Wednesday, November 28, 2012

Trouble Sleeping

     It's been at least three weeks now since my husband has had a full night's sleep for more than two nights in a row. The pain in his back is as bad as it's ever been and seems to be particularly persistent in its attempts to bring him down this time. We've been together for just over three years and I've never known an episode to go on for this long with virtually no relief. I have no idea what that means in the overall scheme of all things Marfan. Maybe it's just been a bad couple of weeks; maybe it's deeper than that. Maybe the far-away second spinal fusion isn't as distant as we'd hoped. Maybe I'm overthinking this, as would be consistent with my usual mode of operation.

     The sleeplessness was originally the result of methadone withdrawals, we're pretty sure. See, my husband's pain doctor wanted him to transition from methadone to Nucynta, a different type of painkiller, for some reason. I think it had something to do with the exact dosage of his warfarin, how the Nucynta would be better for someone who takes the amount of blood thinners my husband does, but as it turned out, it didn't matter. My husband had mistakenly told his pain management doctor the wrong dosage during his initial visit and that's why the doctor was trying to wean him off one drug and onto another. Or something like that.

     So last month, instead of getting his prescription for methadone refilled, my husband started transitioning to the Nucynta. He'd been told that he would likely experience methadone withdrawals, but it would take awhile for his body to recognize what was going on. I suppose neither of us connected the dots when he started feeling less than well a few weeks ago, but that's exactly what was happening.

    It's a royal pain in the ass when all you want to do is go to sleep because A) you're dead fucking tired from days of minimal sleep and B) you're still hanging on to a futile hope that perhaps if you're not awake, the pain can't touch you and still, your body just won't physically allow slumber. I hated watching my husband suffer, hated that, as so often happens, there was nothing I could to ease the situation for him. I also hated that he was not the only one in the house whose sleep habits were being disturbed, and I'm not referring to the cats. And no, I don't feel guilty for thinking that - I'm long past the point where I feel it necessary to play the stoic wife, caring only for her spouse's discomfort and nobly putting her own needs aside.

     I did voice my opinion that I thought the Nucynta was perhaps not the best choice and that the methadone seemed to work much better. My husband seconded that thought and so made an appointment with his pain doctor to tell him that the new hotness was actually not doing nearly what we'd hoped it would. It was agreed that he would stop with the Nucynta and move back over to the methadone.

     He's now in the process of transitioning back, but methadone isn't like dilaudid or morphine, which is intended to work quickly, for acute bursts of pain. Methadone is used for managing long-term chronic pain and so needs to be built up in the body's system before it can really do its job. Obviously, because he's just started moving back, we're not at that point yet. I do think the vicious knot of muscles and tissue in his back is starting to loosen its grip, so that's something. I'm in that bad, potentially dangerous frame of mind, though, that makes me think that this isn't the end, but the beginning of worse things to come.


Wednesday, October 31, 2012

We Gotta Get Out of This Place

     I'd been in Charlotte for a whopping week before the first emergency room visit happened. Half of me is surprised it took that long and the other half still wonders what the hell we were doing there, because my husband's health has been holding so steady for the past few months. I suppose gratitude should have taken the lead in the emotional race, since we were "only" there for an eyeball issue, not a crippling pain in my husband's spine or a random staph infection or something of that nature. No, in this case, he was simply bleeding into his eyeball. No big.

     We'd had big plans for Monday, did my husband and I. We were going to get up early, brush our teeth, shine our shoes and go to the furniture store behemoth that is IKEA. Not having one in St. Louis, this was going to be a fun thing for us and we were going to start the slow process of acquiring the things that people use to make empty houses into homes. Except for, when he woke up, my husband couldn't see anything out of his left eye. Well, that's not entirely accurate - he said it was like trying to look through frosted glass.

     I'm just going to take a moment to edit out a whole lot of irritating bantering back and forth about what the proper course of action should be and tell you, gentle reader, that what the conversation boiled down to was that my husband wanted to go to the ER and I did not. Having spent entirely too much time in them in the relatively short time that my husband and I have been together, I have developed a not-completely-irrational hatred of all things emergency room. The reasons for that hatred are myriad and a post all their own, but one of the biggest reasons I did not want to go last Monday was simply because I was fairly certain that nothing could or would be done to correct my husband's current issue.

     Ultimately, the ER is exactly where we ended up, because there was no better option available to us. Both my husband and I were pretty certain that we knew what was going on, but that succeeded in calming his fears of losing his eye altogether not at all. He's bled into his eye several times before and it's actually not an uncommon thing with Marfan's kids, so I didn't really get why he was freaking out about it this time. Then again, I wasn't the one experiencing life through a frosted-glass window while worrying that this was the big IT, the event which would lead to the doctor telling him that they could no longer patch the eyeball up - it had to go.

     That didn't happen, incidentally. What did happen was a whole lot of nothing, though that's no fault of the hospital staff. In fact, I was ridiculously impressed with the service and care that my husband received at the first North Carolina hospital I'd ever been to. I mean, StL emergency rooms often have a war-zone-like atmosphere that's a challenge to deal with on your best day and borderline impossible any other time. Charlotte, though? Not only was there no waiting to get into an exam room, but there was a lovely concierge to walk us to the aforementioned room! That, and the snack bar in the (apparently unnecessary) waiting area just made my day.

     Awesome first impression aside, this emergency room was really similar to the ones back home in the Midwest in that they couldn't really do a whole lot for such a specific issue. I mean, yeah, the attending physician was able to check the pressure in my husband's eyes and see that it was normal, indicating that his old incision had not opened up and allowed the fluid to drain out. 'Cause, you know, that happens sometimes. Next most likely cause of frosty-glass vision? Bleeding in the eyeball due to a weak spot in the optic tissue allowing the blood to enter through a hole. Icky, but not at all unexpected.

     There was nothing more the ER could do, so they contacted an opthamologist and told my husband to contact him as soon as possible, that he needed to be seen by a specialist. It was at this point that I exercised HUGE restraint in not muttering, "I told you that we should've skipped the ER and just gone to the eye doctor," as I led my half-blind husband back to the car.

     I'm tired of the ER, just as tired of it as my husband is, and I don't want to go there anymore. I don't want to have my plans for the day wrecked by yet another unplanned medical emergency. I don't want to sit there trying to relate the events of what got us there in the first place while the doctor treats me as though I haven't the slightest concept of what I'm speaking about. I DON'T WANT TO, DAMMIT! I'm sure that looks ugly on the page to whoever reads this, but it doesn't look that way to me, nor does it feel ugly - it feels like the truth of a bad situation for all involved.

     We're both so, so tired of the ER, my husband and I. Don't wanna go there anymore, either, so we decided that we're not. I mean, strictly speaking, if he's bleeding internally or appears to be having another mini-stroke, then yeah, full steam ahead to the nearest hospital. But for the things that we've always used it for in the past? Nope.

     The subject came up while we were in the car driving home from the eye doctor's appointment, actually, and we both agreed that there's really nothing more the emergency rooms can do for my husband when it comes to the usual suspects that have traditionally sent him there - pain and eyeball issues. The pain thing is becoming less of an issue since the methadone/Nucynta routine was introduced and even when it does start to go off the rails, he's got a back-up prescription of Dilaudid to get him through until his back calms the fuck down again. That's all the hospital ever did - administer the proper dose of painkiller, albeit through an IV instead of orally. Really, though, you're talking semantics at that point.

    Eyes have to be dealt with by a specialist as well and now we know for certain that there's really nothing that can be done outside of the opthamologist's office, so that's going to be the destination in the future. It's actually kind of a relief, knowing that only in the most extreme of circumstances will the ER be our go-to. We've spent far too much time there and it's a huge drain, both emotionally and financially. Besides, it might be kind of nice to use the ER as most people do - as an occasional thing, not a so-frequently-they-know-us-by-sight thing.

Saturday, October 20, 2012

Move Along

     I did it. I'm here in Charlotte and so far, I'm definitely a fan. I love the neighborhood that we live in and the house is coming along nicely, though I'm pretty sure that I'm going to have to start embracing white walls, because this painting nonsense is for the birds. I'm still hesitant to drive around by myself because I have such a lousy sense of direction, but it's cool - I have Domino's to keep me from starving and every episode of Buffy the Vampire Slayer on DVD to keep me entertained. See how resourceful I can be? I even have a job interview scheduled for Tuesday, so I might be done with this unemployed business sooner than I thought. Though I've been here all of a week, Charlotte is definitely playing nicer than St. Louis so far.

     My husband's doing so well at his new job and the newish pain management regiment is still working. He was taking three methadone every day with a supply of Dilaudid as back-up for breakthrough pain, but recently he's switched over to a pretty new drug that neither of us had ever heard of. It's called Nucynta, which is the brand name for tapentadol. It's actually in the same class of drugs as the methadone, an opiate analgesic, but supposedly the Nucynta plays nicer with my husband's blood thinners, hence the switch. It's only day three of this, so we'll see what happens. I'm sure if it doesn't work as well, he can go back to the methadone, as he never experienced any ill effects while he was taking it.

     All this newness/goodness that's made its home in our lives recently got me thinking about my husband's disorder and the role it plays in our marriage. Specifically, I started thinking about the way I view it. I know there are people who may disagree with this, but I tend to view the Marfan's Syndrome as the third person in my relationship, always have. I'm not alone in this, because I know my husband sees it the same way. We've talked it to death on more occasions than I care to remember, but we always circle around to the same truth - his disorder takes up way more space in our lives than we'd like it to, but neither of us knows how to minimize it.

     God knows we try. After three years together, we're at least to the point now where we're comfortable not talking every little hospital or doctor's visit to death, because we know it's unnecessary.  Likewise, we generally only share medical news with friends and family if it's something out of the ordinary or serious, like a hospitalization. It's become such a part of our lives that to do otherwise would require a large amount of time to update everyone when it's just not needed.

     Aside from that, though, I will be the first to admit that it's tough not to take the Marfan's into account whenever a large-ish decision needs to be made. Move to Charlotte? We had the usual considerations that everyone has, such as cost of living and would I be able to find a job. The added ones, though, such as would we be able to find a doctor in Charlotte that knew what Marfan's was and could treat it as well as his physicians in St. Louis, were things that many people don't have to worry about. New city? Just run down the list of doctors on WebMD until you find one who's accepting new patients, right? Not so much, in our case.

     I feel, though, that this is the perfect time to turn the page, if you will, in my book o' living. If moving away from the only home I've ever had isn't incentive to begin a new chapter, then nothing is. It's been brought to my attention that the title of this blog is somewhat...I don't even know the right word. "Offensive" isn't it, because nobody's offended by it, per se. The feedback I've gotten, though, is that it makes it seem like I'm married to the disorder itself and my husband as a person just happens to be attached to it. While not my intention, I won't lie and say that it's never felt something like that before.

     Without getting too high up on my soapbox, it's key to remember that the whole point of and inspiration for this blog is to provide some kind of support or venting place for the ones who are like me - partnered with people who will likely never be well, specifically those born with Marfan's Syndrome. Therefore, this place first and foremost belongs to me and to them. I want to be as honest as possible at all times with what I write, because it was the lack of honesty in any support group writings that I was able to find that ultimately pushed me to do this. I stand by that goal and will always do my damndest to stay true to what I'm feeling, rather than tempering it because it might not be the most optimistic way of phrasing it.

     I should also point that, though there's no way anyone could have known this, my husband and I talked about this blog and the title it bears for quite some time before I actually went live with it. He knows why it's titled such and agrees, because there are days when he too feels that he has to pay more attention to his disorder than to me, his flesh-and-blood wife. That right there is the reality of living with something like Marfan's Syndrome. It's not pretty, it's not happy and it's sure as hell not ideal, but it's THERE. To ignore it is not an option and so what we've decided to do is stand our ground, together, and face the bitch head-on.

     That said, I go back to the above opinion that the times, they are a-changin', and it's time for something new. I'm going to be starting the (slow, I'm pretty sure) process of moving this whole operation over to a different platform. I still have to do a bit of research and decide exactly how I want to set it up, but change is coming. Part of that change is going to be a new name, because after mulling it over, "Married to Marfan's" doesn't really seem to fit anymore. I mean, there are still occasions when it's appropriate, but they're getting fewer and further between.

     I'm hopeful, for the first time in a long time. It's an odd feeling, one that I don't completely trust. A big part of my heart (and my head, for that matter) is still dead-set on thinking that such a thing has no place here. It does, though, I'm fairly certain. I say that now with confidence, not with the desperation of trying to make myself believe it's true. For a long time, it was one of those things where if I repeated it enough, I'd start to believe it, or so I thought. It never worked, though, until now. This time, when I say I'm hopeful, it's because I feel it. I don't have to talk myself into it, because even though it's still small, it's presence is absolute.


Tuesday, October 9, 2012

She's Leaving Home

     I try to keep this blog on-topic as much as possible, but every so often, I need it for me and what's going on in my head. Which sounds semi-stupid now that I see it typed out, as every-damn-thing I write is something that's going on in my head, but I hope you've read enough by now that you know me well enough to know what I mean. I'm going to tie it back to my husband's Marfan's Syndrome, because the root cause of what's got me so upset is that damned disorder, but just be warned - it's a tenuous tie at best. Mostly, it's just my abject fear of what's coming.

     In less than seventy-two hours, I'm leaving behind the only home I've ever known and setting off for a new life in North Carolina. It's a decision that my husband and I didn't make lightly, but one that we felt was the best way to make good come from a bad situation. Namely, the fact that my husband lost his job last March and nothing employment-wise was working out here in St. Louis. We decided to give up our house voluntarily before we lost it and move in with friends (in his case) and family (in mine).

     Every day, I'm thankful to Adam and my parents for unhesitatingly providing shelter from the storm to each of us and allow us to make a fresh start. It's been going well since the transition, so I take that as a good omen that Charlotte will be kinder to us than St. Louis has been of late. Hell, it even seems like his health is better in that city than it was in the Midwest, though I know that's probably not a thing. The methadone regiment is working nicely, however, so that's a huge positive.

     We found a little house when I was down there and it's right in the neighborhood we wanted. My husband's new job is wonderful and pays well, but more importantly, offers full benefits. That's a key piece to the puzzle, which I'm sure is the most obvious thing in the world to anyone who reads this blog, but it stills bears mentioning. And on that same house-hunting trip last month? I got to re-connect with Adam, whom I hadn't seen in almost two years, and that was awesome. Even better, I met and totally hit it off with someone new that I have every hope will become a great friend to me. These are all really, really good things.

     Those really, really good things, though, haven't yet been able to push my sadness and semi-panic out of my head. There's also a nasty little ribbon of guilt snaking through it all, too, because I know this move is the best thing for my husband, especially. And really, after the year and a half or so he's endured, I don't feel that I should be moping around about moving. I'm twenty-eight years old, for Christ's sake! Shouldn't I be able to just be excited to start a new chapter of life with my husband?

     I can't find the excitement at this moment, though. I've been sick to my stomach for most of the day and looking at the boxes full of belongings stacked up in my bedroom just makes my throat close up. I keep trying to look at this as a road-trip adventure, especially since I have one of my best friends in the world driving the moving truck and staying with me the first weekend in North Carolina. I'm so happy he's going to be there and I know it'll be okay at first because I'll still have that living, breathing piece of home with me. Putting him on the plane, though, that's something I can't really think about right now.

     I keep trying to tell myself that this is for the best, that I should be excited. And most days, I am. Or maybe that it was just that it didn't seem real until now. I mean, yeah, my husband's been there and I've been here for a couple of months now, but I've at least been at home with my parents, living in my childhood bedroom. Do you know how much comfort there is in that? A lot, is the short answer. I'm someone who very much likes the familiar and the known and to be facing an uncertainty on this scale has just shaken me more than I ever thought possible.

     None of my usual tricks for calming my thoughts have worked - not driving around with music so loud the rear view mirror shakes, not doing a horror-movie marathon (don't judge, we all have our methods), not talking to my parents or my husband. Nothing. This, then, is my last attempt to find some peace. When the thoughts are flying around too fast, choking my poor brain and threatening to bring me to tears, all I have left is writing. My God, could I be any more emo?

     Regardless, it's all true, everything I just said. I want so badly to just be excited for a new start for my husband and I, because things have been so bad for so long. We've fought, long and hard, to get his medical issues reined in and we've had our asses handed to us by the Marfan's more often than we haven't. It's taken the proverbial village to get my husband and I back on our feet after getting kicked in the teeth so many times we're still bleeding and I feel awful for not being happier, more excited, more eager to start fresh. What the hell is the matter with me?

Tuesday, October 2, 2012

Treat Me Like Your Mother

     Occasionally, something happens to someone else in my life that, while not directly tied to me or my husband, hits so close that I have to weigh in with my opinion on the matter. (Absolutely no one has asked me for said opinion, but since when has that ever stopped me?) It's something that I think is SO important to any couple comprised of one or both partners with a chronic illness, but so unique to each situation that I don't feel it's even possible to give advice so much as relate my experiences with the hope that it will somehow help someone wrestling with the same.

     About a month ago, my sister Lizzie and her longtime boyfriend, Erik, broke up. It's been hard on everyone in my family, as they've been together since high school and Erik couldn't feel more like my brother-in-law if they were actually married, but it's been flat-out brutal for both my sister and Erik.  Maybe they'll come back together, maybe they won't; nobody can say at this point and that's not what I'm opining on anyway.

     The thing is, their relationship shared one unfortunate trait with mine and my husband's - Erik is sick. He suffers from ulcerative colitis and has for several years. It's something that they've both had to learn to cope with over the years and I don't know that their efforts were ever quite as successful as they'd hoped. You see, in the relatively short time I've been with my husband, I've figured out pretty quickly that one distinct difference between our relationship and theirs is the role I play in my husband's medical care versus the role my sister played in Erik's.

     As I said before, I'm not trying to give advice here or start armchair-quarterbacking another's relationship; that's not what I'm here for. I'm also not trying to insinuate that this is the reason for the separation - it's not and I'm not going to get into any more detail about something that's not mine. I just can't help but notice the two completely different approaches to so similar a problem.

      From the very first, I was involved in my husband's medical care. Even back when we had just started dating, I would make sure he was okay before I left for work if it was a day he'd had to call in. Or I would suggest that he call whichever doctor in his arsenal best suited the issue at hand and make sure he followed their recommended protocol. That early bond that we developed is, I think, a big part of our current solidity as a couple. Speaking as someone who was on the outside looking in, I can't say that I saw that particular bond form between Lizzie and Erik.

     It's so important to me that my husband has made room for me to stand firmly by his side in the hospital and something that I never anticipated when we first began our relationship. I mean, we talked about what his disorder would mean to us as a couple and how his Marfan's would affect our future, but we couldn't possibly have anticipated what would grow between us on that front. I really don't think there's any way we could've known, because there was no guarantee that it would happen. There was also no way to know how very essential to the strength of our relationship it would become.

     I love my in-laws a whole lot. We get along waaaaaay better than I did with my ex-husband's family and that's due in large part to the fact that they love my husband and I for who we are, not who they think we should be. (That, though, is kind of a whole different story, so let's move on...) Another great thing about them? While they're always there to support us, they know that ultimately, it comes down to my husband and I. Anything regarding his healthcare comes down to us and what we decide is going to be the best thing for our lives at that precise moment in time. That's a huge thing.

     As much as I love my family and could not be any closer to them, I have to make my decisions based on my husband's opinions and needs and wants. I know he makes his decisions the same way and I see now that it can't be any other way for us. I don't know if it's the same for other couples in shoes like ours, but for us to make this work, there's no other way.

     My husband is very clear about the fact that he and I are the ones who make the decision regarding his medical care, not his family. Please, please, please don't read that as me being super-bitch who only wants her husband all to herself and nevermind the fact that he's also a son and a brother; that's not what I'm saying at all. In fact, I always make it a point to call and discuss any major issues that pop up with both his parents and his sister, because I believe that they should absolutely know what's going on and have all the information they need so as to make an informed decision about the role they want to play in his care, if any.

     The point here is that, in my opinion, when you're dealing with something like Marfan's Syndrome making itself all kinds of unwelcome in your marriage, there really is no choice but to stand together as a team. It's kind of a twist on the whole "forsaking all others" bit that's usually included with the marriage vows. (Side note: I don't actually think my husband and I said that when we got married because Adam wrote the whole ceremony, but I could be wrong. End side note.)

     Everyone assumes that parts refers to not getting intimate with anyone but your beloved and they're not wrong, but doesn't it also make sense that it would refer to making your partner the primary decision-making partner in your life? I mean, yeah, ask your friends for their opinions, talk to your family about what they think, but when push comes to shove, it has to be a partnership, not a group effort. My place has to be forever right beside my husband for this to work and I'm pretty sure it always will be.

     The end result of all this rambling and over-thinking is that seeing my sister's troubles made me realize how lucky I am in having a husband who is of a mind with me on what could be a landmine issue. Ultimately, he's the one who made the decision, consciously or not, that it would always be us in the hospital room, us talking to the doctors and us making the final call with potential treatments, hospitalizations, or anything else that wants to walk through the door. I never realized before how crucial that piece of the puzzle is to our marriage, but it's a damned big piece, so I'm really glad it fits so well for us.

Saturday, September 15, 2012

Gimme Gimme Gimme

     You know how every so often, you just have a shitty day? I mean, one of those ones in which nothing catastrophic happened and really, nothing in particular occurred to make it a bad day; it just was. I had one of those the other day, the kind that left me feeling antsy and snappish and frustrated with everything that didn't go exactly how I wanted it to go. That wanting of things to roll along exactly as I wanted them to would include my husband and his attitude.

     I assure you, rarely does he do exactly as I wish he would, but the vast majority of the time, it's a non-issue. While he can most definitely work my last nerve with some of his decisions and things that come flying out of his mouth, I have to appreciate that I'm not married to a doormat, because who in the hell wants that? The problem starts when I'm having one of those ugly, off days and I have the potential to get genuinely angry/upset over the littlest thing. Those days, I just need him to give me a little bit more than normal.

     So that's all well and good, yes? Every couple in the world has those times and that's a situation that's not unique in the least...until my husband's damn Marfan's Syndrome butts in and makes itself unwelcome. You see, I'm discovering that with something like a chronic illness sucking up space in my relationship, there just isn't always room for me to have that needy time. My husband needs a lot from me on any given day and more than I'm sometimes able to give, so nine times out of ten, I simply put up and shut up. Recently, though, I've started to see that my method of dealing with those needy days is actually a horrible plan because the repercussions are deeper and wider than I ever suspected.

     I know I've written before about how my usual operating procedure, regardless of the situation, is to essentially keep putting one foot in front of the other and march on. It's something I learned growing up, watching my parents deal with everything that got thrown at them, like Daddy's cancer diagnosis, in such a manner that it never once threw them off their game. Or if it did, they never let my sister and I see it, which is just as important to the well-being of kids that they were trying so hard to protect and care for. I admire and love them for that more than I can say, for ensuring that my childhood was as great as any I could imagine despite the challenges I now realize they faced on a semi-regular basis.

     It doesn't work, though. I'm slowly beginning to realize that what works for one can't possibly work for all (a third-grader could've come to that conclusion faster than me in this case) and it's becoming clear that my approach is probably not the right one for my husband and I. Jesus H., that was a difficult sentence for me to write, as there are very few things I loathe more than admitting when I'm wrong. Or even potentially wrong, because I don't know yet that I shouldn't retain at least a part of my methodology. What I am fairly certain of is that I need to stop singing my, "It's fine, I'll deal with it," chorus every time I start to feel the need to lean on my husband.

      Marfan's Syndrome, in addition to its various and sundry physical manifestations, also has a whole battery of psychological side effects that often get pushed to the side in the rush to stop the bleeding from beginning. I believe it's something that comes with any long-term illness or medical condition and too often is the last symptom to be addressed, but that's a whole series of posts for another day. In my husband's case, he can sometimes get the thought stuck in his head that he's less than what I need, not able to be there for me because there's always so much going on with him. I'm afraid now that I've been unintentionally feeding that monster.

     Between my own insistence on the put-up-and-shut-up way of living and the feeling that his disorder crowds out any extra from him that I might need on a given day, I think I've just been making the whole mess worse by trying to take care of myself all day, every day. By giving legs to the notion that there's no room for my weak moments, I'm afraid I've been inadvertently reinforcing the idea in my husband's head that he's less than enough for me. I so rarely go to him during my bad moments, believing that it's better for me to be strong, that I can work through it myself. No, not so much the right path to take.

     I honestly don't know if I'm going to be able to start doing what I need to do and making a change to the way I do business. Generally speaking, change is something I'm seriously averse to and I don't handle it gracefully by any stretch of the imagination, even when I'm the instigator. Combine that with my intense loathing of admitting I was wrong and you can see why this is going to be anything but a smooth transition. It makes no difference that I'm pretty damned sure that this is something that I need to at least explore as a viable option in my marriage; it's going to be really hard for me, no matter the reasoning behind it.

     I'm going to roll it around in my head awhile, because I know that something has to change and this is as good a starting point as any.

Friday, September 7, 2012

Long Way From Home

     Twelve hours and a couple of rest-area stops later, I have officially made my arrival in Charlotte, NC, my new home. It's still not real to me, that I quit my job of almost a decade and will never occupy that desk again. It's not real that these unfamiliar streets will soon become as known to me as any neighborhood in St. Louis ever was. It's certainly not real yet that in a few weeks' time, I will leave behind my family and friends and make a new life with my husband in a place so foreign to me. It's just so much to get my head around right now.

     I know I can sort out a few of my emotions from the tangle of the rest and the strongest one right now is relief. I've been separated from my husband for almost two months now and only once was I able to see him in all that time. While I'm well aware that eight weeks is nothing for someone who, for example, is partnered with active-duty military personnel who are deployed for months or years at a time, it's the longest we've ever been separated from the first time he kissed me. He's has a couple of different go-rounds with his health during this time and the frustration of being hundreds of miles away from him as he was hospitalized was unpleasant, to say the least.

     Somehow or another, my husband developed a staph infection in his elbow a few weeks ago that got so bad he had to be hospitalized for IV antibiotics. His arm was completely swollen from his elbow to his fingers, so much so that he could barely get his wedding ring off. He first went to urgent care to get it treated, but the oral antibiotics threw his INR levels so far out of whack that he had to stop taking them before the round was complete. At that point, he was still operating under the belief that it was nothing more than a bad case of bursitis. Yeah, it wasn't.

     When it came back with a vengeance a couple of weeks later, he went to see his primary care physician, who drained it and gave him an injection of antibiotics. The injection was supposed to both reach his bloodstream faster and screw with his INR less. It didn't work particularly well, even after the second draining and shot the day after the first. Finally, it was decided that the only thing that would clear it up would be hospitalization and IV fluids. When he told me that while he was en route to the hospital, I just felt awful.

     It's not that my husband is helpless; he's not, by a long shot, and I don't mean to imply otherwise. It's just that ever since we've been together, I've always accompanied him to the hospital on his many medical adventures. Even when he doesn't get admitted, I try to stay in the ER with him until he gets his walking papers. It's not always possible for me to do so, but even then we have a system in place that allows me to be his support system. For the first time, though, I wasn't there.

     I'm so grateful that he has people here in Charlotte who love him and were able to step in and take care of him, essentially doing the little things that I normally would have. Without them, I think my heart would have broken a little bit to think of him sitting in his hospital room all weekend without anyone there to visit him or talk to him. Alongside that gratitude, though, is a layer of guilt that I can't get out of my head. I should've been there to watch Food Network with him until he fell asleep. I should've been there so that I could bring his bag of meds to the hospital so that the attending physician could see what he was currently taking. And I wasn't.

     Common sense tells me that it's stupid to feel guilty for such a thing, since it's not like I was off doing my own thing and just couldn't be bothered to come be with him. I was still in Missouri, working and wrapping up what I could for my impending departure next month. And if it would have been something like another T.I.A, you bet your ass I would've been on the next flight to Charlotte. The truth, though, is that when you're partnered with someone who has a chronic illness like Marfan's Syndrome, you have to choose your battles. My husband and I both know that not everything can be treated like an emergency, because it's just not.

     I'm here now for almost a week so that we can find someplace to live when I get here for real in October. It's not a fun process, this business of trying to find somewhere to reside, and I'll be glad once we find a place and sign the lease. Deep down, though, I know my anxiety isn't entirely rooted in the stress of moving or of find a new house - a big chunk of it is because I just needed to be able to see with my own eyes that my husband is okay.

     I can't fully explain how nerve-wracking it is to hear about these medical bombs being dropped and changes being made to his medication without being there to experience it first-hand, probably because I never expected it would be. I'm a really self-sufficient person and my husband is, too, in a lot of ways. I can promise you that I never saw myself as someone who would be tweaked over what is by any standards a minor hospitalization. It sure as hell shouldn't have even been a blip on my radar, considering the things that my husband and I have experienced in the past. So to say that the realization shook me would be an understatement.

     I'll go back to Missouri on Tuesday and then I have to ride out four more weeks before I can come down here permanently. There's a lot to do in the time, including getting my resume and cover letter ready and working on finding a new job. That alone should occupy the biggest part of my brain, but I have my doubts as to how much of it will actually be wrapped up in what's going on in the Midwest when my heart's otherwise occupied in the Southeast.

Tuesday, August 28, 2012

The Other Side of the World

     I miss my husband like crazy. That much probably goes without saying, considering that he's currently in Charlotte, NC, where his new job is, and I'm still in St. Louis, MO, until the middle of October. I'll have (hopefully!) finished my paralegal courses by then and can pack up the U-Haul to move our lives out of storage and across the mountains to North Carolina. I'm excited and scared all at once, which is exactly what I'm supposed to be feeling, according to everything I've read on the subject. Mostly, though, I'm just ready to have my life in order again.

     The hardest thing about our separation has been, for me anyway, the fact that I'm not there to care for my husband if/when something goes wrong with his health. He's been away from me for a number of weeks now and during all that time, there were no hospitalizations, no back flare-ups, nothing. It was actually the calmest period we've had, health-wise, in quite some time.

     I was so grateful for this, because before he left Missouri, we had made all kinds of plans of what he'd do in case he had to go to the hospital. Which hospital would he go to? What constituted an urgent care visit and what pushed it over into an emergency room visit? Would he remember to tell his friend Adam, with whom he'd be staying, to text me with updates on his condition should he get admitted, since the hospital walls usually ate his cell phone signal? These are the types of things most people don't have to think about when planning a move from one part of the country to another.

     None of our plans had to be enacted, though, until a couple of weeks ago. My husband was returning home after spending the afternoon visiting with his parents when he felt his back start to cramp and spasm. That's usually when I get involved and start asking him what I can do, if we need to go to the hospital and so on and so forth. This time, though, I was more than seven hundred miles away and completely useless.

     This sense of helplessness was hammered home when my husband called me a bit later to tell me that Adam had made his bed for him and helped him take off his shoes, because he'd been unable to reach down and do it himself. Those two seemingly insignificant tasks? Those were both things that I always did for my husband whenever we had to play the back-pain game and now someone else had to take over for me. The miles between us were never sharper and more painful than they were in that moment.

     I will say, though, that my moment of, "Oh my God, I'm supposed to be there," was extremely short-lived. In fact, almost as soon as I felt the frustration begin to well, it was gone just as quickly when I thought about how grateful I was that someone was there who cared about him. It wasn't me and God knows I wanted it to be, because it's always me and it's always us, but in the end we were fine, just as we always are.

     It still feels like he's so far away from me and next week can't come fast enough, as that's when I'm planning to drive out there so we can go together and find a place to live. That's the next step to getting our life back in order, I think, and I know he's just as tired of this separation nonsense as I am. I've never done the long-distance thing before and I'm dead positive that we're nowhere near the first couple to feel like there's a thousand miles separating us, but I can't help but feel that the sense of distance is heightened by what I know could happen with his health.

Tuesday, August 14, 2012

St. Louis Elegy

      And so it's come to this - my husband and I are leaving the StL and moving halfway across the country to Charlotte, NC, which is where he's from. If I were to be completely accurate, I would have to amend the previous statement because my husband is actually already in North Carolina and I'm the one who will soon be leaving the Midwest to join him. It's a huge thing for both of us, to pack up and move over seven hundred miles away, but it's huge for each of us in different ways.

     I've mentioned before that my husband lost his job last March and when he was offered this new job in Charlotte, we were pretty damned pleased. Unemployment is kind of a mind-fuck and it certainly wasn't the happiest time in our household. This offer came through, though, and we decided that we would just have to look at it as a kind of second chance that we were being given to pick up and start fresh in a new place. It's not that St. Louis is an awful place to be or anything, but the city has, by and large, been rather unkind to us.

     The truth is, there were far more bad times here than there were good, and the painful memories far outweigh the happy ones. I don't know if that's because the painful ones are so much stronger than the others or if they're simply more numerous, but it's the truth. I will always be grateful for the time and the place because it brought my husband and I together; that will never change. I can't say, though, that I'm really all that sad to be moving on.

     I am sad to be leaving behind my coworkers and the place I've worked for the last eight years of my life, because there's not a lot that we haven't experienced together. My family is here, of course, and that's going to be a bummer because we're super-close and I'm used to being able to drop by my parents' house for a visit and free dinner whenever I want. That's going to leave a hole in me, but it can't be helped. I'm most afraid, though, of losing my circle of friends.

     The majority of my friends and I have been together for more than fifteen years and I can't think of a major life event that we haven't dealt with together. Sex, drinking, deaths, births, marriages, divorces, coming out - you name it, we've experienced it together. A couple of them are much more like brothers to me than friends and I have no idea how to be away from them. Especially when you consider the extra support that I sometimes need to deal with my husband's disorder, I just don't know how well this is going to go.

     I remember multiple incidents where my husband was hospitalized for one reason or another and I couldn't leave work to pick him up from the hospital, so one of my friends did it for me. So many times, I would go for coffee or lunch with my best girlfriend because something had happened with my husband's health and I needed to talk it out. What's going to happen now? I know I can always call them, email them, text them or whatever else I need to do to get in touch, but, at the risk of sounding like a child having a temper tantrum, it's not the same!

     I just have so much running around in my head right now that I hardly know where to begin. I'm leaving in three weeks to go to Charlotte and pick out somewhere for us to live, as my husband is currently staying with his friend Adam. By that time, I will have officially had my last day at work and will be in the final stages of my life in St. Louis. I don't know how I'll feel about it then, because I don't know how I feel about it now. It changes on a day-to-day basis, though overall I think I feel good about it.

     There will be so many blog posts coming, because there are so many issues with this move that I don't think most people have to deal with. I don't have the first clue if I'm handling them properly or not, but I guess only time will tell. Right now, I just need this outlet to try and get it all straight(ish) in my head before everything changes.

Saturday, August 11, 2012

I Feel Fine

     It's that time of year again - that one special day a year when my husband visits his cardiologist, Dr. Braverman, who also happens to be a leading authority on Marfan's Syndrome. My husband sees so many different doctors throughout the year, they all start to kind of blur together, but this one is different. Not only does he look after my husband's heart, Dr. Braverman is also the one who knows this genetic disorder inside and out and understands how everything all comes together. (Or falls apart, as the case may be.)

     It's a comfort to me each time he comes home from this particular doctor's visit with a (relatively) clean bill of health. That's not to say that I don't trust his other doctors, and God knows that at this point in the game, I'm not at all certain that all his medical care isn't just a giant science experiment, but to have one of the best in the business give my husband the once-over just makes me feel better. I'm well aware that one good doctor's visit is by no means a guarantee of anything, but how can it not make me hopeful?

     The methadone is still working better than anything else he's tried since we've been together, so I'm going to chalk it up to a success for now. I had to add the qualifier "for now" because I have no idea how long it's going to continue managing his pain this effectively. Thus far, every drug he's ever tried for pain management has eventually become ineffective because he inevitably develops a tolerance for it, thus rendering it essentially useless.

     The methadone may be different, though, since it's fully synthetic and a much longer-lasting drug. (Dilaudid works really fast and really well, but it's really better-suited for acute pain, not chronic pain, or so I've read.) My husband's cardiologist was pleased that this new pain management regiment seemed to be working so well, so that's always a plus when the different doctors seem to be in accord with one another's treatment plans.

     The one negative thing that came out of this visit was that the doctor told my husband he would prefer he stay away from the urgent care if at all possible. That makes total sense, because the doctors there are not at all familiar with my husband's unique medical situation and likely have never heard of Marfan's Syndrome. Perfect example? A few weeks ago, my husband's elbow was all swollen with cellulitis  and when it got to the super-painful point, he went to the nearest urgent care to get it taken care of.

     Really, it makes the most sense to go to urgent care for dealing with something so minor and that's exactly why he went that route. My husband figured that he'd get some antibiotics and be on his way and he was right, but damned if those antibiotics didn't wreak havoc on his INR levels. To be fair, the attending physician who administered the antibiotics warned him that he would have to go to his regular doctor to get his INR checked because the meds would probably screw with it, but holy hell, did they screw with it.

     He was sitting at a 7.4 (anyone not on blood thinners should be between 0 and 1) by the time he finished his round of antibiotics and went to get his levels checked. For those of you unfamiliar with what exactly that means, the easiest way to explain it is that he wasn't so much moving blood through his body as moving red Kool-Aid through his veins. It's because of things of that nature that my husband's specialist would rather he stay away from the uninitiated if he can manage it. I think that's a pretty reasonable request.

     All in all, I'm gonna say it was a win for my husband and I. Sometimes, when it seems like his health has been so bad for so long, when so many things have been so bad for so long, it feels like a major victory to hear from the doctor that things are going well, that we're doing it right. I know it doesn't mean blue skies ahead and things could change at any time, but damned if that small bit of validation doesn't feel so good.

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.

Monday, June 18, 2012

On the Mend

          My husband has been home from the hospital for about two weeks now and thus far, no major issues. It's almost always a bad idea for me to say that, because past experience has taught me that nearly every time I do, badness follows quickly behind. I'm going to take a chance anyway and throw caution to the wind, since we're nearly fourteen days removed from medical incarceration and doing alright. No more tiny strokes, no severe back pain, nothing that's sent us running for the emergency room. The nice thing is, I don't feel like this is the calm before the storm, a sensation I've often experienced before. This time, it feels like we may actually be reaching calmer seas after fighting to keep afloat in a months-long hurricane.

       I spoke last time of my husband being admitted to the hospital after I took him to the ER to be treated for severe back pain. We both assumed that he would be given his standard round of IV-administered painkillers and sent home with a prescription for more, which is the typical outcome of those visits. What I wasn't expecting was a 3:30 am phone call from him telling me that he was being admitted in the wake of the previous week's neurological scare. I can only assume that the doctors were nervous about letting him go home again after so recently being seen for a T.I.A. Then, too, there was also the small matter of his INR levels being all wrong.

     After the mini-stroke scare, my husband had been sent home with orders to complete a round of Lovenox injections over the course of the next seven days. Lovenox is a type of blood thinner which can work alongside warfarin, his daily dose of which my husband was supposed to continue to take. Mind you, all this was after he'd spent roughly twenty-four hours on a heparin drip in the hospital. So after all that, to show back up in the emergency room less than a week later, I would say the doctors were right to be a little overly cautious and re-admit him for observation, especially since his INR was STILL only at 1.4 (it's supposed to be between 2.5 and 3.5). That definitely registered pretty high on my oh-what-the-hell?! meter.

     I had to go to work that day, but I went over the hospital as soon as I got off to assess the situation. It wasn't quite the same set-up as usual, because he was in there for lingering issues from a previous incident and I can't think of another instance where that's been the case. Besides that, there was the fact that at this point, his stomach was bruised and bloody from all the Lovenox injections that he'd been given and yet his INR was apparently refusing to budge. Day two of his hospitalization came and went and the blood was still too thick, registering at 1.7. I was at work during the days, of course, but my husband would call me from the phone in his hospital room whenever the nurse or one of the army of doctors would give him some new bit of information.

     At first, I was more than a little concerned he was going to suffer another, possibly more debilitating, stroke while he was chilling in the hospital, waiting for his blood to thin out to the appropriate levels. When I mentioned this to my husband during one of his updates, he assured me that the whole point of the Lovenox was to ensure that this didn't happen. As I understand it, the way the drug works is by preventing the proteins in the blood which are responsible for clotting from allowing them to do that in the first place. Those same proteins are the ones being measured whenever his INR is checked and since the Lovenox doesn't actually thin their ranks, but rather just prevents the ones that are there from clotting up, that seemed to me to be the answer as to why his blood wasn't registering as any thinner, despite the abundance of blood thinners coursing through my husband's system.

     I've had to do this once before while writing this blog and I find myself compelled to do it again, because I just spit out a bunch of medical nonsense. I'm sure everyone is well aware, but I'm nothing even close to a reliable source of medical information. I regurgitate, as best I can, what the doctors tell me with regards to my husband's specific situation and I try to do it as accurately as possible, even going so far as to use that infallible research tool, Google, to try and deepen my understanding of things. My ramblings should not, under any circumstance you can think of, be construed as medical advice or knowledge. It's not and I would never in a thousand and two years purport to be able to do something like that. Just throwing that out there before we continue on with the actual important part of the saga...

     My husband called me on the fourth morning of his hospitalization and told me that he was, barring any unforeseen complications, being released that day. I was at my parents' house when the call came in, as I'd gone there after class the previous evening to spend the night since I was off work the next day. I paid particular attention to the part of the conversation in which my husband said he was being released "today", not "right this minute". As anyone who's familiar with oft-hospitalized people know, the process of actually being released can easily be an hours-long ordeal. I never go get my husband until he tells me the paperwork is being drawn up, and even then I usually have to cool my heels for half an hour or so.

     Knowing this, I finished up whatever it was I'd been doing at that moment and lounged around a bit longer before I headed out. It's nearly an hour-long drive from my parents' house to the hospital in the city, so there was a good three-hour gap in between when I first got the call and when I got to the hospital. I figured that surely the paperwork would be in process by then, if not completed. Yeah, about that. Whatever, the delay just meant we could get some quality Food Network time in before we were finally able to go home three hours later. By that point, I was so happy to have my husband home and not have to sleep alone again that I would've waited another six hours if that's what had been needed.

     My husband's condition since then has been so far, so good, with a few minor hiccups which will be related at a later date. Overall, though, I'm feeling pretty good about the fact that we seem to have left the whole stroke issue behind us. His blood is actually a little too thin at the moment, which is part of the thing, that will be related in a future post, but that's not a huge issue. It makes him overly bleedy, which is annoying, but not overly dangerous. Also, he's super-tired because of it, but that should resolve itself as his blood gets itself balanced out again. We both feel as though we're headed into a better place now; a new chapter, if you will. This T.I.A was one of the most serious things that's yet happened to us with regards to his Marfan's and we've come out of it relatively unscathed. That has to count for something.


Monday, June 11, 2012

Time to Get Ill

     I forget sometimes that people actually do read this blog with a certain amount of regularity, people who are not me and are not my husband. I think because I keep it like I keep my paper journal, I tend to believe that the whole business is solely for record-keeping purposes, something that my husband and I can go back and visit when we need to remember the chronology of something. That, or an easy way to get information about my husband's health to the people who love him on the other side of the country. As I've said before, I prefer this method because I can update our loved ones with what's going on without having to bug them with phone calls every time something happens. Every so often, though, someone I don't know will email me to tell me that they're following my writing. That makes me so happy to read, and even happier when those people send well-wishes my way because they know something bad has happened with my husband's health. Thanks for that, more than you know.

     My end of that bargain is to keep this blog updated as much as possible and as the aforementioned emailer (is that a word?) kindly pointed out, I've been lacking a bit in that area of late. True, I'm still in school, but my homework is much less this semester, as I'm only taking one class instead of four. I've got much more time to write now; I just need a kick every so often to get my lazy ass off Pinterest and over to my blog. What followed in the days after my husband's mini-stroke was really nothing that would raise any alarms, with maybe the exception of the fact that his blood wasn't thinning out quite as quickly as we'd assumed it would. When he went back to his doctor on the Friday following his hospitalization, his INR levels were still nowhere near where they needed to be.

     The number were slowing edging their way to the appropriate levels, though, so nobody thought much of it. And as it turns out, that wasn't even the reason I had to take him to the emergency room (again) last Tuesday. When I came home after my workout that night, I walked into the living room to find my husband curled up on the floor on top of his heating pad. That's never a good thing, but it was made worse by the fact that he was trying really hard not to move at all, which is a sure sign that the pain is becoming unbearable, if it's not there already. I asked him if it was time to go to the hospital and got an answer in the negative. I knew that was bullshit, but I let it lie and went to take a shower. I was pretty damn sure that he'd still be in the same place when I came back.

     For a girl who hates being wrong as much as I do, I really wish I was sometimes when it comes to my husband's health. Sure enough, there he was, curled in a ball in the same spot, trying to pretend it wasn't as bad as it so clearly was. While I have no desire to portray myself as less than pleasant, the truth of the matter is that there are times when my husband, for various reasons, refuses to acknowledge just how bad the given situation is and will NOT request that I take him to the hospital. This was one of those times. Lucky for him, I have absolutely zero qualms about pulling out the Unpleasant Wife card when I think he's in need of medical assistance, so I got down on the floor and I got in his face and I told him that we were going to the hospital.

      It was one of those times when the pain in his back was so bad that I had to prop him up while I put his shoes on, because there was no way he could do it. As soon as I had them on and he was ready to go, I grabbed his cane from the kitchen, as he needed it to get out to the car. What we really needed was his walker, but that lives at my in-laws' house in North Carolina, so we made do with what we had. I know how much he hates having to use his cane, but there wasn't really another option, seeing as how he was having a hard time staying upright long enough to get to the car.

     The ER was packed when we got there, as it so often is. I mean, it was so crowded I couldn't even stop at the front doors to get a wheelchair for him to be taken in with. I just continued on to the underground parking and, with the assistance of a kind stranger who saw me struggling to get him out of the car, got my husband into the elevator and checked in at the triage desk. And let me tell you, that right there, the getting him checked in at the triage desk? That was a feat and a half that night, as there was some little jackass with a sense of entitlement who thought it was a-ok to speak to the nurse as though she were beneath him, using every variation of the word "fuck" that he could think of in the process. This continued until the security guard simply wheeled him out the front doors, profanities streaming behind him. As soon as he was gone, damned if another one didn't start arguing with the same beleaguered nurse. Sigh...

     It was at this point that I decided to leave my husband in the nurses' capable hands, because there was no room for me there anyway. I told him to text me when they took him back to the treatment rooms and I would come back to pass the time with him until they let him go. At this point, we both assumed the usual battery of tests would be run while he was hooked up to an IV of Dilaudid and when nothing out of the ordinary was found, he would be released with a prescription for painkillers and instructions to come back if it got worse. That's how it always goes, that's how it's gone all 6,732 times we've done this before. I ran to get food from the nearest twenty-four hour drive-thru, figuring I'd get a text message before I'd even eaten.

      I didn't, though, nor did I get one after settling down in bed to watch an episode or two of Friends to kill time until I could go back to the hospital. It was past midnight by this point and still no news from my husband. Finally, sometime after I'd drifted off, the opening distortion of White Zombie's "Electric Head, Pt.2" rocking out of my BlackBerry jarred me awake. It was three in the morning by this point and my husband was being admitted. Not because of the back pain, but because his blood was still too thick and the doctors were not comfortable letting him go home so soon after he'd just had a fairly significant neurological event. Um. Something just wasn't adding up for me.

     Maybe it was because it was the wee hours of the morning, maybe it was because I was running on nothing more than broken patches of sleep at this point and I had to be at work at nine, or maybe it was because I just couldn't get my brain to function properly, but I did NOT understand what the hell my husband's stroke-like adventures from the previous week had anything to do with this visit. When I voiced this to him, he wasn't able to give me much information, as the doctors hadn't been super-forthcoming on their end as of yet. All we had to go on was that they weren't comfortable letting him go home and that he was being admitted for observation. And thus began an almost week-long hospital stay that was a bit different from those he'd had before...

Tuesday, June 5, 2012


     I know, I left the small band of you who kindly take the time to read my ramblings hanging after that last post. It wasn't intentional; there's just been so damn much going on around here in the past two weeks that I haven't been able to find the time to sit down at my computer. Well, that and the fact that my husband hasn't been home for the better part of a week and the basement, which is where my computer lives, creeps me right the hell out if I'm by myself at night. I wish I could say he's been away from home for some cool reason, like that he was interviewing for a fantastic job in another state, but it's not nearly so good a reason - he was in the damned hospital again. Before I get into that adventure, I really should finish recounting the last one, yes?

     As it turns out, the paramedics took my husband to the trauma section of the emergency room, which was the last part of the ER that we hadn't yet explored. I must have been a bit quicker than the nurse at the registration desk's information was updated, because when I walked in to inquire as to which room my husband had been taken to, I was told "Trauma 22, right" and given a name tag with my surname on it. Armed with this information, I pushed through the heavy double doors that separate the ER waiting room from the treatment area to find my husband. When I reached the correct room, I glanced in to see a rather small figure huddled under a blanket where I was told my husband should be. I hesitated, because while he's skinny, I knew he wasn't that damn skinny. Sure enough, when I worked up the nerve to walk up to the foot of the stretcher on which the patient was laying, I could see that it was clearly a youngish girl with hot pink running shoes. Definitely not my husband.

     I backed out quickly, before she woke up to find me creeping on her, and as I did, I saw the paramedics wheeling my husband around the corner down the hall. I didn't dare move to go to him, as the trauma unit is worlds away from the regular ER and I was doing my best to blend in with the wall. I personally have no experience in the medical world, but one of my best friends is a nurse and if I've learned anything from hanging around him, it's to get the hell out of the nurses' way when they're working. There weren't any rooms available at that moment, so my husband's stretcher was parked unceremoniously in the hallway right in front of where I was standing. He was immediately swarmed by no less than three nurses and a doctor, who started in with the questions right away.

     I recognized that the questions being asked were designed to evaluate how bad the damage suffered during what we assumed to be a tiny stroke was. I stood there, listening and watching, making sure that my husband didn't leave out any pertinent details, until the social worker-type person figured out that I was the wife and asked if I would sign the paperwork consenting to treatment on my husband's behalf. Of course I signed, but I felt weird about it. Even though we've talked about it more than the average couple probably does and I know that, as his legal spouse, I've got the final word when it comes to his medical care, should he become incapacitated, I've never actually had to exercise that power. I didn't like it.

     As the little Irish doctor doing the evaluation was able to eventually ascertain, the damage was virtually nonexistent. He was able to say with a pretty good amount of confidence that my husband had suffered a transient ischemic attack, or T.I.A. Basically, it's a tiny stroke that's usually the final warning shot before the big, potentially debilitating stroke. As soon as he said that, my husband and I looked at each other and knew right away what had probably happened. Remember when I said my husband was going off his blood thinners for a week in order to receive steroid injections in his spine? Yeah, about that. When they took his INR in the emergency room, he was sitting at 1.4. Normally, he needs to be between 2.5 and 3.5 to make everything work with his artificial valve, so that reading was less than good.

     Once the ER doctor had the full story about how my husband had been off his warfarin for the previous week and had only just picked it back up a few days before, he quickly put two and two together and told us that most likely, a blood clot had formed somewhere around that titanium valve and a tiny piece had broken off and made its way to my husband's brain, momentarily obstructing the blood flow. It was seriously only for the briefest moment in time, which is why there was no lasting damage. My husband had by this time regained about eighty percent of the use of his left side and his speech was normal again.

     Eventually, we moved out of the hallway and into a trauma room, where the same cognitive tests were performed on my husband every thirty minutes or so. There was no question that he was going to be admitted, but the staff wanted to make damn sure he was stable and not going to suffer another "neurological event" before moving him into a regular hospital room. Somewhere in all of this, the fire alarm went off and a prerecorded voice told us repeatedly to follow our nurse to the nearest escape route. No. Just no. Nobody else seemed excited about this, either, and one of the nurses came back to assure that the fire doors had been closed as a precaution, but that hospital security had assured her we were in no danger. By that point in the evening, I doubt very seriously if we'd be phased by something as random as dragons crashing through the ceiling.

      Once the battery of testing was finished for the time being, the small nurse released the brake on my husband's stretcher (no, really, those things have brakes, like a car, only it's a bed) and we started the trip to the eleventh floor. Can I just pause for a moment and say that I never really thought about how strong those nurses have to be just to do their jobs? I'm not talking about emotionally strong, though God knows they have to be, but physically strong. Those beds are huge and not light, especially with someone in them, but damned if she didn't maneuver him through the hallways and up a couple of ramps like it was nothing. Impressive.

     After my husband was settled on the floor, it was pretty standard procedure from that point on, really nothing we hadn't encountered before. The one exception was that every nurse and doctor who came in gave him the same "smile for me, BIG SMILE" test that I knew they were using to test for facial paralysis. Hell, we even settled in to watch the same show that we always watch in the hospital - "Chopped", on the Food Network. It's kind of become our ritual, one that relaxes us, as much as anyone can relax in that place. I eventually left, sometime after midnight, as I had to work the next day and begin the usual round of phone calls to Jean, my sister-in-law and Adam, my brother-in-law.

     I was able to take my husband home the next day, after he'd been inspected by what seemed like every neuro doctor in the place and pumped full of heparin to get his blood thinned out. We stopped at the nurses' station on the way out to thank them, because they really are wonderful people and we see them an awful lot. That night, laying next to him in our bed, I was just happy to have him home. I wasn't even thinking about the bullet we'd just dodged, though I probably should have, since the lingering complications from said dodged bullet would seriously ruin my day just a week later.