Wednesday, March 30, 2011

Like Repairing the Holes in Swiss Cheese

     It's official -  my husband can now say that he missed work due to bleeding from his eyeballs. No, really, he can. He had another hemorrhage in his eye, the same eye as two weeks ago. This one was a bit different, though. Last time, it was apparently just a weak(er) spot in the eye and he overexerted himself in some fashion, thus causing a bloody, bulging spot.That was unpleasant all on its own, but now he's hemorrhaging in multiple places within the eye. Sigh.

     Four years ago, he had some work done to repair weak spots in both eyes. This was done independently of the whole lens-replacement extravaganza that took place almost a decade ago. Basically, a laser was used to try and shore up the weak spots that aren't there in a normal person's eyes. That's been fine and dandy up til now, when he's all of a sudden sprung a leak. According to the eye doctor, he's bleeding from the patched areas and they're not quite sure why. (And Lord, do I get sick of that phrase, "We're not quite sure why...").

     For now, the solution is to simply let it ride. My husband will go back to the doctor next week so they can continue to monitor the situation and make a determination as to what, if anything, will be done to correct the problem. The wait-and-see approach is exasperating, no doubt, but it's the path that we've been told we have to take, unfortunately. It's not that I think the doctors could be doing something differently or that they're withholding information or anything like that, it's just the nature of the Marfan's beast.

     So often with disorders like his, there's just not enough information to draw from to make a definitive move in either direction. It's not like cancer, where there are set levels of severity and you do A, B, or C to treat it, depending on what stage in the game you're at. Marfan's affects each person differently and there is no timeline to follow. We don't know how fast his body is going to fail him or to what degree. Hell, for all we know, it could be as bad now as it's ever going to get. Or he could be wheelchair-bound by Christmas. There's no way to tell.

     This latest adventure got me thinking about treatments and how useful they actually are. In the case of my husband's eyeballs, I couldn't help but wonder if maybe the laser patching that was done four years ago was really just an exercise in futility. Think about it - a laser was used to patch up the weakest spots in  already-weak membranes. So even though the weak spots were essentially replaced with a strong patch, what was that patch attached to? Membranes that weren't quite as weak as the bad spots, but would eventually deteriorate into the same condition, thus causing a hole around the patch. Um, what?

     Do you see what I'm getting at? In my weakest times, I can't help but think that it's all just an exercise in futility, because no matter what the doctors do, they're simply patching the weak spots. Nothing will ever be truly fixed, because the foundation upon which they're trying to build is no good. It makes me think of someone trying to build a house upon the sand; it's never going to last, because there's nothing solid and good underneath. Some would say I'm being fatalistic and unnecessarily negative by looking at the situation in such a light, but I say I'm being realistic. I think it's important to understand and accept what is, instead of wishing or hoping for what can't be.

Monday, March 21, 2011

Leafy Greens and Other Life-Threatening Items Available At Your Local Grocer

     We've just started following Weight Watchers, my husband and I. I thought it would be a good way for both of us to lose some extra poundage, since it's not really a traditional diet and it's super-easy to follow. I've done it before and liked it, so I thought I'd try introducing my husband to a healthier way of eating. We could be each other's support during the tough, I-want-a-cookie-NOW-dammit! times, plan our meals together and basically turn ourselves into that happy, laughing couple on the front of the healthy-people magazines, right? Well, that's what we're going for, but getting there is apparently going to be a bit trickier than either of us anticipated.

     I've known from the beginning of our relationship that vitamin K, commonly found in things like spinach, green tea, and kelp, is pretty much the devil to someone who has a heart condition similar to the one my husband has. He's on a daily dose of wafarin (otherwise known as Coumadin) to keep his blood thinner than the average person's so it doesn't clot up around his titanium aortic valve.

     Vitamin K does the exact opposite of that, acting as a coagulent and keeping people from bleeding out during  tonsillectomies and the like. So why is this an issue now, you ask? Why are we all of a sudden so concerned with our not-as-svelte-as-we'd like-them figures? The answer is simple - because I'm tired of being a chunky monkey and his jeans are too tight, that's why.

    No, in all seriousness, neither one of us have the healthiest diet. I eat salt like it's going out of style and he's got every reason in the world to not carry around any more weight than is necessary. That's why subsisting on fast food and take-out has got to come to a screeching halt. Most people don't even think about it when they switch from Jack in the Box over to salads, healthy wraps and things of that nature. Making a change in your eating habits? Green things are usually the first and foremost item to be added in on a heavy rotation.

     It's not that easy for someone living with Marfan's Syndrome (or their significant other!). It becomes a challenge of far greater proportions than most face when embarking on a lifestyle change of this nature because in addition to re-vamping your cupboard and the way you shop at the grocery store, you also have to figure out how to get healthy and get the nutrients you need WITHOUT a big part of a dieter's arsenal.

     I know, what my husband and I are doing isn't so much a diet as a lifestyle change, but you get the point. My options are to either get creative and figure out how we're going to do this minus lots of green stuff, or buy two different grocery lists. The latter option is less than appealing, as I don't like to A) grocery shop or B) cook one meal, let alone two. I'm currently researching just how much Vitamin K he can consume safely and what, if anything, can be done to adjust his warfarin around it. Research skills, don't fail me now...

Friday, March 18, 2011

Aaaaand Exhale

     Actually, that wasn't as bad as I thought. When I last wrote, it was about a subject that lives not-so-quietly in my head, afraid to be seen by anyone outside of my head. That puts a lot of pressure on me, to find a way to be okay with the thoughts that I sometimes wish I didn't have. Even now, having discussed it with my husband and putting the words out there for all to see, I'm still not one-hundred-percent okay with it.

     Some part of me still feels mean and ugly for sometimes wishing that things could be different with regard to the Marfan's Syndrome. Granted, that part has gotten considerably smaller since airing my (dirty?) laundry and most of me is fine with how I feel about the situation. Talking about it with my husband was instrumental in that, because he is the one person whom I most wanted to keep those thoughts from, lest I make him feel in any way guilty for marrying me. (And that right there is a topic for another day, because WOW, there's a lot of depth to that one.)

     I want to say again, because I think it's another key piece of the whole, that this blog is not for those afflicted by Marfan's Syndrome and similar disorders, nor is it for the parents of; this blog is meant to be a safe place for those of us who are in love with these broken creatures and are trying to figure out how to navigate life together. I speak only for myself when I write, though I suspect there are many more who have thoughts that mirror my own and are possibly too afraid/ashamed to give voice to those thoughts.

     I know that there have been times when I feel frustrated and alone when dealing with my particular brand of married life and while I'm sure every spouse/partner feels that way at one time or another, this is a bit different. With that being said...

     My husband and I talked for awhile about the issue I last addressed, that of me feeling like once in awhile I don't want to have to deal with a chronically sick husband. It's a topic that I never wanted to bring up to him, for a multitude of reasons. I didn't want to reinforce his feelings of guilt for "saddling me with" him and his disorder, I didn't want him to tell me that it was okay, but secretly harbor feelings of resentment towards me, and I didn't want him to take it completely wrong and think that it was a pre-cursor to me eventually telling him, "Sorry, but you're just too damn much work. Gotta go". Okay, that last one was about as likely a scenario as me winning a scholarship to M.I.T, but still. All these possibilities and more were dancing around in my head while I tried for months to figure out how to bring it up.

     Of course when it finally happened, it was much less dramatic than all that. It was a simple conversation before bed when I confessed that sometimes I wanted nothing more than for him to be healthy. That by itself doesn't seem bad at all, because who wouldn't wish perfect health for the one they loved? Makes their life much better, right?

     Well, that's true, but the truth of the matter is that I was loathe to admit that I want a healthy husband for my own selfish reasons. I could lie and say that those reasons don't matter and that's how I got over it, except that I don't believe in lying, to myself or anyone else, and if I did that, it could only hurt my marriage. I believe those reasons DO matter, very much, because a relationship is TWO people, not one and their caretaker.

     I want him to be healthy so I don't feel guilty asking him to put up a new light fixture. Is that how I feel now? Well, yeah, sometimes. Last night was a perfect example. I was scrubbing the tile in the kitchen and asked if he would put up the new fixtures in the bedroom and kitchen. This was not a ridiculously taxing activity, or it wouldn't have been for ninety-nine percent of the population.

     For him, it resulted in an increased heart rate (always dangerous for him), loss of feeling in his arms and excessive sweating. A simple task. As soon as he broke a sweat, I felt awful and tried to get him to stop, but he's rather tenacious at times and wouldn't quit until both fixtures were properly installed. Once again I thought to myself, "Why is everything such a production?" Overly dramatic on my part, yes, but not an inaccurate verbalization of how I felt in that moment.

     I could go on for days with anecdotes similar to that one, but that's not the point. What I'm trying to say here is that I'm becoming more okay with those thoughts that I previously tried to ignore/deny because I've realized that they're valid and NECESSARY in our relationship. My feelings on his illness are just as important as his own and must be addressed.

     For any marriage/committed relationship to be successful, I believe it must be comprised of equal partners whose feelings and troubles are given equal priority when it comes to working through them. Of course, there are going to be times when, because of the Marfan's and its' related fun times that I will have to put myself wholly aside to focus on him and I'm more than willing to do this for him. More than that, I want to do that for him, to be that person for him.

     While the thoughts are still present from time to time and likely always will be, I'm more at peace with them. I think that at first, I was subscribing to the myth that all people dealing with adverse circumstances, such as a chronically ill child or spouse, deal with the hand they're dealt gracefully and are only better for it. I believe that I eventually will be a better person and partner, but that's going to be a long time coming.

     I also believe that that's the norm; it's just that most aren't ready to admit it. The truth of the matter is that yes, a parent is going to think, "I love her, but life would be so much easier if my daughter didn't have MS." A spouse is going to think, "Why can't he just be healthy? It would make things so much simpler." I hope that we can get to a point where it's okay to say it out loud, not just as an anonymous commenter in a forum somewhere. I'm doing the best I can to fulfill my role in getting us there, but I think it's a long road ahead.

Tuesday, March 15, 2011

Deep Breath

     I'm so scared right now. I almost don't want to make this post, because I know what venom could potentially be directed my way as a result. However, I feel the topic is too important to not address. I know there are others out there like me, married to or in partnerships with people who suffer from debilitating disorders. I know that it's difficult enough to talk about the stuff that's "acceptable" to discuss, i.e. how many trips you've taken to the ER lately, how much the co-pays are for his daily meds, things of that nature. There's more to it, though, so damn much more.

     The "much more" are the thoughts that I'm sometimes ashamed of myself for thinking, the ones that nobody would ever say out loud. What I mean to say is that I sometimes wish he were healthy, because then our life together could be easier. Hell, let's take it one step further and just admit that sometimes I wish it because then MY life would be easier. Sometimes, I don't want to have to figure out how to be the breadwinner. I don't want to have to figure out how we're going to be able to purchase a home that's modified for someone in a wheelchair (because he's likely going to end up in one.) I don't want to be told "not tonight" when I want sex because his fused spine is causing him too much discomfort just then. I DON'T WANT TO!!!

    Wow, I feel much better now. I think in this case, admitting to the world that these dark thoughts exist (and not just in the back corners of my brain, they're right there in the forefront some days) is the hardest part. It took long enough for me to admit to myself the truth of the matter, so it's really no surprise that it took even longer to verbalize those thoughts. What finally pushed me off the cliff with regards to my writing was talking to my husband about it last night. I wasn't nervous at all when I broached the topic with him, because I knew he'd understand completely. I knew, somewhere in my heart, that he would and it was so comforting to hear him agree with me and say that he totally gets why I have those thoughts from time to time.

     That support, that unwavering belief in me, is a huge part of what makes us as a pair so great. I don't think many people realize that while it's obvious that I would need to be supportive and strong for my husband, he has to be equally so for me, but in a completely different way. His shows of strength are much less obvious than mine and his support more subtle, but it's every bit as steadfast. I want everyone to know that, how much we support EACH OTHER, because I believe that's really the key to "us". There is so much more to this and I fully intend to dive into it, but right now, I need to get my breath back.

Monday, March 14, 2011

Eyeball Kid

     Another day, another broken something-or-other. Last night, my husband tells me that he suddenly can't see out of his left eye. Or rather, than he can, but that it's like looking through frosted glass - he can see my shape, but nothing else. This qualifies as one of those things that make you go, "Huh?", because that eye is the one that he's had work done on and therefore should be better than his right.

     You see, another common symptom of Marfan's is dislocated lenses in the eyes. This is due to the same root problem of the body's connective tissues being not quite right. In a normal person, the lenses in the eye are held in place by tiny fibers and those tiny fibers are usually all that's needed to keep everything in the proper place. Like so many other things, the same doesn't hold true for someone affected by Marfan's Syndrome. In my husband's case, those tiny fibers weakened to the point that his natural lens began to fall (literally) out of place.

     If left untreated, the falling lens could have caused irreparable damage to his retina, thus resulting in some degree of blindness. Because no one wanted to add blindness, either partial or full, to the mix, the decision was made to go in and vacuum out the lens he was born with before it did more harm than good. It was then replaced with a new prosthetic lens, though that one lives in front of his iris, not behind it like a natural lens would.

      The new placement presented an issue in that it was effectively blocking his eye juices (technical term, that) from flowing as they should to keep the eye properly pressurized. So how to fix that? Drill, baby, drill, right into his iris. This allowed a nice re-routing of the fluids so that they could keep on keepin' on, as it were. And what was he left with at the end of the day? A slightly different-colored eye with a black spot in the iris and the ability to still see out of it, that's what.

     This all happened almost ten years ago. Fast-forward a decade or so to last night, when he mentioned to me that something was not functioning as it should. The first thought was that he'd blown a blood vessel. This is a really common occurrence in our house, so I took a quick look at his eye, fully expecting to find an angry red mark in the white. Instead, I saw that his normally greenish-gray eye was turning brown on the inside of the iris. Um, what?

     When I told him what I saw, he didn't believe me at first. I told him to go look for himself, but of course he couldn't see well enough to know what I was talking about. We decided that since he wasn't in any pain, the best  thing to do would be to sleep on it and see what the morning brought.

     No real improvement, as it turned out and a unexpected new development. At the top of his eyeball was something that looked like a semi-clear bubble. I'd never see something like that pop up before and when I described it, it didn't sound like anything he'd yet experienced, so he decided to call the doctor's office as soon as they opened. When he told them what was happening,  an appointment slot magically opened up! I love when that happens. Our fear was that the prosthetic lens had somehow become detached and was working its way out of his eyeball. (I know, sounds gross, but it's all par for the course with us.) Luckily, this was not the case.

     Apparently, he had had a small hemorrhage in his eye the night before and the pressure of the blood was what had caused his vision to become temporarily obscured. It was also responsible for the odd change in eye color. I feel as though we've dodged a bullet, because he and I were both afraid it was going to be something that required surgery, which is always an undertaking of unpleasant proportions. I'm finding that as we go along, I'm learning more and more about this and similar disorders because there's really no choice but to educate myself.

     I found a page about eye issues related to Marfan's and linked it, just in case anyone else should need it. Check out for more info. (My never-ending search for information is still an exercise in frustration, so I want to share whatever I can, whenever I can.) In all likelihood, the hemorrhage was cause by his blood being too thin, which happens from time to time. Right now, he's running on red Kool-Aid, as we call it, so I'm sure they'll make adjustments to his Coumadin dosage and we'll be good to go...for awhile.

Saturday, March 12, 2011

The Shape He's In

     Remember a couple of weeks ago when I posted an entry titled "Sick Man", about the vacation/sick days question? Yeah, it's reared its ugly head again. My husband and I are planning a trip to North Carolina this fall to visit friends and family (he's from Charlotte, while I was born and raised in St. Louis, MO). I put in my request for time off with our boss this past week and was approved. Yay for that!

     I figured that once we had at least one approval in hand, we'd be good to go, because surely the boss would assume that I would like to take my husband with me on my little sojourn. On the day I got my approval, it just so happened that my husband was home sick. Not from anything Marfan's-related, but from a nasty cold, which is a common enough ailment. I texted him the good news and let him know that he should probably go ahead and put in for his time off when he got back to work the next day.

     When the next morning dawned and he wasn't in any better shape than he'd been in the night before, he decided to stay home again. He had to work that damned second job on Saturday and there was no way he could call in, as it was the restaurant's single busiest day of the year, the day of the city's St. Patrick's Day parade. He'd lose his job there for sure if he was a no-show. No big, like I've said before, our workplace is very understanding of illness and has never given him trouble over this. But as I sat at my desk that day, mapping out flights and rental cars for October, I got to thinking - what kind of time does he have to take?

     I posed that very question to our HR person, and as it turned out, the answer was not good. Prior to the two sick days he'd just called in for, my husband had exactly one and a half sick days and no vacation time. This meant that he now had no time whatsoever to use and was in fact already short a half day. Needless to say, this put a significant damper on my enthusiasm. I did some quick math and figured out that at the rate we accrue paid leave, he could earn enough vacation days by the time we were scheduled to set out for North Carolina IF he took not one more sick day from now until October. Um, not likely.

     So what does this mean for us? Well, in terms of being able to actually go, not much. In all likelihood, he'll still get his time off approved because A) he can technically earn that time before we go and B) our boss isn't heartless and has let him go on unpaid leave in the past for things like our wedding weekend. So it's just a matter of  being able to take the hit that's sure to follow his time off. Can we do that? I don't know, it's going to depend on how this summer progresses, financially speaking. I know he's not going to be able to make it seven months without calling in. Hell, I don't know if he can go that long without being in the hospital. It hasn't happened since we've been together, so...

     It seems like such a small thing and I know there are bigger worries to be faced. I know there are lots of people who struggle daily with disorders far more debilitating than Marfan's. I know all this. However, I am a big believer that no matter what you're dealing with, there is always going to be someone in a worse position and that IN NO WAY invalidates your struggle. I used to work disability cases and I would tell claimants this all the time.

     Many of them felt guilty about applying for disability benefits because they felt that their medical issues were not as severe as some others. Well, yeah! There is ALWAYS someone who's sicker, more broken, or in more dire circumstances than you are in. Does that mean you've got a cakewalk on your hands? Um, no.

     So while the shape he's in is currently holding steady (as steady as it ever is), it doesn't mean that we don't have hurdles down the road. It doesn't mean that those hurdles are ever going to stop coming, because they're not. We'll deal with them as they come and keep moving on, because that's the only thing we can do, the only thing we know to do. 


Saturday, March 5, 2011

Decisions, Decisions

     We've come up against a wall, my husband and I. Currently, he has to work two jobs in order for us to make ends meet semi-comfortably. This two jobs thing has actually been going on for him since longer than we've been together. It started about two years ago, when he split from his ex and picked up a second job waiting tables at night and on the weekends to make some extra cash.

      Then we got together and as it became apparent that we were headed for forever, we decided that he should/ had to keep it if we wanted to get out of the apartment we were occupying at the time and into a house or better apartment (meaning one that had been renovated more recently than 1967.) I'll spare you the rest of the details that got us from there to here, but suffice it to say that we still need the income he gets from waiting those damn tables.

     I know we're not the first family that's had to play this game, not by a long shot. Hell, I myself was working three jobs at once for a time during college to keep my head above water. I was raised to believe that you do what you have to do to get by and you don't bitch overly much about it, because at least you're able to get those jobs and make ends meet. Not everyone is that lucky. And considering that my husband has worked in the food industry, in one way or another, for over twenty years, he didn't really think that much of it at first. Now, though, it's quickly reaching the point where his waiting tables is no longer an option.

     I want to say, before I go any further, that I absolutely detest the fact that he spends every Saturday on his feet, putting stress on his body, a body which is not well-equipped to deal with it. I am not at all opposed to getting a second job myself and in fact did have two jobs for awhile when we first got together. Circumstances at my full-time gig changed so that I was able to quit the part-time job, though lately I've been questioning that decision.

     It's somewhat out of my hands at the moment, though, since I was recently informed that he will work three jobs before he allows me to have two. For anyone who knows me, the thought of someone not "allowing" me to do something is ludicrous, but this is different. There are already issues there because he knows I'm going to have to be the sole provider for the two of us eventually and I just don't have the heart to push him on this right now. Not yet.

     We're reaching the end of this particular road and neither of us is yet prepared to make a decision as to which way to turn next. His body is beginning to fail him and it's taking him longer to recover from his one day of physical labor. And keep in mind that he and his supervisors tailor that physical labor to what he knows he can handle, i.e. no carrying full trays (he makes several trips with individual plates instead), no stocking the bar (he can't handle the heavy cases of liquor), keeping it to one day a week, etc.

      St. Patrick's Day is coming up and that's the single busiest day of the year at the restaurant he works at. It's gotten so hard on him lately that he's considering taking the following Monday off from his full-time job in order to recover from that one day of serving. That's not right, but neither one of us has a solution to the immediate problem.

     The long-term solution that we've come up with is to put me back in school so that I can (hopefully) find something that will, at the very least, allow him to quit his second job. But what to do until then? Everyone knows it takes time to get anywhere with schooling and that's time he doesn't have. He'll be thirty-eight this summer and it's showing. Every time he goes in to the restaurant, we're taking a chance that  he's going to jack something up (Remember that hernia I talked about earlier? Guess where it first made itself known...) that's going to land his ass back in the hospital or cause him to have to call into work from the full-time job.

      They're incredibly patient with employee illness and, as I've said before, have never given him any trouble about calling in sick, but will it be that way forever? How do we get through in the meantime? Yet again, I'm at a complete loss as to what to do. I've never been one to not have at lest a vague idea of how I'm going to get to where I want to be, but now? Uncharted territory for both of us and never a guide when you need one.


Tuesday, March 1, 2011

The Spaces in His Head

     As we were putting away groceries and doing dishes last night, my husband was talking to me about this, that and the other and eventually, the conversation rolled around to his disorder. You have to understand, even though it's such a huge part of our lives, the Marfan's is not something that we discuss with any regularity. It's more just there, like the color of his hair. And when we do talk about it, I'm usually the one that brings it up, not him. So for my husband to actually open that door all on his own, I knew something was on his mind and likely had been for awhile.

     He asked me if I'd done any reading about the depression that's yet another symptom of Marfan's Syndrome and surprisingly enough, I hadn't. That's one aspect that I haven't really heard about in my travels through the internet in search of info. It makes sense, though. I know that many people who suffer from chronic disease and debilitating disorders do suffer from different levels of depression, but I never thought about it with regards to my husband.

     Even with all the knowledge that I've gathered over the past two years or so, this particular issue never popped up on my radar. Maybe because no one wants to talk about it? It seems to me that psychological issues are some of the least-discussed because of their very nature. No one wants to be labeled a head case.

     I wasn't even sure that I should write about this. My husband is already rather sensitive about his disorder and doesn't like to talk about ( or hell, even acknowledge) the fact that he's broken (his term, not mine). This is the reason I don't use his or anyone else's real name on this blog, nor do I provide any identifying details. It's important, though, that I get it out there and figure it out, as much as I can. I know that there are others who live in the same or similar head space as him when it comes to his disorder. I know there's so much that goes on in his head and he only shares the littlest part of it with me. He's trying to protect me, I know, but I wish he'd give me more. I want to help, however I can, even if it's just listening while he gives himself some breathing room.