Wednesday, October 31, 2012

We Gotta Get Out of This Place

     I'd been in Charlotte for a whopping week before the first emergency room visit happened. Half of me is surprised it took that long and the other half still wonders what the hell we were doing there, because my husband's health has been holding so steady for the past few months. I suppose gratitude should have taken the lead in the emotional race, since we were "only" there for an eyeball issue, not a crippling pain in my husband's spine or a random staph infection or something of that nature. No, in this case, he was simply bleeding into his eyeball. No big.

     We'd had big plans for Monday, did my husband and I. We were going to get up early, brush our teeth, shine our shoes and go to the furniture store behemoth that is IKEA. Not having one in St. Louis, this was going to be a fun thing for us and we were going to start the slow process of acquiring the things that people use to make empty houses into homes. Except for, when he woke up, my husband couldn't see anything out of his left eye. Well, that's not entirely accurate - he said it was like trying to look through frosted glass.

     I'm just going to take a moment to edit out a whole lot of irritating bantering back and forth about what the proper course of action should be and tell you, gentle reader, that what the conversation boiled down to was that my husband wanted to go to the ER and I did not. Having spent entirely too much time in them in the relatively short time that my husband and I have been together, I have developed a not-completely-irrational hatred of all things emergency room. The reasons for that hatred are myriad and a post all their own, but one of the biggest reasons I did not want to go last Monday was simply because I was fairly certain that nothing could or would be done to correct my husband's current issue.

     Ultimately, the ER is exactly where we ended up, because there was no better option available to us. Both my husband and I were pretty certain that we knew what was going on, but that succeeded in calming his fears of losing his eye altogether not at all. He's bled into his eye several times before and it's actually not an uncommon thing with Marfan's kids, so I didn't really get why he was freaking out about it this time. Then again, I wasn't the one experiencing life through a frosted-glass window while worrying that this was the big IT, the event which would lead to the doctor telling him that they could no longer patch the eyeball up - it had to go.

     That didn't happen, incidentally. What did happen was a whole lot of nothing, though that's no fault of the hospital staff. In fact, I was ridiculously impressed with the service and care that my husband received at the first North Carolina hospital I'd ever been to. I mean, StL emergency rooms often have a war-zone-like atmosphere that's a challenge to deal with on your best day and borderline impossible any other time. Charlotte, though? Not only was there no waiting to get into an exam room, but there was a lovely concierge to walk us to the aforementioned room! That, and the snack bar in the (apparently unnecessary) waiting area just made my day.

     Awesome first impression aside, this emergency room was really similar to the ones back home in the Midwest in that they couldn't really do a whole lot for such a specific issue. I mean, yeah, the attending physician was able to check the pressure in my husband's eyes and see that it was normal, indicating that his old incision had not opened up and allowed the fluid to drain out. 'Cause, you know, that happens sometimes. Next most likely cause of frosty-glass vision? Bleeding in the eyeball due to a weak spot in the optic tissue allowing the blood to enter through a hole. Icky, but not at all unexpected.

     There was nothing more the ER could do, so they contacted an opthamologist and told my husband to contact him as soon as possible, that he needed to be seen by a specialist. It was at this point that I exercised HUGE restraint in not muttering, "I told you that we should've skipped the ER and just gone to the eye doctor," as I led my half-blind husband back to the car.

     I'm tired of the ER, just as tired of it as my husband is, and I don't want to go there anymore. I don't want to have my plans for the day wrecked by yet another unplanned medical emergency. I don't want to sit there trying to relate the events of what got us there in the first place while the doctor treats me as though I haven't the slightest concept of what I'm speaking about. I DON'T WANT TO, DAMMIT! I'm sure that looks ugly on the page to whoever reads this, but it doesn't look that way to me, nor does it feel ugly - it feels like the truth of a bad situation for all involved.

     We're both so, so tired of the ER, my husband and I. Don't wanna go there anymore, either, so we decided that we're not. I mean, strictly speaking, if he's bleeding internally or appears to be having another mini-stroke, then yeah, full steam ahead to the nearest hospital. But for the things that we've always used it for in the past? Nope.

     The subject came up while we were in the car driving home from the eye doctor's appointment, actually, and we both agreed that there's really nothing more the emergency rooms can do for my husband when it comes to the usual suspects that have traditionally sent him there - pain and eyeball issues. The pain thing is becoming less of an issue since the methadone/Nucynta routine was introduced and even when it does start to go off the rails, he's got a back-up prescription of Dilaudid to get him through until his back calms the fuck down again. That's all the hospital ever did - administer the proper dose of painkiller, albeit through an IV instead of orally. Really, though, you're talking semantics at that point.

    Eyes have to be dealt with by a specialist as well and now we know for certain that there's really nothing that can be done outside of the opthamologist's office, so that's going to be the destination in the future. It's actually kind of a relief, knowing that only in the most extreme of circumstances will the ER be our go-to. We've spent far too much time there and it's a huge drain, both emotionally and financially. Besides, it might be kind of nice to use the ER as most people do - as an occasional thing, not a so-frequently-they-know-us-by-sight thing.

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.


Tuesday, October 9, 2012

She's Leaving Home

     I try to keep this blog on-topic as much as possible, but every so often, I need it for me and what's going on in my head. Which sounds semi-stupid now that I see it typed out, as every-damn-thing I write is something that's going on in my head, but I hope you've read enough by now that you know me well enough to know what I mean. I'm going to tie it back to my husband's Marfan's Syndrome, because the root cause of what's got me so upset is that damned disorder, but just be warned - it's a tenuous tie at best. Mostly, it's just my abject fear of what's coming.

     In less than seventy-two hours, I'm leaving behind the only home I've ever known and setting off for a new life in North Carolina. It's a decision that my husband and I didn't make lightly, but one that we felt was the best way to make good come from a bad situation. Namely, the fact that my husband lost his job last March and nothing employment-wise was working out here in St. Louis. We decided to give up our house voluntarily before we lost it and move in with friends (in his case) and family (in mine).

     Every day, I'm thankful to Adam and my parents for unhesitatingly providing shelter from the storm to each of us and allow us to make a fresh start. It's been going well since the transition, so I take that as a good omen that Charlotte will be kinder to us than St. Louis has been of late. Hell, it even seems like his health is better in that city than it was in the Midwest, though I know that's probably not a thing. The methadone regiment is working nicely, however, so that's a huge positive.

     We found a little house when I was down there and it's right in the neighborhood we wanted. My husband's new job is wonderful and pays well, but more importantly, offers full benefits. That's a key piece to the puzzle, which I'm sure is the most obvious thing in the world to anyone who reads this blog, but it stills bears mentioning. And on that same house-hunting trip last month? I got to re-connect with Adam, whom I hadn't seen in almost two years, and that was awesome. Even better, I met and totally hit it off with someone new that I have every hope will become a great friend to me. These are all really, really good things.

     Those really, really good things, though, haven't yet been able to push my sadness and semi-panic out of my head. There's also a nasty little ribbon of guilt snaking through it all, too, because I know this move is the best thing for my husband, especially. And really, after the year and a half or so he's endured, I don't feel that I should be moping around about moving. I'm twenty-eight years old, for Christ's sake! Shouldn't I be able to just be excited to start a new chapter of life with my husband?

     I can't find the excitement at this moment, though. I've been sick to my stomach for most of the day and looking at the boxes full of belongings stacked up in my bedroom just makes my throat close up. I keep trying to look at this as a road-trip adventure, especially since I have one of my best friends in the world driving the moving truck and staying with me the first weekend in North Carolina. I'm so happy he's going to be there and I know it'll be okay at first because I'll still have that living, breathing piece of home with me. Putting him on the plane, though, that's something I can't really think about right now.

     I keep trying to tell myself that this is for the best, that I should be excited. And most days, I am. Or maybe that it was just that it didn't seem real until now. I mean, yeah, my husband's been there and I've been here for a couple of months now, but I've at least been at home with my parents, living in my childhood bedroom. Do you know how much comfort there is in that? A lot, is the short answer. I'm someone who very much likes the familiar and the known and to be facing an uncertainty on this scale has just shaken me more than I ever thought possible.

     None of my usual tricks for calming my thoughts have worked - not driving around with music so loud the rear view mirror shakes, not doing a horror-movie marathon (don't judge, we all have our methods), not talking to my parents or my husband. Nothing. This, then, is my last attempt to find some peace. When the thoughts are flying around too fast, choking my poor brain and threatening to bring me to tears, all I have left is writing. My God, could I be any more emo?

     Regardless, it's all true, everything I just said. I want so badly to just be excited for a new start for my husband and I, because things have been so bad for so long. We've fought, long and hard, to get his medical issues reined in and we've had our asses handed to us by the Marfan's more often than we haven't. It's taken the proverbial village to get my husband and I back on our feet after getting kicked in the teeth so many times we're still bleeding and I feel awful for not being happier, more excited, more eager to start fresh. What the hell is the matter with me?

Tuesday, October 2, 2012

Treat Me Like Your Mother

     Occasionally, something happens to someone else in my life that, while not directly tied to me or my husband, hits so close that I have to weigh in with my opinion on the matter. (Absolutely no one has asked me for said opinion, but since when has that ever stopped me?) It's something that I think is SO important to any couple comprised of one or both partners with a chronic illness, but so unique to each situation that I don't feel it's even possible to give advice so much as relate my experiences with the hope that it will somehow help someone wrestling with the same.

     About a month ago, my sister Lizzie and her longtime boyfriend, Erik, broke up. It's been hard on everyone in my family, as they've been together since high school and Erik couldn't feel more like my brother-in-law if they were actually married, but it's been flat-out brutal for both my sister and Erik.  Maybe they'll come back together, maybe they won't; nobody can say at this point and that's not what I'm opining on anyway.

     The thing is, their relationship shared one unfortunate trait with mine and my husband's - Erik is sick. He suffers from ulcerative colitis and has for several years. It's something that they've both had to learn to cope with over the years and I don't know that their efforts were ever quite as successful as they'd hoped. You see, in the relatively short time I've been with my husband, I've figured out pretty quickly that one distinct difference between our relationship and theirs is the role I play in my husband's medical care versus the role my sister played in Erik's.

     As I said before, I'm not trying to give advice here or start armchair-quarterbacking another's relationship; that's not what I'm here for. I'm also not trying to insinuate that this is the reason for the separation - it's not and I'm not going to get into any more detail about something that's not mine. I just can't help but notice the two completely different approaches to so similar a problem.

      From the very first, I was involved in my husband's medical care. Even back when we had just started dating, I would make sure he was okay before I left for work if it was a day he'd had to call in. Or I would suggest that he call whichever doctor in his arsenal best suited the issue at hand and make sure he followed their recommended protocol. That early bond that we developed is, I think, a big part of our current solidity as a couple. Speaking as someone who was on the outside looking in, I can't say that I saw that particular bond form between Lizzie and Erik.

     It's so important to me that my husband has made room for me to stand firmly by his side in the hospital and something that I never anticipated when we first began our relationship. I mean, we talked about what his disorder would mean to us as a couple and how his Marfan's would affect our future, but we couldn't possibly have anticipated what would grow between us on that front. I really don't think there's any way we could've known, because there was no guarantee that it would happen. There was also no way to know how very essential to the strength of our relationship it would become.

     I love my in-laws a whole lot. We get along waaaaaay better than I did with my ex-husband's family and that's due in large part to the fact that they love my husband and I for who we are, not who they think we should be. (That, though, is kind of a whole different story, so let's move on...) Another great thing about them? While they're always there to support us, they know that ultimately, it comes down to my husband and I. Anything regarding his healthcare comes down to us and what we decide is going to be the best thing for our lives at that precise moment in time. That's a huge thing.

     As much as I love my family and could not be any closer to them, I have to make my decisions based on my husband's opinions and needs and wants. I know he makes his decisions the same way and I see now that it can't be any other way for us. I don't know if it's the same for other couples in shoes like ours, but for us to make this work, there's no other way.

     My husband is very clear about the fact that he and I are the ones who make the decision regarding his medical care, not his family. Please, please, please don't read that as me being super-bitch who only wants her husband all to herself and nevermind the fact that he's also a son and a brother; that's not what I'm saying at all. In fact, I always make it a point to call and discuss any major issues that pop up with both his parents and his sister, because I believe that they should absolutely know what's going on and have all the information they need so as to make an informed decision about the role they want to play in his care, if any.

     The point here is that, in my opinion, when you're dealing with something like Marfan's Syndrome making itself all kinds of unwelcome in your marriage, there really is no choice but to stand together as a team. It's kind of a twist on the whole "forsaking all others" bit that's usually included with the marriage vows. (Side note: I don't actually think my husband and I said that when we got married because Adam wrote the whole ceremony, but I could be wrong. End side note.)

     Everyone assumes that parts refers to not getting intimate with anyone but your beloved and they're not wrong, but doesn't it also make sense that it would refer to making your partner the primary decision-making partner in your life? I mean, yeah, ask your friends for their opinions, talk to your family about what they think, but when push comes to shove, it has to be a partnership, not a group effort. My place has to be forever right beside my husband for this to work and I'm pretty sure it always will be.

     The end result of all this rambling and over-thinking is that seeing my sister's troubles made me realize how lucky I am in having a husband who is of a mind with me on what could be a landmine issue. Ultimately, he's the one who made the decision, consciously or not, that it would always be us in the hospital room, us talking to the doctors and us making the final call with potential treatments, hospitalizations, or anything else that wants to walk through the door. I never realized before how crucial that piece of the puzzle is to our marriage, but it's a damned big piece, so I'm really glad it fits so well for us.