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.