Monday, September 26, 2011

When the Levee Breaks

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

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

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

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

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

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

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

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

Tuesday, September 20, 2011

Harder to Breathe

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

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

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

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

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

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

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

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

Wednesday, September 7, 2011


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

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

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

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

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

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

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