Thursday, April 28, 2011

The Cane of His Existence

    My husband has had this cane since the spinal fusion he had done almost fifteen years ago. There's a walker somewhere out there, too, but the cane is the one I'm familiar with. It's a rather standard hospital-issue creature, though it is taller than most, because my husband is taller than most. He hates it with a fiery passion and it only comes out when he has absolutely no choice. Yesterday and today were such days. I knew yesterday morning when he pulled it out of the closet he's banished it to that his back was bad, worse than usual. Only once in all of the trips we've taken to the ER has he ever pulled out his cane and I swear he was ashamed to do it that one time.

     If you know my husband at all, you would know it makes sense that he would be ashamed of something like that. He doesn't like to acknowledge the fact that something is wrong with him, and that stupid walking stick is, for him, not only a tangible reminder that he's not well, but proof that once in awhile, he just can't do it on his own.

     I think that's harder for him to stomach, that he can't always be completely self-sufficient, than the fact that he's unwell. He's so independent, which is something I understand well. As a like-minded person, I get that he wants to prove to himself that he can still do whatever he wants/needs to do. Except for, that's no longer the case.

      It's becoming increasingly difficult for him to do everything himself and there have been episodes when I've thought to myself, "Jesus, what the hell would he have done if I hadn't been here?" I don't mean to say that he can't function without me or that I'm the only one who can take care of him; I'm speaking of the most practical matters.

     There have been times when I wondered how the hell he would have gotten to the hospital had I not been there to help him get to the car, because God knows calling someone for help would be too simple. ("Hardheaded" doesn't even begin to cover it.) Once, the only other time I've seen him use the cane, the pain was so bad he couldn't even get out of bed until I'd fed him a couple of Flexoril and they'd had a chance to kick in. Only then were we able to make our way, very slowly and very painfully, to the car. What would he have done had he been alone in the apartment? Sent the cat to call 911? Doubtful, as kitty has yet to grow opposable thumbs and learn to dial a cell phone.

     It just kills me when he gets that air of angry defeat about him and he has trouble looking me in the eye because he won't pick his head up long enough to do so. When I ask him why he hates that cane so much, the answer is always the same - "I don't use a cane to get around." Um, except for when you do. I don't like having to point that out, especially now, when the usages are few and far between.

     Someday, the cane will become part of his everyday, like his shoes or his pants. I'm not going to be the one to remind him of that, when he's already very aware. So for now, I'll let it go and not bring up the fact that I think he should use it at work if he's still having trouble getting around. It's demoralizing enough for him to use it around me and I'm not going to be the one to make his shame, whether misplaced or not, a public affair.

Wednesday, April 27, 2011

Girl, You Have No Faith in Medicine

     And we're right back where we've started, so damn many times. My husband had to call into work today for the third time in as many weeks. The pain in his back was so bad today that he laid down on the floor and couldn't get up for about thirty minutes. Yes, I know. Why didn't I help him up?

     I tried, but he A) wanted to do it himself and B) weighs too much for me to get up by myself. I could've done major damage had I pulled something too hard or twisted him the wrong way. (Also, there's a huge psychological factor to incidents like that and I know it won't make sense to anyone who isn't in my position, but I had to let him try and get up by himself, to prove to himself that he still could.)  Why didn't I take him to the hospital? TO WHAT END?!?! Why would we go back to the hospital for the same damn thing we were there less than two weeks ago for? So they can dope him up again and he can go through hydromorphone withdrawals again? No, thank you.

     I'm sorry if I seem callous or angry at the moment, but I'm very frustrated and very scared right now. I don't know how to help him, I don't know what we're going to do about this in the long run, I don't know what we're going to do to keep this from happening with this level of frequency. The painkillers are not the answer, trips to the ER are not the answer.

      I can't find any sort of viable option in alternative medicine that looks like it could be successful and I'm ready to tear my hair out in frustration. Once he's awake (he's currently in a Flexoril-induced coma), I'm going to ask my husband to call his pain-management doctor, though I don't think that's going to do us any good. I've asked him about it before and my husband says when last he spoke with that office, the consensus was to give him Flexoril to get him by until his lower spine had degenerated enough to warrant surgery.

     I still think he needs to be seen by that office again, because he hasn't gone in too long. They may not be able to do anything right now, but we've got to try. This constant, debilitating pain he's in has got to stop. Maybe they can try something else, something that wasn't available when my husband was first there. Or maybe they'll take a look and say it's time for surgery, which will ultimately be the best thing, but is not what I want to think about right now.

     On a practical level, it means he'll be out of work for at least two and a half months. Financially, we're not prepared for that and I don't know how quickly we could get there. Also, who will take care of him while I'm at work? I can't take that much time off myself, but it's probably not a good idea to leave a spinal-surgery patient to fend for himself for hours at a time.

     We do have three cats, so I suppose I could put them to work if I had to. Failing the felines, I'll have to fall back on family, which I know I can do if need be. They'll pull together and make it work, because that's how we roll. I haven't even tried to think about the emotional level of it and, pardon my inner three-year-old, but right now - not gonna.

    Of course, surgery may not be an option at this point in time. I know it's going to happen eventually, though, and we'll cross that bridge when we come to it. Right now, all I'm concerned with is finding a way to make him stop hurting. I'm losing faith in the doctors and I know it's too early in the game to be feeling that way, but this helplessness is not something I deal well with. Why aren't there more options for him?

     I've never looked at doctors and the world of medicine in general as something mythological, where everything is always the right answer and the doctors are demi-gods. There are those that do and I think that's foolish. Doctors are no more than human and can't possibly know or fix everything, but dammit, there has to be something they can do for my husband. There has to be something better than living in this loop of non-answers and band-aid fixes.

    

Tuesday, April 26, 2011

I Know Somethin' ('Bout You)

     My husband generally reads each of my posts soon after I publish them and sometimes we discuss them and sometimes we don't. Yesterday's post fell into the sometimes-we-discuss-them category. Once we were home for the evening, I asked him if he'd seen the latest and he replied that he had. I asked him what he thought about it and he said that he liked it. Since that's what he always says, I took it upon myself to push a little harder in an effort to get something a bit more descriptive out of him. So I poked a bit more and he said, "You didn't have to write that, you know." I was kind of puzzled by his response, so I asked him what he meant by that statement.

     As it turns out, he took that post as a public apology to him and an admission of being wrong. (Which, for the record, only happens once every seventh bicentennial when the moon is full and the crickets chirp.) I realized that he wasn't wrong in his assumption, even though that's not necessarily what I'd intended it as. What I was really trying to say was that, as close as I am to him, both physically and emotionally, there are still so many pieces of his disorder that I don't see. As our conversation progressed, I discovered that he's hiding the little pieces of his day-to-day with Marfan's far better than I thought.

     I thought, after our sojourn into shopping, that I got it. I thought I totally understood how so many mundane tasks are made more difficult for him because of the Marfan's Syndrome and its visibility. I still don't get it and am beginning to doubt that I ever will. My husband mentioned last night that though he appreciates what I'm trying to accomplish when I tell him he needs to let it go and not get bugged when someone stares at him or whispers about him, it's not that easy.

     He knows how easy it is to become bitter about the whole situation, because it's an emotion he's really familiar with. Granted, it's gotten better since I've arrived (not ringing my own bell, just saying that marrying the love of your life when you were afraid you were too broken to keep her does affect one's outlook on things), but it still creeps into his head some days.

     He told me that the difficulty in "letting it go" comes in because he gets so many comments and stares and boneheaded questions about his appearance and/or his ticking every day that it becomes harder as the day wears on to not let it get to him. He knows he shouldn't let it and he doesn't want to be a bitter old man about it, but knowing it in your head and being able to do it are two completely different things.

     Everyone wants to know what's different about him, because they know it's something, but they're either too scared to ask or too stupid to do it tactfully. By the time his mood descends to the point that I know something's eating at him, he's already on the eighth or ninth stupid comment of the day.

     I can't for the life of me figure out why it's any of their business to know anyway, but that's a question I'll never get an answer to, I'm sure. Maybe it happens because while you can look at my husband and know that something is off, it's not clear exactly what it is. Maybe that's what piques their curiosity, the desire to be in the know. Maybe they're genuinely concerned, but they just never learned the art of saying something tactfully. Or maybe they should learn some manners and mind their own damn business, because their thoughtlessness causes no end of trouble in his head.

Monday, April 25, 2011

If the Shoe Doesn't Fit

     A few weeks ago, my husband and I went shopping so he could get some new clothes for a wedding we'd be attending. I knew it was going to be kind of an ordeal going into it, because he wears a 38-36 in pants and really, who makes those? He's also got monkey arms, so trying to find a dress shirt that he doesn't have to settle for just rolling the arms up to hide the fact that they're too short is challenging.

      I was, however, optimistic with regards to my own mad shopping skillz. (Not that I'm a shopaholic or anything, but compared to my husband, I'm an expert.) He was willing to go with me, but not exactly what you'd call enthused. A lot of that can be chalked up to the fact that he is a stereotypical male in this area and just doesn't like anything that's not jeans and a concert t-shirt. A little of that reluctance came from something far weightier, though.

     This was not the first time we've been clothes shopping for him since we've been together and we've talked before about how difficult it is to find him clothes that fit. One of the most visible traits of Marfan's Syndrome is the elongated limbs and overall appearance of being more stretched-out than a normal person. My husband is six-five and maybe one-eighty. He's weighed less than that for longer than he hasn't, though, and at one-fifty or so? I don't know how he managed to clothe himself.

      On a practical level, it's a pain in the ass to find clothes for someone like my husband, because there are so few options available. The Big & Tall section of the stores are literally that - clothes for men who are both BIG and tall. I found not a single pair of pants on those racks that were smaller than a 42-inch waist. Same thing happened with the shirts - they had the right size for his skinny neck, but the sleeves would be inches too short. (Thanks again, monkey arms!)

     Now, as someone who has a 34G chest (that means I have large boobs and a small frame, for those of you not fluent in bra-speak), I know what it's like trying to find clothes to that fit when your frame does not fall under what manufacturers consider normal parameters. So when my husband told me about this particular hurdle, I brushed it off. After all, I'd dealt with this particular inconvenience for years and it has nothing to do with a genetic disorder, so what makes him special in this respect? Turns out, I'm kind of callous for thinking that, because I didn't know.

     I didn't know what it was like for him to have to publicly acknowledge that he's so different and does not blend in at all. When I asked a salesgirl to help me find the correct pants, she just stopped what she was doing and looked at me, bewildered. "Um, we might be able to order some, but we don't keep those in stock," was the response I got. Right, 'cause the tall skinny ones don't need pants like the rest of the world, I get it.

     Whatever, my mad skillz prevailed and I was triumphant in my furious search through the racks of 34-32's. The same scenario unfolded when it was time to purchase a shirt. That, actually, was a little harder for my husband because he had to get measured. I think it's always a little disheartening when he's faced with the numbers that prove he's not like the rest.

     Two and a half hours later, we were on our way to the shoe store to get him new Chucks. Chuck Taylor High Top All-Stars are the only shoes my husband wears. They're always black canvas with white rubber, so as to draw as little attention as possible to his size 16 feet. The exception to this is the one pair of all-black Chucks that he wears to wait tables on Saturdays. Before we'd ever left for the mall that morning, my husband had informed me that we would have to order his shoes online, because they don't carry them in the stores. I didn't listen. I thought I knew better than him, because I'm the shopper of the two of us, so surely that qualified me as being the one who knew best, right?

     As I was marching the pair of us towards the trendy shoe store known for being the place where the tweens go to get their Chucks, my husband reiterated that they wouldn't have his size, we were just going to have to order them online when we got home. Didn't listen, I knew better than him, you're going to see that I'M RIGHT! I walked oh-so-confidently up to the little punkster who was working and asked if he had Chucks in a size 16. He promptly bugged his eyes out and answered in the negative. He managed not to laugh outright at my request, but failed in keeping the smirk off his face.

     I looked around the store a little more, to see if there was anything I liked, before my husband and I left. Once we had, he told me that he'd heard the kid and the other employee whispering to each other and felt their eyes on him. When he turned in their direction, the whispers immediately stopped, but they couldn't avert their eyes quickly enough and he caught them staring at him.

     I mentioned once before that I always know when someone has made a hurtful remark to him about his appearance, because he gets a dejected air about him. That's exactly what happened in this case. It was worse for me this time, because I was the one responsible for it.

     It doesn't matter that I never intended for it to happen like this, that I never thought something as simple as shoe shopping could become such an issue; I should've trusted my husband enough to know that he wasn't just being difficult when he said he didn't want to go to the shoe store. I didn't, because I'm really stubborn and I like to be right.

     I'm learning, slowly and painfully, that being married to a Marfan's sufferer is going to humble me. It has to, so that I can be a better wife and partner for him. I have to learn to trust him on some things, to know that he's not just being difficult or oversensitive. (Is it even possible for someone like him to be oversensitive?) I'm pretty sure there's a lot I still have to learn.

Friday, April 22, 2011

Ordinary Pain

     I'm on the hunt for a better way to manage my husband's chronic back pain, which is the result of the spinal fusion he had more than a decade ago. It sucks to see him in pain all the time and not to sound callous or anything, but the unpaid sick days that he's had to take here lately aren't helping the situation at all. Obviously, running to prescription meds isn't necessarily the answer, since the bulk of them don't work anyway and the hydropmorphone? Read my post from yesterday to see how much I like that particular drug. In any case, it's always such a reactive course of action to take, the ER visit and consequent painkiller prescription. There has to be a better way to deal with this; I just don't know what it is.

     I brought this up to my husband, that I'd like for us to be more proactive when it comes to dealing with the Marfan's and all its side benefits. It's hard, considering that his is a mostly wait-and-see-what-breaks-next type of illness, but I really feel the effort still has to be made. For twenty-odd years, before I came into the picture, my husband never really thought about ways to better manage the situation. (I could explain why that was, and I will, but believe me when I say that that particular subject is worth months of posts. No, really.) Now that there are two of us being directly affected by this damn disorder, some things are going to have to change.

      I know what the drug options are and none of those are really proactive. I'm trying to figure out how to PREVENT these ER visits from happening in the first place, remember. I've started looking into holistic options and I must say, I'm getting disheartened. Once again, the amount of information out there for people with Marfan's Syndrome is ridiculously small. My husband mentioned to me that he was once advised to try acupuncture as a possible treatment for his chronic pain. Great! A starting point! As you might expect, he's by now not a huge fan of needles, but I figured if they're going into his back, he'd never see them coming, right?

     I was excited about this option for all of ten minutes before I found this - http://www.ncbi.nlm.nih.gov/pubmed/11603611. Oh God, an infection in the lining of the heart?! I swear, the more research I do, the more fun this disorder becomes. (That was sarcasm, for those of you that were unclear.) Now, that article doesn't say whether that particular patient had a pig valve or a titanium one (my husband has the latter), but I don't really think it matters now. Acupuncture = not an option.

     A friend of mine who's training to be a massage therapist suggested massage therapy as an option (whatever made her think of that?), but I'm skeptical. One, I don't know if a therapist would be able to work on him like they would a regular person, due to the relative fragility of his tissues and the hardware already in place. Could his muscles handle a deep-tissue massage, or would they be more prone to tearing? What about his spine? What if the masseuse used too much pressure and broke loose some random piece of hardware? The other problem is that massage therapy is again a reactive solution when what I want is to be proactive.

     I'm not to the point of feeling as though I'm beating my head against a wall yet, since I've really just begun to look into our options. I'm also trying to not assume that I'll end up there, either, because that would be defeatist of me. I can be realistic about the Marfan's and what effect it has on our lives, but that doesn't mean I'm going to be all Gloomy Gertie about it whenever a new problem pops up. I try to look at whatever situation we're in at the moment as objectively as possible and figure out how to put one foot in front of the other in order to get where I want to go. I think it's a good plan.

Thursday, April 21, 2011

I Don't Like the Drugs (But the Drugs Like Me)

     Here's an interesting question for you - what do you do when the only drug that works on the pain in your back is also so addictive that you suffer withdrawal symptoms after only five days of being on it? That's what's going on right now in my house, as my husband sweats and shakes his way through hydromorphone withdrawals. Hydromorphone, better known as Dilaudid, is a major (and majorly addictive) narcotic that he gets in IV form when we go to the ER with a back pain episode. He's had so much surgery already and, consequently, been on so many painkillers (Vicodin, Darvocet, Percocet, morphine, Oxycontin, pick your poison) that the only thing left in the medical arsenal is Dilaudid. Nothing else touches the pain anymore.

     Up until this last visit, he's only ever been administered the drug through his IV while we were in the ER. He's never gotten a prescription for it to use for managing his pain at home. This time, though, his ER doctor consulted my husband's specialist and together they agreed that he should be given a prescription for the painkiller, as well as one for Valium, to be used as a muscle relaxer. While I've always known that hydromorphone is pretty much the heaviest painkiller out there and therefore had major potential to be highly addictive, I was never quite sure why my husband was never given a prescription for it before now. Unfortunately, I've now got my answer.

     My husband spent last night sweating and shaking, and then freezing and shaking, all while curled up next to me in bed. Occasionally, he'd mumble something incoherent about how much it hurt, but I couldn't get anything resembling a complete sentence out of him, for obvious reasons. He knew, somewhere in the back of his head, what was going on - he was going through withdrawals. It's amazing to me how fast his body became used to that damn drug. You'd think that with the increased tolerance he has for the effects of narcotics, this wouldn't have been an issue, but I guess not. Today is not a good day for him.

     Now that I'm seeing the results of  hydromorphone withdrawals, I understand why it's typically reserved for hospice and terminal cancer patients - you're not supposed to come off it. Please don't think I'm being callous when I say that it makes sense for those patients to be on a regular schedule of Dilaudid because they aren't expected to ever have to contemplate possible withdrawal symptoms. Their use of the drug is entirely different than what my husband uses it for, though. For those people, it's a way to be as comfortable as possible and live the rest of their time as peacefully as possible, which is as it should be, in my opinion.

     All this thinking has led me back to a question that I'm sure his doctors have entertained before and that's what to do to effectively manage his chronic pain. If all the others don't work anymore and this super-painkiller (8 times stronger than morphine, milligram for milligram) is the only thing that does, but it can become very habit-forming, very fast, with nasty side effects, what other options are there?

      I know that it's slowly becoming more accepted to treat patients with chronic pain in non-terminal situations with Dilaudid, but I can't see how that's a good idea. Wouldn't my husband's body just become accustomed to that drug as well after a certain amount of time, thus reducing its effectiveness and requiring larger doses in order to work? And wouldn't that just open the damn door for addiction?

     I hate seeing how messed up he is after only five days on the hydromorphone and coming off it, so I can't imagine what it would be like if his doctors put him on it for the long-term. Maybe it would be different if he only took one dose when he felt the pain starting, though. Maybe it's only like this when you're on it for an extended period of time, however brief.

     The information at  http://www.drugs.com/mtm/hydromorphone.html helped a little to understand what exactly hydromorphone is and what it does. Remember, I said I always want to share whatever bits of info I can scrounge up and I'm sure he's not the first or only Marfan's patient to experience this. Hell, I'm sure he's not the first patient period, Marfan's or not, to experience it. I just don't know any others off the top of my head and so, as is so often the case, I find myself not quite sure what to do next.

Tuesday, April 19, 2011

And While We're On the Subject...

     I've been thinking about something since the second or third trip to the emergency room with my husband. When we get him all checked in and back to an exam room and whichever doctor is on call at that time comes in, they always start with the same round of questions. One of the first things they ask is if he's on any medications and of course, he rattles off his daily three - Losartan, Warfarin, and Toprol. And then he stops. No mention of the Marfan's until either I say something, or the doctor asks him point-blank why he has a titanium aortic valve (they can always hear it ticking and they know immediately what it is.)

     His silence absolutely drives me up the wall and the more trips we take, the harder it's becoming to keep my mouth shut. Actually, I wasn't able to during this last round. After the doctor had run through the standard list of questions and my husband had told them about his spinal fusion, but failed to mention the reason for it, I had to say something.

     I'm sure the doctor thought I was being a nuisance and simply repeating what was on his chart, but I had to reassure myself that we were all clear about my husband's disorder. What if someone somewhere screwed up and it's not written in bold letters in his medical records that he's got Marfan's Syndrome? What if the doctor is moving too quickly from patient to patient and didn't take the time to read my husband's chart before coming into the cubicle? What if charts got mixed up?

     Don't I have a right to fully disclose what my husband won't? He thinks he should be able to trust the doctors enough to be sure that they're well aware of his medical history. While I understand and appreciate that, I have to disagree. In the vast majority of cases, yes - the doctors do have the correct information and know what they're walking into when they come into the patient's room. What about the off chance that they don't, though? What if they didn't know about his heart and ordered the nurse on duty to administer something that doesn't play nice with one of his meds? What then? What if they didn't look at the chart and didn't recognize the Marfan's symptoms for what they are?

     I may sound like a paranoid freak, but if that's what it takes to do everything humanly possible to ensure that my husband doesn't check out any sooner than necessary, then so be it. What's the harm in being up-front about what's going on? What does it hurt to say, "Actually, I have Marfan's Syndrome and because of it, I had a spinal fusion when I was twenty-two and that's what's probably causing all the pain."? Tell me, where's the sin in that? I can't help it if I'm overly protective at times, because so much of the time, I feel so damn helpless when dealing with his disorder.

     I can't fix him, I can't help him when he's in pain, I can't make more vacation days magically appear for him. So what the hell options does that leave me with? Am I to sit silently in the corner and wait for the all-knowing, all-powerful doctors to make it right? Okay, fine, but I can be sure they've got all the information they need to put my husband to rights. This last trip to the hospital? I don't know if the pain was too bad that he was just out of it, or if he just didn't understand the question, but when the doctor asked him if he was on any meds, he said no. What, really? Then what the hell are all those little orange pill bottles on top of our refrigerator for?

     It's things like that that really scare me sometimes. I'm trying my best to take care of him, but I'm dealing with a disorder I'm learning about as I go along and the information I can find is pitifully sparse. I couldn't stand it if the worst happened and I took him into the hospital to be fixed and instead lost him to some medical oversight.

      I know he trusts these ER doctors to know what's going on, but I say that they don't know him or his condition and once again, what's the harm in me saying up-front that he's got Marfan's? There's so little I can actually do to help him with this and to now be told that I should just keep my mouth shut and trust that these nameless strangers will properly care for him? "Frustration" doesn't even begin to cover it...

Monday, April 18, 2011

Do You Want to Know a Secret?

     Last Friday's hospital visit was not the first one that's taken place during the workday. There have been at least five other incidents that I can think of in the past eighteen months. It is, however, the first one that my husband's boss knew about. I feel vaguely guilty about this, because our boss is one who likes to know what's going on in his employees' lives. He likes to touch base with all of us and he tries to foster an attitude of approachability, so that when one of us is faced with a problem, we all pull together to make it work.

     That's exactly what happened to me and my husband last week when it was discovered that he was a bit worse off than just "not feeling well". One of my co-workers came in on what was supposed to be his day off to cover for me and the other one stayed late to ensure that everything was running smoothly until the other one got there. You don't find offices like mine very often, so why the secrecy with regards to our hospital field trips?

     Before I came on the scene, my husband did not disclose his illness to anyone he worked with. As far as anyone knew, he just had a bad back that went out once in awhile and caused him to miss a day or two of work. The only reason they knew that much is because he had to tell them something and "I've got the flu", doesn't work after the fifth time in as many months. I knew about the Marfan's before we ever started dating and while I tried to encourage him to come clean with our boss, he was very, very reluctant.

     Most of his reasoning on that point was because he was/is so very uncomfortable with a public admission that he's not alright. One of the things he hates most about having Marfan's Syndrome is the potential to be pitied by people when they find out. He's never wanted pity, never wanted to be treated differently, and that's exactly what he's always afraid he'll get if he discloses the full truth of the matter to anyone.

      He and I, we're working on that and I like to believe I'm making progress with him in that area. I'm trying to get him to look at it differently, that people can have empathy for him/us and the situation we're in without thinking he's a pathetically broken creature, but his head is really thick. REALLY thick. So it's a constant work in progress.

     I'm still not one hundred percent sure how our boss found out what was going on, because I know I didn't tell him and the only person who knew where we were didn't tell him, either. It doesn't really matter how he found out, because it's not a bad thing, as I'm trying to get my husband to understand. The thing is, we have a routine for when an ER visit is in order. The pain always wakes him up very early in the morning, around 5 or so. His moving around in the bed to try and find relief always wakes me up and I'm usually the one to say, "Do we need to go?" His answer is always, "I guess so," and is always said with the greatest reluctance.

     He then sends an e-mail to his/our boss, which I'm sure simply says that he's not feeling well and will not be in that day. He never elaborates on what exactly is wrong. We then get up and I help him get dressed, put him in the car and take off for BJC, the hospital where his specialist is based. Park the car, take him to the waiting room, wait while he gets his vitals taken and gives his insurance information. We rarely have to wait long for a room, because a heart condition is like the golden ticket in a hospital situation. Once he's back there and has changed into his sexy, sexy hospital gown, we wait for the tech to take his vitals. Again.

     Then comes the nurse, who hooks him up to the heart monitor and draws his blood for the tests that they run every damn time. Finally, the attending physician comes in and asks the same questions he gets asked every time we're there. There are always x-rays to be had, medical histories to review, painkillers to be administered through an IV. I hang out as long as I can before I have to leave to go to work and when the clock tells me it's time, I kiss him, tell him I love him and go on about my business. He texts or calls me when he's released and I use my lunch break to pick him up and take him home. Then I come back to work and finish my day, with no one the wiser as to what's going on behind the scenes.

     I know, it seems like a lot of extra work for something that likely wouldn't cause a problem. In my husband's case, it almost surely wouldn't cause a problem. I've mentioned before that our employer is unusually gracious about sick leave and things of that nature and I know no one would say a cross word about a hospital visit. We're so damn lucky in that respect, because I hear stories of people who are so scared of losing their jobs that they wouldn't dare tell their boss about a trip to the emergency room for fear of being seen as a liability and subsequently cut from the payroll. I cannot articulate the level of gratitude I feel at not being in that situation.

     No, in our case, it's really more the fact that a trip to the hospital just doesn't mean the same thing that it does to most people. It's not that it's a non-event in our lives, but it's not inaccurate to say that visits of this nature are routine for us and therefore rarely noteworthy. Now, this latest one was, for the simple fact that it was the first time since we've been together that his heart has been brought into the picture. Every other time, it's been just the pain in his back, clearly caused by muscle cramps. This time was different for that one reason and because of it, I didn't react the way I normally do.

     This trip, I wanted very much to stay at his bedside and not to leave him until I heard the doctor say his heart was whole, but I didn't feel comfortable doing that. I didn't know how to tell our boss my husband's true whereabouts without making it sound worse than it was, because to us, it was just another day. On the other hand, as I write this, it occurs to me that perhaps my husband and I are the ones with the murky view of the situation. Perhaps we don't give it enough gravity and instead write it off as just another part of dealing with Marfan's. Perhaps we need to treat it as something  more than we do.

     I know that the next time it happens, I will make sure that he tells our boss exactly where he is and what's going on. We're too far into the light of day to pull back into the closet with regards to telling people the truth about his disorder. As painful and uncomfortable as it is for him to talk about, it has to be done. For too long, he's hidden everything he can and tried to deal with it as best he could. He's accepted help from very few, asked for it from less. Here's hoping I can help him to understand that it doesn't have to be us against the world with this; people are there and willing to help, but you have to let them.

Friday, April 15, 2011

The Only Thing to Fear is Fear Itself...And An Aortic Tear

     Have you ever felt your heart shiver inside your chest because you're so scared? I mean you can physically feel it flutter and not in a good way. Happened to me today on the fourth floor of the parking garage at the hospital. For a few minutes, I lost control of my head and it did very bad things to me in that short span of time. All this happened while I was making my way through the garage to the emergency room where I'd left my husband a couple of hours before.

     I'd taken him there at his request earlier that morning because the pain in his back wouldn't let go, had spread to his chest and he was having a difficult time breathing. What's that you say? He had a check-up only a few days ago and was found to be in (relatively speaking) great shape? Why, yes! Yes, he did. And today he's in the ER and that's what's known as irony.

     As he walked by my desk at work yesterday, he mentioned that his back was starting to cramp up, so he'd taken a Flexoril. That's a fairly heavy muscle relaxer and some would say it's kind of overkill for something as simple as a muscle cramp in his back. Can't he just stretch it out until it goes away? Actually, no.

     The thing is, Marfan's Syndrome affects the body's connective tissue, right? That would include the tissue that connects one's vertebrae. When he was twenty-two, he was carrying a loaded tray of food at work one day and suddenly couldn't feel anything below his waist. He thought to himself, "Well, THAT doesn't seem right," put the tray down and went straight to the doctor. Of course, first order of business was an x-ray and upon viewing that x-ray of the jacked-up mess that was my husband's spine, the good doctor scheduled spinal surgery.

      I've seen the x-ray myself and I have no idea how he was still walking around. According to my very limited medical knowledge, the nerves in his spine should have been so compressed that walking shouldn't have been an option. Seriously, that image is like something out of a horror movie. (And yet, he thinks building a custom light box and displaying that x-ray in our home like art is good idea. He's a strange one...) What ended up happening was that the powers that be put in three titanium rods of varying lengths and all the accompanying hardware and fused his spine together for a good twelve inches. The scar that runs up his back is roughly twice that long.

     So now, he can't twist and turn like a person usually would and those muscles that now never get used have atrophied to some degree. When he says they're cramping up on him, he doesn't mean he's got a damn charley horse; he means the muscles are spasming so severely that he can't move, or in this case, breathe properly. I'm used to the pain in his back and I'm used to trips to the ER for the major painkilling drugs administered through IV's, but I am not used to the pain banding his chest as well and causing him to have difficulty breathing.

     As I've said before, we don't run to the hospital for every damn thing, so when he woke me up this morning by telling me he needed me to take him there, I knew it was bad. And when the attending physician mentioned a CT scan and the words "aortic tear", something went a little wonky in my head. I kept listening to the doctor talk and stayed with my husband as long as I could before I had to leave for work. When my time was up, I kissed him, told him I loved him and to call me when he was ready to be picked up, and left for work.

     I know that one of the major concerns with Marfan's is the possibility of an aortic dissection and I know that his risk for such a thing has been dramatically lowered since he got new parts, but... Why did the doctor want to check for an aortic tear? A TEAR IN HIS HEART?! Are you kidding me? I realize now what an abstract concept it's been to me, the aortic destruction possibilities. It was never real, because I never had to face it. I've only ever had to face muscle issues. (Yeah, I know, the heart is a muscle. Not the point.) Today it was awfully damn real and I was not prepared for it.

     When my boss caught wind of what was going on, he sent me out of my office and right back to the ER to be with my husband. He's kind of awesome that way. It was during the short return trip across the parking garage that I lost it for a few minutes. There were no outward signs of the screaming panic, because that's how I operate - keep it together and keep moving. My head, though. Jesus Christ, it was bad.

     I felt my heart move, swear to you it dropped, when I thought about losing him to some tiny hole that had no business anywhere near my husband's heart. I tried to calm myself - obviously, if it's there, it will be found and dealt with. And if there's to be open-heart surgery, at least it will be at the hands of Dr. Braverman and I'm told there is no one better. Those thoughts worked about twenty-five percent of the time.

     I did what I always do, though, shook it off and kept moving because my husband did not need me to go to pieces over what turned out to be nothing. We sat in our little cubicle in the ER for another few hours, until the nurse came in to unhook his IV and send us home with paperwork and two prescriptions to be filled immediately if not sooner. I helped him dress and we walked through the hospital to the elevators in the parking garage. My car is a manual, but we held hands on the way home anyway. I needed to reassure myself that he was with me still and okay. I'm going to have to figure out something to do with my head before the next round, though. Any thoughts as to what?

Wednesday, April 13, 2011

More Love

     Sometimes, I wonder why it has to be this way for my husband and I. I know that everyone has had the same thought about something or other at some point in their lives, about problems small and large, manageable and unmanageable. I've thought about how lovely it would've been to just be newlyweds, with our whole lives stretched out in front of us, all soft-focus and warm colors.

     I don't mean to say that we don't have our lives stretched out in front of us, just that the focus is usually hard and sharp and the warm colors are mixed with quite a few shades of ugly. For us, it's more like we get moments of perfect and then we're yanked back into the ugly when he has a head rush and it's off to the ER.

     Again, I don't mean to sound like we live a horrible life, always under the cloud of his illness and only seeing the sunlight when we can pull ourselves from our miserable existence long enough to catch a glimpse of it. Um, no, not the case at all. Most times, we're disgustingly happy in our little house in the 'burbs, being hermits together and playing World of Warcraft on our side-by-side computers. (Yeah, that's right - NERDS IN LOVE FTW!) The point I want to make clear is one I've made before - with things like Marfan's and related disorders, every day is just a little harder than it should be.

      The vast majority of the time, I don't even think about the extra weight and neither does my husband. For him, it's been his life so long that it's a non-thought most times. For me, it's the knowledge that if there's no extra weight to my days, that would mean there's no him. No him is just not an option, so there you have it. I would be lying if I said that melancholy didn't win every once in awhile, though. It usually hits us at different times, so it's one or the other lying awake at night while the fears run rampant. I know that when it pays me a visit, I wish like hell for a switch to just turn it off. I can't rest because of the continuous whatarewegoingtodowhatarewegoingtodo that doesn't quit.

     Today, though, it dawned on me that I don't need to be afraid anymore. For whatever reason, while I've always known, in a back-of-my-mind sort of way, that we have people to lean on if we need to, that thought has never made its way to the forefront of my brain. Now though, it's so damn clear that my husband and I will never be left alone to cope with this, because it simply can't happen. There's just too much love and support from every corner of our lives for that to be a possbility.

     I'm going to take a moment here to be sappy and sentimental, which those of you who know me know is a phenomenon that occurs about as regularly as lunar landings. Actually, it's borderline creepy when I'm sappy and it tends to freak people out, but I'm doing it anyway. What got me thinking about all this love was a kind word from a co-worker this morning, who stopped to tell me that she thought I was doing a great job with this blog.

     This was after an e-mail from a cousin, who just wanted to check in and let me know she loved us and was thinking of me and my husband. It was after a friend of my husband's, whom I've not yet had the pleasure of meeting, left me a lovely comment on the Book of Faces sending his love to us as well. Could I ask for more?

     The best part, though, is that there IS more! My parents, his parents - both have started reading this and have said how proud they are. His sister has expressed, many times, how glad she is that we found each other and that I'm doing this for both of us. My husband's best friend back in North Carolina? He reads what I write and has told my husband that he supports what I'm doing, too.

      All of this and more, so much more from the incredible people in our lives, that's why I think I'll be able to sleep at night now. I know, without a doubt, that my husband and I won't fail, we won't falter or be left alone to find our way. The Marfan's isn't going to get the best of us, because it can't. There's just no way the disorder and all its prickly, nasty little tendrils are going to have a snowball's chance in hell of competing against all that love and support.

Tuesday, April 12, 2011

Happy Happy, Joy Joy

     Today was the big day of the year, as far as my husband's maintenance is concerned. Once a year, he has to go see the man we refer to as "the big doctor", one of the nation's leading specialists in Marfan's Syndrome. Fortunately for us, he just happens to reside in St. Louis. That was a happy coincidence as far as my husband is concerned, because he didn't move to the midwest for the medical care. (He moved here because of a girl, but that girl wasn't me, so let's move on, shall we?) While the care he was receiving in Charlotte was very good, I have to say I'm really, really happy that he's here in St. Louis.

     In preparation for today, my husband took a personal day from work and made sure to get a good night's sleep last night. He went in for his echocardiogram first, before his consultation with the doctor. It really didn't make me nervous, knowing that he was going in for testing and whatnot today. Part of me thought I would be, but I was really more concerned with what his bloodwork was going to look like. The echo came back fine and the doctor let him know that all was well for the time being. He was particularly pleased when my husband informed him that he'd quit smoking, as that's obviously a bad habit for anyone, but particularly stupid for someone with known cardiac issues to pick up.

      The best news was still to come, though. The specialist told my husband that he was so pleased with the echo results and his general state of being that he actually wanted him to exercise! Yay exercise! Of course, my husband's initial reaction was, "Uh, what?", since it's widely known that one of the key components to keeping him alive is maintaining a steady heart rate. Physical activity has not been on his agenda for many a moon and now to be told that he not only could (within reason, of course), but should? Hubby's brain was a bit boggled momentarily.

     The reason for the exercise order wasn't just because the doctor thought it sounded like fun, though - my husband has apparently gained twenty pounds since last September. As with just about everything else, his weight is a subject matter more complicated than a normal person's. He has a hard time gaining any sort of muscle mass (lucky for him I've always had a thing for the skinny ones) and when he does pick up some weight, it's oddly distributed. His legs and arms are about as big around as my calves and as I'm only 5'4" and about 150, that should tell you something. I think his doctor was more concerned with the added effort my husband's heart would have to put out in order to compensate for the excess weight than any aesthetic reasons.

     That's okay, though, because if our biggest issue at the moment is how to help his lose a bit of poundage, we're doing phenomenally well. AND, in another bit of happiness, when my husband went to the next medical meeting of the day, one with the doctor who monitors his INR, he was told that his levels of warfarin didn't need to be adjusted. Why is this significant, you ask? Remember a few weeks ago when I posted that we were starting Weight Watchers together and that I was worried because of the potential havoc the increased levels of vitamin K could wreak on his blood thinner? When the INR came back just fine, that was a clear indicator that we were okay to proceed as we had been with the leafiness of our new diet.

     INR, by the way, is an acronym for international normalized ratio, which measures the clotting tendency of blood. Always important to have this checked regularly when you're on a daily dose of warfarin, as my husband is. I was afraid that when we started eating more fresh green veggies, it was going to have a seriously adverse affect on him, but we're apparently in the clear, so long as we keep it consistent on the vitamin K intake.

     It's nice to feel sometimes that living with Marfan's isn't all gloom and doom and that we can be our own brand of normal, after a fashion. It's nice to know that if  I want to go for a walk with him, I can do so without fearing that he'll keel over from internal bleeding if we try to climb too steep a hill, or that we can change our diet to be healthier without fearing that it's slowly causing his blood to thicken to undesirable levels and putting him in danger of a clot. It's nice to feel that maybe the professionals aren't the only ones who know how to take care of him. Maybe I'm getting the hang of it, too.

Sunday, April 10, 2011

Saturday Night's Alright

     Who wants to make a trip to the ER at 1:10 in the morning? Oooh, me! Pick me! Over here! Um, or not. Last night was great, until it wasn't. It was a fairly typical Saturday evening for us, maybe a little better than usual because my husband got off work from his second job earlier than usual and that always makes me happy. We went to get some take-out and grabbed a horror movie on the way home, ready for a comfy evening with Rob Zombie. (We're both HUGE fans of Zombie as a director, love his movies.) Evening progressed, we ate our take-out, watched our movie and made for bed a bit after midnight. Boring, yes?

     Well, no, we rather enjoy being hermits, but that's neither here nor there. My husband was almost asleep already when he suddenly sat up in bed and asked me to go flip the light on. I knew right away something was wrong, because he tries very hard not to disturb me if I'm asleep or almost asleep and would never ask me to go turn on the light if it were something he didn't think much of. So I turned the light on, asked him what's going on and he tells me he can't get his breath and it feels like there's a band tightening around his chest. Sonofabitch.

     My first thought was for his heart. I know Marfan's kids aren't especially prone to heart attacks or anything, but we can all agree that the heart isn't their finest attribute. He assured me that it wasn't and since he wasn't ticking any louder than usual (a dead giveaway that his blood pressure is not where it should be), I checked that one off my list.

      The next thought was a collapsed/collapsing lung, which he is prone to as someone with Marfan's Syndrome and which has happened twice before. However, there was no pain this time, just the feeling of the band tightening and the difficulty drawing a deep breath. Perhaps just the beginning of a collapsed lung?

     I know what the obvious answer here is to most people - put his skinny ass in the car and get him to the ER! Well, that was my first thought, too. I asked him if he need me to get dressed and take him over to BJC, the hospital where he goes for maintenance. He asked me to give him a little bit and if he still felt this bad, we could go. I agreed, because our situation is a little different than most. You see, when you're dealing with someone who's chronically ill like my husband is, you learn that you can't jump at every little bump and bruise and "bad feeling". If we did that, we'd be on a first-name basis with the ER staff.

     I'm discovering that this is yet another level of trust between the two of us that we're slowing building up. I would be completely incoherent if I lost him and my greatest fear is that I'm going to before we ever get a chance to build a life together. So why would I even hesitate when he tells me things like he can't breathe properly? Well, because he knows his body better than me and he knows what the Marfan's does to it better than me. He also knows just exactly what would happen if I lost him and would never in a million years risk leaving me alone like that. I know this and because I do, I'm able to trust him when he tells me that no, we don't need to go anywhere just yet.

     By this point, he'd started to tick a little louder, but he and I both knew that was happening because he was freaking himself out. Really, knowing what tricks your head is capable of pulling on you is half the battle in situations like his, because you've got to learn not to jump at every little thing. That's no way to live your life, running to the nearest hospital every time there's an unidentifiable twinge. Or maybe it is for some, but not for my husband and consequently, not for us. It's a daily fight not to let this damn disorder take over our lives, rule them and run them into the ground, and this is how we've decided to manage part of it.

     Sure enough, he eventually decided to try and lay back down and see if sleep would come, since the tightness was getting no worse. I lay down next to him, pulled the covers up and reached for his hand, so he would know that I was right there, ready to go should he need/want to. It was past two in the morning by this point and sleep came surprisingly easy for both of us, yet another indicator that this was simply a routine event in our lives and would not be given any more significance than that. What I need to figure out now is whether or not that's a good thing...

Saturday, April 9, 2011

Words, Don't Fail Me Now

     I started this blog thinking mostly of myself and the people like me. As I've said before, "people like me" is a an all-encompassing term I use to describe the partners of people with Marfan's Syndrome and similar degenerative disorders. Of course I was thinking of my husband as well, since he's the reason for all this, but when it comes down to it, this isn't a blog for or about him.

     Though I started it with a vague idea of what I hoped to accomplish and an obvious subject matter, it had no structure, no storyline that must be adhered to. I still don't have a plan in my head when I sit down at my computer, no rough draft of that day's entry. I write what comes to me as I/we experience it and the vast majority of the time, I have no idea what I'm actually going to end up saying about a given subject. It just comes out.

     As I move deeper into this labor of love, though, I'm beginning to realize how many people are going to be directly affected by what I commit to paper. (Yes, I'm aware it's not really paper, but work with me on this one, okay?) The people who populated my husband's life before I came into it, his parents, his sister, his best friend and his wife, who's also a much-loved friend to us, all these people have been around him much longer than I have.

     I'm starting to see that they way in which they dealt, or didn't deal with, his illness has affected how we as a couple deal with it now. I feel a little stupid not to have realized before now that in order to work out how I feel about all this and figure out how we're going to continue to work our way through the Marfan's stuff during the rest of our life together, I have to look at his past.

     The real hell of it is, I always assumed that when I got married, it would be to someone local. I don't necessarily mean someone from my small hometown south of St. Louis, but someone at least from the area. If I felt like getting really exotic with my choice of husband, I could always go to Illinois and find someone. I suppose I also assumed that I would marry someone around my own age, too. Yeah, neither of those things happened.

      I ended up married to a man more than a decade my senior and born and raised halfway across the country. We belong to two different generations and sometimes, I feel that his past, especially the important years, are a big question mark to me. I wasn't there, I'm not of the same age, and all his close friends are back in North Carolina, where I'm not able to meet them and get to know that part of my husband. Hell, I've only gotten to meet my father-in-law one time and that was on the day I married his son.

     Yeah, great, but what's this got to do with Marfan's? Well, in order to understand why my husband makes the choices he does now regarding his health, I have to try and see where he's coming from. I want to explore his relationships with these key people in his life with regards to his disorder. The picture that's slowing emerging in little bits and pieces is one that I think is going to make me sad for him, but I'm trying not to think that just yet. I don't have all the info yet, so there's no point in trying to speculate. I just hope that I can make it clear that, while I may not understand why things went down the way they did, I am grateful that they did happen in just that way.

     I am a huge believer that every damn thing happens as it's meant to and again, while I may not agree with the choices that were made long before I ever came on the scene, I'm so glad they did because that's part of what made my husband who he is today. That's what I really need to make clear to everyone who may turn up, in some fashion or other, in an entry somewhere along the line. In trying to manage my way through our life together, I've got to figure out what happened before me so I know which steps to take.

     So I say this to anyone who's reading and may recognize themselves in my words: Thank you, from the bottom of my heart, for doing exactly what you did, because you helped him become who he is, the love of my life. I know it's incredibly difficult to know exactly what to do with a son, brother, friend, or whatever he is to you, who is sick like him. Nine times out of ten, I still have no idea if what I'm doing is the right thing.

     I have to keep trying to find the best way, much more for him than for me, because I want to be the best wife and support system I possibly can for my husband. In order to do that, I'm going to keep talking to him about it, try to fill in the holes. Please, please understand that I'm just trying to work this out in my head and maybe help out the ones who are like me in the process.

Wednesday, April 6, 2011

Rockin' the Google

     I'm having a really hard time containing my excitement right now. Honestly, I'm kind of amazed that the excess energy isn't flowing from my fingertips and burning right through my keyboard as I type. I stopped at the convenience store on my way home from work and as I parked, I noticed that I had a missed call on my cell. I saw that it was from my husband, so I immediately called him back. He had a follow-up appointment today with his optometrist regarding last week's bleeding, so I wanted to make sure all was well. As it turns out, all was very, very well and it didn't have anything to do with his eyeballs.

     My lovely, wonderful, supportive husband was calling to tell me that when he typed the phrase "Marfan spouse" into Google, the search engine now not only brought up results, it brought up MY POSTS ON THIS VERY BLOG! I can't even begin to express how that makes me feel, to know that my words are out there in the great wide world, tangible, and someone is reading them. Hopefully, someone is relating to them and finding some sort of comfort or at least a type of distant kinship in knowing that they're not alone. Hopefully, I'm helping someone just a little bit.

     I know, I know, I know. A few results on Google does not a life-changing moment make - for most. Not so in this case, though. If you scroll back to my initial blog entry, I mentioned that one of the things that made me want to start writing about my life as a Marfan's spouse was the fact that I used that term to search Google and came up with exactly nothing. Not a damn thing. Now, a mere three months later, someone in any part of the globe can enter that search term and I know that it won't leave them empty-handed and frustrated as it did me. I know that I've begun to build something here that will help, in however small a way.

     Not that I was getting discouraged, by any means, but the fact that I'm actually beginning to have a tiny, miniscule, microscopic presence on the great wide interwebs makes me want to sing. No, really. If I were anywhere near a hill right now, I'd be all Julie-Andrews-in-Sound-of-Music so fast it's not even funny. and the fact that my husband is so supportive of this is just the icing on the damn cake. It was so difficult for him at first, to try and reconcile his pride in what I was doing with his intense need for privacy about the Marfan's. That mindset is beginning to change, though, every time I make a post. I think it really started to click for him when he realized that this blog is NOT about him; it's about MEEEEEEEEEE!!!!

     No, in all seriousness, I really do write for myself and others in my position, that position being partnered to someone born with Marfan's Syndrome. I'm working to create a space for us, our own little corner of the virtual world and this is just the positive reinforcement I need sometimes. I like to believe that I'll keep going even if no one looks at my words but me, but I can't say for sure that that's true. I want to help, I want to give a voice to those who don't know how to say what's in their heads, their hearts, the dark places in their thoughts that they'd rather not examine. That's okay, I know it's scary. I know what that feels like and that's why I want to be the one to do it for them, if I can. I won't always have the right words, but I'll try my best to find them.

   

Tuesday, April 5, 2011

Heads Explode

     There's not a couple alive that hasn't gotten into a knock-down, drag-out fight at some point in their relationship and my husband and I are no different. It doesn't happen often, but cohabitation is one of the hardest skills either of us has ever had to try and master. Every so often, it just doesn't go well and spontaneous combustion occurs. That's exactly what happened to us over the weekend.

     It doesn't matter what we fought about; that's irrelevant. It's not even the emotional aspect of it, the what's-the-deeper-issue-here-and-how-should-we-attempt-to-fix-it part of it. We as a couple can look back on it at a later date and try to sort out what the underlying issues were that caused the blow-up in the first place; that's not what I'm worried about. The part that's been weighing on my mind is the part most people don't even think about - the physical.

     About a month ago, I was discussing my husband's disorder with a co-worker and mentioned that I thought he shouldn't really be doing anything that significantly increases his heart rate/ blood pressure. The response to that statement was, "Well, yeah, but there are so many things that can increase his heart rate." Yeah, I know. I'm afraid of all of them, afraid that some tiny little thing is going to cause my life as I know it to come to a screaming, crying halt.

     So I watch him like a hawk when I'm at work with him, try to count the number of times he climbs the stairs in an hour, try to judge to weight of whatever box he's carrying to determine if it's too heavy for him to be carting about. On days that I'm off and he's not, our friend Rose keeps an eye on him for me and reminds him not to overexert himself.

     I know full well my husband's not stupid and wouldn't try to push himself intentionally. There are times, though, when his heart rate moves into the area of not-okay that most people don't even think about. Hell, I STILL don't think about it and I've been living with him and the Marfan's (because it's very much its own entity) for the past year and a half!

     I wasn't thinking about it at all this past weekend when our tempers starting butting up against one another and if I were to be completely honest, I'd have to admit that I never think about it when we're arguing. In my defense, though, I would guess that the vast majority of people never give a thought to silly little things like blood pressure when they're in the heat of the moment. After the heat's gone, though, I think about it a lot.

     Allow me to be overdramatic and fatalistic for just one moment while I envision making that godawful phone call to my husband's best friend back in North Carolina to tell him that my husband is in emergency surgery to try and close the aortic tear that showed up after we went a round. Would I be responsible for killing the love of my life? Or would it be his own fault for allowing his temper to get the better of him, knowing full well what could happen? And yes, I know, this seems so far-fetched to most people, even those in the Marfan's community. I have to entertain the thought, though, because somewhere in the back of my head, I know there's a miniscule chance that it could happen.

     God, can you even imagine what it would be like if that happened to someone you love? I know everyone has seen a movie or a TV show that features a character who keels over dead from a heart attack, just out of the blue. Hell, my own grandfather died of a massive heart attack and all he did to incite it was get out of bed one morning. My point is that the heart is the trickiest of creatures on its best day and when you're dealing with something like Marfan's Syndrome, it's best not to push your luck.

     So now I've come full circle in this particular thought train and come back around to, "Should I just let more things slide in order to keep the disagreements fewer and farther between than they are right now?" Especially since my husband's temper is of the flash-and-burn variety, whereas mine is more controlled, though  I can seethe and hold a grudge like nobody's business.

      Is that better in the long run, to keep his blood pressure from spiking, for however brief a time? I can't help but wonder, though, am I on my way to losing myself as a wife, as a person, as the girl he fell in love with, if I shove my needs and frustrations into a corner, for the sake of trying to prevent something that likely won't happen? Then again, what if...

     I don't want to make that call to North Carolina.

Saturday, April 2, 2011

The Light of Day

     A few days ago, I did something that I really hadn't envisioned myself doing when I first started this blog - I made it known. Yes, I know, it was already on the internet and therefore completely public, but it was really only there for the people who knew where to look. In this case, that number was very, very small. After spending the last three months rolling this idea around in my head, though, I realized that I wasn't doing anybody (except myself) any good by keeping this blog essentially hidden in my little corner of the web. I was defeating the whole point of writing this in the first place.

     I started this blog with the idea of eventually creating a safe place where people in my position can come and vent and find companionship while trying to navigate the waters of being partnered to someone with a chronic illness, specifically Marfan's Syndrome. It's a whole different piece of the relationship puzzle that the vast majority of the population will never deal with and don't know how to relate to. I know that I myself don't have any friends or even acquaintances with whom I can discuss this particular aspect of my marriage and I doubt very seriously that I am the only one to find herself in this position.

      If I'm being completely truthful, I didn't really think about the Marfan's until after we were engaged. While I knew from pretty much Day One that I was meant to be with my husband, it wasn't until we'd decided to make it official that I really began to think about what kind of life we were going to have together. Ridiculously happy, sure.

     But all the little trials that every couple faces throughout their years together would be just a little bit harder because of his disorder. And then I had to take into account all the trials that we would face that would be unique to us as a couple. Needless to say, it was a lot to take in and a lot to think about. The gears in my head started turning like you would not believe.

     I wanted to do something, to help in some way. By the time we were married, I'd already read as much as I could find on Marfan's Syndrome itself and had a fairly good understanding of what it was and what it could do to the body. It was during those initial research marathons that I began to realize that there was nothing out there for people in my position.

      I mean, there's precious little concerning the disorder itself, so imagine what's there to help those in love with someone who's affected by the disorder. That's when it clicked in my head as to what I could do to help. I'm not a medical person; I can't find a cure for Marfan's. I'm not good at schmoozing, so fundraising isn't really my forte, either. But by God I can write.

     I've kept a journal since I was fourteen and I've always been very good at any English or lit-type classes. The words are my friends, whereas numbers are the devil. It dawned on me that if I made my thoughts public, instead of just getting them out of my head and onto paper, where it benefited no one but myself, THAT could be my contribution.

     It's a very small contribution, I know, but I've always loved the Emily Dickinson sonnet that opens with, "If I can stop one heart from breaking, I shall not live in vain." That line, that idea, that if I can just make one life better, then I will have succeeded in life, has always struck me so hard. I really, truly believe that philosophy with everything I have and so I took it and ran with it.

     So I started writing, out loud and in public, with the hope that someone somewhere will find my writings and it will click with them, will perfectly verbalize what they're feeling but don't know how to say. That's been my hope all along and I just now got the courage to put myself out there just a bit more. By "a bit more" I mean that I linked this blog to my Facebook page, because everyone knows that in this day and age, if it's not on Facebook, it's not real. (I kid, but only a little. Sorta. Kinda.)

     I'm slowly putting myself out there, bit by bit, because at the heart of the matter, it's not for me. It's about me, yes, and about what my experiences are as the wife of a Marfan's person. This blog, though, is for everyone else who's in my position and wishes there was someone who got it. This is my small contribution to the world, so that hopefully, I shall not live in vain.