Saturday, October 20, 2012

Move Along

     I did it. I'm here in Charlotte and so far, I'm definitely a fan. I love the neighborhood that we live in and the house is coming along nicely, though I'm pretty sure that I'm going to have to start embracing white walls, because this painting nonsense is for the birds. I'm still hesitant to drive around by myself because I have such a lousy sense of direction, but it's cool - I have Domino's to keep me from starving and every episode of Buffy the Vampire Slayer on DVD to keep me entertained. See how resourceful I can be? I even have a job interview scheduled for Tuesday, so I might be done with this unemployed business sooner than I thought. Though I've been here all of a week, Charlotte is definitely playing nicer than St. Louis so far.

     My husband's doing so well at his new job and the newish pain management regiment is still working. He was taking three methadone every day with a supply of Dilaudid as back-up for breakthrough pain, but recently he's switched over to a pretty new drug that neither of us had ever heard of. It's called Nucynta, which is the brand name for tapentadol. It's actually in the same class of drugs as the methadone, an opiate analgesic, but supposedly the Nucynta plays nicer with my husband's blood thinners, hence the switch. It's only day three of this, so we'll see what happens. I'm sure if it doesn't work as well, he can go back to the methadone, as he never experienced any ill effects while he was taking it.

     All this newness/goodness that's made its home in our lives recently got me thinking about my husband's disorder and the role it plays in our marriage. Specifically, I started thinking about the way I view it. I know there are people who may disagree with this, but I tend to view the Marfan's Syndrome as the third person in my relationship, always have. I'm not alone in this, because I know my husband sees it the same way. We've talked it to death on more occasions than I care to remember, but we always circle around to the same truth - his disorder takes up way more space in our lives than we'd like it to, but neither of us knows how to minimize it.

     God knows we try. After three years together, we're at least to the point now where we're comfortable not talking every little hospital or doctor's visit to death, because we know it's unnecessary.  Likewise, we generally only share medical news with friends and family if it's something out of the ordinary or serious, like a hospitalization. It's become such a part of our lives that to do otherwise would require a large amount of time to update everyone when it's just not needed.

     Aside from that, though, I will be the first to admit that it's tough not to take the Marfan's into account whenever a large-ish decision needs to be made. Move to Charlotte? We had the usual considerations that everyone has, such as cost of living and would I be able to find a job. The added ones, though, such as would we be able to find a doctor in Charlotte that knew what Marfan's was and could treat it as well as his physicians in St. Louis, were things that many people don't have to worry about. New city? Just run down the list of doctors on WebMD until you find one who's accepting new patients, right? Not so much, in our case.

     I feel, though, that this is the perfect time to turn the page, if you will, in my book o' living. If moving away from the only home I've ever had isn't incentive to begin a new chapter, then nothing is. It's been brought to my attention that the title of this blog is somewhat...I don't even know the right word. "Offensive" isn't it, because nobody's offended by it, per se. The feedback I've gotten, though, is that it makes it seem like I'm married to the disorder itself and my husband as a person just happens to be attached to it. While not my intention, I won't lie and say that it's never felt something like that before.

     Without getting too high up on my soapbox, it's key to remember that the whole point of and inspiration for this blog is to provide some kind of support or venting place for the ones who are like me - partnered with people who will likely never be well, specifically those born with Marfan's Syndrome. Therefore, this place first and foremost belongs to me and to them. I want to be as honest as possible at all times with what I write, because it was the lack of honesty in any support group writings that I was able to find that ultimately pushed me to do this. I stand by that goal and will always do my damndest to stay true to what I'm feeling, rather than tempering it because it might not be the most optimistic way of phrasing it.

     I should also point that, though there's no way anyone could have known this, my husband and I talked about this blog and the title it bears for quite some time before I actually went live with it. He knows why it's titled such and agrees, because there are days when he too feels that he has to pay more attention to his disorder than to me, his flesh-and-blood wife. That right there is the reality of living with something like Marfan's Syndrome. It's not pretty, it's not happy and it's sure as hell not ideal, but it's THERE. To ignore it is not an option and so what we've decided to do is stand our ground, together, and face the bitch head-on.

     That said, I go back to the above opinion that the times, they are a-changin', and it's time for something new. I'm going to be starting the (slow, I'm pretty sure) process of moving this whole operation over to a different platform. I still have to do a bit of research and decide exactly how I want to set it up, but change is coming. Part of that change is going to be a new name, because after mulling it over, "Married to Marfan's" doesn't really seem to fit anymore. I mean, there are still occasions when it's appropriate, but they're getting fewer and further between.

     I'm hopeful, for the first time in a long time. It's an odd feeling, one that I don't completely trust. A big part of my heart (and my head, for that matter) is still dead-set on thinking that such a thing has no place here. It does, though, I'm fairly certain. I say that now with confidence, not with the desperation of trying to make myself believe it's true. For a long time, it was one of those things where if I repeated it enough, I'd start to believe it, or so I thought. It never worked, though, until now. This time, when I say I'm hopeful, it's because I feel it. I don't have to talk myself into it, because even though it's still small, it's presence is absolute.


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