Wednesday, February 22, 2012

Bet You Never Thought

     I'm someone who really doesn't like being taken by surprise. It bothers me when I'm caught unprepared because then someone else might get the upper hand in a given situation. I like to turn every possible option over in my head, run through several different scenarios, things like that. That way, I feel like I have a pretty good chance of knowing how things are going to turn out. Now, I'm not stupid or delusional - I know damn good and well there are things in life that I could never prepare for and sometimes, despite my best-laid plans, things are going to go off the rails anyway. It happens. But dammit, it feels like even more of a sucker-punch when it comes from a completely innocuous corner of left field.

     I called my dad the other day for some reason which I can't even remember now and was informed that my grandmother, while hospitalized for something else, had been diagnosed with an aortic aneurysm. What.The.Fuck. I hadn't even known she was in the hospital in the first place due to the fact that my dad's side of the family tends to downplay any medical issues to the point of borderline laissez-faireness, which doesn't really work for me. My grandma, especially, is the poster girl for "It's only a flesh wound," while she's bleeding profusely. I don't mean that to be harsh or condescending of her nature - it's not. I'm just trying to paint a picture here of the scenario I unwittingly walked into with a phone call.

     So Daddy tells me she's in the hospital and that it was discovered that not only did Grandma have an aortic aneurysm (hello, my arch nemesis), but that she'd already suffered one mild heart attach and hadn't even known it. Again I say, What.The.Fuck. How in the hell does someone have a HEART ATTACK and not realize what just happened?!?! I guess if it was small enough, though, she could've easily mistaken it for heartburn or something, instead of recognizing it for what it was. Honestly, though, the heart attack wasn't what scared me. If you've spent any amount of time reading this blog, you know by now that one of the things I fear in life above all others is the dreaded aortic aneurysm.

     The thing is, though, that  I've been living in fear of one showing up in my husband's aortic landscape and I never gave a second thought to the possibility that one could make itself at home in another loved one. Even though I know they're not technically a Marfan's-specific thing and that anyone anywhere can suffer one, I can't help but assign that medical danger exclusively to my husband. It's the thing I fear the most, the thing that lives in the corners of my brain. I've tormented myself reading about them - what happens, what's the survival rate, how does it feel when one ruptures. I can't shake this horrible image of my husband doubling over in pain one day and bleeding out right in front of me, before I can do anything more than beg him to hold on, help's coming. I haven't been able to get rid of that image for two and a half years.

     Now the thing that I dread has come to pass, kind of. Sort of. I wasn't looking for it to happen to someone else in the family and that was rather egotistical and short-sighted of me. I can get so caught up in the Marfan's bubble that I don't give as much thought as I should to the rest of my family. I mean, yeah, I have a lot more on my healthcare plate than the average person and my husband's care has to take precedence. Grandma's in her eighties, though, and I should've known that this was a possibility, given her family history. It makes me feel a bit selfish and elitist, truth be told, when I realize that I've missed out on some important events like this one that I feel I should've anticipated better.

     I suppose that's why it's called a sucker-punch, though, because you're not looking for it. As I said, I'm sure there were context clues that something like this was probably coming, had I chosen to look for them. Why, though? What difference would it have made? I couldn't have prevented it and in this case, it's not like it was a catastrophe. Grandma was released from the hospital the next day and the doctor apparently said it's fine, that the aneurysm will continue to be monitored and if they have to do further treatment later, they will. That opinion doesn't sit quite right with me, but hey, I'm not the doctor. My grandma's one of the smartest people I've ever known and I'm sure that if she's not comfortable with that advice, she'll get a second opinion. She's clever that way.



Monday, February 6, 2012

We're In This Together

     I did that thing yesterday where I sign into this blog and look to see how many hits I've gotten in the past twenty-four hours and how people found me. It's always interesting to see that people in Russia or Malaysia have been reading what I wrote, or that they somehow got to my blog from a strange travel-advice website. Such are the mysteries of the interwebs, I suppose. There's one bit of information I look at before any other, though, and that's the keywords and search phrases people have used in search engines that then led them to Married to Marfan's. Most of the time, I find things that are pretty typical, i.e. Marfan marriage. Once in awhile, I'll find something that breaks my cynical little heart and those days are harder than most. Occasionally, though, I'll get something that gets the gears in my head spinning faster than they usually are, which is what happened today.

     As it turns out, if you type the phrase "I love someone with Marfan's", one of this blog's entries pops up at the top of the second page. It doesn't surprise me that much, given that Marfan's is still considered a rare disorder. Really, how many websites can there possibly be devoted to the topic? There are even fewer dedicated to those of us who love Mafan's kids, so it it makes sense that you'd end up here as a result of a casual search. Believe me, there's nobody more pleased about this than me, considering the fact that the people like me were my target audience when I started this blog. They're exactly who I needed to find, so it would appear that my cunning plan worked out. I love it when that happens.

     It seems, though, that I'm actually a little conflicted about this, the finding of my blog by another one in my position. (Believe me, I get as annoyed as you do by the fact that I'm apparently unable to not overthink every damn thing.) I'm always pleased when someone who's trying to deal with living with a partner born with Marfan's Syndrome finds my ramblings because I like to believe that something I write will trip something in their head and they'll be able to take something good away from here. That's kind of the point, you know? That said, I think I talk about what it's like to be married to someone who's chronically ill from a more honest perspective than a lot of other writers. Actually, that's phrasing what I try to do in a more socially acceptable form and that's exactly what I hate. What I really try to do is talk about every single aspect of living with Marfan's Syndrome, including and maybe especially, the ugliest parts.

     One of the biggest problems I have and my biggest motivator in making my writing public instead of just keeping it in my journal is the fact that so few people are willing to talk about the flat truth of being partnered to a sick person. It's a messy, angry, bitter business some days and no one really wants to hear that. All I can ever find is news about the latest fun-filled fundraiser or how much fun was had at the most recent support group. The pictures are all so brightly colored and smiling, even the ones that show people who are currently occupying hospital rooms. I don't understand this mentality that seems to say, "Look! It's not that bad! If we all just keep things as glossy as possible while only hinting at the difficulties you're going to face, it'll be just fine." Um, disagree.

     That's the part of it that makes me happy someone who's (seemingly) in my position found my blog - because I believe I can provide a balance for the shiny, happy blogs that are, truthfully, much more visible than mine. I'm not doom-and-gloom girl, but I'm damn well going to say exactly what's going on in my home and in my head. Sometimes what's going on is really unpleasant, but sometimes it's a damn good day, like when my husband goes for his annual check-up with the cardiologist and gets a (relatively) good report card. I'd like to believe that I have a fairly balanced mix of the good, the bad and the ugly, but I'm not reading this from the outside. I would just hate for someone to come across my blog and randomly pick an entry written on a bad day and think, "Oh, shit. I can't do this, I gotta get out." That's something I'm always a little bit afraid of.

     I want whoever it was that found this, if they stayed long enough to read anything, to have understood that while I think it sucks on an incredibly large scale that the love of my life will never be healthy, it's alright as long as we stick together. I'm not trying to go all Pollyanna here, but that's what I have to believe. Underneath all my bitching, I really do believe that we're going to be okay in the end. It's going to get worse before it smooths out, I'm pretty damn sure, but it's manageable. As I've said before, we have plenty of sunshinebunnyfoofoorainbowkitten days; they're just mixed in with the days that make both of us want to rip our hair out in bloody chunks. Hell of a note to end it on, huh?

Friday, February 3, 2012

Lord, Lord Help Me Just to Rock, Rock On

     It's really painful to watch my husband stagger into the bedroom gasping because his muscles are twisting in on themselves so tightly he can barely move his chest to breathe. I hate it so much, knowing there's nothing I can do to alleviate what he's feeling. I usually stand there and try to assess how bad this one is, whether we need to go to the emergency room or if it's one that will fade eventually, so long as he calls in to work and stays mostly immobile throughout the day. Every so often, I'll do something useless and stupid like try and massage the hardened knots of muscle with my ridiculously small, weak fingers. It never helps and even my husband telling me, "It was a good thought, though," does nothing to make me feel less stupid for trying something so completely ineffective.

     It happened again last Monday, the day after I posted Celebration Day. Most times, I would roll my eyes at the irony of it, my husband ending up in the ER with the worst back spasm he's had in months mere hours after I make public my celebratory blatherings. That's funny, right? Comedic, even. I can't do it this time; I just don't have it left in me. I really, really hate to come across as defeatist, because that's not exactly what's going on here. I'm not defeated by my husband's disorder, nor do I ever see myself being in that position. I am, however, having a very difficult time at the moment not pulling my hair out in frustration. The past two months have been the epitome of the phrase, "One step forward, two steps back," only it's, like, eighteen and a half steps back.

     I was so pleased that my husband had made it through a full week of work for the first time in a month. He was proud of himself and it was a tiny bit of confidence restored to someone who was doubting himself in a big way. And then he took a shower and it all went to hell again. I know, again with the negativity, but dammit, this is some negative shit we're dealing with here. One of the things that I find lacking in most books/blogs/articles about living with chronic illness is a disturbing lack of frankness and a whitewashing of any bad emotions. I can't even justify these findings with saying that perhaps I haven't looked hard enough, because that's a damn lie - I have. (That right there, though, is an entire post (or four) all by itself and so I'm not going to dive into it at 10:53 at night. To continue...)

     There are a lot of bad feelings that are brought quickly and efficiently to the surface when you marry someone with a chronic, debilitating disorder like Marfan's Syndrome. I've always believed that not addressing whatever's going on under the skin will result in nothing but a nasty, festering mess, so that's what I'm doing here. Maybe someone will know what I'm talking about, maybe they won't and I'm just running my mouth (such as it is) to nobody. I'm hopeful that it's the former, though if it does turn out to be the latter, I'll accept it. Even if it's to an audience of nobody, keeping up the chatter on here allows it to quiet in my head for awhile and that's a much-needed reprieve.

     When I say that this was one of the worst back spasms he's had in months, I'm not exaggerating. My husband's shoulder blades were pulled so tightly together by the cramping muscles that I couldn't have slid a piece of paper between them had I tried. They were damn near overlapping, it was so bad. Per our routine, I dropped him off at the emergency room on my way to work to be loaded up with painkillers and waited for him to call me to say he could go home. Luckily, (relative term here) the ER doctor was one my husband has had before and he recognized him. My husband was simultaneously glad that he didn't have to explain the whole Marfan's thing yet again and saddened that he was clearly beginning to rack up frequent flyer miles in the emergency room. It's not really something that one aspires to.

     Regardless, the recognition is probably what led to him being released in record time, so I'm grateful for that, I guess. Three days later, despite the oxycodone prescription his back still hurt, so there's that. Again, apologies for the negativity I'm putting out in the universe at the moment, but I get to do that every so often. My way of going about things is to be as realistic about my life as possible, what it is and isn't, and that means that every so often, I get overwhelmed. It's like being mired down in tar and every time you lunge towards the edge of the muck, you realize you've actually sunken yourself just thatmuch further into the with the effort you just made. It blows.

     That said, I know I'll get past this because that's what I do. More accurately, we will get past this. If I have to carry a bit more than my fair share to get us past the current bend in the road, then so be it. Right now, I'm willing to carry the whole damn thing if I can just get us on the right path again. I'm so sick of the one we seem to be trapped on and I know how weary my husband is as well. I don't have a plan, other than my standard head up, eyes forward and keep it moving. It's worked well enough for twenty-seven years, so it's going to have to keep working until or unless I think of something better.