Friday, December 30, 2011

A Day in the Life

     The entryway to the hospital where my husband always goes for treatment is really spectacular at night. You have to take an escalator up from the bottom level of the parking garage to get there and though I've traveled those moving stairs more times than I care to count, it never fails to make me feel like I'm being pushed into the prettiest night sky I've ever seen. It's a huge glass walkway that's crisscrossed with strips of  white lights. They're LED lights, I think, so they're not just white, they're white, like the purest form of illumination you've ever seen. In all the times I've been there, I've never seen a single burnt-out bulb or socket without a bulb in it. I suspect they've employed someone whose only job is to maintain the walkway's luminescence.

     I think those lights have a similar effect on the other people who traverse that walkway, because it feels like conversations stop once you're under the lights. It's something calming and beautiful in the oddest of places and perhaps that's what the architect intended when he or she decided to make it anything but the typical sterile hallway that so many hospitals are fond of. A place to gather yourself before walking into the unknown of a loved one in the hospital, somewhere to soothe yourself before driving home alone after a tense, emotional day of listening to a never-ending stream of medical jargon. Or maybe that's just my take on it.

     The escalator that takes you up into the walkway is actually really narrow, only wide enough for one person. It's an odd feature in a place where the support and comfort that comes from human contact is so very essential, but it's not as though you spend more than sixty seconds at a time in that place. I tend to focus on the small, inhuman details when I'm at the hospital because it keeps my mind from wandering. If I don't concentrate on the placement of the coffee kiosk, I might find myself wondering if the crying woman who just passed me in the lobby has lost her husband, or if the thin, disheveled man wandering around with an IV tower is on yet another unsuccessful round of chemo. I'm a naturally empathic person on my best day, so at times when I've got my guard down, whatever sad story I attach to these strangers can be my undoing.

     There's really no time for coming undone, so the best thing is to keep moving towards the bank of elevators in the center of the lobby. It can be tricky, dodging all the people who are there to visit their sick friends and family members, but I'm getting pretty good at it. I'm even getting to the point where I can tell the difference between the first-timers who are only here for a quick visit and don't expect to have to return anytime soon, and the ones who are familiar with the territory. As someone who's more familiar, I move differently than the others, with a surety that makes it clear I know where I'm going, I've done this before. I see others move that way and I know that this isn't their first trip, either.

     One nice thing about my husband's trips to the hospital? He always gets a private room because he had a staph infection years ago and now there's a big, fat MRSA stamped somewhere on his chart, meaning he never gets a roommate. This means I can stay with him as long as I like, observing the nurse take his vitals every couple of hours and watching the Food Network on the little TV attached to the wall next to his bed. It's actually really peaceful after all the other visitors have gone home for the night. The nurses offer me a blanket and to roll another bed into the room if I want to spend the night. Once I did, because he was in there on my birthday and I wanted to wake up with him that morning. Last night, though, I went home.

      It's a very different experience, leaving the hospital in the early hours of the morning, than it is coming in during the early evening. There is no one in the elevator and it doesn't stop to pick up any other passengers on its way down from the eleventh floor. When you step out, there's nothing to hear but really terrible Muzak. I mean, REALLY terrible music, even worse than the hold music you have to listen to when you call the front desk find out someone's room number. There aren't even any janitors vacuuming or sweeping in the hallways. There are a couple of stragglers that usually make their way through the lobby to the parking garage, walking, I assume, I like me. That is to say, tiredly, because they've been there too long and they know they'll be coming back too soon.

     There are security guards at the front desk at this time of night, instead of the jacketed concierge who direct you to where you need to be. The fountain in the center of the lobby is still running, only instead of being background noise, like it was earlier, it's harsh and grating. The water spews out of the center of the pool before crashing back down and it's an ugly sound, especially when everything else is so quiet. The wonderfully-lit walkway that leads back to the parking garage is the one thing that doesn't feel creepily somber at this late hour. It's even better than it was before.

     When you're the only one walking it, you can look up at the lights and the sky that shows through the triangles of glass as you walk, since there's no one to accidentally bump into or give you strange looks. It's so incredibly quiet, too, like your footfalls aren't even making a sound. I know they're not being completely absorbed by the industrial gray carpet, so I don't know how it's possible. It happens, though, I promise. You can pause to look out at the street that runs in front of the hospital, usually one of the busiest in the city of St. Louis, and see that there's no one and the lights have all gone to flash. That's comforting, too, in a way, because then you can just think about the day that was and not have to pay too much attention to fighting for position in traffic.

     The drive home is pleasant, since the highway is virtually empty. In St. Louis, we tend to drive however the hell we want, so it's almost always an adventure to get from A to B. In the very early morning, though, it's a totally different story. With no one to compete with for lane space, you can just drive and it's calming, relaxing even. By the time I pulled off the highway onto the ramp that leads home, I had almost convinced myself that this night was no different than any other. Just another late night at work; he'd be down in the basement, playing on the computer, waiting for me. He wasn't, of course, and that reality was brought home by walking into the totally darkened house, so clearly uninhabited by any non-feline life.

     Fed the cats, who are actually quite poor company when you're feeling blue, in case you were wondering. They're moody, aloof little beasts who could really care less about anything other than that the food in the bowl is at an unacceptable level. The bedroom was too large and cold without him and the bed itself completely unappealing, so onto the couch with a couple of blankets. It's not nearly as comfortable as the bed, but at least I might be able to sleep for a couple of hours if I leave the TV on for company. Waking up every forty-five minutes or so because your body knows instinctively that something's not right is one of the least fun things ever. It knew there was supposed to be a warm husband there next to it, not a tiny, furry creature that yowled irritably every time it was disturbed. It knew that things wouldn't be right until he was home again.

    

Wednesday, December 28, 2011

I've Got a Feeling I'm Falling

     To be more accurate, my husband was the one doing the falling and there wasn't really a feeling that preceded it; he just went down. It happened last Monday, as he was getting out of bed to turn the alarm clock off. Since he leaves for work before I do, I was still soundly asleep when something happened and he went crashing to the bedroom floor, shaking the house and waking me up in a most unpleasant fashion. I came up from the bed immediately and I knew instinctively that the loud thud had been my husband's two hundred-pound frame hitting the floor. That probably shouldn't have been my first instinct and the fact that it was speaks volumes to what it's like living with something like Marfan's Syndrome. I guess it was just lodged in the back of my brain somewhere that this was going to happen sooner or later.

     He wasn't really moving or making noise when I jumped out of bed, though to be fair, I didn't have my contacts in and I'm all kinds of blind without them. Again, I guess it was instinctual, but even as I knelt down next to his curled-up form on the floor, I wasn't ever afraid that the dreaded aortic aneurysm had let go; I knew it had to have something to do with his back. I didn't touch him as he lay there, but I asked him what happened, what hurt. He couldn't really respond with details, mostly because he didn't know. He managed to convey to me that he needed to go to the hospital, so I quickly got up and made the standard preparations, i.e. send an e-mail to his boss letting him know that he'd be making a trip to the emergency room instead of to work.

     I got up and got ready for work, since I had to be there in a couple of hours and I intended to hold to our standard operating procedure, which is to drop him off at the ER, see that he's settled and then go on to work. I was almost ready to go and my husband still hadn't been able to make it up off the floor where he lay in front of my dresser. I couldn't get him up by myself and he'd been down there for about thirty minutes at this point, so I told him that if we couldn't get him up in the next ten minutes, I was going to have to call an ambulance. If there's something he hates more than calling attention to his disorder, I don't know what it is and the thought of being hauled away in an ambulance was apparently worse than the pain he was in, because he dug in and, with my assistance, made his way off the floor and onto the bed.

     I dressed him, put his socks on, tied his shoes. I didn't look at his face while I was doing this, because I knew how much it pained him, both physically and emotionally, for me to have to do the most basic of tasks for him. He hates it, absolutely detests it, that his disorder can, at times, render him helpless to some degree. He's such an independent soul, almost to the point of his own detriment, and as someone who's very similar in that regard, I have to do everything I can to respect that about him and ease the frustration when things like this happen. I'm usually not successful in easing his frustration, but that's going to be a lifelong battle and one that I can only hope to win piece by piece.

     My husband had to use his crutches to get to the car, which is something new for us. He's used his cane before, or put his hand on my shoulder for support while he's walking, but this time he could barely move, even with the extra support from the crutches. As I stood behind him, watching him make his slow, painful way down the hall to the kitchen door, I couldn't stop the bad thoughts from flooding my brain, unwelcome though they were. It struck me so hard in that moment how bad this could potentially get, that his semi-immobility has every possibility of becoming a daily occurrence and neither of us is even remotely prepared for that.

     The actual hospital visit was relatively uneventful, except that my husband asked me if I could go get a wheelchair for him, as he couldn't walk into the building under his own power. That's also a new one for us, as he's always been able to at least walk as far as from the car to the emergency room, but it wasn't a surprising request, given the events of the morning. The nice security guard at the front desk went and got a wheelchair for me and came out to the car to get my husband and take him in while I parked. I stayed only long enough to see his vitals taken and make sure he was as comfortable as he could be in the waiting room before I had to leave for work. I always hate leaving him there, but the practical side of me knows that there's nothing else to do. Once he's taken back to the room, he's immediately drugged anyway and doesn't know if I'm there with him or not.

     As it turns out, the dural ectasia is responsible for this latest ER visit. Truthfully, I've read about dural ectasia, what it is and what it does, until it felt like my eyes were ready to bleed and I still don't completely understand what the hell's going on. What it essentially boils down to is, the dural ectasia kicked in, caused my husband to have a head rush of epic proportions and he semi-blacked out/lost all sense of balance and control and went down hard. That's why he didn't catch himself when he started to fall - he couldn't, because he didn't know he was falling. I had something like that happen to me when I was thirteen and to this day, I'm afraid of it happening again, even though it was a freak thing and the odds of recurrence are slim to none. I don't know what it would be like to know that the loss of control could happen at any moment, anywhere.

     I want to end this post with something lighter, smart-assed, even. What I want and what is are two different things, though, as can be the case. I can't be light about this, however much I want to, because it was a significant occurrence for my husband and I. All the little discrepancies, the ways that this time was unlike all the others, can't be discounted for what they are. Now, what they are, I can't say with surety. They could be markers of what's to come, indicating that the degenerative nature of his disorder is really picking up steam. They could be nothing, the flukes that happen because the human body never reacts in exactly the same way twice. Or they could be indications that my husband's second spinal fusion isn't so far off on the horizon, which is my favored theory.

      It wasn't exactly light, but damned if there wasn't hope there. I'll settle for hopeful.

Tuesday, December 27, 2011

All I Want for Christmas Is You

     You all know how excited I get when someone contacts me out of the blue because they've come upon my blog somehow or another. It's one of the reasons I started writing this thing in the first place, so that I could possibly connect with other partners who are on my side of the disorder that is Marfan's Syndrome. It's lonely and hard at times, not feeling like you have anyone to talk to who really gets what you're saying and is instead just making sympathetic noises. That's not to say that the friends and family I do discuss my husband's disorder-related adventures with are giving me lip service, because I don't believe for a minute that they are. My loved ones absolutely empathize with whatever it is I'm upset about in that moment. The key word, though is empathize, not sympathize, and the difference between the two can be profound.

      As much as I could never put a price on how much I value my circle of friends and family who help take care of me and my husband when it comes to dealing with his medical issues, I'm going to be extremely selfish for a moment and admit that I want more. Do I deserve it? Probably not, as no one is entitled to anything in this life and I'm already far and away better off than so many, just by virtue of being born in a first-world country. Political overtones aside, I feel I'm especially greedy in this wish considering that I've been blessed with so damn many people that I can open up to anytime I want. And I do mean anytime - I've had conversations with friends at 2 a.m. when I'm too bugged to sleep and they've always answered the cell phone for me. I doubt very seriously if that will ever change.

     What more could a girl want, right? A very specific type of sounding board in human form, as it turns out. As my husband's health declines and his disorder progresses, I find us both in increasingly uncharted waters and damned if I have the first clue how to navigate them. I question myself constantly when it comes to any decisions that I make about how to handle his various issues and he questions himself just as frequently. Each of us is not only trying to make the best decision for ourselves as an individual, but also as one half of a couple. It complicates and already-messy situation to levels that neither of us has any experience in dealing with and frankly, neither of us is at all sure of our footing.

     I really, really want someone who's in the same situation to tell me I'm doing a good job, that I'm helping my husband make the right choices and that I'm not completely screwing us both. There are so many facets of a chronic, debilitating disorder like Marfan's Syndrome and I swear we get presented with a new one every other month. There are physical aspects of it, emotional, mental, legal. There are issues I never in a thousand years would've guessed that I would be facing in my life and now they're a pervasive presence in my marriage and in my life as a whole. I'd like to think that I'm doing somewhat better than fumbling through, but I can't be sure and thus far, I've yet to find anyone who can reassure me otherwise.

      That's probably a bit elitist of me, actually, that line of thinking. After all, empathy counts for just as much, if not more sometimes, than sympathy does in a scenario like mine, doesn't it? I used to think so, but now I'm not so sure. Having lived this for the past two years and having a pretty damn good idea of what's coming up around the bend, I have to say that I'm at a point in my life where I need someone who can say they've been where I've been, exactly. I need someone who has seen/is seeing life through the same lens that I do on a daily basis and tell me that what I'm seeing isn't warped. I need someone to tell me that yeah, they've been there exactly and it's either going to get better once we get past this point or, alternatively, it's going to get rockier still and I need to batten down the hatches if I hope to weather the storm.

     Like a few of my other posts, I hesitate for awhile before pulling the trigger on actually posting this, because I know there's such potential for hurt feelings and that's the last thing I want. I eventually came to the conclusion, though, that those who are closest to me know me well enough to know that my words in no way mean they're not enough. They know how much they're loved and needed and that's exactly why they're the people in my life who are most important, because they know what they are to me. I'm also a firm believer that no one can be everything to someone and so you need a full cast of characters to fulfill all the roles in your life.

     I love my husband more than anything, but he's not my best friend. We're friends, yes, but there are things I don't go to him with, that he'll never understand. Likewise, there are times in his life when no one but Adam can really understand what's going on in his head. It's the same principle at work here, when I say that I need to find other Marfan's spouses to talk to. I'm a pretty articulate person even on my worst days, but this is like nothing I've ever experienced and there are some aspects that I just can't discuss yet, even though the words are there. Actually, that's only semi-true; I can discuss them, I just don't know with whom. To find that person would be such a relief, for both me and my husband.




Wednesday, December 21, 2011

How Many More Times

     About a week ago, my husband and I were getting ready to go to bed and just before I turned off the lamp next to my side of the bed, he suddenly tensed up and gasped. I turned my head to see him rigid and bowed up towards the ceiling, breathing through his clenched teeth. While that pose could easily be interpreted by some as, "Oh no! I'm suddenly possessed by a demon!" a la The Exorcism of Emily Rose, I knew that it meant he was in the throes of a sudden muscle spasm. Sure enough, when I asked him what was going on, he said that his back was cramping up violently. After a few minutes, it started to let go of him, just a bit, and he was able to resume normal breathing. He tried to relax into the mattress, but I could still sense something was off.

     He continued to shift around a bit, trying to get comfortable, but it wasn't going to happen. Apparently, there was a particularly bad knot in his back muscle that was making him feel as though he were laying on a baseball. I couldn't imagine that felt very nice at all, so I suggested a Flexoril to help relieve the pain and maybe allow him to get some sleep. I know that it's a weak-ass suggestion, but that and hot showers are typically all I have to work with. We don't keep anything stronger than ibuprofen in the house and nothing short of Dilaudid in an IV would've touched it anyway, had he been in serious pain. Clearly this wasn't hospital-worthy, so he took his muscle relaxer, I turned off the light and we both went to sleep.

     The next morning, I was awakened much earlier than I wanted to be, especially given that it was my day off. If my husband's making enough noise to wake me up, I know it means one thing - he's in serious pain and considering calling in to work. Even though he's not in danger of losing his job over missed days due to his disorder, I still wish things weren't this way. I was brought up to believe that you only called in to work when there was absolutely no way you could be a functional human being that day and for most of us, those days are few and far between. I'm still learning that, for my husband, those days are far more frequent and far more debilitating than I'd like to think.

     The other side of that argument, though, is the "Push through it" mentality, with which I'm very familiar. It was that line of thinking that I employed when I said to him in the early-morning darkness, "Please don't say what I think you're going to say, not again." I know how cold that sounds to some, how unsympathetic, but just hear me out on this one. The reason I said what I did and encouraged my husband to get up and get in the shower with the water as hot as he could stand it is because I really believed it would be to his benefit. I have to believe that there are still methods available to him that he can use to feel okay and go on about his business in as normal a manner possible. For God's sake, he's only thirty-eight and this cannot be happening with this level of frequency. Can it?

     Maybe it can, that's the real hell of it. My husband has moved into the past-his-prime period of his life, which is not all that off-schedule from a normal person, when you think about it. I would guess that forty is about the age where people really start to feel their living, though I don't personally believe that marker should by any means be seen as the beginning of the end. It's just that, statistically speaking, forty is roughly the halfway point of the average person's lifespan. So when I look at it in that light, it doesn't seem so bad that he's beginning to have more bad days than good. Actually, that's not true - it feels just as bad and the mental acrobatics I'm pulling to make it seem okay are rather unsuccessful. I keep circling back to the fact that he's only thirty-eight and these days are coming faster and harder.

     That's why I pushed my husband to get up and get going that morning, because I believe these mornings can't all be I-can't-get-out-of-bed mornings. Sometimes I have my doubts about doing this, since I obviously can't know how badly he hurts, nor what his true limits of pain tolerance are. In that respect, I have to trust that he will tell me when he truly can't do it, as was the case this past Monday. (That was a whole new adventure that I'm sure I'll write about soon.) I also have to rely on him to know when he's really at his limit versus just being tired and achy. Basically, there's a whole lot of trust going on here in levels most couples don't ever have to touch. It's also entirely possible that I'm overthinking this whole issue, because I tend to overthink things like it's my job.

Monday, November 28, 2011

Fortunate Fool

     Every year around Christmastime, the local newspaper prints weekly installments of something called The 100 Neediest Cases. It's a list compiled by the United Way that gives a brief description of 100 local families that are in desperate need of food, clothing, financial assistance and other things that most people, myself included, tend to take for granted. I've known about this project since I was in high school, when my little sister won an art competition and her pen-and-ink drawing was selected to illustrate one of the stories. Every year since, I've made it a point to read about each of the families profiled and whenever I've had the money to spare, I've donated to whichever case makes my throat swell up the most. It's never much, but it's what I can do.

     This isn't the first year my now-husband and I have spent Christmas together, but it is the first time that reading these stories has made me pause and really think about what his Marfan's Syndrome means to our life together. In a lot of ways, it's a royal bitch, always making itself known at the worst possible times and very rarely allowing us to forget completely that it's there. We can't ignore it any more than the ticking of his aortic valve can be ignored. Maybe, though, maybe it's not as bad as all that. Maybe I let it become too much in my head and it blocks everything else out, or at least becomes so much larger that everything else seems insignificant by comparison.

      It shouldn't be that way, I'm thinking. It shouldn't be a struggle to try and focus on all the good I've got going for me, but it has been lately. The past four months or so have been the hardest we've yet experienced as a team and though I wish I could say it's beginning to ease up, it's not. In fact, I just got some seriously annoying news today that was apparently the straw the camel's back has been waiting for. I've kind of had it with the bad stuff, though, the feeling like the good is so far away, a speck of light that we're always slogging towards with little progress to show for our efforts. I'm really sick of that feeling, actually, so why don't I tell you about some of the things I'm really glad I've got, the things I couldn't be more grateful for if I tried? Yeah? Here goes.

     1. Just now, I am insanely grateful for my husband's friend Adam. He's actually much more like family to us than a friend and recently, when my head was just too damn full and I needed badly to release some of it, he was there. That's what love is, people - when your best friend's wife calls you and rambles nonsense for over an hour and instead of just giving canned responses or cutting the conversation off when you get bored with it, you actually listen and help her out. It's good stuff.

     2. By the same token, I don't know where I'd be without my friend Frederic. We've grown up together, experienced just about everything that can be thrown at a person in two short decades and we're still together. Frederic will always have my back, even if I'm wrong in whatever it is I'm doing. He loves me and I loves him and I'll always be grateful that we were assigned to the same second-grade teacher so that we could become friends.

     3. My in-laws. They accepted me unquestioningly, even though their son broke the news he was going to marry me before they'd ever had a chance to meet me. (Remember, my husband's from Charlotte, NC and we're in St. Louis, MO, where I've lived my whole life.) That's taking a whole lot on faith, but they did it. I've got a hell of a lot of love and respect for them.

     4. I cannot overstate the miracle that is having health insurance when you're dealing with a disabled person like my husband. I've probably mentioned this before, but even with the kick-ass insurance that we get through our employer, my husband and I have paid out at least two thousand dollars this year in co-pays for medicine, surgeries and doctor's visits. Granted, that total is for both of us combined, but when you consider that today was only my second doctor's visit this year, I think you can figure out on whom we spent the lion's share of that money.

     5. My family will never let my husband and I fall. Ever, not even a question. I don't to imply that his family would, because they wouldn't either, but my family is in close physical proximity, so they're the ones we have to call on when something goes down. Remember that one trip to the ER that had me really flipped out? I put in a call to my mother and she was all, "Oh, alright, I'm on the way," and by the time I got there, she was sitting in my husband's ER cubicle, trying to force him to eat his hospital food. When my husband recently had to quit his second job and we didn't know if we were going to be able to stay in our house, we knew that we'd always have a home with my parents. You know, the little things like that.

     6. You probably won't get this unless you're a gamer, but I'm grateful for my guildmates. There are a small group of them who are a little more, um, unruly than is probably accepted in polite society and these guys are the ones who can make my day better when everything else has failed. Granted, they don't know they have that effect on me. It's the fact that they carry on as normal, being rude, gross and generally obnoxious, that makes it so good. When I'm gaming with them or just listening to their always-entertaining banter in TeamSpeak, it's like a Marfan-free zone. I and my husband can both truly forget, just for a little while,  that he's not healthy. That respite is worth more than I can articulate.

     I could go on like this for pages and pages and the fact that I can makes me feel better in and of itself. It's an awful cliche, I know, but God, it helps to take a minute and remember everything you've got to be grateful for every so often. I don't do it enough, because the bad things demand so much more attention and brainpower. It's not that the good things are hard to remember; as you can see, when I sit down and dedicate myself to the purpose, it's really easy to think of all the good. And that tiny list? Not all the good in my life, not by a long shot.
    
 

Wednesday, November 23, 2011

Oh No, Not You Again!

     He's been getting head rushes with ridiculous frequency lately, has my husband. It's not that he's not used to them, since they've been a constant in his life for the past ten years or so, but they're not fun and they're starting to make their presence known in a more insistent manner. It was particularly bad a couple of weeks ago, when he felt as though he was going to fall over nearly every time he stood up from his desk. I know he really doesn't enjoy it when they happen this insistently, but there's nothing much to do about it except wait them out. Actually, scratch that - he doesn't enjoy them when they happen ever. 


    The most accurate description he's been able to come up with to describe them to me is that it's like having  a regular head rush, like when you stand up too fast after you've been sitting awhile, combined with a brain freeze from eating something cold too fast. It's painful for him and he's unable to see for a few seconds because his vision suddenly becomes nonexistent. At that point, my husband has to sit down before he falls down and wait for the badness to run its course. Though he's suffered from this nonsense for years, it took awhile to figure out what exactly was going on, because like damned near everything else with his Marfan's, it wasn't easily recognizable for what it was.

     Dural ectasia, while not present in every person with Marfan's Syndrome, does effect more than sixty percent of those who do have the disorder, including my husband. I shouldn't be surprised, really, since he's got just about every aspect of Marfan's present in varying levels of severity. What did surprise me was when my husband revealed that it wasn't identified as dural ectasia until sometime in 2006, a good decade after his spinal surgery. Given that he had to have all kinds of tests and CT scan-type things prior to going under the knife, I thought it would've been detected at some point and made it clear that he had some serious shit going on back there in addition to the scoliosis that he was there to have corrected.

     I think I'd heard of the term "dural ectasia" before I met my husband, but only because I'm a complete bookworm and read anything and everything I can get my hands on. I'm full of random knowledge because of it and if you're looking for a trivia partner, I'm your girl. In any case, knowing what the word is and knowing what the condition is are two completely different things. The short version, in the best summation I can manage, is that dural ectasia is the enlargement of the membrane that surrounds and protects my husband's central nervous system, i.e. his brain and spinal column. While not always problematic in the people it affects, my husband is one of those lucky ducks that suffers from headaches, head rushes, intense lower back pain and numbness in his legs as a result.

     Based on the (limited) information I've been able to find about it, it seems that dural ectasia can pop up at any time along the way, so perhaps that's why it wasn't found when my husband went in for spinal surgery all those years ago - it hadn't arrived on the scene yet. I've read that a CT, a mylogram or a spinal film all might clue the doctor in to what's up, but none of those are fail-safe methods. I'm still not completely sure why it took as long as it did to properly diagnose, since he's got what seems to be a textbook case. Not that I hold it against the medical community for taking awhile to figure it out; Marfan's is classified as a rare disorder, after all, and one can hardly expect their general practitioner to know every possible aspect of it.

     Truthfully, having a name for what's going on doesn't really change much. Granted, now that he knows what's causing the head problems, he can stop worrying that it's something more dire, like a tumor. That's a relief, but as there's no cure or really effective treatment for the issues caused by dural ectasia, it's just giving a different name to frustration. There's pharmacological pain management, of course, though I've mentioned before how ineffective that course usually is due to my husband's ridiculously high tolerance of all things narcotic. Beyond that...there's nothing else.

     I don't know how this is going to affect things when he does have to have his second spinal fusion, because in addition to thinning the dura itself, dural ectasia also thins the vertebrae. So that's exciting. With that part of it, the worrying about how it's going to affect him when he has his next spinal surgery, I feel like I'm borrowing anxiety because it's not something that's a reality at the moment. We've got enough actual things to worry about, most of them the mundane problems that everyone I know has to deal with, that I have no business looking for more. I know that, logically, but sometimes I find myself looking without realizing what I'm doing. Ugh.

     It'll get better soon, the frequency and intensity of the head rushes; they always do. This is just one more aspect of the whole that ebbs and flows as it pleases. It pisses me off every so often, but that's simply a manifestation of my frustration at seeing him in pain and being able to do nothing. It's not a new sensation and while I hope I get better at dealing with the frustration, at the same time I wonder if that's wrong. (Come on, becoming desensitized to your husband's pain? Does that strike anyone else as being more than a little fucked up? Thoughts for another day...) The best I can hope for at the moment is to drill the phrase, "Sit down before you fall down," into his head and hope it sticks.

Monday, November 7, 2011

Earthquakes Come Home

     It's semi-creepy, I know, but I love the feature on my blog that lets me see what phrases people type into various search engines that somehow land them here, on my virtual doorstep. Most days, there isn't anything too unusual, nothing that really piques my interest. Every so often, though, someone will type something that either pulls at my heart or just makes me perk up my ears, figuratively speaking. I experienced the latter when I logged in today to find that someone had searched for "eye dr's in charlotte nc that know marfans syndrome". Say what? I actually pulled my husband over from his computer desk so he could look at my screen and see the phrase, because it surprised me not a little.

     Don't get me wrong, I know there are hundreds of thousands of people who were born with Marfan's Syndrome, same as my husband. It's not like he's got a lock on the disorder or anything. Furthermore, I'm well aware that these people live in cities all over the world, even in different countries! (That was sarcasm, for those of you who were reading the last bit and thinking I was some kind of moron.) It's just that my husband's disorder is still technically classed as "rare" and what are the odds that of all the cities in all the world, another Charlotte-dwelling Marf would find my tiny corner of the internet? Um, they're actually pretty good, when you think about it. I've said more than once that my husband moved to St. Louis from Charlotte, I've got more than one entry published about his eye issues and the whole damn thing is about Marfan's Syndrome.

     Now that I've put on my thinking cap and solved that vital and thorny riddle, I have to pause and wonder why the hell I was so surprised in the first place. I think it's because I'm always a little taken aback when I see random hard proof that my husband and I are not alone in this. It's so easy to feel isolated, especially when there's a lot going on with regards to his disorder and it's immediate effect on one or more aspect of our lives. Though I almost don't want to say it, for fear of hurting a supportive friend or family member's feelings, the truth is that no one will ever completely be able to sympathize with you unless they've dealt with it themselves. They can empathize all day long and believe me, that sentiment is much appreciated. Knowing there's someone else swimming the same waters that you are, though, that's a different kind of comfort.

     My husband has never told me too much about his life in Charlotte as a Marfan's kid, probably because at that point he was busy pretending it wasn't there. That's always been a bit difficult to wrap my head around, considering that he was in Charlotte when he first got the diagnosis and that's where both of his major surgeries -spine and heart - were performed. Actually, scratch that - it's been damned near impossible for me to get my head around that line of thinking and despite my best attempts, I haven't even gotten close. From what I can gather, it was like he lived his life as if he didn't have Marfan's, paused whenever something came up that he couldn't ignore, like OPEN HEART SURGERY, then went right back to whatever he was doing. I'm veering off-topic, I know, and that whole mentality that I just mentioned? Those are several posts for another day, so allow me to get myself back on track.

     The Charlotte person who stumbled onto my ramblings - another part of why it surprised me is that while I know my husband couldn't possibly have been the only one with Marfan's Syndrome in a city that size, it sure as hell seems that way most of the time. As I mentioned before, despite having the most significant events related to his disorder occur within its limits, it doesn't seem that it started having a real effect on his life until fairly recently. (I mean, aside from the daily meds that he was assigned when he got his shiny new aortic valve.) He's never really been what you'd call a joiner in terms of social groups, but at least when he got to St. Louis, he gave attempting to make contact with other Marfs a shot when he attended a support group. Once.

     Theories abound as to why I've got it in my head that my husband's Marfan's Syndrome is a St. Louis thing as opposed to a Charlotte thing or, you know, a lifelong thing, but I don't know that any of them have any validity. Well, actually, I suspect one of them may be pretty close to the truth, but it's something I've got to discuss with my husband with a little more depth before I bring it out into the light of day. There's so much potential for hurt feelings and that's the absolute last thing I want. At the same time, though, my husband and I are slowly, slowly moving towards unearthing the painful parts that are the root of some of the problems we face together. The people and the place that he came from before he ended up here are such a part of it, maybe the whole of it; I just don't know yet.

Thursday, November 3, 2011

Gentle Execution

     When I first started college, I was seventeen years old and desperate to get out of the small town where I'd grown up. There were fifty-eight people in my graduating class and it seemed like every other person I ran into was a cousin of some sort, so you get the idea. (I know, this sounds like the plot of every small-town-girl-makes-good-in-the-big-city TV show ever aired, but stay with me here.) My father was insistent that I do two years at the local community college because it was the practical thing to do and I was even more insistent that I not. Luckily, I was accepted to a small, private university in St. Louis, which was about an hour or so from my home. Though it was expensive, I got a few grants and some loans and made it work. The biggest part of the reason I was able to make it work, though, had nothing to do with financial aid and everything to do with my grandparents.

     Their house was about a mile from the university and not only did they call me to tell me I could live with them, rent-free and with all the grandma-cooked meals I could eat, but they even built me a lovely bedroom and bathroom in their basement so that I would have more privacy. Amazing people, no? I ended up living with them for a little over three years, remain very close to my grandmother (I lost my grandfather last summer) and genuinely enjoy spending time with her. She's recently moved into a new condo and since I had the day off this past Tuesday, I thought I'd go visit. She's wonderful to talk to, very German and no-nonsense in her advice and opinions. It's also nice to catch up on what's going on with the rest of the family, because as we've grown up and started down our separate paths, it's become more difficult to keep tabs on everyone.

     I'm sure that by now you're thinking, "That's all just ducky and as heart-warming as can be, but what the hell does it have anything to do with Marfan's Syndrome?" The thing is, one of the topics that always comes up is my husband and the current state of his health. My family obviously knows about his disorder and though they're not the type to pry into what they view as my private business, they like to know what's going on. So I was telling Grandma the latest on my husband, giving her the run-down of our latest adventures, and the topic turned to aortic aneurysms. It's not the first time I've mentioned them to her, but when Grandma held up her hand and said, "Okay, let me stop you there for a minute," I thought maybe she'd read something somewhere and had a new snippet of information for me.

     Turns out, she did have some new info for me, but not of the variety I was expecting. The thing is, my great aunt passed away a couple of weeks ago and no one was one hundred percent sure why. My great aunt was my grandma's younger sister and it was hard on her, not only because she had lost a sister, but because it seemed to come out of nowhere. My dad was the one who initially broke the news to me and he had very few details to give. He knew that she'd been alone when it happened and it appeared that she'd fallen or something, but beyond that, we would just have to wait for an autopsy. Grandma, though, turned out to be better-informed that her son was.

     The cause of death, according to my grandmother, was an aortic aneurysm that let go suddenly. It must have been a large one, catastrophically large, because my great-aunt was gone almost instantly, from what could be deduced. When she told me that, I was a stunned for a minute, just stared out the window. As Grandma told me more of the details, I kept on staring and I'm pretty sure part of my brain shut down. I won't use any cliches like, "My blood ran cold, " or, "I felt a ball of ice begin to form in my stomach," because that's not what I felt. To be perfectly honest, I didn't really feel anything unusual at that moment, other than a sadness at listening to my grandma talk to me about her little sister's death.

     That's why I believe part of my brain quit on me right at that moment, because I was able to keep talking, to keep thinking, as if one of my worst fears hadn't been realized in a manner that hit much, much too close to home. It's a self-preservation thing, I think, like when you can't remember a traumatic incident. You were there, you experienced it, but your brain knows itself better than you do and so knows it doesn't have the capability to process what happened accurately. It would be too painful and cause too much harm to the body in which it resides, so it just blocks those minutes out like they never happened. A chunk of my brain had the thought, "Oh shit, it's real, he could really die just like that and I'd never be able to save him," and before it could get any further down that path to hysteria, it simply stopped. I'm grateful to it for that.

     I worry about an aortic aneurysm letting go within my husband every damn day. I know the statistics, I know how much more susceptible to them he is than a non-Marfan's kid, I know they're asymptomatic and that if one should burst, he'll bleed out before I can complete a call to 911. I know all this and have known it since before we were married. It's just part of it, this damned disorder that has no right to infringe upon our lives but does, in ways I don't even have words for. And that's saying something, because words are kind of my thing. When I found out exactly why my great aunt had died, how could I not think of my husband? How could I not wonder, "Is that going to be how it'll end with him? Will I have to be there, to see him slip away from me?"

     Please, whatever you do, whatever you say to me, please don't let it be anything along the lines of, "You shouldn't be thinking about these things, you should be cherishing the time you have together." Yes, I'm aware, thank you. I'm not saying that I dwell on this stuff all day every day, but it is something that runs through my head far more often, I'd guess, than a wife with a healthy husband. I think it's normal to have these thoughts and though it's scary as hell, I want to deal with it head-on. I have to deal with it head-on because if I don't, if I just cage it up and let it rattle around up there, it will grow into something far worse. Perhaps being confronted this way is or will be a good thing. Worst fear comes knocking on my door, yes, but people go on living. My family goes on, life goes on, the world keeps spinning. I have to know that whatever happens, the world keeps spinning.

Sunday, October 30, 2011

Your Sickness Weighs a Ton

     It does weigh a ton and though I've said it eight thousand times before, I have to say it again. My husband's Marfan's Syndrome is currently pushing down on our household like never before. There are so many things going on right now, so many, and even though I feel like I have a pretty good grip on everything, I know that it could be loosened at any moment. Normally, that's not me; I'm not the half of the marital duo who's fatalistic and looking at everything through a warped, cloudy lens. Right now, though, I can't seem to do anything but. I can't see what it is that we're coming up on, I don't know how it's all going to play out and I've lately been living in a perpetual state of waiting for the other punch to land. Most of the time, I can take it, but right now I've got the worst feeling that even though I can probably hold my ground, my husband's not going to be able to.

     As always, it's not any one thing in particular that's caused my world to tilt on its axis, but rather a culmination of small things. My husband had to quit his second job waiting tables on the weekend because it was just too problematic. Thus far, it's been both a curse and a blessing and we'll just have to see which one wins out in the end. One the one hand, he now has two full days off every week to recover from working his regular job.

     It's too soon to tell yet if having a real weekend will pay off at his full time gig in terms of not having to call in as frequently, but that's the hope. Obviously, I'm not a doctor and neither is my husband and so we're not equipped to make the call of whether or not this move will be beneficial on that front. Thankfully, that means we'll get to play my favorite game of all time -Wait and See! It's this awesome game where no one's able to tell either of us anything about how a decision my husband has made regarding his health is going to turn out or even if it will be the tiniest bit beneficial, so we just get to WAIT AND SEE! What are we waiting for? Who the hell knows? It could be something great, it could be something that leaves us in a worse place than before, or it could be nothing at all. Doesn't that sound like the most fun you've ever had in your LIFE?!?!

     Sorry, I drink a lot of Mountain Dew and sometimes it gets the better of me. Anyway, the point I was trying to get across is that while we hope my husband not working as a server will result in him experiencing less days full of crippling pain, we don't know if it will or not because the second job may not have had that much effect on the state of his health anyway. The other side of this debate is the fact that his second job pulled in a not-insignificant part of our monthly income. I've readjusted our budget as best I can, but the fact remains - ouch. It's not like we were using that money to buy pretty things to hang on the walls, either. We've still got two months in the year to go and my husband and I have already spent almost two thousand dollars in healthcare costs for him.

     Two thousand, and we're lucky enough to both be employed full time and have insurance. It's good insurance, too, but there are co-pays for doctor's visits and co-pays for medicine and a large out-of-pocket chunk of change for things like eye surgery. It adds up really fast and doesn't even factor in what we've had to spend on my healthcare. Luckily, I'm not often sick and only require trips to the doctor for yearly check-ups and such, so that's something we've got going for us. Still, I worry what might happen if a sudden large expense comes up when we're so not financially ready to deal with it. The income from his second job eased that worry just a little and made him feel better about being sick. (That's a whole post in and of itself, trust me. Maybe even multiple posts.) I'm hopeful that ultimately, my mad budgeting skillz will get us through and the theoretical benefits to his health will manifest themselves and make the extra anxiety worth it.

     My goal in the meantime is to see how much of this heaviness I can get lifted off the house. I can see it affecting him more deeply than me and I'm sure that's because the disorder is his, not mine. As much as it affects my life, I will never be forced to look at it in the mirror the way my husband is. I attribute part of the weight to the fact that lately, it's seemed like the Marfan's is progressing faster, consuming more of his body than it has before, affecting it and breaking it in ways that my husband has never experienced. It's scary enough for me to watch; I'm horrified to think what it must be like to wear that every damn day and know that you'll never get away from it.

     Perhaps this is just a rough patch, as we've been through before and as we'll weather again. Maybe this patch is stronger, more vicious in its grip than has been previously experienced and that's why it's having the effect that it is. I don't know. Maybe my husband and I are both making too much of nothing we can put our collective finger on and need to stop letting it occupy space in our brains. That's what I usually tell myself when this feeling becomes so pervasive - "Hey! Stop moping around, get your head right and keep moving forward." I think I'm going to have to take that same stance now, because the truth is, there is just too much coming up down the road for me to give in at this point in the game.


Friday, October 21, 2011

The Denial Twist

     I find my thoughts often veering off into places that they never would were it not for the fact that my husband was born with Marfan's Syndrome. Being a somewhat rare disorder, it follows that living with it would cause somewhat oddball thoughts by both partners, my husband and myself. Most of the time, those places are interesting little sojourns of the "Huh. What if?" variety and they don't bother me. In fact, I'm usually pretty grateful for them, as they allow me to contemplate scenarios that I never otherwise would have. I like trying to figure out unique problems and coming up with answers that no one else has thought of. It's often the same for my husband, as he's just an odd person on the whole and so enjoys strange mind trips to where-the-hell-ever. Once in awhile, though, my husband surprises me with something out of the blue, something that I never in a million years would have considered.

     I don't even remember how the topic came up, to be honest with you. We were sitting downstairs in the rec room, each at our computer, just rambling back and forth about how our respective days had unfolded. I think it was a Saturday, meaning that my husband was home from waiting tables at his second job and therefore in considerable discomfort. That seems to be the most likely scenario, because the conversation turned into a discussion about his disorder and we typically leave the Marfan's out of it whenever we can, unless there's a direct segue. How we got to that point in the conversation doesn't matter, because what I remember is my husband turning to me and saying, "You know, every once in awhile I purposely make myself not hug or touch you, just to see if I can do it, because what if one day I won't be able to touch you?"

     I still don't know why he chose to disclose this tidbit to me; the only thing I can think of is that is was just too heavy for him and he needed me know know so that I could share the weight. At first, I thought he meant that he was afraid his condition would deteriorate so much that he wouldn't be able to make the physical movements to hug me. That seemed overly dire to me, because while he's likely going to end up in a wheelchair with limited mobility, I can't imagine him being so bad that he can't lift his arms to hug me or hold me. I could be wrong, because the truth of the matter is that we have no idea how this is going to progress and where he'll end up physically. I really don't think it'll get that far, though, despite the level of severity of his particular brand of Marfan's.

      When I mentioned that to him, that I didn't think he'd get quite that bad and hey, I could always just sit on his lap while we wheeled around wherever, he shook his head and said that's not what he'd meant. Apparently, every so often, my husband tries to trick himself into believing he's not sick, that the possibility of an aortic aneurysm letting go isn't lurking just behind the door. One of the ways he tries to accomplish this is by acting "normal", or what he sees as normal. To him, it's not normal to fear that each day could be your last, or at least your last good one, the last one when you can walk into the house after a long day at work and hold your wife in the kitchen for a bit. It's normal to not feel a desperation to convey to your wife just how much you love her, because you may not have all the time you'd want to get the message across.

      I was momentarily rendered speechless (no easy feat, let me tell you) by what my husband said to me. I had never once considered that he felt like that. I mean, let's be honest here - Marfan's Syndrome is a degenerative genetic disorder and while nasty, it's not exactly Stage IV cancer, you know? I suppose I just never thought that it would have quite that much of an affect on his thoughts of mortality. That was rather stupid on my part, because how could it not? Knowing that your cardiovascular system is jacked and has been since the day you were born can only become a monster of an issue in the back of your mind after thirty-eight years of it living there.

     My husband told me about all this weeks ago and I still don't know what to do with it. Do I tell him to carry on as he has been, since that's what he seems to need to be able to feel okay? Do I reassure him that it's okay to touch me and hug me as much as he wants and it doesn't mean he's not "normal"? Obviously, people who are perfectly healthy can be very aware of their own mortality and choose to live each day as if they may not be given another. I personally believe that's a very exclusive club, because few of us are that self-aware, but they're out there. I just don't know. For the time being, I'm going to let it lie, mostly because I have no idea what else to do with it. I hate when that happens.


     

   

Wednesday, October 19, 2011

Long Time Gone

     Has it really been almost a month since I posted anything? God, this first semester of being in school while working full time must really have taken more out of me than I suspected it would. So much for Supergirl, eh? That's not a dig at myself, though I know it sounds like one. I actually think I did quite well this first time out, considering I haven't so much as set foot on campus in four years and my sudden re-enrollment wasn't the result of some grand plan, but rather a wild hair I got one day. As glad as I was to be there, I will admit that time-management was a bit more stressful a concept than it was in my days of working part-time. The fact that I knew there was no way my husband and I were going to make it through a full eight weeks without some kind of Marfan's incident was also adding to the weight.

      I'm someone who really, REALLY likes to be right, but I could've accepted defeat with my prediction of not getting through the semester without at least one trip to the emergency room. For whatever it's worth, my husband got very close to the end of the eight weeks without incident, but during the last week of September, his back muscles did their evil little routine of twisting and knotting so that he can't move and I had to drop him off at the ER on my way to work. This is normally not problematic, as I just pick him up when he's done and take him home. This time, though, I was faced with a rather unpleasant choice - should I leave my freshly de-hospitalized husband alone all night while I sat in class or should I tell my professor what was going on and hope for mercy?

     I should take a moment to explain the way my classes are set up, because it's a little different than the traditional sixteen-week format. My classes are once a week for eight weeks, four hours a night. That means I often don't get home until close to ten o'clock in the evening and that's a long damn time to be away from someone who couldn't move only twelve hours before. On the other hand, because my classes are on such an abbreviated timetable, I can't afford to miss even one class because of the potential detriment to my grade. It's really important, on a lot of levels, that I finish up what I started with my undergrad degree, so both my husband and I felt trapped yet again between a rock and a hard place by this new problem.

     I doubt very seriously my husband ever thought about how his Marfan's Syndrome could potentially affect my schooling, because his brain just doesn't work that way. Part of it is that he's more of a focus-on-the-trees-not-the-forest kind of person, while I sometimes can't see the trees for the forest. Part of it, though, is the fact that he's still got a stubborn bit of denial hanging on regarding the fact that he's sick. It's something he liked to pretend wasn't there for the vast majority (and by "vast majority", I mean before I came on the scene) of his life and it's not an easy transition to make, from refusing to acknowledge your genetic disorder to actively confronting and managing it. I sometimes don't know how he's been able to make as much progress as he has.

     In any case, I figured the best thing to do in this case was to e-mail my professor and explain that my husband was disabled and had been in the hospital that day and so it was possible that I may not make it to class that night. I figured it was important to be completely honest with her and let her know that my husband is disabled, as there are certain rights and protections for disabled persons which also, in some cases, extend to the protection of the spouse as well. (Know your rights, can't stress this enough.) I'm not one hundred percent sure how that would've worked in this case, but as it turned out, I didn't have to find out.

     I got him home and situated, which basically just means that I got him tucked into bed with a large amount of muscle relaxers and painkillers, with his cane nearby should he need to use it. He had his cell phone and I had mine, so I went ahead to class, though not before I called my parents and sister and let them know what had happened. I just feel better when there are more people than just me watching their cell phone for a call from him, just in case I miss it. He knew as well as I did how important it was that I not miss class and more, he was well aware of the larger implications should this incident lead to a less-than-successful semester.

     It all falls to what we said a long time ago, before we decided to get married, and that was that we were not going to let his Marfan's take over our lives. I have to say, holding to that is becoming harder with each passing month since it's a degenerative disorder. We and the doctors manage it as best we can, but remember in my last post when I told about the ER doctor who said to my husband, "I don't know what else to do," in reference to his pain? We're hitting that wall more and more frequently, it seems. How do you not let something like that permeate everything, dictate every move? I feel we're doing a good-enough job of it at best and that's not quite enough for either my husband or I. I'm afraid, though, that we may have to learn to accept it as enough, because that's the best we're going to get.


Monday, September 26, 2011

When the Levee Breaks

     God, I'm tired. Physically and mentally and emotionally, just worn the hell out. I know how very overdramatic that sounds and believe me, I don't like writing it any more than you like reading it, but it's the truth. I'm entitled to my cliches every now and again, aren't I? I didn't realize until today how much I've been damming up in my head, thinking I can handle it, thinking it's never going to be too much. Except for, it is too much. Today was the first time I really thought to myself, "I can't do this alone," and meant it. For the entirety of my relationship with my husband, I've been confident that I can do it with just the two of us. Of course, in my head also lives the colorful cast of wacky friends and family who pitch in to help whenever I need them. It's like my own sad-ass little sitcom in there.

     My husband's Marfan's Syndrome got the better of him again this morning. And when I say morning, I mean morning, like 3am territory, which is when I first rolled over in bed and noticed he wasn't there. At this point in the game, I know what that means - my husband's in too much pain to sleep and he's gone downstairs to the rec room to play on the computer so his tossing and turning won't wake me up. Sometimes when I notice this, I'll roll over and go back to sleep. Sometimes I'll get up, grab a blanket and go sit downstairs in the La-Z-Boy to keep him company. I chose the former in this instance and when next I woke up, he was in bed beside me. Now, someone less well-versed in the ways of the Marf might have mistaken his slumbering and snoring as a sign that the crisis had passed and all was well. Me, I knew better.

     Sure enough, the alarm went off and I could hear him gasping in pain as he tried to get out of bed. I suggested he go take a really hot shower, because there was nothing else I could say and I held out the pathetic hope that the hot water might do his back some good by loosening the muscle cramps and spasms. It didn't, of course, and though my husband made a valiant attempt to get dressed and ready for work, he soon realized it was a lost cause. I don't even know how to describe it, because I've never experienced what he feels, but I imagine that it's akin to your whole body twisting itself into fifty knots simultaneously. So what did I do? Knelt down and put his shoes on him while he e-mailed his/our boss to say that he would be going to the emergency room instead of coming into work.

     I know he hated doing that, because every time he has to call in, he feels like he's disappointing me. While I don't think "disappointed" is the right word for what I feel, I can't pretend I don't feel something like it sometimes. Not every time, mind you, but enough that I'm ashamed of myself. I know, I know, I have no right to wish that he could just push through and work it out anyway. I just have that kind of mindset, that you don't call into work unless you're bleeding from your eyeballs and even then, you should only be gone as long as it takes to get the problem dealt with. I know it's not right, especially in the face of what my husband deals with on a daily basis with his health, but it's there nonetheless. It's one more thing to add to my list of things about myself that I need to work on improving.

     While that thought was rattling around in my head, I was also focused on getting my husband to the ER as quickly as possible so he could get some relief and I could get to work. (Yes, I was focused on work. It's that whole idea that I have to be super-employee to compensate for my husband's disorder.) As the song goes, I dropped him off, trundled off to work and waited for the text that said I could go pick him up. I started in on my morning tasks, believing I was fine, but then I started to feel that I wasn't. The nasty dance of one step forward, two steps back started to weigh heavy on me. Normally, I'm really, really good at taking things in little pieces as they come, but it all started to push at the boundaries of my poor brain this morning.

     I kept it together at work, because that's what I do. I do not deviate from that path, ever, because to do otherwise would feel entirely foreign and just wrong. Then, though, my husband called me from the hospital to say that the ER doctors were considering admitting him because the Dilaudid wasn't working and they "didn't know what else to do." Yeah, that phrase actually came out of the doctor's mouth, not that I blame them for it. Let's be honest here - the ER is mostly staffed by younger doctors putting in the requisite hours for their first internship who aren't specialists. It's not their fault they don't know what the hell my husband is or how to treat him. And truthfully, I don't believe they could've done anything differently in any case.

      That tidbit of information, that the doctor had admitted to not knowing what else to do to help my husband, is probably what pushed me over the edge today. It's one thing for me to say it, to think it, to share that thought with my husband, but it's an entirely different story to know that the medical professionals are out of ideas. What do you do then? Who do you turn to for help? It was at that moment that I realized no matter how many wonderful family members and friends I/we have, I'm ultimately the only one in my position and my husband and I are ultimately the pair that are going to have to do this. I've experienced the sensation of helplessness before, but never as completely as I did at that moment.

     It was one of those come-to-Jesus moments, I guess, when you realize you're the only one in a room full of people. (How many cliches can I fit into one blog post, right? We'll soon find out...) I have NEVER felt that way before and I do NOT like it, that much I know. I just felt so weak right then, like everything that I keep so nicely ordered and corralled in my brain had broken lose and was pounding against the walls. I was desperately afraid that the weak spot in my defenses was going to be found and then it would be all-out war to get everything back where it belonged. I'm not prepared for that and neither is my husband. Right now, he needs me and I just don't have time for this nonsense. See? Look how well I can talk myself into being alright. Maybe. Sorta. Kinda?

















Tuesday, September 20, 2011

Harder to Breathe

     I'm back in school now, finishing up both my Bachelor's degree and my paralegal certification, so the time that I have to write is much less than once it was. That bothers me, a lot, because this blog is really important to me. At the most immediate level, it really helps keep me sane and relieves some of the pressure that builds up on a daily basis. When that pressure gets too high, bad things happen, I assure you. So it's beneficial to all involved that I find a way to squeeze this particular pressure-release valve into my schedule, which I'm going to make a concerted effort to do more frequently. Besides all that, I want to keep putting out there the adventures of being married to a man with Marfan's Syndrome, just in case someone needs to read that they're not alone. It's probably narcissistic on some level, but I like to believe that there is a small audience out there who is comforted by being able to see the proof that they're not alone. And so, without further ado, I relate to you the latest in the ongoing saga of my life as one half of Team Marfan's-Can Suck-It.

     Today was my day off work, but my husband works a typical Monday through Friday schedule, so while I had every intention of sleeping in, I was awoken far too early by my husband's rustlings as he got ready for work. Luckily, I can usually fall back asleep pretty easily, so once he was out of the bedroom and in the shower, I was out again. Next thing I know, he's sitting on the edge of the bed telling me he can't breathe and I can hear him making these little gasping noises. What the hell? I was still half asleep at this point and not quite fully aware of what he was telling me. In my sleep-dazed state, I thought he'd overexerted himself and just needed to calm down so his breathing would go back to normal. (I don't know why I was thinking along those lines in the first place; it's not like the man could've jumped out of bed that morning and run a marathon or something. Half-asleep, okay?)

     The gasping reminded me of how my little sister sounds when she's having an asthma attack, so once I'd come awake a little more fully, I applied the knowledge of what I do in that situation to the one that was at hand. I kept telling my husband that he needed to just calm down and try to take slow, even breaths. He kept saying to me, "I can't breathe, I can't breathe," which, I'll be honest, didn't so much scare me as irritate me. Remember that I've previously discussed the irritation vs. panic phenomenon and I'm learning to come to terms with it. That's not to say I'm okay with it when it happens, but I'm getting better at recognizing it and squashing the irritation when it pops up.

     Well, I was irritated again when I realized what was happening, because I knew enough to know it wasn't life-threatening. I get the same way with my sister Lizzy when she won't calm down during an asthma attack, even though I know it's much easier said than done. As the one who's having a hard time getting enough air into their lungs, I would think that having someone telling you, "Just stop flailing around and take slow, even breaths," is probably not what you really want at that moment. I doubt very seriously that was the reaction my husband was looking for, but that's what he got, because that's the best I could do. Even now, I think remaining calm and practical was/is the proper thing for me to do in just about any situation involving my husband's health.

     In any case, my first thought when he told me he couldn't breathe was pneumothorax , or a collapsed lung. He's had them twice before; once during surgery and once the day after a particularly enjoyable concert. It's just one more prize that my husband pulled out of the Marfan's goody bag, as people with the disorder are especially prone to recurring bouts of pneumothorax. When I suggested that, though, I was reassured that this was not the case. It's apparently a rather painful thing to endure and since it's happened to him before, he's familiar with the sensation. (He's even got a scar on his ribcage from the tube that the doctors had to shove into his chest to get the collapsed lung up and running again.) No, this time it was simply that the pain in his back and chest was so bad that he couldn't inhale enough to draw a breath.

     I've been with my husband for just over two years now and this is the first time I can remember seeing him gasping for air because he couldn't overcome the pain in his muscles to force the air in. His left arm was useless, too, so bad was the cramping. Once I realized what was going on, I suggested that he take a couple of Flexoril and lay down to let the muscle relaxer do its thing. After sending an e-mail to work letting them know he couldn't come in, he did just as I suggested. It took a bit for the drugs to kick in, but eventually his breathing wasn't so panicked and became deeper, easier. As a result, so did mine.

     Like I've said plenty of times before, when you're married to someone with a chronic degenerative disorder, you learn pretty quickly that you simply cannot go to pieces over every little thing. I've never been prone to doing that anyway, but that tendency was sharpened significantly when I began dating my husband. Truthfully, once we'd ruled out the collapsed lung theory, I did have a fleeting thought that this could be a heart attack, but my husband assured me that it was not; it was a vicious cramping of his back muscles instead. Some might say that I should've insisted that he go to the hospital anyway, but I say that I have to trust my husband to know his body. I can read about Marfan's Syndrome until I go blind - it won't allow me to experience what he does and so I will never be able to know what's going on in his body like he does.

     This morning was day two of the shortness of breath episodes, though today was obviously much worse, as he wasn't able to do anything but lie in bed for quite awhile and hope that the muscles would let go of themselves long enough to allow him to get his breath back. His chiropractor has been on vacation for the past two weeks, so there's been no treatment on that front for awhile. I don't know if that has anything to do with it or not, but it could. He'll go back on Friday, so I'll remind him then to talk to the chiropractor about the episodes and see what he thinks. Until then, I guess it's just going to be concentrating on one breath in, one breath out. Not so different from our normal order of business, when you think about it.



Wednesday, September 7, 2011

High/Low

      As much as I have the ability to get maudlin and defeatist about my current situation, which is that of a wife to a man born with Marfan's Syndrome, I'd like to believe I don't allow it to get that way very often. Of course, that could also be my own wishful thinking, that I'm stronger than most and can successfully shoulder the extra burden with nary a hitch in my stride. The truth is generally somewhere in the middle, which means that while I'm probably stronger than most I know, I'm not quite as unflappable as I'd like to believe. I'm getting better at accepting that fact and also embracing the small successes we've been experiencing of late. I want to use the encouraging information to leverage my brain into a happier place where perhaps it won't be quite as susceptible to uncertainty about what the future holds for us.

     We're making progress towards a steadier future, what with me back in school and the pair of us finally starting to have some success with paying off debts (very slowly, but very surely), so that helps my state of mind. I like it when I can see progress being made, like one less bill to pay every month because that debt's been satisfied or the savings account growing in small but steady increments. That makes me believe that it's not always going to be as difficult for us as it is now. I can look at our situation and say, "Yeah, well, we just got another thousand-dollar hospital bill for his latest surgical adventure, but at least we don't have to pay on my student loans right now." So that's something.

     Truly, most days this line of thinking has the desired effect. I can take it step by step instead of pushing my brain to figure out the whole picture all at once, which accomplishes nothing except making me stressed out and bitchy. It's one of those things that I don't believe is completely unique to my situation, but rather something that everyone faces to some degree. The difference is that my husband and I have a few more issues muddying the waters than most couples and it makes it really fricking hard to see where I should go next.

     I have to admit to feeling somewhat not in control of my emotions at times, since the heaviness of what's in my head sometimes gets away from me. I don't like feeling that way, especially when it lashes out to snap at whoever's near me (usually my husband.) I know everyone has their moments and God knows I'm not the first person to ever feel as if their moods are running away with their sanity, but it gets really tiring really fast. What I want to know is if anyone else in my position ever gets this way, when the low hits really damn hard and fast and with minimal warning. Come on, kids, I can't be the only one - nobody's that special a snowflake.

     Before anyone throws it out there, let me be clear that I don't believe that it's a chemical imbalance or anything of that nature that's causing the mood swings. (And no, I'm not pregnant.) While I believe that to be a very real problem for some (the chemical imbalance, not the pregnancy) and I certainly empathize, that's not what's going on here. Mine is simply me letting my thoughts run away from me and not being able to corral them in a timely fashion. By the time everything's tucked back into it's proper box, I've already experienced an unpleasant little interlude.

     What's the best way to focus on the good and keep the rest of it at bay? I mean, that bad stuff? It's by and large hypothetical anyway! That's right, folks - I'm going off on head trips about things that HAVEN'T EVEN HAPPENED. But what if he loses his job and therefore his insurance and then we have to move in with my parents and I'll never be able to finish school and he could poke another holeinhiseyeandwhatifhedamagestherodsinhisbackandwhatifwhatifwhatifWHATIF???? Yep, that's about the size of it.

     So that leveraging I was talking about earlier? While it's not entirely wishful thinking, because I really do think I'm getting better at it, I also know I've got a bit more work to do on that front. I have to reiterate that I don't think this problem is something that's unique to me or even to someone living in the same household with a disorder like Marfan's Syndrome. I'm sure we all get stuck in this place every so often. That's why I'm asking for help with ideas about better ways to handle the bad thoughts. Someone out there surely knows a more productive way of allowing the troublesome thoughts to exist, but not letting them run freely through my brain pan wreaking havoc as they go. So....gimme your best thoughts on the matter.






Wednesday, August 24, 2011

The Resistance

     My husband has been seeing that chiropractor for a couple of months now and it seems to be having some positive effects on him. That's always a good thing because it's such a hit-and-miss methodology when it comes to managing his disorder. I'm pleased, too, that this new treatment seems to be helping not only the physical manifestations of the Marfan's, but also the effects it has on his head and his spirit. It doesn't often happen that we find something that's successful in treating his physical ailments, so to have found something that apparently works on both his body and soul, that's pretty exciting for me.

      Obviously, I don't know exactly what's going on in his head regarding his health, nor do I know what's gone on in there through the years. We talk about it quite a bit of course, but I'll never know everything. That's as it should be, I think, because no matter how much you love someone and want to share with them, you have to keep some things for yourself. I know he thinks some bad things about himself because he's not well and the fact that they're completely unwarranted makes no difference. My husband is a stubborn and sometimes irrational creature and if he wants to believe that he's never going to be as good as the guy next to him because of his disorder, then that's what he'll believe.

     Since he's started with this chiropractor, though, I've begun to see a subtle change, one I'm not even sure he's aware of. It's like he's fighting back against the physical pain, the head trips he gets sent on, all of it. Granted, I've only been with him for about two years and only knew him for about a year prior to that, so I'm probably not the best one to judge whether or not this phenomenon is new to him. However, based on my limited knowledge of his younger years and my understanding of who he is as a person, I feel pretty confident in saying this attitude adjustment is a first-time deal.

     How did I come to that conclusion, you ask? Well, from what I've been told by my husband of the time before I knew him and the stories of their shared adventures I've been told by Adam, I know that his health wasn't really at the forefront of his mind. To be fair, my husband didn't have his heart surgery until he was twenty-eight, so the blood thinners and beta blockers were a nonexistent issue for the majority of his twenties. The spinal fusion happened when he was twenty-two, though, and he knew without a doubt that he had Marfan's Syndrome. Most people would take both of these things into account and adjust their lifestyle accordingly, but not my husband.

     The easiest way to sum up how my husband behaved during that time period is to say that he rather ignored his disorder until he was presented with something that needed to be tended to immediately if not sooner, like his heart and its faulty aortic valve. He went on like that for quite some time, right up until the time we got together, in fact. I don't want to make it seem like I was the one who changed his way of thinking, but I tend to handle issues head-on instead of pretending they're not happening until I can't ignore them any longer. In a way, my husband had no choice but to become more proactive about his health if he wanted to peacefully coexist with me.

     That change in thinking is all well and good, a positive step for him, but this attitude I've been seeing since he started with the chiropractor is something a bit beyond that. It's like he's got more hope now that maybe things don't have to be the way they always were. For example, I've noticed him calling into work less lately and it's not because he's not in pain, but rather because the chiropractor has told him that he needs to try and move as normally as possible when his muscles knot up. After the first few days, which no doubt sucked, it seemed to get better. It was almost like my husband didn't believe he could push through the muscle pain before now, but once the doctor told him to give it a try, he was startled to realize that he could.

     

    

   

Monday, August 22, 2011

Time in a Bottle

     The other night, when my husband was lying on the living room floor after falling down the basement steps, he said to me, "I wish I could bottle up that time we had together before I started getting this bad." I didn't say anything in response, because I was afraid that if I tried, the truth would come out of my mouth and that's exactly what he didn't need just then. What my husband needed in that moment was reassurance from me that we would get through this latest tough spot, that the painkillers would kick in soon, that he would be able to sleep through the night and make it to work the next day. What all that surface nonsense means is that what he really needed to be reassured of was that our best days weren't behind us. I have to admit, I couldn't promise him that at the time, any more than I can promise it now.

     So I did something that I didn't necessarily like, but had to do - I lied. That sounds awful, to lie to your ailing husband as he suffers through another painful evening, but before you start casting those stones at me, let me tell you that i look at it as a necessary evil. I can't be the only person in the world who's done it, said something they didn't truly mean or believe, but gave voice to it anyway because they knew it's what the other person needed to hear at the time. Besides that, my husband knew it wasn't the truth even as I was saying the words. It was what he needed to hear and believe, though, so that's what he chose to do. Some might look at that as burying our heads in the sand, but I would argue that it's just a way of taking a tiny mental vacation in order to retain some sanity.

     The thing about it is, I really believe sometimes that the best of our days are behind us and I know he does, too. We haven't even been married a year yet, but his disorder has seemingly kicked itself up a few notches in that short time span. I feel like we have ever-increasing emergency room visits, some of them secret, some of them not. It's beginning to seem like the nights he's not in pain when he goes to sleep are far fewer than the ones when he is in pain, though my perception of that ratio could be skewed because the nights he's in pain are so much more difficult to get through. He's much more tired than he used to be, just on a day-to-day basis, and the second job is rapidly becoming something that's just not feasible.

     All this is what we contend with every damn day and neither he nor I can deny the knowledge that it's only going to get worse. Marfan's Syndrome is a degenerative disorder, people; it's not something you come back from. I try to be grateful that we're in St. Louis and luckily, have access to the very best the country has to offer in medical care for a Marfan's patient. That gratitude only holds out so long, though, before I start thinking about how there are so many aspects of this damn disorder that no one can do a thing about. Sure, my husband has had his defective aortic valve replaced with one made from titanium, thus dramatically reducing the risk of death from aortic dissection, but what about the rest of his body?

     Marfan's Syndrome is a connective tissue disorder and it's sure as hell not picky about what it affects. My husband's case is closer to the more severe end of the spectrum, which makes his treatment all the more difficult, I'm sure. How do you a treat a full-body breakdown? I mean, that's essentially what's happening here. His spine already has three titanium rods and all the screws to hold them in place, he's got the aforementioned valve and the piece of garden hose that came along with his aortic root replacement, and he's also got a plastic lens in his eyeball because his own was useless. The surgeons can keep replacing pieces until the cows come home, but they can't replace the whole.

     What if my husband was never intended to make it this long? I know, it's a really morbid and rather disturbing thought, but it's a theory that he and I have been kicking around lately. Prior to aortic root replacement surgery becoming the new hotness for Marfan's patients, the average age of survival was thirty-two. My husband just turned thirty-eight, so you have to wonder what that's all about. Some will point out that with advances in medicine, the average lifespan for a Marfan's kid is now the much more reasonable age of seventy-one. That's also true and it's something I'm grateful for every blessed day. Keep in mind though, that there are also many more cases of Marfan's Syndrome being diagnosed than ever there were before and consequently, many more mild cases popping up to push that survival age ever-higher.

     Unfortunately, my husband does not fall into the "mild case" category. He gets to experience just about every aspect of Marfan's available and it's so much less than fun for both of us. Actually, I'd venture to say that it's just as hard on me as it is him, even though he's the one who has to deal with the physical repercussions. I'm sure that doesn't make any sense, but try for a moment to imagine how you felt the last time someone said something insulting to your beloved. Odds are, you took it harder than they did, right? You were indignant on their behalf and, if you're anything like me, harbored fantasies of putting the detractor squarely in their place, hopefully in front of a large audience.

     I think I worry about my husband's quality of life far more than he does. I don't know if it's because I'm healthy and he's not, so the contrast is that much sharper or if it's because he was born with this, so he's never known anything else. Or maybe it's just that I love him so much that seeing him in any amount of pain at all is terrible to watch. I just don't know. I do know that while I'm afraid once in awhile that the good times are over, I believe that's just fear and negativity getting the better of me. It happens; I can't be upbeat about this all the time, though God knows I try my best.

     Instead of wishing to bottle up past times so that we can put them away and dwell on them, my husband and I need to learn to adapt. It's going to be a hell of a thing for both of us, as I do not handle change well and my husband is a champion in avoidance when he wants to be, but it's the only solution that I can see. And even that's not the right turn of phrase, because it's really more of a change in perspective than a solution to a problem. There is no solution to my husband's medical issues, but there are better ways to handle it, better ways to manage our lives so that it's only one small part of the whole, not the hulking monster around which everything else must be adjusted.

Saturday, August 20, 2011

Zap

     The truth of the matter is that you really do start thinking and wondering about the strangest things when you're married to someone who's chronically ill with an off-the-beaten-path disorder. Before I met and married my husband, who was born with a degenerative genetic disorder called Marfan's Syndrome, I never really thought about how too many leafy green things in one's diet could be detrimental, rather than beneficial, to one's health. I never considered how you would find shoes to fit a person with size 16 feet and 36x36 pants. I never wondered how someone who is six-foot-five would fit in a regular-sized bed. (The answer to that one is that he does, but his feet hang off the bottom if he doesn't curl up a bit.)  Just recently, I found a new oddity to wonder about - what happens when you use an automated external defibrillator, or AED for short,  on someone with a titanium heart valve?

     I know, I probably shouldn't even entertain the possibility of my husband having a for-real heart attack when we've got plenty of other problems to keep us occupied without throwing hypothetical cardiac arrest into the mix. I've actually only very rarely considered what would happen if my husband did have a heart attack one day because I'm always so concerned with the ever-present threat of an aortic aneurysm and its eventual rupturing. Considering that that particular scenario would most likely be fatal (only a 10-25% survival rate if the victim gets immediate treatment), I've not put much effort into finding other ways to keep myself up at night worrying about my husband.

     We recently took a class, though, on how to use an AED and that's what started the wheels turning in my head. I think I'm like most people in that I always thought of those electric paddles that the doctors use on TV whenever someone's heart stops. You know, when they yell, "CLEAR!" and shock the life back into some poor soul whose body has just been jolted a foot off the floor from the electricity that was sent zinging through them. Apparently, it's not that way.

     There are no paddles; there are instead little sticky pads that you peel and stick like a band-aid. One goes on the chest, the other goes around on the side of the torso. Plug the wires into the main box part of the apparatus and wait for the little voice to tell you it's okay to push the button that delivers the juice. I was told in this seminar that the whole ritual is pretty much idiot-proof, as it's impossible to shock someone on whom a heartbeat, however faint, is detected.

     That's good to know, 'cause I certainly wouldn't want to be responsible for accidentally stopping someone's heart when I was trying to accomplish the opposite. (By the boo, just because I sat through a thirty minute session on how to use an AED in an emergency doesn't mean you should take what I just wrote as gospel truth. I'm not anything close to qualified to instruct anyone on how to use those things, so please don't go skipping off thinking you know what you're doing just because you read this blog post. Don't be dumb.)

     That's all well and good, right? Now I know how to save someone's life if they're in cardiac arrest. Yay me! We were halfway through the session when the instructor pointed out that should we ever find ourselves needing to use an AED on someone, we should quickly scan their chest to be sure there isn't a scar and a raised shape under the skin that would indicate the person had a pacemaker. If that happens, just don't put the pad that delivers the shock over top of the pacemaker, 'cause that's one type of electrical stimulant conflicting with another type and that's bad (or something like that.)

     I remember only the most basic principles of conductivity from my high school science classes, but if it's a bad idea to mess with a pacemaker, it's probably a bad idea to send an electrical current through someone's heart if they've got a piece of metal embedded in it, right? That's what I started wondering as this seminar was progressing.  It goes hand-in-hand with my previous wondering of whether or not his heart could physically withstand a shock like that, since the tissue it's comprised of isn't really as strong as a normal persons. I mean, what if the electricity was too much for a weak spot to handle and my husband started bleeding out?

     Granted, I've only mulled that possibility over in my head once or twice in the whole time we've been together, but it could happen, couldn't it? I know it's a fairly small amount of juice that gets delivered when someone utilizes an AED - it's usually between 150-200 joules, but can be as much as 360 joules, depending on the particular AED that's being used. (No, I have no idea how that relates to wattage or volts. I googled it and found some insanely complicated formula for figuring it out, but I typically don't go much beyond 2+2=4. Words are my friends, numbers are the devil.) So you've gotta figure, if part of his heart needed to be reinforced with titanium and Dacron just so it wouldn't self-destruct during normal operating procedures, surely it's not a good thing to push it harder, even if to (theoretically) attempt to re-start the damn thing.

     It's a bad choice all the way around - either die of a heart attack because you can't withstand the procedure needed to bring you out of full cardiac arrest, or bleed out because the method used caused you to spring a leak somewhere. (I was initially worried that the valve's conductivity would cause the heart issue surrounding it to be fried like bacon, but I think the Dacron seal would prevent that. So my husband's got that going for him.) Now, in all likelihood and with a little bit of luck, this is a scenario which will never come to pass. Heart disease doesn't run in my husband's family (his Marfan's notwithstanding), so I think we'll catch a bit of a break on this one. Now, if I could just train my head to not go off on these little sojourns that serve no purpose but to make me twitchy and stress, we'd be in pretty good shape. Relatively speaking, of course...