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. 

Thursday, September 26, 2013

Do It Again

     Jesus Christ, I've posted a whole 13 times this year? I don't know what's going on, except that maybe I'm just not as inclined to (over)share what's going on with my husband and I with regards to our life with Marfan's Syndrome. Actually, I don't think that's it at all. I know what's happening and I've been rolling it around in my head for the better part of too long and I still can't come to a conclusion.

     What it comes down to is this - I don't know anymore if I'm doing more harm than good. When I started this blog, my husband and I were both in a place so different from where we are now that I barely recognize it. I don't just mean because we lived in another state; our relationship was different, his health was in a different place, our heads were in a different place. Things have happened in the two years or so since I set this whole thing up that have irrevocably changed us and our course and it doesn't fit well. I keep telling myself that if I can help just one person by writing about what it's like living with something like Marfan's Syndrome in the house, then it's worth it. The thing is, though, is potentially helping some random person that I will likely never meet worth the discomfort and fractures that it causes among those familiar to me?

     As I so often feel the need to do, let me clarify - I don't mean that my blogging causes issues between my husband and I. He supports what I do, knows why I need to write and whenever there's something that I think I should probably run by him before I lay it all out there, I write the post, save it, and ask him to read it. As it turns out, I'm probably being overly sensitive about what might bug him, because he has yet to veto anything I've written or even ask me to speak about it in more vague terms. So. Apparently I'm the one overthinking this. Story of my life, right?

     I just...I don't know. I like to think that I belong to that exclusive club of people who truly don't give a fuck as they move through life, doing what they feel is right in the moment when it's happening. That's wishful thinking, though, as I don't believe too many of those people truly exist. I think they're more like an idea, a persona that most people wish they could fit into but know that they don't, never really will. It's just not practical to try and exist in the world if you are a world unto yourself and believe me, the effort of trying will wear you down fast. So as much as I'd like to say that I will keep doing this because I believe with everything I've got that helping one random person makes all the static worth it, I just don't know if I should.

      Every so often, a well-meaning comment hits me in such a way that it's like a sugar-edged razor in a cut. Not clean, just enough roughness to rip at the edges of the wound a little, but nothing that stings as sharply as salt, because the comment wasn't mean with that kind of vitriol. That makes it worse, always, when people say things to me with every good intention in the world. I mean, just spit it out, for fuck's sake. I can't overstate how much I appreciate when someone's got the sense enough to clearly state what their problem is, rather than trying to couch it in "concern". It may lead to a hellacious fight, but at least the air's clear afterwards and you know, if you're both still standing and not walking out the door, that you've got quality people around you. I've always thought of it that way, anyway.

      I realize now I should've added another disclaimer at the beginning so that you're not reading this thinking, "Who the hell said what to set her off?" Nobody, it's just a collection of comments and pieces of conversations that I've had with whoever since I started this blog and they finally made their way to the front of my brain. I needed to make it into a semi-cohesive thing before I could start writing with any sort of regularity again.

     It's still not cohesive or even close to ordered and actually, I just kind of annoyed the hell out of myself with this post, but I suppose that's going to be unavoidable once in awhile. It's fine, this will be the requisite whiny, woe-is-me post that every blogger has to have every, what, six months or so? Probably more frequently if you're not as cynical in nature as I am. So, really, when I look at it in that light, I'm actually doing pretty well with keeping the annoyingly introspective shit in my journal where it belongs.

     Next time I sit down to do this, I'll have my head on straighter, I promise.

Friday, August 9, 2013

Future Starts Slow

    When my husband and I made the decision to leave Missouri and come to North Carolina, it was made after careful reflection about our situation at that time and where our best chances for having a better future lay. St. Louis is home for me, (actually, a little town about sixty miles south of St. Louis is home for me, but no one knows where in the hell Festus, MO is, so) and it will never not be. I've now been in Charlotte long enough to know that while I may like and even grow to love other cities and states, my heart will always belong in the Midwest. Even knowing that, I have no intention of picking up and heading back across the Mississippi, unless it becomes necessary for my husband's treatment to be near Barnes-Jewish Hospital, which is home to a Marfan's clinic and his specialist/cardiologist.

     We left St. Louis on not-fantastic terms, because our life had taken a turn for the seriously worse, for reasons  both completely valid and completely confidential. Choices had to be made and none of them were quite what you'd call "good", but we picked the one that we thought was best and tried to make things work here in North Carolina. So far, we've had varying levels of success.

     There are some particularly nasty demons that we're trying to outrun, and putting a river, some farmland and a mountain range between us and them seemed like a good place to start. It's helped, but damned if we didn't start our life here making little to no forward progress. Hell, if anything, we backslid like crazy for awhile and if it hadn't been for the support of our family and friends, we would probably be free-falling still. I think though, and this is a very, VERY cautious think, that we're finally getting somewhere.

     My husband recently accepted a new job and it pays a little better than his previous gig. Not a whole lot, mind you, but we're happy just the same. The real prize in the Cracker Jack box, though, is his new health insurance - a $100 ANNUAL deductible?! Are you effing kidding me? That's unheard of. I mean, I work in the legal world and I deal with medical insurance quite a bit with what I do and I have NEVER heard of such a thing. When my husband was first going over his new benefits package with me and he read that, we both thought we couldn't possibly be understanding the plan correctly, in spite of the fact that both of us know waaaaay more about health insurance plans than any layman should. Turns out, seeing is believing in this case, because his HR department assured him that the $100 annual deductible was exactly what it looked like - a tiny miracle.

     As I type this, there is a large pile of medical bills next to my left hand, taunting me with their payment deadlines and their sheer abundance. They're all the result of the three-week healthcare circus that my husband and I just endured last month. He had heath insurance, yeah, but that particular plan required a 10% co-insurance payment from the subscriber. (Subscriber = industry-speak for the person who's covered under the health insurance policy in question.) ONE of my husband's many, many ER trips in the past month cost over $13,000 in total - you do the math and tell me how much of a dead weight these damned bills are/have been/will be.

    So this lovely new health insurance is a huge thing for us, as my husband tends to frequent the hospital like most people frequent the grocery store. The other godsend? ( Or something-send, because the "god" part of everything has come into serious question over the past several months.) I was offered a new job with a very significant raise in salary and I start said new job on Monday.

     It was actually a much harder decision that you'd think, figuring out whether to stay at my old firm or leave for the new one. I was very happy at the little firm I worked at; the people I worked with were great and I felt that I could learn new stuff at a comfortable pace. That's important to me, because I'm someone who generally picks things up quickly and I'll get bored easily if I'm not allowed to push myself to learn more, do more. When it came down to it, though, I made the choice I did because I felt that it was better for my family at this point in time and possibly down the road as well.

     Truthfully, my husband's disorder played into the weighing of the pros and cons, as it always seems to, in some way or another. We talked about what his/our future looked like, what we needed to do to get there as comfortably as possible and what would leave things in the best shape if it turns out that it's my future, not ours. (Yeah, we've had to have that convo and it sucked, but we both feel better for having it. No, I'm not getting into it right now. Maybe never.) At the end of the day, I had to leave my pretty little office and accept the new job; there was really no other logical option.

     It sucks how hesitant I am to believe that this is finally the new start that we were looking for when we left home, but anyone who isn't cautious after getting their teeth kicked in repeatedly is a damned idiot; I'm a lot of things, but stupid isn't one of them. I'm not in the mood for overt negativity either, though, so we'll go with the belief that this is the start of a better future; we just had a slower start that I would've liked.


Friday, July 26, 2013

Further On Up The Road

     Is it okay to just do a (relatively) short post, do you think? I mean, I know it's my blog and all and I'm kind of master of my own domain and all that, but the idea of a short post seems weird to me. Maybe that's because I tend to run off at the mouth so much, especially when things have been building up for awhile. Or when they haven't, whichever. Honestly, I'm just a mouthy little creature in general, though I know some would disagree with that statement. I also know the above statement seems to be in direct conflict with the fact that I don't post as much as I used to, but I promise you, the words are still there in as much abundance as they ever were. It's just that things are getting darker and uglier and I'm so much more hesitant to put myself out there with those thoughts that some of the others.

     I never wanted to be, you know. Hesitant. In fact, the whole point of this blog, when I first started it, was to try and give as honest a description as possible of what it's like living on a daily basis with the unwelcome entity of Marfan's Syndrome, the degenerative connective tissue disorder my husband was born with. It's become something else, something that I'm becoming afraid to utilize in the way that I need to. I don't know what, exactly, happened to make it that way.

     I think I mentioned in some post or other awhile ago (and by "awhile", I could mean two years ago; I'm not sure) that one of the things that's hardest for me about writing this blog is deciding which parts of my head go here and which parts go into the paper journal that I carry around with me. That journal, in its dozens of incarnations, has kept me calm and able to think straight since I was thirteen years old. It started with black and white memo books that I filled with adolescent angst and wretched poetry that would make even that guy from My Chemical Romance cringe. Now, I fill beautiful leather-bound books with much, much heavier things, thoughts I never imagined I would ever be in a position to have. The end result is the same, though, whether I'm fourteen or twenty-eight - I can sleep at night, because the chaos has somewhere else to go.

     The problem I'm now facing is one that I've been wrestling with for the past three weeks or so. Things are happening with me, with my husband's health, with us as a couple that I desperately want to put out there into the world on the off chance that someone can relate to what I'm saying. It's not just for myself and my own purposes that I want that; I want that faceless person who's thinking my thoughts and fighting the same war with the same desperation I feel to know that they're not alone. I don't want to be alone in this and I don't want the others who are like me to think that they're alone in this. I mean, isn't that the whole point of the exercise?

     What I'm trying to say, in my incredibly roundabout way, is that I need, badly, to get some ugly, ugly thoughts out and I don't think the paper will suffice this time, though that's instinctually where I want to go, because it's safer. I need to know, if I'm going to keep going, that there's someone out there who can commiserate, who's fought this fight, whether they won or lost. I don't care; I just need to know how to do this. I'm almost there, almost ready to expose something that I'm pretty damn sure is not going to come out in a way that makes sense to anyone but me.

     Huh. I guess it's not going to be a short post after all.

Sunday, July 7, 2013

My Medicine

    So I finally got to bring my husband home from the hospital a couple of hours ago and he's now resting happily on the couch, eating chicken noodle soup and watching Clerks for the 18,752nd time. It's yet to be seen whether or not the soup will stay down, as virtually nothing else has for more than a week now, but we're hopeful. He's lost about twenty pounds since his gastrointestinal shenanigans began, but my husband assures me that he will find them in no time. We'll see how that goes, as he gradually makes his way back to the land of the (relatively) healthy. Meanwhile, this is happening...

                                   I don't even know what half of these do...

     Four of those bottles pictured are my husband's daily meds, his blood thinners and beta blockers. The other six are the new ones that he just came from the hospital with prescriptions for. I can't even tell you what they're all for, and I'm pretty well-versed in the language of prescriptions. The majority are anti-nausea stuff, as that was the main problem that landed him in the hospital in the first place. Well, that and the 7.1 INR, which was twice what the top end of acceptable is. That was a pretty easy fix, though, once I saw the bottle of meds that he'd been prescribed at the ER and realized that they contained an antibiotic, which never plays nicely with his warfarin.

     As many pills as my husband is currently taking every morning, it actually would've been more just a few weeks ago. Imagine the above picture further crowded by four more bottles, because that's what it would have looked like last month, when my husband was still on daily methadone and hydromorphone for pain, along with a couple of other prescriptions. Oh, and then there was the cyclobenzaprine that he had on an as-needed basis. Did you catch all that?

     It's never really been an issue before, the plethora of drugs that my husband consumes to keep himself going. We've been lucky in that the bad reactions have been few and far between (though when things do go wrong, they tend to go really, really wrong), so it's never really bothered either of us that they're a necessary part of our lives. I mean, the cost of them can sometimes suck, depending on where we are with our finances, but the insurance he's currently got is pretty good and pays almost the full amount of his prescriptions.

    As we were leaving the hospital today, though, my husband mentioned that he was still having a hard time focusing on things and it was making him dizzy. I wondered out loud if this could be contributing to the mystery nausea that no one can seem to find a cause for. Turns out, it's just the opposite - he's on so many drugs right now that he literally can't see straight. I'm sure it was just my twisted sense of humor making yet another inappropriately-timed appearance, but I started laughing so hard when he told me that, 'cause come on.

     People use hyperbole every day without even realizing what they're doing; it's a common speech mechanism and I get that. However, I assure you that this is not the case in this instance. My husband apparently mentioned the fact that he couldn't really get his eyes to focus to the doctor while he was still hospitalized and was told that the reason was probably all the various and sundry drugs that he'd been fed over the past week.

     It makes sense if you stop and think about it, actually. In addition to his regular keep-me-alive meds, he's been given so many anti-nauseas, painkillers and godknowswhatelses over the past seven days, both in pill form and intravenously, that his body's freaking the hell out and certain functions were bound to get back-burnered. I imagine that his body had to have some serious conversations with itself to decide which functions took priority over the others while it tried to sort out just what in the hell was going on and his vision must've drawn the short straw. I'm sure there's a much more scientifically-phrased explanation for it, but that's how it works in my head.

     Whether or not he can see, though,he's home now and we'll just have to concentrate on one thing at a time, like keeping solid-ish food in his stomach. The chicken soup's been okay so far; maybe he can graduate to crackers later. Sleep will come, because he never gets a lot of that when he's in the hospital, so I know he's exhausted. His body isn't very good at fighting off sickness anyway because of everything that's wrong, but it's going to have to get its shit together and work at making him feel human again, weird side-effects or not.


Saturday, July 6, 2013

Love Tattoo

     My husband just turned forty this year and he marked that milestone with only one piercing and zero tattoos; I, on the other hand, am more than a decade younger than him and already have four tattoos and ten piercings. To clarify, all the piercings are in my ears and all the tattoos can easily be covered when needed for work and such, so it's not like I'm running around all Megan Massacre-y, however much I might like to. Of the two of us, I think tattoos have always held more appeal for me than him, as we've had several discussions about why he didn't have any and he always had solid reasoning. The biggest one was that he had never come across a design that he liked enough to make it a permanent part of his landscape. While I completely agreed with his reasoning, after Wednesday's misadventure, there was no reason in the world good enough to keep him out of the tattoo shop.

     Oddly enough, we had actually been discussing my husband having a medical alert tattoo done for a few weeks before he got hauled away from work in an ambulance. I mean, discussed it to the point where he had worked up a design after consulting with his primary care physician about what it should say. He hadn't pulled the trigger, though, because at the end of the day, it's a permanent commitment, potentially life-saving or not.

     The thing is, we'd been kicking the idea around for about six months or so, just tinkering with it. With all the hardware he's carrying around, the cocktail o' daily drugs he's on and just his general overall Marfan's weird medical shit, we figured it was probably a good idea to get it all out there where it's easily visible in case I'm not there when something goes wrong or he's unable to speak to let the medical personnel know what's up. We looked at medical alert bracelets and such, but there was no guarantee that he would remember to make it out of the house with a piece of jewelry on and besides, they're pretty easily overlooked in the (potential) panic of the moment, should life-saving measures ever be necessary.

     Google confirmed that we weren't the first ones to have the idea of a tattoo like this in an easily-readable spot, and after talking to his main doctor to see what should be included in the ink on his arm, we made tentative plans for him to go through with it. Someday. When the time was right. A long time from now. And then Wednesday happened and everything went all to hell.

     See, what we've been dreading for a long time is a scenario in which my husband is incapacitated and thus unable to speak to the paramedics/EMTs/doctors about his medical history. If he can't tell them about his medical history, they could very well make things worse by treating him for what the symptoms indicate as the most likely cause (heart attack), instead of what's really going on (internal bleeding from a ruptured aortic aneurysm). Like this past week, when he was given baby aspirin in the ambulance. Baby aspirin kind of does the opposite of what you need a drug to do when you've just sprung a leak internally, especially since my husband already takes wafarin on a daily basis due to his heart valve.

     Please understand - I don't fault the paramedics who treated him one bit. They did exactly what they were trained to do, and the odds of them ever having encountered a Marfan's kid like him are staggeringly low, so how could they have known what they were actually dealing with? Well, I'll tell you how they'll know next time - my husband had everything they need to know about him tattooed on his left forearm, along with a medical alert symbol the size of a softball. I mean, you would have to actively work to not notice this thing.

                               Tattoo by Jake Thorsell @ Fu's Custom Tattoos

     He's actually in the hospital right now (more on that later) and thus far, that tattoo has made him kind of a rock star. Well, as much as one can be while watching Food Network from a hospital bed and eating popsicles, I suppose. But still, all the nurses love it, one of his doctors has expressed his desire to get a similar one on his chest, and the paramedics who initially brought him to the hospital? They were actively going out into the ER to bring colleagues into my husband's room so that they could see it. Definite celebrity status, I say.

    I know this solution isn't for everyone and I'm sure there are those who think we've gone way too far overboard, headed into paranoid territory, even. I don't think so, neither does my husband, and frankly, I can't think of anyone else whose opinion matters on this one. I feel a hell of a lot better, knowing that his relevant medical history is right there should he need it and I know he does, too.

Monday, July 1, 2013

I Just Don't Know What To Do With Myself

     I always know what to do when something happens with my husband's health. Always. The time he had a mini-stroke while I was at work one day? I did not freak out, I did not rush out of the building and haul ass down the highway towards home. I stayed on the phone with him, asked him what kinds of symptoms he was experiencing, and when it started to look like exactly what it was, I calmly called 911 from my car and ask if they could please send an ambulance over to my house, because my husband was alone and I  suspected he was having a stroke or stroke-like episode. Not one time did I lose my cool, not when I pulled up in front of the house to see an ambulance and my husband being loaded into it on a stretcher, not when we were in the trauma section of the ER, not when the 78th specialist came by to check, yet again, for permanent neurological damage. You know why? Because that's what I do, dammit; I keep it together.

     Not this past Wednesday, I didn't. No part of me was okay and for the first time since my husband and I have been together, my brain locked up and ceased its usual functioning and I didn't know what to do. The levels of embarrassment I feel right now are almost overwhelming and I haven't the first clue how to try and get past that. I mean, time heals everything and that saying's a cliche for a reason, because it pretty much does. Well, if not "heals", then "dulls the edge until it doesn't cut anymore." We'll go with that one, as I think it's a good deal more accurate.

     The whole clusterfuck started on Wednesday night, after I'd gotten home from work. I hadn't actually been home that long when I looked at my cell phone and saw a string of texts from my husband which crescendoed with, "Going to CMC University. Called ambulance. Can't drive," which was, for me, several levels above unsettling. You have to understand - my husband has never even called me to come pick him up from work when he's feeling bad, let alone an ambulance. So that handful of words immediately told me one of two things was happening - A) he was feeling really, really terrible, to the point that he was scared and wanted to be at a hospital twenty minutes ago, or B) things had already gone seriously wrong and someone had called 911 because he wasn't able to do it for himself.

     I keep running that night over and over in my head, looking for anything I can use to justify to myself what I feel was a failure on my part. The most logical thing I can come up with, the one that feels the truest, is that it wasn't so much what was happening that shut me down, but my lack of knowledge of the situation and, by extension, control thereof. I'm aware that makes me sound like a control freak, and to tell you the truth, that's a fair assessment - you have to be a bit of one to survive in the world of unwellness.

     This life is not something for the faint of heart, for people who have romantic ideas of stoically standing by their spouse, nursing them and reading to them in hospital rooms that have been oh-so-considerately set up to accommodate the partner as well as the actual patient. That pastel picture that I just hinted at is nothing even close to resembling the unpleasant truth, but that's a topic for another day. Right now, what's important is that I make you understand just how much I have to be in the know at virtually all times. It's not because I have some insane, driving need to know every detail of my husband's condition at any given time - it's because I can't make the calls I have to be ready to make if I don't know what in the hell is going on.

     So in retrospect, I think it's a pretty safe bet to say that the lack of available information was what caused my head to grind to a halt. To show you how ill-prepared we were for something like this, (despite knowing better) I confess that I didn't even know what number to call to get ahold of someone at my husband's office. Not the first clue. I ended up digging through his email until I found an old one that he'd sent to a co-worker and I pulled the phone number off of that. Thank God he keeps his Gmail up and running on his browser at all times, eh?

     They must have been waiting for my call at his office, because his supervisor knew who I was immediately, even though we've never spoken before. She informed me that "he was conscious when they were loading him into the ambulance, but he was deteriorating." What.the.fuck, lady?!?! What does that even mean, "deteriorating"? Was he, as my sister later wondered aloud, coming apart at the molecular seams and disappearing? Was he losing his mind, a theory supported by the news that he didn't know anyone around him by the time the paramedics finally got the stretcher in the back of the ambulance? Or did she mean that his physical condition was rapidly going downhill? Do me a favor - NEVER use the phrase "deteriorating" when describing someone's condition to a loved one trying to figure out what the hell is happening. I don't care if they're heading towards comatose - lie, and let the doctors sort it out when everyone's arrived at the hospital.

     It was then that I just stopped. I stood in the living room, looking out the front window and not having coherent thoughts. I knew that I didn't really know how to get to the hospital that he'd been taken to and I knew I needed someone to take me, as my GPS wasn't working. (The weirdest damn things make their way through the mental debris in a crisis, as it turns out.) The first really clear thought I found was, "Call Carrie, she'll know." I knew it was the right thing, that yes, she really would know what to do, though I still don't know how or why I was so sure of that. Her phone went to voicemail, so I left a message, trying to be nonchalant, which I now realize was ridiculous. Pretty good odds say my voice sounded like that of a tweaked-out field mouse, which isn't normal. At all. Still, I didn't tell her what was happening, just asked if she would call me when she got my message.

     I sat down then, and looked out the window some more, because I couldn't figure out what the next step should be. God, that pisses me off just to write that. I want to go back and shake the hell out of myself and scream, "Get UP and get MOVING! You're better than this, you KNOW how to do this!" I didn't, though. I just sat and waited some more. I guess I decided that wasn't very productive, because then the keys were in my hand and I was in the car. I had a vague idea that the hospital was near where my husband worked, though I wasn't completely sure how to get there, either. I hadn't made it 50 feet from the house when Carrie called me back.

     Like so many other things that night, I don't know exactly what I said to her, but either I got enough out that she figured out what was happening, or she just responded to the sheer panic I'm sure she heard. I remember her reassuring me that Adam was in Charlotte and that she was "going to call him and he'll come to you. Just hold on, it's going to be okay, just hold on." So I did exactly as she told me, and waited for Adam to come to me at my house.

     I followed him to the hospital, pretty unaware of anything except the silver car in front of me that was my link to my husband at that point. We pulled in and parked, and I went straight for the ER entrance; I just assumed that Adam would be there with me. I heard my voice tremble when I stopped at the front desk to give my name and tell them who I was there to see and knew then that I was close to coming as unglued as I've ever been, but damned if I wasn't going to try and keep something together, just for a little longer. I felt like if I could just see my husband, see that he was still here with me, then everything would settle back into the closets where I keep it and I could work it all out later.

     Straight through the double doors with Adam behind me, I rounded the nurses' desk to the room that I'd been told contained my husband - except that it didn't. I can't tell you what it felt like to walk into that room and find it nothing but empty, even though the part of my brain that was still (barely) functioning was screaming at me to stop acting like I've never done this before, that he was probably just off being x-rayed or CT'd or MRI'd somewhere. Didn't matter, couldn't help it - I sat down, heavily, in one of the two chairs in the room and I'm sure Adam could see me shaking from his place on the other side of the room.

     I hated that, hated that I couldn't lock my emotions down and THINK for two goddamn minutes. The discomfort actually had nothing to do with the fact that there was a witness to my semi-panicked display, though. My ability to disconnect and think logically (some say coldly, but trade places with me the next time this happens, then we'll talk) whenever a medical crisis comes up is something I pride myself on, something I cultivate. It's not for egotistical reasons, either. By law, if my husband is ever incapacitated and a medical decision has to be made, up to and including whether to take him off life support, I have to be able to think clearly, to do what's best for him, not for me or anyone else, because his life matters more than anything at that point, no one else's. You simply cannot be led by emotions at times like these, because that helps exactly no one.

     Do you understand now why allowing my gears to lock up when this kind of thing happens is just not an option? I have to take care of him, I have to be ready to do whatever needs doing, whether it's making phone calls to the family or reeling off his list of daily meds to the nurse, and being suddenly afflicted with not knowing how to do anything hardly helps facilitate that. I could've failed him. I mean, Jesus Christ, I was so shaken up that when the doctor came in to talk about what could possibly have caused all this, I didn't even remember to tell him the most likely culprit - a pretty significant medication change in my husband's daily routine. How in the holy hell could I be so stupid as to forget a medication change? God, I'm just at a loss right now.

Monday, June 24, 2013

Open Doors

     It's been over two months since I've posted and it feels like so much longer. Right now, as I type this, I'm unsure of myself, unsteady with the motion of bringing all of this out of my head. It almost feels foreign to me, as ever since my whole domain-hopping nightmare, I've been using my paper journal as the lifeline to keep me within sight of land. Strangely, though, I haven't been writing about anything related to my husband's health issues or, really, anything Marfan's-related. In fact, now that I think about it, I don't know that I ever really have, not since we first started dating and even then, I only skimmed the surface of what was there. I'm sure there's some deep psychological meaning behind that if I felt like looking for it, but I really, really don't. I'm not particularly interested in the "What does it all MEAN?!?!?!" way of thinking most days and shockingly enough, today is no exception. Also, hi!

     Believe me, there has been plenty going on to write about in the past couple of months and it's only my technological idiocy that's kept me away from the blog. Happily, I seem to have undone the damage that my mucking about in things beyond my pay grade temporarily did, so let's go another few rounds, shall we? Um. Where to start. Well, my husband fell in the kitchen last week and landed pretty hard on his back, so there's that. He tried to ride the pain out on Tuesday night, which is when it happened, because we both knew what the hospital would do if he were to show up in the emergency room. He was in no mood to spend his evening trying to convince the hospital staff that he was not a junkie and was instead in severe amounts of pain, so we didn't go.

     By the next day, though, it had gotten so bad that he was left with no choice; he could barely walk. He called me at work (new job, btw, full of people who don't know that my husband is disabled) to let me know and ask what I thought he should do. I said that if he felt it necessary, of course he should go to the ER. He was dreading it, though, because he knew how he'd likely be treated and you can only face that so many times before you decide that the physical pain is the preferable choice over the mental exhaustion of trying to argue the case for your character yet again. His pain-management doctor is kind of a prick, too, and never fails to hassle him about seeking "extra treatment", like he's sneaking massages on the sly or something.

    Knowing all this, I suggested that he call the pain-management doctor's office first and ask them what he should do. That way, his inevitable trip to the ER (which was sure to include narcotics) would be more or less sanctioned and thus not subject to the scrutiny that's the usual order of business. I figured that even if he had to leave a message with the nurse or something, it would be the effort that counted, and a solid mark in the, "I told you I'm not drug-seeking" column. He ended up leaving a message at the doctor's office, calling a cab and heading over the ER. He had to use his cane, which tells me quite a bit about where his back must've been. Actually, my husband later told me that he considered taking his walker, which means he was really feeling that fall, because there are few things on this earth he hates like he hates his walker.

     By the time I left work and got over to the hospital, made my way through the maze of unfamiliar hallways and into his room, the nurse was just unhooking his IV. Can I time an entrance or what? It was vaguely uncomfortable, because my husband and I were making our usual inappropriate jokes about his situation and the nurse was giving me some serious sideways looks, but I didn't really give too much of a damn. It makes us feel better about what's happening and it's our semi-twisted way of coping, so I figure it's all okay in the end.

     He was in no shape to walk all the way back to the parking garage where I'd left the car, so I set off on what felt like an epic trek to get back to the car and bring it to him. I eventually succeeded, though I did drive right by him once without even realizing it. (Though in my defense, if you're going to wait outside for someone to pick you up, try waiting OUTSIDE.) Small details, people, small details.

     See? Nothing so very exciting around here, though I do have some things that have been burning at the back of my brain. They'll work their way out in time, I'm sure, as they always do. I have to get steadier on my feet, though, before I can get into the deep end of everything. It's pretty crowded right now, and sharp, with ideas and emotions fighting for position because they can see the crack of light which means freedom. Even though it's not a door I deliberately closed, it's been closed nonetheless for weeks now and that push to get out has been gaining momentum. I think I'd better get out of my own way and just let it run.


Saturday, June 22, 2013

Catch-Hell Blues

 Confession of the day: I haven't had a regular doctor since I had a pediatrician. This fact never ceases to drive my husband absolutely up the wall, as he's big on visiting the doctor and regular check-ups, for obvious reasons. He's been on my case to find a primary care physician since around the time we got engaged, when he somehow decided he was semi-responsible for keeping me healthy. I have not made finding one even close to a priority, because I, like the vast majority of the population, enjoy relatively good health. I don't get sick often and when I do, I usually just medicate myself with whatever my mom tells me to pick up from the pharmacy. Failing that, I've been known to make a trip to the nearest urgent care facility. This methodology hasn't failed me yet.

     That said, I finally gave in last week and accompanied my husband to his doctor's visit to have his INR tested. He goes in at least once a month, sometimes more if something feels off, and the office staff already knows him, despite his only being a patient there for maybe six months. My husband insisted that I go with him so that he could introduce me to his physician and see if I wanted to make him my physician as well. As it turns out, I liked him very much and he was accepting new patients, so I signed up for my first physical since my ill-advised attempt at running track in seventh grade.

      While we were in the exam room, waiting for the doctor to come in, the nurse who had taken my husband's vitals and confirmed his current medications asked if he had any questions that he wanted the doctor to address. My husband had a less-than-pleasant experience the last time he had to go to the emergency room and he's been having a similar problem at his current pain-management doctor's office. It's a deep enough issue that I'm okay with saying it warrants an entirely separate entry, so I'll spare you the details just now, but it was something that my husband and I both thought important enough to bring to his doctor's attention.

     Truthfully, though, we were both so hesitant to actually bring it up, because we both know how much bitching doctors and nurses have to put up with on a regular basis from patients who either haven't the first clue what they're talking about or have WebMD'd the hell out of whatever it is that they're seeking medical treatment for in the first place. My best friend and his wife are both pediatric nurses and I've heard my fair share of stories about well-meaning, but utterly clueless parents who really just get in the way. During my many, many trips to the emergency room with my husband, I've overheard countless doctors and nurses trying to explain to the patients and their family members why they're doing what they're doing, even though they don't really have time to play 20 Questions.

     Let me be clear - I certainly don't expect people to just nod their head in assent to whatever the doctor tells them to do or medicate themselves with. God knows, they're not all-knowing and they make mistakes, though with potentially more dire consequences than when you or I make a bad judgment call at work. What I am saying is that the vast, VAST majority of people do not know enough about what's going on with their bodies or treatment to be able to reasonably question what's going on. These medical professionals have had years of training, both in school and on the job and they generally do a damn fine job.

     Of course, everyone is quick to point out this one story they read about how a doctor amputated the wrong leg, or how someone was given Tylenol even though they had a known acetaminophen allergy. Yes, I'm aware, badness happens. And yes, as I mentioned before, when a doctor makes a mistake, it could potentially be fatal and so the margin of error is much, much slimmer than the one most people operate with. Truthfully, I believe that's a risk that someone assumes when they choose to go into the medical field, but that's neither here nor there. (See how quickly I can go off-topic?) As I was saying...

     My husband had some concerns that he wanted to discuss with his doctor about the treatment plan (or lack thereof) that his pain-management doctor had put into place, but he was so hesitant to do even that. He's spent so much of his life in and out of hospitals and doctors' offices and even though I haven't experienced that aspect of the medical profession as extensively as he has, my mother has worked in the medical field for most of my life and I've seen enough to know that for every arrogant doctor who thinks he knows everything, there are seventy-five others who just want to help people. Nurses are kind of the unsung heroes of the situation and I feel for them, too. My husband and I both have a pretty deep respect for the medical profession and so it was a delicate situation in that exam room.

     His doctor is awesome and wasn't in least offended at the questions posed, just explained what he thought was going on with the situation we'd discussed and said he'd be happy to refer my husband to a new pain guy if he'd like to see someone else. My husband made sure to convey to him that he really wasn't trying to be a pain in the ass and nor did he think that the doctor in any way didn't know what he was doing; it was just that he wanted to see if someone else might have a better, more proactive treatment plan than the one his current doctor seemed content to be following.

     So we walked out of there with an appointment for me, a referral for my husband and a sincere hope that we hadn't inadvertently become those patients, the ones who question everything and hop doctors like there's no tomorrow, searching for the magician who can make every hurt go away before it begins to ache. That guy doesn't exist and I pity the ones who think he does. Instead of searching for what can't be found, a better plan might be to be thankful for what you've got and ease up on giving hell to those who are, by and large, only trying to help. 

One of These Nights

It's been more than a month since I last wrote anything and I feel that it's getting harder and harder to get my thoughts out of my head. Old issues are starting to fester and become infected, new issues are popping up with an unpleasant amount of frequency. Last week? First trip to the emergency room in three months and it was one of the most frustrating trips I've yet experienced. Week before that? My husband went to the grocery store by himself while I was at work, crouched down to look at something on a lower shelf, blacked out and fell into it. Neat.

     I'm also discovering that my homesickness and growing sense of isolation is making me a less than great partner at the moment. I hate admitting that, because I always want to try harder and harder to be what my husband needs, to be that perfect support. It just feels like it's becoming more and more an unreachable standard, because I'm getting so wrapped up in my own shit that I just don't have anything left over. And let me tell you, living with something like Marfan's Syndrome takes a hell of a lot of extra on any given day.

     While I try to get that ugliness to fall in line long enough to march its sorry ass out of my head, let me at least relate what happened in the ER last week.

     It was by far the worst experience I've had in all my trips to the ER with my husband, and I say that as someone who is a native of St. Louis, where the emergency rooms can very closely resemble a tiny war zone. It was so bad, I found myself wishing for nothing more than to be magically transported back to the barely-contained chaos of our home hospital. At least there, the nurses knew my husband by sight, got him in quickly and knew that I was well-versed in his care, enough so that they'd ask me for a rundown of his meds and medical history when he was in too much pain to be of much use.

     So last Tuesday, my husband got off work a bit early and by the time he made it home, he could barely walk. He reached the point quite some time ago where he decided the ER visits were, in all honestly, pretty much a waste of time and money because the relief they provided was fleeting and no one really knew what to do for him anyway. I mean, it's been more than a year now since the ER doctor told him, as nicely as possible, that they simply didn't know what to do for him. They had no effective treatments and only the vaguest suggestions.

     Neither my husband nor I blame them at all for that; if anything, it's quite the opposite. We both know the score, that he's got something that many doctors don't see in their careers and to further complicate matters, my husband belongs to the first class of kids to have survived this long with a case of Marfan's as severe as it is. That's what my research and the few doctors I've discussed it with tell me, anyway. The doctors are (for the most part) working the best they can with the little they've got. It's nobody's fault, you see, when there's nothing to do but wait and see what breaks next.

     In any case, when my husband asked me to please take him to the hospital, I knew it was bad. He sees a pain-management doctor now and the methadone plus hydromorphone regiment that he's currently following usually works pretty well, but something must have just gone wrong, because he was not only damn-near immobile, but also slightly worried that he was experiencing spontaneous pneumothorax, which has happened to him on two occasions and which those with Marfan's are prone to.

     So we loaded him in the car and away we went. Even though we've been to the ER here in Charlotte before and I was pleased with the service and the level of care my husband received, we decided to try the other big hospital in town, because that's the one his pain-management doctor is associated with and it would make it easier for that office to pull my husband's medical records from the visit, should they need to. Next time, they're just going to have to deal with contacting the other emergency room to get the records, because like hell I'll ever go back to that place.

     It was so damned dark when we pulled up to the emergency room entrance, I thought the place was abandoned at first. Maybe that's because I watch too many horror movies, but seriously, it was bad news all day. There just happened to be a very kind maintenance man outside who saw me pull up and watched my husband struggle to get out of the car. Before I could put it in neutral and set the parking brake, the man had run inside for a wheelchair and said he'd take my husband inside to get him signed in. I thanked him profusely and then went to find a parking spot.

      Why Michael Myers wasn't waiting in the darkness of that parking lot to murder me on the spot, I don't know, because it was sure as hell a place where things like that happen. I mean, there was not a single light in the lot and the staircase to get back up to the ER was so dark and steep that the wonderful maintenance man had come back outside to wait for me and make sure I made it safely inside. In his words, "You never know who could be waiting down there." Fucking excellent.

     The wait wasn't too bad at all, though it was more than frustrating to watch my husband try and explain what was going on to the various medical personnel again and again with little to no comprehension on their part. Finally, when it became too painful for him to continue telling the story ad nauseum, I jumped in and explained exactly what was happening and why. I also spit out his medical history, because for some reason, the person taking his vitals was having the most difficult time understanding why he was in such pain. (Um, perhaps the 26-inch scar down his spine tells part of the story? No, just gonna ignore that? Okay, then.)

     It was almost two hours before anyone gave him anything for pain, because they were still trying to figure out what the hell was going on. Normally, both my husband and I have a degree of tolerance for that. There's no way every doctor can know everything about every case that walks in the front door, and this holds especially true for emergency room doctors, who have to face all manner of wonky injuries and strange illnesses on a regular basis. However, when it's already into hour 2 and they're still trying to get their heads around the fairly simply concept of so-much-pain-he-can't-breathe, I tend to start edging towards livid.

     Even then, even with the love of my life lying on a narrow hospital bed with his knees pulled up in a futile effort to try and alleviate some of the nearly-unbearable pressure on his spine, I was still able to keep my cool. That ability was tested in ways I never thought possible when the doctor who would be treating him walked in the room and proceeded to act as though I wasn't even there.

     Lest anyone think I'm trying to make this about me, let me explain something I've learned during my time spent in the hospital with my husband. When it comes to describing what's going on, typically the patient has to be the one to do that. I can't express what my husband's feeling, for obvious reasons. However, when it's a scenario like this, one which has played out a hundred times before for us, I have a pretty damn good idea of what's going on. In this case, stabbing, knife-like pain in the middle of his back and a dull, throbbing pain in the lower back, likely brought on by his dural ectasia. Also? Since he's not really feeling verbose at the moment, what with the trying to breathe through the pain and all, I'm probably your best resource for a run down of what meds he's on and at what dosage.

      So when that doctor walked in and started asking stupid questions like, "So, what are you on coumadin for?", my eyelid started to twitch. Excuse me, did you even read his chart? He's got a goddamn titanium aortic valve, what do you think he's on coumadin for? As she continued the barrage of similarly stupid questions, all the while ignoring me, she grabbed my husband's ankles and pulled his legs down straight on the bed, either not noticing or caring that he cried out in pain as soon as she did so. I had absolutely no idea I possessed that much self-control. So, hey, go me.

     Two and a half hours into our latest misadventure, the nurse finally brought in a dose of hydromorphone to be administered via IV. This brought his pain levels down to the point where he could at least talk to me and after two more doses, we knew it was time to go home, that there was nothing else that could be done for him. The doctor agreed, came in and signed his discharge papers (all the while talking over me when I tried to ask about his INR being at 5.8), and sent him on his way. All in all, a pointless endeavor that served no purpose other than to educate us on that particular ER and its stunning lack of anything that would ever compel us to go there again.

     Oh. Okay, now I feel a bit better. Apparently, I can still relate events as they happen, I'm just struggling with the more abstract things, like my thoughts and feelings on several issues that are floating around our house. So, once I can get my IP address nightmare straightened out, maybe I can find my rhythm again. Maybe it'll calm things down long enough to be able to get the thoughts somewhat corralled into the corners, where I can force them to give me a break long enough to be able to get some solid ground under me. Or something like that.


 My first year of college, I took an introductory debate class. I signed up for it for no other reason than the fact that I like to argue and it seemed like it would be easy enough to pass. I doubt very seriously that I would've chosen that class had I realized that the final wasn't so much a test as it was mandatory participation in the parliamentary debate tournament being held at the end of the semester at a neighboring university. I was barely eighteen and unsure of myself, mostly, except for when it came to running my mouth. That? That I could do with wild abandon and I was apparently quite good at it, as I walked away that night with the trophy for First Place Team, Novice and First Place Speaker, Individual. Who knew?

     So now I find myself becoming increasingly frustrated with my lack of ability to get the right words to come out at the right time and the wrong ones to stay the hell in my head, where they belong. It is, I'm come to realize, a nasty side effect of living with the stress of my husband's disorder and its ensuing adventures. We try so hard every damn day, my husband and I, to figure out just the right place in our lives for the Marfan's, just the right amount of import to assign to it. We've thus far been ridiculously unsuccessful.

     Perfect example? I went to my first North Carolina social event by myself this past Sunday, a Superbowl party. Despite the fact that it was populated by people I knew, or at least had met before, I was nervous. Not because I didn't want to go; I did. My husband had to work that evening, but Adam had called earlier in the day and asked if we'd come, so I said I'd go by myself. Adam's parents, whom I like very much, were hosting, plus I hadn't seen him or Carrie in a couple of weeks and I wanted to. I was happy all afternoon, excited, as I finished up the household chores I was working on and got ready to go. I was even fine on the drive from my house to Adam's parents', despite the fact that I had only the vaguest idea of where I was going. By the time I actually walked in the front door, though, it was a different story.

     There weren't a ton of people inside, and only about half of them were new faces to me. I should've been calm, and honestly, it didn't take too long for me to get to that state of being, to relax and enjoy my friends. The first little bit, though, was anything but comfortable. I think Carrie noticed something was off, because she asked me if I was okay and stayed with me, just catching up, until I felt comfortable enough to move around a bit. At the time, I thought it was just nerves from driving in an unfamiliar area and I told her so, that it would pass. Navigational adventures always have a tendency to trip me out, and I'm still not entirely sure that my unfamiliarity with the territory wasn't part of the shakiness. After a long-ass conversation the other night with my husband brought some things to light, though, I'm afraid it might be a little more than that.

     I think part of the reason I was anxious was because I had no idea what to say about my husband, if anything. I didn't know who knew what and whether or not anyone would ask me questions. Truthfully, I never mind if someone does ask a question, because I'm pretty sure it comes from a place of genuine interest and concern. My issue, though, is that I'm suddenly paranoid that I'm talking too much. For someone who prides herself on her way with words, to be suddenly unsure of your footing in the area which was always safest and surest is a terrifying feeling.

     How long this fear has been festering at the back of my mind is anyone's guess. I talk a lot anyway, but when I'm not entirely comfortable, it's like a damned army of words, coming at you with no end in sight. (This is not to be confused with what happens when I am entirely comfortable around someone, which looks like a very similar phenomenon to the untrained eye. Hang around me long enough, you'll be able to tell the difference.) I just want so badly to find a place for my husband's disorder in our everyday, and I can't find it. Walking that line between making it a mundane thing, like the way someone else might discuss painting their bedroom a different color, and giving it more weight, something that I need to give a quick status report on, is rapidly becoming one of the hardest things I've yet attempted.

     It happens at work, too, and it's much worse there, the paranoia that I've said the wrong thing, said too much. About a month after I started, a disabled gentleman came in and I assisted him. It was a longer process than it is with someone who's able-bodied, but he was great, very polite, and knew exactly what he wanted, which always makes the transactions go more smoothly. At the end of the transaction, I came around the counter, tucked his purchase in his jacket pocket for him and opened the door so that he could wait outside for his transport. When I came back in, my supervisor complimented me on how nicely the interaction had gone. Without thinking, I said, "Well, my husband is disabled, so.." and shrugged.

     Immediately, I wanted to take it back, the revelation that my husband wasn't quite healthy. What if my co-workers were now thinking, "Why did she say that? What does that have to do with anything?" A non-neurotic person would probably not have jumped to that particular what-if, but I'm actually a lot neurotic and the added stress of a third, very unwelcome entity in my marriage has slowly been preying on that weakness, apparently. How I haven't realized it before now is beyond me, but even my busy brain can't cover all the bases and potential bases all the time.

     While we're being completely honest here, I might as well go ahead and admit that I've noticed a tendency to second-guess myself lately after the majority of my social interactions. Was I short and snippy with that person? Was my loving sarcasm lost on this person and they think I'm just being bitchy? Is the worry about my husband's condition today showing through the veneer of smart-assery and rapid-fire talking? I can't get out of my head lately and where once I thought it was just because I'm a stranger in a strange land who simply needed time to adjust, I'm now fairly certain that a good amount of what I'm feeling is due to this razor-wire tightrope I keep trying to walk.

     I think, when all is said and done, I'm going to have to just push through, like always. I will never not live in my head, I will never not be neurotic. It's as sure a part of life as death and taxes, if I may be so cliche. Like everything else I ramble about on this blog, it's going to be something that I'm going to have to learn to work with so it doesn't keep working against me. I think I want to open up to my husband more about this and try really hard to not just journal it to death, maybe getting somewhere, maybe not. Journaling's kind of my thing, my safe place to work it all out, but this time I fail to see how burying myself with pen and paper is going to help me learn to interact with people on a less anxiety-inducing level.

Too Much

I have this journal with a plain black cover that I carry around with me everywhere. This is in addition to the regular journal I carry with me, the one I use to keep my brains from leaking out my ears at inopportune times. The black one was given to me by a friend and instead of using it as a traditional journal, I decided to utilize it as a place to keep all the potential blog entries that run across my brain all day. I've pulled it out in the middle of coffee shops, at work, while I'm in the car with my husband, while at the grocery store, and anywhere else I might have been. I check the entries off as I post them , so I know I'm covered that particular topic or thought, as I don't want to be redundant. Well, not too redundant, as there are topics which require more than one visit. It's an altogether useful-as-hell little book, so why cannot I not just pick it up, pick an entry and fucking go?

     As is often the case when I step away for too long, I've let things pile up inside and I'm having a hard time sorting through the debris. While Charlotte is becoming more and more enjoyable and we're certainly not sorry to be here, it's so far not quite the promised land that we were looking for. Medical bills keep rolling in, blowing my budget all to hell. I finally got tired of running in circles, trying to make pieces fit when I had no idea what the completed picture should look like, so I asked for help. I think it's going to be one of the bigger weights lifted from our shoulders when all is said and done, because I have every hope that my father-in-law will be able to draw a clear picture of what we're working toward and a map to get there. He's a good guy, my father-in-law.

     That's about the only thing I can pick out from the rubble of my head, though. I mean, at any given time, there are approximately 3,265 thoughts all fighting to be given priority, but it seems like the fights have grown louder lately. Mostly I'm trying to figure out what to do about my husband's disorder at this point and it's not going well. Neither of us has any idea what happens next and we're not finding much assistance in the medical community. He wants to explore other pain-management options besides the methadone-and-Dilaudid dance, but finding a pain management doctor who's willing to entertain ideas that stray from the tried-and-true pills is proving more difficult than we thought. Then again, the last time we disregarded the box, my husband ended up in the back of an ambulance, on his way to the hospital to be treated for a mini-stroke. So...make nice with the narcotics, or make with the science experiments and hope like hell the gamble pays off?

     That's it, that's all I've got. Well, that's what I've got that's semi-cohesive and readable. There's more (isn't there always?) and I'm sure I'll get it straightened out enough in the coming days that I can sit down and start sifting through to see if there's anything useful to be had.

Don't Give Up On Me Now

  I know. I've been M.I.A for almost a month now and even though there aren't very many of you who have noticed the absence, those of you that have are so much appreciated that I feel it necessary to update you a bit. I'm still here, my husband still has Marfan's and it's still a bitch and a half; that's basically the long and short of it. I started a new job last month, so that's been occupying a lot of the space in my head, as has trying to get settled here in the CLT. (That would be Charlotte, NC, for those of you not as hip as I. And please tell me you can hear the sarcasm in that statement...) It's a much slower process than I ever anticipated, but I think I'm getting there.

     My husband's bestie Adam and his girlfriend, Carrie, have been a huge part of the reason I'm doing okay with all the newness and for that, I'm beyond grateful. They make up the largest part of the solid ground I'm trying to stand on here, hundreds of miles away from everything I've known thus far. My in-laws are here, too, and I'm a lucky girl in that I don't have anything close to the stereotypical awkwardly tense relationship with them that seems to be the norm in every rom-com ever produced. I'm actually enjoying getting to know them better and I find myself occasionally wishing I knew how to navigate from my house to theirs, just to hang out for awhile in a place that feels like family. I'm sure, sooner or later, I'll figure out which roads lead where and just gift them with my presence from time to time.

     I'm settling in, I think. It's still kind of odd to be in a place where few people know the situation regarding my husband's health because I feel as though we have to start all over again. My new employer, for example, knows nothing of my husband's disorder and all the far-reaching complications that come with it. It makes it difficult when it comes to his various hospitalizations, to be sure. I've only been there two months and so far, that's not been a bridge that I've had to cross. I know the day is coming, though, when I'm going to have to go into my boss's office and explain what's going on, why I need to leave work early or trade shifts with someone so that I can have the next day off. It's not a conversation I look forward to having.

     I don't want to focus on what's down the road right now, not when there's so much that I need to concentrate on right in front of me. I can feel how unsettled I still am and that needs to be calmed before I can adequately tackle the bigger issues. I know I haven't been posting here, but I've been journaling in my paper journal like a fiend and that's a sure sign that something's not right within me. I always go to my little book when I can't calm what's raging inside, pushing at my edges until they're ragged. I'm hoping that I can use this outlet to once again smooth the edges back down, like I used to.

     My sister and I were kind of discussing this while I was home for Christmas a couple of days ago, the move and how my husband and I were doing with it all. Over the course of the conversation, we came up with a theory about the supposed Mayan apocalypse. According to every website everywhere, the world was supposed to end on December 21, 2012, as that's when the Mayan calendar ended. Or something. I'm not an historian, an archaeologist, or anything else that might actually enable me to have the first clue as to what the Mayans did or did not do to cause such an uproar. There was that John Cusack movie that said it was the endtimes, though, so we'll go with it. Lizzie and I came to the conclusion, though, that while the Mayans may have predicted the end of the world, what got lost in translation was that they weren't speaking on a global scale at all.

     Lizzie's world ended, in a very real way, this past summer when she and the only boy she'd ever loved parted ways. She's still not okay from the breaking apart of something so precious; I don't know that she will be for a very long time. My husband's world started the slow descent last winter and got steadily worse as the months went by. His may not have ended as solidly as I feel mine did, but it's forever changed, no doubt. Mine? Mine flat-out ended.

     Sigh. That sounds a bit overdramatic, even if it is accurate. Circumstances beyond my control forced a changing of the tide and I had to start over, building from the ground up in more than one way. I never planned for it, never pictured myself living anywhere this far from my family and friends. The job that I'd held and loved for the better part of a decade is gone and the fact that I left on great terms and can go back to visit whenever I want is small consolation when those familiar faces are no longer the ones that keep me company during my workday. It just doesn't feel like anything is the way it's supposed to be.

     Then again, what do I know about what's "supposed" to be? Maybe this is part of the grand scheme of things and we're right on track. As I mentioned before, there are some seriously bright spots in my life at the moment. Loving friends, a good relationship with my in-laws and a full-time gig that I landed a mere two weeks after rolling into town. Those are all really good things, things that make a difficult time much more manageable. I've still got dark spots, though, places that I have to build back up from the wreck of what was. I think that's something that my husband and I both have to face.

Thursday, April 18, 2013

Alone In This Together

     I was just reading a post on a favorite blog of mine, Offbeat Home, and while not exactly relevant because I am not currently in the middle of a friendship breakup, it made the gears in my head start spinning. Not like they're not anyway, all the time, with absolutely no rest for the wicked, but this time I was able to get some fully-formed thoughts pulled from the din. With my husband as sick as he is sometimes, you'd think that I would require more venting sessions with friends than the average person, just to release the pressure every so often. Following that logic, the same theory should probably to my husband as well. He's got just as much to contend with as I do, if not more.

     The thing is, as much as I run my mouth, as good as I like to believe I am with words, when it comes to discussing the particulars of our ongoing war to live a normal life while contending with what the Marfan's is doing to my husband's body, I can't seem to find the right words. Not in person, anyway. On here? From the safety of my keyboard, I can go on for as long as it takes to quiet the storm in my head. I do the same with my journal, which is my equivalent of a security blanket, I suppose, and is never more than an arm's length away from me. I've filled enough blank books, large and small, slim and ridiculously thick, to fill a sizable wooden trunk that resides in our living room. Why, then, can't I get my mouth to work when it comes to flesh-and-blood interactions?

     I think it's a combination of causes, actually. The most basic of those causes is pretty juvenile in its logic - don't wanna. Essentially, I don't want to think about it when I'm out with friends. I want to be away, a normal girl with a normal husband who is not afraid that his INR levels have gotten way out of whack this month and will have to be corrected by screwing around with the warfarin dosage. I can't state enough how much his disorder latches its disgustingly unwelcome fingers into any and every part of our lives it can reach. Well, guess what, fingers? Fuck you, is what. No, you will NOT follow us to the bar this evening and you may NOT come on vacation with us. Except that somehow, they're always there anyway, waiting in the shadows to clutch and pull when we let our guard down for even a moment.

     Beyond the toddler-logic of "don't wanna, not gonna", is the fact that I have absolutely no idea how to bring it up to any of my friends. If they ask how he's doing, sure, I will gladly update them with as many details as they can stand. But to actually text or call and say, "Hey, I need to just chill somewhere and run some thoughts by you. Wanna go get lunch?" is beyond my social capabilities. I'm used to being the one who helps my friends and truthfully, it's a role I relish. I consider my friends the best of the best, because I try not to let people into my life who aren't genuinely good people, and I will do whatever I can to help them when they need me, even if it's just to listen to them go on about whatever's rattling around in their head at the moment. I like to help people in general and making life just a bit better for those I love never, never fails to make the world feel a little more right.

     I can't seem to allow myself to be on the other end of that conversation, though. I don't know if it's that I've got some stupid idea in my head that I'm the one who helps, not the one who goes to her friends for help, but there's definitely some sort of mental block there. Frederic, one of my very best friends, has been with me since we were seven years old and I can't even bring myself to call him and let it out. There is no major life event that's happened to one or the other that we haven't been by each others' side for and rare is the instance that I call him to chat about this stuff, even when I'm consumed by it and barely able to get my mind to move on to other things. What is that?!

     My husband is no better than I, by the way. I've heard his friends ask him, point-blank, how he's doing following a go-round with the emergency room and his answer is, inevitably, a dismissive "I'm good", or some lame-ass joke that is his attempt to downplay the whole thing. I know it makes him uncomfortable to discuss it and his friends pick up on that discomfort, so in an effort to be supportive and/or not make him feel worse than he already does, they tend to just let it ride. I also know that he too needs to discuss the ups and downs of his health with someone, but, like me, he has not the first clue how to begin that conversation and so holds his silence on the matter. This has the unfortunate effect of leaving friends and family feeling shut out of this part of our lives, which then leads to a greater sense of isolation and causes us to pull back even more from discussing anything Marfan's-related. It's just a lot of ugliness and loneliness and uncharted waters that feel like they're going to pull one or both of us down the minute we stop fighting to keep our heads up.

     And so we're left alone in this with each other. The honest truth here is that absolutely <em>no one</em> in our lives, save his new therapist, has the first clue what to say to make anything better. I don't, he doesn't, our families don't and our friends are, by and large, just as lost as the rest of us. I get the sense sometimes that our loved ones are hesitant to say anything at all, lest it be the wrong something and they end up as the offending party. Maybe that's a notion that my husband and I should try to disabuse them of, as I'm really starting to see that there is no wrong something. Maybe we should also stop being so self-conscious about the whole thing and treat it as just one more part of the day. Would that help with the blockage, perhaps?

     It would be so much easier if our friends sucked, or if I wasn't sure if they were willing to listen. Then I'd have an easy scapegoat, something I could point my finger at and say, "There, that's the problem and it's not me." That would be a lie, though. As I said before, in both my and my husband's case, we truly have the best when it comes to our friends. I know, because more than one has told me to my face, that I need only call and they'll come. My family is the same. I'm half a country away from her, but should I or my husband truly be in need, my sister Lizzie would find a way to get here, be here for us. My parents would, too, without question.

     I'm going to have to figure something out, though, because being the only one the other is able to talk to about this stuff is taking a toll on us, no doubt. It's a push-and-pull dynamic that can erode even the strongest bond over time. My husband and I are so close to each other, so much a team when it comes to his health and decisions that have to be made, that we inevitably start fighting each other for breathing room after awhile. It sometimes feels like being in the safest, warmest cocoon; just us against the world. Other times, it's like being locked in a coffin with someone who's fighting just as hard as you are to get back to the light of day. We can't keep that up forever without sustaining serious damage, I'm pretty sure.

Monday, April 15, 2013


     Oh, Jesus, it's been too damn long since I sat down to get something out. So much has happened, is happening, is going to happen that my poor brain just canNOT keep up with it. I'm feeling simultaneously happy and semi-bummed and excited and anxious and it's going to do bad things to my equilibrium if I'm not careful. The truth about why I haven't been posting very much is because I've gotten in over my head with the technical side of having a blog and I'm still trying to repair the damage. Basically, I switched over to WordPress, thinking that was a good idea, and now I have no idea how to get my domain name routed back to my Blogger account. I'll probably end up calling Google's support team and driving them crazy for a half-hour or so, but hopefully, I can get it all sorted out. In the meantime, if the blog looks weird to you if/when you manage to get here, just...shake your head at my stupidity and wait it out, okay? Thanks.

     So much good has happened in the past couple of weeks and you'd think that would make me happy, nothing but. Unfortunately, I am a far more complex creature than that. I was offered and accepted what's basically my dream job, which is more than I could've hoped for in this job market. I mean, I considered myself lucky to have a full-time gig in the first place, even if it wasn't exactly what I wanted to do with the rest of my life. And then, by some miracle, I was offered a job as a legal assistant working Social Security Disability Insurance cases, among other things. Not only is it the exact type of law I had my heart set on when I went back to school to finish my paralegal certificate, but it's a two-lawyer firm set up in a big, beautiful old house within spitting distance from my front door. It couldn't be any more perfect.

     I'm simultaneously off-the-wall excited and hideously nervous about my new employment, because of the same root cause - I will be directly affecting (hopefully in a positive way) permanently disabled peoples' lives. While it's without a doubt what I want to do with my life, it's also a daunting task because so much rides on every little piece of the puzzle. I know, I'm not the attorney, so ultimately, it's not in my hands as to what the final outcome will be in any given situation. I can tell you, though, that anyone who thinks a paralegal or legal assistant is just a glorified secretary is dead wrong. I'll be the first one to lay eyes on some of that information, and what if I miss something vital? Worse, what if I miss a deadline? The legal world is often an unforgiving one and there's very little, if any, room for excuses. Customer service this ain't.

     I also got some of the best news I've gotten in awhile when my friend Carrie texted me late Saturday night to tell me that she and my husband's bestie Adam were officially engaged! It was one of those moments that just makes you stop and smile and think, "Yeah, life can be so good sometimes." It was something that I had been quietly hoping for for awhile now, though I had never given voice to that wish, fearing that if I did, I'd jinx it and not see things work out as I wanted. I know that sounds vaguely creepy, considering that I'm talking about someone else's life and not my own, but sometimes, you just want what you want. In any case, I somehow got what I wanted. And now that I think about it, I wonder if this means she'll be my sister-in-law of sorts, since Adam is the closest thing my husband has to a brother. Huh. Things to ponder.

    As good as both of those things are, though, I think the very best thing came just before noon today, when my husband texted me to tell me that he'd seen his newest doctor and things had gone well. Before you question why this should-be-mundane item got me all kinds of happy in the head, let me clarify - my husband's newest doctor is a psychiatrist. This is a huge (and hugely sensitive) issue for my husband and I, one which has been causing massive amounts of heartache over the past couple of years. I mean, seriously, it's been a dirty, poisoned knife in our combined side for longer than it hasn't been. The fact that we've taken the first step towards extricating it and stemming the flow of blood from our marriage gives me a sense of hope that's been missing for too long.

     I don't think I'm ready to say more about that particular manifestation of my husband's disorder just yet, mostly because it's such a raw nerve, for both of us. The truth of the matter is that neither of us, nor anyone close to us, is properly equipped to deal with the psych end of chronic illness. To further muddy the waters, it's been a bitch and a half to find someone who's both a) experienced in dealing with depression as a symptom of an underlying physical disability and b) someone my husband actually likes enough to talk candidly with. I may just be setting myself up to be kicked back down, but I'm cautiously optimistic that we may finally have a winner.

     It's a lot of change at once for someone who is such a creature of habit, and I think that's why I'm feeling shaky and overwhelmed at the moment. I'm going to get to go back to Missouri for a few days next week, though, and that should settle things a bit. I'm also supposed to stop by my new office on Thursday so I can take the grand tour and get a little more familiar with the place before I jump right into my work. That should help, too, and it speaks well of my new boss that she would be so thoughtful as to not want to overwhelm me on my first day. I have every reason to believe that this place will be a great fit for me.

     I feel like I should say that all this goodness means the tide is turning, or we're turning the corner, or some other cliched "don't-worry-be-happy" platitude. While that cautious optimism is definitely there, it's a very cautious optimism, almost to the point of being fearful. I know that's no way to live, no way to look at things, but I guess I'm not strong enough yet to just throw every caution to the wind and leap headlong into the light. I mean, yeah, it feels like the sun this time, but that same light has turned out to be, in the not-too-distant past, the fucking headlight of a train rushing to flatten both my husband and I. I'll know which one it is soon enough, most likely.