the right way?

     My sister's less-than-eloquent opinion is that my husband needs to "be a big boy and deal with it by himself." Um, disagree on a large scale. She's a good person and we're close, but Lizzie has a selfish streak a mile wide sometimes. Again, I can't imagine utilizing her approach to coping with her partner's illness, but neither am I here to judge. If it works for those two, then so be it. I know she loves him and ultimately,when push comes to shove, there's not a doubt in my mind that she'll stand by his side. That doesn't change the fact that I'm really bothered by the fact that she thinks I do too much for my husband.

      I don't know that I can hold that opinion against her too much, as there are so many elements of my husband's disorder that she doesn't understand. There are elements to it that no one knows about and though they may suspect, those are the parts my husband is not ready to share with the world. I suppose, then, that my sister's hurtful opinion is borne not of disinterest, but rather ignorance. She doesn't live with us, has never been to the hospital when he's there and has never been present for any of our ER visits. So really, how could she possibly know what she's talking about?

     And anyway, so what if people think I'm overly involved in my husband's medical care? I don't think I am and neither does he; tell me again why I can about anyone else's opinion on the matter? I love him more than anything and I'm all too aware of our likely-truncated time together. There's nothing I wouldn't do to make him well, but since I can't, I'll have to settle for taking care of him the best I can.


Wednesday, July 18, 2012

The Perfect Drug

     The thing about my writing is that it's a mostly therapeutic thing, which means that it tends to be rather rambling in nature, almost stream-of-consciousness. I know that makes it less than coherent at times, even hard to follow on my worst days. That methodology can also lead to me not ever getting to the original point that I was trying to make when I first sat down to write a specific post, which is, I feel, what happened last time I posted.

     I somehow got off on a tangent about my annoyance with the way my husband and people like him are perceived, even in the clinical world of pharmacies. Sometimes I feel I'm hyper-sensitive to slights like that, but it's really hard not to be when I see day in, day out the effect it has on my husband's self-confidence and perception of his worth. Regardless, that's an issue for another day, because the point I was actually trying to make was that we may have actually stumbled on the winning combination of drugs with which to manage my husband's pain. You have no idea what a relief that is.

     As always, I'm crossing my fingers as I type this, because I'm superstitious that as soon as I say something's going well, it's going to get screwed up and/or stop working. We've had such a run of bad luck over the past twelve months or so, though, I can't help but feel that perhaps this time will be different. That's not to say that I feel my husband and I are owed some good luck; I don't believe a person is owed anything but that which he honestly works to achieve and luck doesn't fall into that category. I do believe in trusting my instincts, though, and right now they're telling me that this could be what we've been hoping and waiting for.

     I didn't really go into depth, but as I mentioned before, my husband's pain-management doctor started him on a regiment of methadone three times a day with Dilaudid as back-up to handle any breakthrough pain. It seemed a safer and more effective option after the steroid shots failed to make any real improvement in the situation, definitely a less-invasive one. Although, really, we're talking about someone who's been cut wide open both front and back and has more metal in his body than the Bionic Man, so we've kind of blown past that line of what's invasive a long time ago.

     I'm not usually a fan of medicate, medicate, medicate, especially when we're dealing with heavy-duty narcotics, as we are in my husband's case. I think they can easily mask the underlying problems without ever actually treating them, never mind the fact that these painkillers are highly addictive. In my husband's case, though, I don't feel that there was any alternative. Actually, it would probably be more accurate to say that I don't feel there was any alternative that hadn't already been tried.

     He's already had spinal surgery which fused about a foot of his spine to three titanium rods, tried physical therapy, been to a special chiropractor and owned every manner of back brace available. These attempts at mitigating the damage wrought by the Marfan's Syndrome are all in conjunction with many, many trips to the emergency room on an as-needed basis to add any painkiller you can think of to the mix. Nothing has really been effective until now, but nobody's ever tried methadone before now, either.

     I knew what methadone was before I met my husband, but I only thought of it as a drug used to help recovering heroin addicts come down off their addiction. I never really thought of it as a viable alternative for my husband, as he was already getting Dilaudid at the ER whenever he went in there with back pain so bad he could hardly breathe. If that shit didn't kill the pain, why would methadone be any different?

     As it turns out, it's a completely different type of painkiller than morphine or the like. Methadone is a fully synthetic opioid that's also used to help manage chronic moderate to severe pain that isn't helped by non-narcotic painkillers. I'm not 1000% sure why it's so different than Dilaudid or the like, but I know that methadone doesn't block the pain like other narcotics, but instead changes the way the brain and nervous system responds to the pain. Again, don't ask me to go into specifics about the hows and whys of it all, because I don't know, but what I do know is that it's allowed my husband to go almost two full months without an emergency room visit.

     Adding more and more drugs to my husband's daily regiment is not something either of us wanted to do. For every action, there's an equal and opposite reaction, right? Okay, so if the methadone is doing this much good, there has to be a potential badness to it as well. Obviously, addiction to painkillers is the downfall of many who suffer from chronic pain, but I don't think that's a worry that should be on my horizon at the moment.

     I'm more concerned that the methadone will have some sort of bad-news effect on another of my husband's daily meds and that's exactly what I don't want to happen. Of course, that's a game I could play all day with no end result other than insanity, so probably I should leave the what-if's alone for now. It's never easy, because there are so damned many of them, many with dire consequences, but the best thing to do right now is try my damndest to just be grateful we found something that works. It's not perfect and it probably won't last forever, but it's at least providing a much-needed respite for the time being.

Thursday, July 12, 2012

Charlie, the Methadone Man

     My husband's name isn't Charlie. Neither is his doctor's, for that matter, but as you might have noticed, I use the names of songs as the titles for my blog posts. This one is so specific (thank you, Fastball) that I never thought of it as a contender, until the day my husband came home from the doctor's office with a prescription for methadone. Such a weird song title, such a weird prescription that I never thought would come through the front door and then all of a sudden, it did. You'd think that I would've learned my lesson by now about saying how well things are going with regards to my husband's medical treatments, but I'm awfully stubborn sometimes, so here it is again - the methadone is proving to be the best thing we've tried thus far.

     After the somewhat unnerving experiment with steroid injections in his spine, my husband had a follow-up appointment with his pain management doctor. Obviously, this doctor had been kept in the loop regarding the T.I.A and its repercussions and so the topic of this visit was primarily what other course of action could be taken to effectively manage the sometimes-debilitating pain my husband experiences on an intermittent basis.

     The course of action that was ultimately decided on was a thrice-daily dose of methadone, with a backup prescription of Dilaudid for any breakthrough pain he might experience. As methadone was probably one of the few painkillers my husband hadn't been prescribed, we figured it had as good a chance as anything of being effective.

     He went straight to the pharmacy after his appointment to get his meds, as he usually does. Now, walking in with a prescription for 180 hydromorphone is not a common occurrence, I suppose, because the few times he's had to do it before, the pharmacy usually has to call around to the other locations until they find one that has that quantity on hand. My husband was fully aware of this possibility when he walked in the door, but as it turned out, he was dead wrong in his assumption of which drug was going to be problematic.

     The pharmacist didn't really blink at the paper which contained the prescription for the Dilaudid. A quick phone call was made to a sister store to confirm that they had the required quantity and my husband was told where to go to pick it up. The methadone, though...that seemed to put a little break in the pharmacist's stride. It wasn't until said pharmacist actually asked my husband what he was using the methadone for that my husband realized what the problem was - the pharmacist wasn't entirely convinced that the meds were for pain management and not for assisting with coming down from a heroin problem.

     Instead of being outraged at the insinuation, as I imagine a lot of people might have been, my husband took it in stride when the pharmacist asked, "So, are you using this for pain or for, um, something else?", as though that were some sort of code that made it clear that my husband wasn't fooling anyone. To be fair, (though at times like these, I find myself not really wanting to) my husband doesn't exactly present a clean-cut image. His hair is well past his shoulders, he's never clean-shaven (unless he's dressed as a woman for a party or something - don't ask) and wears a silver hoop in one ear. This, combined with the fact that his recently- removed IV needles had left distinct marks on both of his arms, were most likely the determining factors in the pharmacist's assessment of the situation.

     He couldn't have been more wrong, as my husband has never used any drugs which require a needle (Lovanox notwithstanding). As I said, though, he took it in stride and when the pharmacist said he'd have to speak to the doctor's office before he could fill the prescription, my husband just  said that was fine and went to pick up his Dilaudid, so he'd at least have that on hand should something painful happen.

     Even though the prescription for the methadone was ready and waiting the next day, I couldn't help but feel irritation at the way the whole thing was handled. I mean, Dilaudid is a Schedule II narcotic, which means you have to have a written prescription from the doctor to get it - there's no calling it in by the doctor's office. It's not exactly aspirin and nobody thought twice about handing that over. The methadone, though, that required a call to the doctor's office before it could be filled, even though my husband had the prescription in hand, just like he was supposed to. I have no idea what the phone call accomplished, because even if he was using the methadone to get himself through withdrawals, he had the damned prescription from the doctor.

     I know I shouldn't get so bent out of shape over this. The pharmacist was just covering his ass, right?  Why then, did he accept the Dilaudid prescription without question? Both prescriptions were written by the same doctor on the same day, so what the hell? I can only conclude that it's because of methadone's alternate use that he was so hesitant to fill that pill bottle for my husband. That type of not-so-subtle prejudice is really less than fun when we come across it and I doubt very seriously I'll ever mellow out on the particular topic.


Sunday, July 1, 2012

Ain't It the Life

     I try really hard not to, but I'm aware that sometimes the things I write come off as bitching for the sake of bitching. I find it difficult sometimes to walk the line between speaking honestly about what it's like living with a spouse with Marfan's Syndrome and keeping things realistically positive. I say "realistically" because I have a huge problem with the fact that almost every resource I've found dealing with Marfan's has this unnaturally cheerful attitude about the whole thing.

     Granted, there are worse things than living with a degenerative genetic disorder; there are much worse things going on in every corner of the world and I hear about them on CNN every damn day. The fact remains, though, that each day is harder for my husband and I that it otherwise would be, if not for one genetic flaw, and nobody seems to want to admit that chronic, debilitating disorders are the suck.

     That being said, one of my beliefs has always been that no matter how badly you're being treated by life, there is always someone somewhere getting the shorter end of the pointier stick. It's because of that belief that there are days when I feel as though I have no right to be keeping this blog, to be writing what I do, or even think some of the thoughts that I do regarding my husband's disorder and its effect on our life. Today is one of those days.

    In a few weeks, I'm planning to help my mom assist one of the people she oversees in her capacity as someone who works with and advocates for the disabled citizens in my home county. Her consumer, as they're referred to, has been able to secure a lovely new apartment and plans to move from the bad situation she's currently living in. As she is disabled and has only her son to rely on, Mama volunteered to help her move her few possessions to the new place and when my mother put out the call for further assistance, I answered.

     When I learned the details of this very kind lady's plight, which I'll decline to share in deference to her privacy, I could feel my throat start to close up and damned if it wasn't hard to keep from crying right where I sat, which was at my desk at work, in full view of the rest of the office. I simply couldn't imagine being in the situation she was, with so few avenues available to me while at the same time being in such a desperate situation. I tried, but I failed completely at being able to really wrap my head around it.

     The reason for that is, no matter how hard it gets for my husband and I, we will never be without help or a place to go. Our network of incredible family and friends is simply too vast and too supportive for us to ever feel that horrible sense of desperation that I know so many others must face on a daily basis when they find themselves without any money in the bank and nowhere to go except to the driver's seat of their car.

     Even though my husband lost his job in March and, despite a diligent and often-frustrating search ever since, hasn't found a replacement, I know we'll be okay. Even though he's now on seven daily meds to keep him going and the cost of those medications just went up, along with our share of the bill for any emergency room visits or urgent care visits, I know that somehow I'll be able to pay the bill to get him the care he needs.

     Please don't misunderstand - there is no Daddy Warbucks waiting in the wings. I only mean that there would always be a spare bedroom somewhere that my husband and I could occupy until we got on our feet again, should the need ever arise. There aren't words for the kind of gratitude that's inspired in me when I think about that.

     At the same time, though, I can't help but think of the people in my world who aren't so lucky. Hell, I can't help but think of the people I've never met, like the ones I just read about in a Rolling Stone article who have been living out of their cars while they try to find work and a place to live that doesn't require that they find a safe place to park it every night. I choked up reading that one, too, because I couldn't help but think that my husband and I could easily be one of those people profiled, were it not for our living, breathing safety net.

     I've come to no conclusion, no agreement within myself as to whether or not I have a right to feel the way I do sometimes when I think about my husband's health. There's definitely some guilt going on that I even voice the fears and frustrations that I do, because it's so easy to see how much worse it could be for us. All I have to do is look around to see how much worse it is for people in the same place as we are, just trying to get by in a world that is by and large hugely unkind towards the disabled community.

     The Marfan's Syndrome that is the ghost in the machine of our marriage is something that has to be addressed daily, something that has to be battled head-on, lest it gain even an inch of ground. I know there are those who may find that statement melodramatic, but I assure you - it's not. Disorders like my husbands cause so much heartache for so many and I really feel, in times like these, that mine is on the small side compared to what others face.

     My heart bleeds for these people, every time I hear of someone fighting the same battle we are, but without the cavalry that I have the ability to call in when and if I need to. I feel guilty, I feel angry, I feel useless and helpless. It's a nasty mix, to be sure, but the only thing I can think to do to ease the hurt is to offer my help, each and every time it's asked for. It's about the only thing I've got to offer at this particular crossroads in my life, but at least I can give it without reserve. That has to count for something.