Saturday, November 9, 2013

Should I Stay or Should I Go?

     I think I've adjusted pretty well to life as a North Carolinian; I mean, I'm not making road trips back to Missouri once a month like I did when I first moved here or holing up in the house with endless episodes of Buffy the Vampire Slayer and a supply of Krispy Kremes to distract myself from the homesickness. So that's progress. Seriously, though, I'm getting to a point that I initially couldn't imagine ever reaching and that's a place where I know my heart's going to fracture if I end up leaving here and heading back across the Mississippi. The possibility of doing exactly that has come up in conversation with my husband, more than once. I mean, if we ever do get to start a family, I don't know if I can do that without being able to take her ('cause when we talk about it, she's always a she) to the places that I consider home, my roots. That's not the only reason we'd consider going back to the midwest, though - there's also the tiny matter of my husband's healthcare choices and the options available to him.

     The ridiculousness that was our July this past summer made us both really pause and reflect on what kind of healthcare my husband could really expect here in Charlotte. See, Marfan's Syndrome is considered a rare genetic disorder and as such, it's one that not many ER doctors have much familiarity with, if they have any at all. That's absolutely not a dig at the healthcare systems that we have to choose from in Charlotte; it's just a fact. There's nowhere in this city that we can go when Marfan's-related weirdness pops up and we need specialized help.

     When we were struggling through this summer, with my husband being hospitalized for days at a time and no answers available to us, readily or otherwise, I started looking for help elsewhere. I started at Durham, with Duke University Hospital, because that's where my husband's cardiologist suggested we look for a new specialist when the decision was made to move out here. I knew Duke was no joke when it came to hospitals and research, as they're obviously attached to a big-damn-deal university, but I didn't realize they actually had a Marfan's clinic; this was a heartening discovery.

     While my husband still hasn't made an appointment to go get his yearly once-over by the doctors who know what monsters they're supposed to be looking for, it's still comforting to know that that resource is within driving distance. I mean, it is if we're not dealing with an acute issue. If it's something like what we experienced this summer, with my husband in and out of the hospital and a seemingly neverending series of doctors from every corner of the medical field testing out different theories of what-the-hell-ever trying to solve the puzzle of what was wrong with him, then yeah, I guess we've got time and specialists aren't all that essential. In a different scenario, though, it could make all the difference.

     Remember when my husband had that mini-stroke (more accurately known as a transient ischemic attack), about eighteen months ago? Okay, well that was one of those times when we needed the doctors who knew him, knew what the hell I was talking about when I told them he had Marfan's, and knew who to call to answer any questions they couldn't. In that particular case, that person was Dr. Alan Braverman, who was not only my husband's cardiologist at the time, but also happens to be the director of the Marfan's clinic at Barnes-Jewish Hospital back home in St. Louis. And that right there is one of the reasons we have to entertain the question, "Should I stay or should I go?"

     I hate that this is even a thing, because to discuss it like this makes it almost seem like I hold up the healthcare in St. Louis to some unreachable level, when that's not the case at all. (Yeah, the specialists that my husband needs are there, but the ER waiting room at BJC is regularly only slightly short of a nightmare and that's absolutely no fault of the staff's; it's just the way things are sometimes.) It's more a matter of who has what at which location. Follow me? To get the type of specialized care he likely needs (and I phrase it like that because we never know if it's going to turn out to be a semi-routine issue or something no one can identify) if he has another random t.i.a or if he, God help us, shows up with an abdominal aneurysm, I would have to get him to a hospital over two hours from our current home, instead of 15 minutes away, as would be the case were we back in St. Louis. Worst-case, I suppose he could be stabilized at a local hospital and then transported to Durham, but it makes both of us uneasy to know that's our best option if/when the bomb drops.

     Hopefully, this isn't something that's going to have to be addressed anytime in the near future. My mother-in-law and I have talked about it, though, and even she, who rarely misses an opportunity to tell us how happy she is that we're here, that her son is once again within easy-visitation distance, has asked me more than once if I didn't think that maybe we should go back to be closer to his doctors at Barnes. I don't know. I have no idea if he and I are making too much out of this, or if we're just choosing to not see how serious a problem it could potentially be until we're in the thick of it, at which time it's too late to do anything but wait and see what happens. 

Monday, November 4, 2013

Turning Tables

     I think I'm kind of flailing right now, searching for something that seems familiar, and so I've ended up here. Maybe it's because the holidays are coming up fast and it's going to be hard, again, to not be with my parents and sister as much as I'd like to be, because they're half the country away from me. This is only my second time, ever, not being in the same state as them for Thanksgiving and Christmas. At this same point in my mom's life, she'd already been to 49 of the 50 states, lived in 36 homes and been to Europe and back. I only say that to illustrate the point that I know that I, at age twenty-nine, am well past the age where I should be counting on opening presents under the tree in my parents' living room on Christmas morning. I'm damn near thirty, married, and have my own little family here in Carolina. I even have a lovely house with a big front porch that's perfect for Christmas lights! And still, I can't help but feel something's off.

     I've been in this frame of mind since late last night, when I came home from Carrie and Adam's house. See, I had what should have been a relaxing, happy evening on Saturday and it was, until it went wonky thanks to what we think was some random allergic reaction. I wasn't at all expecting it and though it should've been nothing, a one-and-done, my brain just isn't wired that way, I suppose. Well, no, that's not a supposition - that's a fact. I've never come across a situation I couldn't over-think.

     What happened was a whole lot of randomness, actually. I was at Adam's parents' house for dinner and we had seafood. Being from pretty much the dead-center of the country, fresh seafood isn't exactly something that's on every menu, so I rarely eat it. I'm much closer to the coast now, so it's more common, I suppose. Anyway, crab legs were had, oysters were eaten (my first time) and I finished my dinner off with 800mg of Advil, because I'd had a crushing headache since before I got there. Normally, I keep a bottle of ibuprofen in my purse for occasions like that, because I'm allergic to acetaminophen (Tylenol) and for whatever reason, that seems to be the painkiller of choice for most households.

     I didn't have my regular purse with me, though, so I asked Adam if there was any in the house. He went and got me a brand-new bottle of Advil, which I knew to be safe, because it's just name-brand ibuprofen. About thirty minutes later, though, I started having the weirdest reaction. I first thought I was coming down with the world's most sudden cold, but when I started wheezing and my face felt like it was swelling shut, I realized that it was probably something else.

    And this is where is gets flat-stupid on my part, because I shouldn't have let my back-burnered issues that have been simmering for awhile trip up my decision-making process. You see, kids, because my husband requires so much extra care and trips to the emergency room like nobody's business, I'm extremely reluctant to go for myself, even when I know it's warranted. My husband knows this about me, we've discussed it on many occasions, and he gets no end of irritated with me (rightfully so, I admit) when I pitch a fit about going to the hospital for little things like, oh, collapsing in the hallway at 5 in the morning. (I knew why it happened and there was nothing that could be done about it, so I didn't see the point in making the trip.)

       I have no idea if this is simply my own neuroses wreaking havoc or if this is a common thing among those of us who live with a chronically ill partner. Selfish though it sounds, I hope like hell it's on the more common end of the spectrum, because it's not fun being the only one with things like this. Surely someone else has experienced that same sense of guilt because they don't feel legitimately sick enough to suck up the resources of the hospital when they could be going towards helping a more worthy recipient. Surely?

     'Cause that's what it is, you know. A weirdly misplaced feeling of guilt that I don't really need to be in the ER because I'm not actually sick, just having a strange can't-really-breathe-and-I-don't-know-why moment; I'm not sick in the way my husband and others like him are legitimately sick. It's the stupidest thing, and I know that, but even knowing that didn't lessen the sense of shame I felt while I was there or dull the embarrassment I feel now remembering it. Looking back, I wish I just would've kept driving and waited for my husband to get home from work, though even as I type that sentence, I know it wouldn't have been the right decision.

     What I actually did was get in my car and follow Adam and Carrie for awhile, since our houses are near one another and I wasn't sure of the way home. Plus, I think they weren't entirely convinced that I was as fine as I said I was and they wanted to keep an eye on me. My already-limited ability to breathe was getting more and more restricted as I drove, so I called my mom to ask what she thought I should do. (You know, like all grown-ass women do, right?) Her thought was that I should pull the hell over and let my friends take me to the hospital. So I did, and they did.

     And they stayed with me, taking care of me, making sure the nurse got the right insurance information for my chart and holding my hand while I sat through my first-ever breathing treatment with albuterol. (That shit tastes like death, in case you were wondering.) Adam called my husband, reassured him that I was okay, told him where we were. Carrie kept me smiling, made sure all the t's were crossed and i's were dotted, paid careful attention to what the doctor said so that she'd be able to fill my husband in when he got there. I mean, if you have to go to the ER, that's the way to do it, with family that takes care of you until the rest of your family can get there.

    Still, I don't like it, I'm not okay with it. I'm the healthy one, the one who sits with my husband in hospital room and watches "Chopped" until he falls asleep; that's my job. I can't shake this guilt, this feeling that I wasn't supposed to be there. I've spent more time than most in hospital waiting rooms and have seen too many times the abuses of the services available, the nurses run ragged by having to care for belligerent assholes with no insurance and a sprained pinky toe. It makes me sick and angry and I don't want to be a contributing factor to any of that, I really, really don't. There was a tiny voice in my head telling me to get my ass out of the bed, there are people who need this room, people with real problems, not just some ridiculously random allergic reaction to the fillers in the Advil. Or the shellfish, could've been the shellfish, but not very likely. I mean, it wasn't even full-on anaphylaxis! (I don't think.)

    This is bad, I know. I can't keep going on this train of thought, if for no other reason than I need to take care of myself so that I can take care of my husband. He's pointed out to me many times that it's just as important that I take care of my health for that very reason. We know that the Marfan's is a battle we're going to fight the rest of his life and we're as prepared for that as we can be, but his point is that we don't need to add to the weight we already shoulder by me ignoring my own health needs. I know he's right, but I still can't shake the discomfort of having the tables turned on me.