Sunday, January 29, 2012

Celebration Day

     This week marks a small milestone for my husband in the grand scheme of living with Marfan's Syndrome - he made it through a full week at work for the first time since before Christmas. This is big for both of us because neither of us likes it when he has to call off at work, though for entirely different reasons. It's not so much that it's an administrative problem, like he'll get in trouble for missing too much or anything, it's more that it's an overly-curious people problem. At this point in the game, pretty much everyone at work knows that he's disabled and when he does miss a day, it's assumed that the reason is because of some sort of something to do with his Marfan's. Truth be told, that assumption is pretty dead-on the mark.

     Since the Monday before Christmas when he fell in the bedroom until last week when he got out of the hospital for the second time in three weeks, something has gone wrong at least once a week, if not more. We've experienced his disorder manifesting itself in all sorts of new and exciting ways in the past month and it's been a hell of a trip, let me tell you. There have been multiple hospitalizations, nights spent alone, phone calls to family members on the other side of the country and incredible amounts of pressure building on several different fronts. My husband and I were both hoping for a better start to the new year than what we got, but hey, such is life. In light of all this, I've had to start looking to the tiny things for goodness, for proof that we're finally coming down the other side.

     That's why this past week at work was such an accomplishment on my husband's part. With a full month of medical issues in his recent past, it took a lot to be able to go about his daily routine for a full five days. I believe this will get easier as time goes on and he begins to fall back into his normal routine, but the first is almost always the hardest. It wasn't without its bumps and Wednesday was a true bitch, I promise, but we got through it together. Neither one of us was quite sure of what we were doing, completely playing it by ear. It worked, though, and now he's got just thismuch more confidence for the coming week.

     On a purely selfish level, I'm glad he's back to business as usual because I absolutely loathe having to tell people where he is and what's going on. I know how contradictory that sounds, coming from the girl who puts her and her husband's business on the internet for all the world to see, but I don't like having to explain, for the 938th time, what happened this time to make him immobile. Since this last go-round was something completely new for us and not a little sensitive in nature, I really didn't want to talk about it. I had to fall back on, "It's just a manifestation of his Marfan's and we're working on getting him well again," so many times. I wasn't about to discuss his hospitalization with anyone because the plain truth was that I just didn't know how.

     It's an issue that neither my husband nor I are really ready to talk about with anyone outside of a select few family members. I myself am still processing and that can take a stupefyingly long time to work out in my head. There's a lot going on in there on any given day, so to have to make room for more takes me awhile. I will get there, as will my husband, though the methodology is still a bit fuzzy. That's okay, given that it's our first time out of the gate with this and we're totally stumbling along in the dark, looking for the right path. I have no doubt we'll find it; I just can't attest to when.

      It feels okay, though, to stumble along with him. We both feel like we're going to get somewhere, get to the proverbial light at the end of the tunnel. This past week was important, as it gives my husband something solid that he can look back on and use to bolster himself when he feels his confidence beginning to waver. It's such a small thing to most people and I'm sure there are going to be those who read this and think, "What in the hell is she going on about? So he made it through a full week at work. Big damn deal." I get that sentiment, I really do. I would most likely be thinking the same thing, were I not in the situation myself and able to see just how much it means. So I would ask that if you do have that thought somewhere in your head after reading this, you suspend your disbelief for just a little bit and believe that this otherwise insignificant event really is cause for celebration.

Saturday, January 21, 2012

Sweet Year Old

     It's been a year exactly since I started this blog and thus started something that's been mostly a good thing, for me and quite a few others. When I started writing this, it was with the idea that I could possibly help a few random people to feel like someone else knew what they were experiencing in their lives as the partners of people with Marfan's Syndrome, a degenerative genetic disorder. I've never met anyone in my position or anyone in a position that's similar to mine, so I have to acknowledge that this was for me just as much as anyone else. I don't like feeling alone in this and, as I'm a rather talkative creature, I don't like not having anyone around to be able to talk things out with when he/I/we hit the wall. I was hoping to remedy both those situations, to some degree, when I first sat down in front of my computer.

     I think I've been met with a fair amount of success in twelve months' time. I've been contacted by family members who have opened up to me about my husband's disorder in ways that I don't know would have happened had I not started this blog. I've been e-mailed by people from around the world who have told me that they're in the same position and to not feel alone because even though they're halfway around the globe, they'd be willing to chat with me anytime. I've been messaged by others born with Marfan's who have told me that they, too, are in a serious relationship and worry about many of the things my husband troubles his mind with on a daily basis. They've told me that I've given them hope, entertained them, and made them happy to have found my "honest, funny writing".

     That's a pretty big damn deal to me, that I've made a difference, however small, to those relatively few people whom I will likely never meet face to face. I don't care that I will never meet them, never know what they look like or how they sound when they talk - I care only that something I did made a difference. It's a very small difference in the grand scheme of things, I know, but dammit, at least I'm doing something besides sitting in the corner bemoaning my fate. There have been more days than I care to count when I wanted nothing more than to curl up in bed and pretend that he's healthy, that none of the hospital visits ever happened. I didn't, though, because what the hell would that accomplish?

     Rather than pitying myself and my husband for something no one can change, I decided it would be a far better use of my time and resources to try and make something that could be helpful to others in my situation. It makes me feel better, too, to document what's going on and how things have changed. I can't keep it all to myself and I knew I couldn't be the only one, so this is the solution I hit upon. It's also helpful for both of us to have a sort of timeline and be able to use this blog to get a better handle on his disorder. Sometimes, when we read over old entries about this emergency room visit or that trip to the doctor, it helps us put it in perspective. Reading about it gives us a chance to remove ourselves from the equation for a brief period of time and look at things analytically. It's a good thing, I think.

     I will say that I haven't yet gained any great insight into living with Marfan's Syndrome and neither has he. It's just as hard as it's ever been and the last month and a half have been as close to hell on earth as I ever want to get. I may be able to write about it soon, but I may not. I have to figure out if my husband and I can handle committing the events to words and thus making them more real. That being said, we've also learned to communicate with each other about his medical issues better than we ever have because this gives me a forum to get it all down in a (mostly) cohesive form. Sometimes, when I'm too worked up to be able to articulate to my husband what's going on in my head, I can go to my computer and get it out that way. Then he reads what I wrote and we go from there. It's been a really good tool for us so far.

     My world hasn't changed because of this blog and I doubt very seriously it ever will. It helps me manage it, though, and it helps my husband be more at ease with the day-to-day of his disorder. There are still some people in my circle of friends and family who aren't supportive of what I've trying to do here and in fact are downright derogatory about it. It stings to know that, let me tell you, but at the end of the day, you can't please everybody, nor do I aim to. I've gotten far more support for this than I haven't and I'll take that blessing for what it is and run with it. I want to keep going, keep working to get my thoughts pushed out there into the wild so that someone who may not know how to can find them and recognize what they wanted to say but couldn't. So as long as I've got the ability to do so, that's exactly what will happen.

Friday, January 13, 2012


     If I were a fatalistic person, I would be kicking myself right now for posting that last. As so often happens, no sooner did I finish crowing about how swimmingly things seemed to be going than we experienced a minor setback. I think I failed to mention this, but my husband hasn't been able to work a full week since before Christmas. The manifestations of his Marfan's Syndrome have been kicking his ass lately and with frustrating regularity. It started with that bad fall he took the Monday before Christmas and just hasn't let up since. He was actually hospitalized a couple of days before New Year's because he had an incident that the doctors at first thought was a mini-stroke (yeah, I know, I'll get into that later), which was the worst of it. The most recent two happenings have been relatively tame by comparison.

     I was really, really hoping that this would be the week he could finally pull a full five days, since it feels like forever since he's had one of those. As a practical matter, I know he's not going to get fired or anything like that - that's not what had me so anxious to see my husband at work Monday through Friday. It was more just the idea that with so many sick days in such close succession, I knew people were going to notice, people who may not know that he's disabled. It's always a bit of a head trip and a hard time for him when he's "found out" by a new person, so we try to keep it as quiet as possible around the workplace. Four sick days in as many weeks doesn't really do much to help one remain inconspicuous, as it turns out.

     My wake-up this morning was my husband bursting through the bedroom door, panting heavily and saying, "Wife, I can't breathe, I can't breathe!" There is no leftover drowsiness when I'm woken in such a manner; I'm up and alert immediately and my brain's already running down the list of things that could be wrong this time. For a split-second, I thought, "His heart," but then he managed to get out that it was his back, again. He'd flipped his head over to dry his shoulder-length hair and that was enough to cause a cramp so severe it prevented him from being able to take a normal breath. All he could do was that panting thing, short, rapid intakes that made him seem panicked and twitchy.

     He wasn't really panicked, mind you; it just seemed that way. When I asked him what happened, he told me what he'd been doing and that he suddenly felt as though he'd been shot in the back, the pain was that sudden and brutal. My first thought (and I'm not proud of this) was, "No. I am not making my fourth trip to the emergency room in as many weeks. Not happening." In that moment, I almost lost that control I so pride myself on keeping tightly in check. I didn't want to listen as my husband tried to describe what was going on in his back, how the pain was beginning to spread. I left him sitting on the edge of the bed as I stomped off to the kitchen to get his daily meds, plus a Flexoril.

     I had it so firmly in my head that he had to go to work today, we were so damned close to a full week, that I just didn't listen for the first few minutes. I gave him his pill and some apple juice to wash them down and then I sat on the edge of the bed and tried to reassure him that we just needed the cramp to let go, that all would be well if we could just accomplish that goal. I probably said out loud, "I can't go to the ER again, no. I can't," because I distinctly remember my husband starting to chant, "Stay with me, stay with me, don't leave me." It pulled me out of whatever badness I was about to lose myself in, so thank God he did.

     I was quick to reassure him that no, I would never leave him. I assumed, wrongly, that he was asking me not to end our marriage and leave him for good. And before you jump all over me and my apparently huge ego, let me clarify a bit. My husband has a bit of a guilt complex about his disorder; namely, that he feels as though he's dragging me and my life down with his medical needs. He couldn't be more wrong in his belief if he tried and I believe he knows that, somewhere in his brain. However, he also believes that he's a burden on me and that's a pretty deep-seated belief, one that's hard for him to get around sometimes. There have been a few occasions when we've had to deal with some situation brought about by his disorder that were bad enough to make him turn to me and tell me to leave, that I'd be better off. Yeah, about that - Never.Gonna.Happen.

     Eventually, I got him settled on the couch with two blankets, a couple of cats and his cell phone, should he need to call me at work for help and then I left. I was thinking all day about what he'd said to me, how he'd asked me to stay and my reassurances that I would never leave him, that he was my match and my love. When I got home, I first asked him how he was doing and when I received reassurances that he was slowly making progress, I told him what I'd been thinking about all day. Whenever I want to write about something that's potential a touchy subject for him, I always discuss it with him before I sit down at my computer. In this case, I'm so happy I did, because it allowed him a chance to clarify what he'd been trying to convey.

     You know how I've mentioned before that I need to work on not being so hard and getting so easily frustrated with him at times when something like this morning happens? Well, my husband knows me well enough to know when I'm getting to that frustrated point and was trying to pull me back. By saying, "Stay with me," he was attempting to keep me in the moment with him, asking me to continue to be the partner that he needed at that moment, not the girl who was pissed off at the circumstances beyond her control. I'm really, really glad he had the presence of mind to do that, to recognize what was happening and pull me back to him.

     It's a huge, huge step for us, that this is a definite example of us learning to take care of each other in the face of his disorder. He's getting the hang of asking me for what he needs when he most needs it and I'm at least learning to recognize those requests for what they are. I was able to get back to him this morning, to push the frustration away and focus on my husband and what I needed to do to make sure he was okay. I'm well aware that I sound like some sort of self-help/marriage counselor here, but I can't be the only one who's got these issues. In fact, I know damn well I'm not, because I get the occasional e-mail or comment that proves it. It's for that reason that I'm going to keep writing about it every time something this good out of the bad happens. That, and this also helps me figure out my own head like nothing else.

Wednesday, January 11, 2012


     I'm tired of the heavy, heavy things going on in my little corner of the world at the moment and so I've decided I'm not going to share them just yet. I will at some point in the near future, because that's kind of the point of this whole blog, but not right now. I need a bit more time to process, to mull things over, to keep these thoughts between my husband and myself until I can refine them a bit more into something that's much more representative of what I'm trying to say. I really do try to put the best I can out here in the great wide internet and it bothers me when I can't quite get my point across because it's too convoluted in my head. Therefore, I have to let things settle down a bit. Also? I want to write a happy post and not think about the rest of it right now. I need a break every so often.

     I finally feel like I'm getting somewhere with my grand plans for the rest of our lives. That makes me sound like I'm super-controlling, like I'm planning out every move we as a couple make, but I promise it's not that way. Big decisions, such as me going back to school to finish both my bachelor's and my paralegal certification, are always discussed in great detail and then the two of us figure out what's going to be the best plan of action. Granted, my husband's disorder does come into play more than either one of us would like when trying to plan for the future, but we deal. In almost every way, we're just like any other couple navigating our lives with one another as best we can. There's simply one more element that we have to consider.

     Despite the events of the past couple of weeks, it seems that things are moving and happening and falling in line for once. Halle-fricking-lujah, right? My classes at school went a little wonky last week when one got dropped suddenly, but I was able to meet with someone this morning and a new class, the last one I need to complete for my bachelor's, was slotted into that vacant spot. So very relieved that I've got that sorted, let me tell you. I've been working on that damn thing for a decade (no, really - I started college when I was seventeen, in 2002) and have spent far too much time and money to be three credit hours short of that much-coveted piece of paper. This is probably the biggest factor in my current yea-I'm-actually-getting-somewhere state of mind.

     I've also recently started looking at my relationship with my husband in a different way and that's got me pretty pleased as well. I can be a very hard person sometimes and that's mainly due to my belief that whatever the situation at home, you DO NOT let it bleed over into the other parts of your life and you DO NOT let it impair your day-to-day functionality. That belief, combined with the fact that I've always been a healthy specimen and so don't really have a concept of what it's like to be in my husband's place, leads to my patience running very short sometimes. As a consequence, I react badly every so often when he's unable to put whatever it is that's paining him on that day to the side and present a "normal" front to the world. It's how I operate, keeping that front always in place, and when I see others unable to do the same, it's hard for me to understand.

     Lately, though, I've started making a conscious effort to be kinder, more patient. The fact of the matter is, as much as I live this disorder every day, what I experience and the effects it has on my life are not the same as what my husband experiences. I'm never going to fully understand it, because it's not ME. It's not my body that's being affected in so many ways and it's not my head that's being fucked with. Well, I guess the head thing applies to me too, but in a different way than it's applicable to him. Once I got that seemingly obvious concept through my thick skull and into my brain, it was a little easier, all of it. It seems wrong that I would have to learn to be compassionate towards the man I love more than anything, but it's not nearly as easy a concept to master as you'd think.

     It's a little happier around here now, though some badness came down hard just after Christmas. We're working on getting back to okay, but it's simultaneously easier and harder to do that this time. I know, that sounds deliberately contradictory, but it's the only way to describe it and it's true, trust me. I think it's better now because I can see things differently and so am able to provide my husband with more and better support. That alone makes me happy and I'm happier still when I see how it affects him. Again, I'm sure some people will think this shouldn't even be a thing, that of course I should be utterly compassionate and think of nothing but him whenever something happens, but to those people I would give the argument that you don't know until you're in it. You just can't imagine all the thousands of layers that are there until it's you trying to pull them apart.

     So, what have we learned today, kids? 1. I'm tired of the sad, heavy posts and so decided to take a break because it's my blog and I can if I want to. 2. My husband and I are making headway for the first time in what feels like forever and it's such a relief. 3. I'm learning to be a kinder, gentler, more supportive wife. Note: this newfound gentleness and compassion extends only to my husband and homeless animals. If you do not fit into either of those categories, don't expect to come to me and have your woe-is-me attitude validated; it's not going to happen. That keep-moving-forward attitude is still firmly in place and applies to all other areas of my life. I'm just learning how to make it co-exist peacefully with what I now know my husband needs from me.

Wednesday, January 4, 2012

Both Sides Now

     In everything I do, I try to remember that there are two sides to every story. I like to look at an issue from ever possible angle before deciding on a course of action so that I can make the decision that feels most solid to me. While I understand that this is a practical, sensible approach to take, it's actually much more selfishly motivated in my case; I loathe being wrong, so I try to figure out which choice of action has the smallest chance of resulting in that unfortunate outcome. The vast majority of the time, it works, so I'm pretty satisfied with my methodology. After what transpired yesterday, though, I'm wondering if maybe it's been sheer dumb luck that's been responsible for my success thus far, because I don't think I'm quite as good as I thought I was at imagining what the other side of the story is like.

     To spare you the gory, disgusting details, I'm just going to go the short and sweet route here and say that I was hit with the stomach flu yesterday at about 4:30 in the morning. Everyone gets it, right? Or at least has had it at some point in their life and can agree with me on the fact that it's a less-than-life-threatening ordeal. I've always been told to go back to bed, drink lots and lots of Gatorade to keep from getting too dehydrated and wait for it to run its course. I was pretty positive about my self-diagnosis, too, because I have this weird thing that happens whenever I have the flu; it's like a gross barometer of how sick I am. You see, I, um, black out if I puke hard enough.

     I KNOW! That's one of the grossest things ever, but it's true! And it apparently only happens when I have the flu, because that's the only time it's ever happened to me. Since it did, I knew what the problem was and stumbled back into our bedroom from the bathroom to share my diagnosis with my husband. I thought he'd be nonplussed when I told him that I woke up face-down in the bathtub and that it was something as simple as the flu, but he instead popped out of bed and immediately stated his intent to put my ass in the car and take me to the emergency room.

      I was not keen on this idea for a couple of reasons, the first and foremost being that I was still feeling all kinds of vommitous (yeah, I just made that word up) and had no desire to ride around in a moving car. What I wanted was to take a hot shower, call in to work and wait for the urgent care facility nearest our house to open so I could call my mom to come get me and take me there. (I have absolutely no shame that I am a twenty-seven-year-old woman whose first instinct when she's sick is to call her mother. None.At.All.) My other reason was a bit more political in nature; I don't believe in going to the ER for something that is not a true emergency because it clogs up the works and puts such a strain on resources that the people who truly need it have to wait for care. I could go on and on about the current state of our nation's emergency rooms, but that's a post for another day.

     Husband made it very clear that he was not to be swayed from his position of "Get in the car, we're going to the hospital." I tried to reason with him, telling him that the flu was nothing and they weren't going to do anything for me I couldn't do myself. Didn't work. I next tried promising him that I would call my mother as soon as an urgent care was open and she would come get me and take me there. Nope, that didn't fly, either. I finally resorted to whining, and I promise you, when I really get going, a spoiled toddler's got nothing on me. I'm pathetic and needy when I'm sick anyway, but then to be told I had to do something I didn't want to do? Forget it.

     Unfortunately, my tactics all failed and I had to go to the hospital. There were only two other people in the waiting room when we got there, so I got in quickly. I was hooked up to an IV to give me fluids and some lovely, lovely anti-vom medicine and blood was taken to run some tests with. I knew what the results were going to be and sure enough, four hours later the doctor came back with a diagnosis of stomach flu. Great, so I can go home now, right? My husband had left to go to work by that point, but my mom was there, so after the nurse unhooked me from the tubing, Mama took me home and got me settled in to watch PBS for the rest of the day. It was like I was seven again.

     As I lay there, though, I was thinking through the events of the morning, mostly because, hey, what the hell else was I going to do all day? As irritated as I was at my husband for making me go to the hospital for something I deemed trivial, I finally came to the conclusion that I really had no right to be. Not unless I wanted to be a hypocrite and there are few things in this world that I hate more than hypocrisy. I mean, is there a chance in hell that I would've let an incident like that go had it happened to him? Not in a million years. Especially such a freak thing like passing out while being sick. What the hell is that, anyway? (Actually, it's this - vasovagal syncope. It's a real thing, check it out.) Of course, we didn't know that until we went to the hospital.

     It's so much easier, in some ways, to be on the sick side of things. I know my body pretty well and that's a big part of why I dug my heels in so hard - I didn't feel like something was wrong in a major way. I trust my body to tell me if something is really wrong and I expect everyone else to trust me when I tell them that it's nothing major. If, like my husband on Monday morning, they don't listen to what I'm saying or insist that I get checked out anyway, I get irritated and resentful. Who knows me better than me, right? If I say I'm fine, then you should take my word for it, yes? I wish.

     I try to hold to that line of thinking when it comes to my husband and his disorder, because I know how much he hates running to the ER every time for every little thing. Truth be told, we don't actually  go unless it's something he feels is serious business. I have to trust him to know when to go, when not to. I also have to know when to push, though, when to trust my instinct to override his own. It's not a fun position to be in, the care-taker. I can't stand here and say I prefer one over the other, but I can say that I've got a bit more insight into what it must feel like to be my husband on those mornings when we venture out into the world of IV's and MRI's.

     The feeling of being not only helpless, but exposed to the world in such a state, is something I have distinct dislike for and can only imagine my husband feels the same. The waiting room of the ER is suddenly twenty times more uncomfortable when you know the other people in there are looking at you with wariness and thinking, "God, I don't want to end up like her, whatever she's got." And keep in mind that I was still walking around under my own power and looked mostly normal. There are times we've gone in when my husband has to be wheeled through the automatic doors to the ER in a wheelchair and he can't even pick his head up because he's in such pain.

     I may have a little bit more insight into what my husband's typical side of the equation is like, but I don't know that I'll ever fully get it.

Sunday, January 1, 2012

New Year's Day

     I know it's kind of a cliche, the whole making of resolutions and vowing to start living your life in a more productive, satisfying manner, but New Year's just feels like a clean slate, no? It does for me, always has, and so I join the millions of people every year who make up their minds that THIS is the year; this is the year I'm finally going to get in shape, the year I'm going to start a savings account, the year I'm going to quit screwing around and go back to school. I have no idea what percentage of people actually keep their resolution and to what degree, but I imagine that at least a few actually do make whatever change in their life they deem necessary and it sticks. I myself always begin with the best of intentions and do so well for about a week, maybe two...and then I start slipping back to the way it was and it's all downhill from there.

     I think that this time, though, is different. This time, I have to make some changes in my life, both for myself and my husband, if I want us to be able to keep going merrily along without too much trouble. Truth be told, 2011 turned out to be a miserable fucking year and I'm not sorry to see it go. It don't know what was in the water, but damned if it didn't effect a ridiculous number of people in my life, both close to home and far away. It was the year of job losses, demotions, busted relationships, financial crisis, health nightmares and work issues. I know those things can and do happen every day, and both I and my circle of loved ones have experienced them before, but it really seems like they've never come as fast and hard as they did this year.

     I'm not going to go into each and every incident, because that's unnecessary. Suffice it to say that however strong I thought I was before, I didn't really have the first clue as to what that meant. Yes, there were a few unpleasant things in my younger years that I weathered just fine, like my father's cancer and the car accident that almost killed me when I was sixteen, but they didn't feel nearly as heavy as what came at my husband and I in the past twelve months. Things completely beyond our control, mostly his disorder, crept into every crevice and made the simple day-to-day so damn hard with alarming frequency. I was put into positions I never thought in a thousand years I'd be in, backed into corners I'd never thought I'd have to fight my way out of.

     I did, though, I did whatever I had to do to make sure my husband and I were okay and going to stay that way. Huh. That whole last sentence sounds a little dire; perhaps I should clarify. I wasn't out selling my kidney on the black market or anything, I just had to put my brain to work in ways that I never have before. I had to dig really deep sometimes to be able to keep putting one foot in front of the other without anyone knowing what was going on behind the scenes and I was pretty damn successful, if I do say so myself. That's the one good thing that came out of last year, now that I reflect on it - the discovery that I and my loved ones were made of sterner stuff that we'd ever believed.

      It's because of everything that happened and everything that didn't that I believe this year is going to be a great one. I'm a huge believer in karma and the idea that what goes around comes around (which is kind of redundant, but anyway) and by that logic, 2012 is going to be some kind of wonderful. Is that wishful thinking? Maybe, but I don't really care if it is or it isn't. If I believe it, maybe that's enough of a trigger to make it happen. You know, like"If you build it, they will come," or something to that effect. I've made my resolutions that I think are going to be beneficial to my husband and I, which I will do my damndest to keep. Besides that, though, I've  made up my mind to truly believe that this is going to be a great year. And that right there, that solid belief, is going to be the key element to making sure greatness is headed my way.