Sunday, March 16, 2014

Jesus Christ Pose

      So after I discovered those semi-unkind words yesterday, I thought that a blog post, a long drive and some time spent talking about it with my husband would get it out of my system. Yeah, not so much. It bothers me, the judgment that others so freely passed on my decisions regarding the best way to handle my husband's frequent emergency room trips; I thought the point of the exercise was to find and support one another. There were dissenting voices, of course, ones who seemed to understand what I was trying to say. Essentially, I believe that figuring out how to deal with a chronically ill spouse is something the only the ones in the relationship can really make the call about. No one else is that close to it, no one else really knows all the repercussions, or what works best for the other's state of mind.

     I talk about it because I want to help other people in the same situation as me not feel so alone, if that's indeed what they're feeling. I talk about it because it's nothing to be ashamed of, and maybe the next guy down the line doesn't quite have the words to explain what's going on in their head. Okay, borrow some of mine. I talk about it because if I don't, I would have lost my mind and my ability to cope a long damn time ago. Also I have a lot going on in my head at any given moment and if I didn't let it out here, I'd just find someone's ear to bend with all my noise. This is really the better option for all parties (potentially) involved.

      I'm not a stupid girl. I know and have known since whenever that the world is comprised of 8,000 different opinions on every topic under the sun; as I've said before, that's the way of the world. However, when confronted with the goddamn self-righteousness that I felt seeping from some of the comments about an earlier post of mine, I couldn't shake the disgust. Really, you're going to sit in your ivory tower and "pray for me", that I might realize the error of my ways, which I will surely come to regret? I'm inclined to tell people like that exactly what they can do with their prayers, but that would be rather impolite.

     Instead, I'll ask them to climb down off their cross for two fucking seconds and consider, just for a moment, that the motives behind that way of thinking might be something less than selfless. I can only speak for my situation, for what my husband and I feel about the matter, but I doubt very seriously that we're alone in our thinking. Let's look first at the idea of "in sickness and in health". Simple words to most, a phrase in many marriage vows that most don't even contemplate, even as they're saying them. What do they really mean, at the bottom of it? Stand by one another when they're not feeling one hundred percent, take them to the doctor when they've got the flu, that sort of thing? Yeah, for most. It's not even the tip of the iceberg for couples like us, though.

     To go into that concept too much more deeply would change this post, because it's a complex issue, but suffice it to say that I think that phrase is naive at best and setting people up for failure at worst, because the sickness part of the equation can wreak so much more havoc on your life that you ever dreamed. It's nothing like what you think, not even me, someone who knew her soon-to-be-husband was chronically ill. There's no way you can possibly know what you're signing on for and when it hits the skids, you either hold onto each other, or you let go and hope you land with most of your pieces still intact. Luckily, my husband and I have so far opted for the first option.

    The reason my husband and I have decided that it's unnecessary for me to accompany him on each trip actually has a lot more to do with him and his well-being than it does me. Yes, I fully admit that the desire I have to stay in bed and get what sleep I can on nights when I have to get up at 6:30 in the morning in order to be at work on time. I also admit to not wanting to get up and sit in the cold ER room, getting in the nurses' way and struggling to keep my eyes open. But do you know what the number one reason is that sometimes keeps me at home while my husband gets pumped full of painkillers? I don't want to make him feel any worse than he already does.

     Yeah, about that. See, without going too much further into territory neither of us is ready to share, one of the symptoms of Marfan's that we deal with on a daily basis is the amount of guilt my husband carries around for, you know, existing. Take a minute to just process that, let it sink in. That he feels bad for being, for the extra everything his disorder forces us to confront and accommodate daily. It's something we're working on and the words "complicated situation" are so disgustingly inadequate, it's not even funny. But there it is, the reason I don't always go with him for every single medical outing. I love him too much to cause him more pain by forcing myself into those moments for no other reason than to feel good about myself. Get it now?

     While I can't speak on every situation and can't say that it holds true for everyone in my situation, because I'm sure there are couples out there who need to be with each other for every treatment, doctor's visit and hospitalization, we are not one of them. It's not because I'm selfish, or weak, or only thinking about how many hours of sleep I've got left before the sun comes up. It's because I'm thinking of him, how it's only going to make him feel worse to see me in the hard chair next to his hospital bed, knowing that he's the reason I'm there, not warm and sleeping. I'd have register somewhere on the heartless scale to ignore the extra weight my presence sometimes brings.

      Anger aside, (because I'm still feeling a healthy mix of pissed off and frustrated) I just can't help but wish people would think before saying some of the shit they do. I know that's never going to happen, and I accept that, I really do. In fact, somewhere under the irritation is gratitude for the different opinions, because without them, there would be no discussion. Doesn't mean I'm going to keep quiet about it when I see something slightly judgmental directed at me and mine. I'm going to continue to fight like hell to open peoples' minds to another way of thinking, that maybe just because it's not the right course for you doesn't mean it's wrong. It means just that - it's not right for you. 

     I'm not sorry for my irritation, I'm not sorry if this post comes across sharper and less balanced than some others. It happens. I do my best to look at all sides of a situation, usually, but this time? No. This time I'll say that those who want to hold me up as a template of things they'd never do can hammer those nails with all the strength they can muster; I won't lessen my resolve to do what I know is right for me and my husband. It won't make me feel weak or guilty, because I'm neither.

Saturday, March 15, 2014

Head Up High

     Honestly, it was bound to happen sooner or later and the fact that it's taken as long as it has just means...something. I don't know what it means, but finally reading the first semi-negative things about my blog and what I write was a less than pleasant experience, absolutely. I'm not thin-skinned by any stretch of the imagination, (I never would have made it through high school as relatively unscathed as I did if that were the case) but it sucks, hard, when the exact sentiments that I'm fighting against are used in commentary about my and my husband's choices regarding how we handle his disorder. It's frustrating, seeing in black and white the mentalities that push at me, make me question my decisions. It makes me wonder if my place here is doing any good for anyone after all, or if it's just a space for my voice to echo back at me.

     Here's the thing - I don't really know the best way to respond to criticisms like that. Does it even warrant a response? I mean, the first rule of the internet, as far as I'm concerned, is don't feed the trolls. Ever, under any circumstances. The more I think about it, though, the more I believe that rule probably doesn't apply, because the comments made weren't bratty 14-year-olds whose greatest thrill comes from antagonizing strangers from the safety of their keyboard. On the contrary, I get the sense that every opinion given was given with the best of intentions; there were none that were mean-spirited. Still, a couple of them rubbed me exactly the wrong way.

     My husband was playing around on the internet earlier, as he often does, and discovered that one of my blog posts had been re-posted to a Facebook page for people with Marfan Syndrome. That's fantastic, because that means more people have a chance of finding my tiny corner and reading something which might help them. It's happened before, and it makes my day every time. However, this was the first time something I've written has been taken as a negative thing. I'm not going to post the link to the page, because that's just inviting trouble, and I never want to be the one to draw a line in the sand over this, however inadvertently. Suffice it to say that a few of the commentators thought I was making a mistake in choosing not to accompany my husband on every single ER visit, going so far as to imply that perhaps I don't understand the meaning of, "in sickness and in health."

      Right. Even after taking a few deep breaths and posting what I thought was a well-mannered, intelligent response, the urge to erase it and instead post the more succinct, "Um, fuck you and the horse you rode in on," was waaaaaay too strong. So I tried to write this instead, got as far as the first paragraph and realized I had to get my head straight before I let ugly impulses take over. Solution? A quick trip down this two-lane road that runs past my house down to Charlotte, with "Sabotage" on repeat as loud as I could make the stereo go. (If you're unfamiliar with the song, do yourself a favor and go pick up a copy of Ill Communication. You're welcome.) It helped, a lot. 

     I know there are always going to be people whose opinion not only differs from my own, but who actually hold the one that I'm diametrically opposed to; it's the way of the world. I knew that going into this, so the only surprise here should be that it took this long for me to encounter it. The initial surge of intense irritation can be excused, I think, because I'm human, after all. If that point of view, the one that says people like me should suck it up and just be the support system no matter the personal cost, bothered me enough to start this blog, it only makes sense that when it's used to directly address my specific situation, and in so condescending a manner that the idea of, "I hope she doesn't regret her choices," is the main idea, it's gonna piss me off, however temporarily.

     The thing of it, though, is that that's okay. It is totally, one thousand percent alright to be pissed about that, just as my whole philosophy that I'm a person, too, with equal needs and wants, not just a part-time wife, part-time caretaker is okay. That's really the whole goddamn point of the exercise! I felt, when I first started looking for support groups, and still feel, as I continue to search for others like me, that the pervasive idea of, "Look how great life can be even though my husband/wife/partner is sick! It's just made us stronger, look at our smiling pictures!", while not wrong, was rather restrictive. It doesn't allow for the ugly, the unsure, the scared, the selfish. 

     Those emotions and thoughts, the ones I frequently talk about, those deserve just as much room at the table as the supportive warm fuzzies. It's a big enough table, I swear, I'm just sick of seeing the more unpleasant parts of being partnered to someone with a chronic disorder like my husband's get elbowed into the dark corner. That's what I find, almost every time I go looking for like-minded individuals. We talk to each other in private, maybe commiserate over email, and while that's awesome, because I would never want anyone to feel pressured to talk about their feelings in a public setting if it they're not ready to, I think there are more people like me than one might suspect. I think it's just that they might get tired of being pushed to the corner and made to feel, however unintentionally, like a freak. Or worse, like they're somehow less for having those types of thoughts in the first place.

     When I think of support-type groups for people like my husband and people like me, I see khakis and business-casual dresses and polite conversations in rec centers and hotel meeting rooms. I don't see the kids like me, with questions and doubts and fears for both themselves and their loved ones. I want to believe that there's acceptance for all of us, because there should be. We all deal with this in the manner that best suits our families, our lives, even our individual happenings. So why isn't it acceptable that some of us need to talk about the rougher parts, and choose to handle things in a way that might not be so agreeable to others?

     Look, while I've never in my life been in a physical fight and don't anticipate being in one, oh, ever, I will say that running my mouth has gotten me into plenty of trouble and made the years between twelve and seventeen a lot less smooth than they could have been. In any heavy issue I've ever seen and/or been a part of, someone has to be the dirty little punk with the scuffed boots who says what they're thinking and never mind those who think it's impolite. While it hasn't always been me,  it has been me on more than one occasion and I'm happy to do it again now. I want to open the dialogue, I want there to be a place at the table for us, I want there to not even be an "us", because aren't we all in this together? 

     And that's the crux of it, right there. Why does it have to be, "I hope she realizes what she's doing by not being there for every.little.thing"? Why go there in the first place? Can't it just be, "Damn, that's a tough call to make, I'm glad she and her husband have found something that works for them?" Some part of me will always feel like that dirty little punk running off at the mouth, but my hope is that someday I can run my mouth from the table, side by side with all the other opinions. Maybe I'll even wear a nice dress to do it.

Monday, March 10, 2014

Safe and Sound

     It's been a week now since my husband came home from the longest hospitalization he's had since we've been together. Hell, it's almost the longest hospitalization he's ever had, period. Even his aortic valve replacement surgery only landed him in there for six days, half the time of his incarceration this time around. I get why they kept him so long this time, even if I'm not one hundred percent sure it was the right course of action. Then again, since we're more or less winging it when it comes to his treatment anyway, the decision to admit him for almost two weeks was probably just as good as any other.

     The thing is, since Marfan's Syndrome isn't that common a disorder in the first place, and people who are affected by it to the degree my husband is aren't exactly known for their longevity (or they weren't, hopefully that's going to change soon), it's difficult to know what to do to treat the increasingly-odd symptoms that he keeps presenting with. It's essentially one giant, drawn-out science experiment whenever my husband goes to the hospital with something new and God only knows what the end result is going to be.

     I know that sounds harsh and I swear, again, I don't mean it to be. I wish sometimes that I could either just speak directly to everyone who reads my words so that they can hear the spirit in which the words are said, or learn to shut up so that it wouldn't be an issue. Since neither of those two things is going to happen anytime in the near future, let me just say this. I have the utmost respect and gratitude for the various medical personnel who have taken care of my husband over the years. They're far, far better at this than I am and I don't claim to know a fraction of what they do. That said, it often feels like we're living in a Petri dish and people are just waiting to see what happens to the little creature living it in when they add two drops of this and four of that.

     The experiment turned out pretty well this time, even if the steroid injection failed. See, the problem this time around was that they knew there were cysts of some sort on my husband's spine, but they couldn't see how many or what type they were without doing one of two tests - an MRI or a myelogram. Both of those are normally handled as outpatient procedures, but we don't do "normally" in this family, so instead, my husband took up temporary residence on the fourth floor of the hospital near our home.

     MRI is the acronym for magnetic resonance imaging, a type of x-ray, to really oversimplify it. It doesn't work on people like husband, because all the surgical steel implanted in his body interferes with the magnets and throws off the results. So that's out. That left the myelogram, which I discussed last time, why it's a pain in the ass and why it was our only option.

     It went as well as could be expected, I guess. It ended up being kind of a fail after all, due to the fact that the dye that had been injected couldn't really travel down him spinal column like it was supposed to because of all the bone growth around the titanium rods that were implanted almost eighteen years ago. They ended up sending him to get a CT with contrast, since the dye was already there, and that ended up being the thing that told them what they needed to know - we were looking at multiple cysts, they weren't Tarlovs, and they're benign. For now.

     It was decided to let sleeping cysts lie for the time being, as the less work the doctors have to do on my husband's body, the better, since he's a shitty surgery candidate and doesn't heal well anyway when he does have to go under the knife. As happens sometimes, the doctors apparently decided to apply the in-for-a-penny-in-for-a-pound way of thinking and just did a steroid injection while they were in there, seeing as how my husband's blood was in the sweet spot where they could safely do a puncture. It was kind of an afterthought, something that could help alleviate the pain shooting into his legs.

     It was still another week before he would be released, because after the T.I.A in 2012, the doctors weren't willing to take any chances and declined to bridge him back to his warfarin with Lovanox shots, which is how it was done the last time it was necessary to do a lumbar puncture. Twice now, he's been bridged that way, once for the first steroid injection and once for hernia repair surgery, with mixed results. And by "mixed results", I mean the first time turned out fine, but the second attempt led to a mini-stroke. Win some, lose some, I guess.

     Technical explanation for what I just described, in case anyone cares? Essentially, my husband had to be pulled off his long-term blood thinner, warfarin, in order to get his blood to thicken up to the point that it was unlikely to seep into his spinal fluid. Now, as soon as it hit that point, the procedure had to be done and my husband had to start the process of thinning back out to somewhere between 2.5 and 3.5. This process was completed before by using Lovenox, a subcutaneous injection that my husband would give himself twice a day. This time around, though, it was decided that it would be safer to bridge back to warfarin with a heparin drip so that the nurses could keep an eye on him while we waited for the numbers to climb.

     It took longer than expected, because why wouldn't it, but he eventually hit 2.5 and at that point, Dobby was free! Pack up your shit, grab the discharge papers and let's get the hell out of here.

     For whatever reason, I had a hard time with the hospitalization this time around, and was so far past ready for him to come home with me it wasn't even funny. I'm grateful, though, that we went the supposedly safer route this time, because no one likes mini-strokes. They're just un-fun. I don't know for sure that this methodology was the right way to get the job done, because the doctors who treated him before were damn good and I don't know who's right. Maybe the T.I. A was a freak thing, maybe it was because he used the shots to get his INR levels back to where they needed to be. I doubt even the doctors will ever know for sure.

     Hopefully the experimentation pays off one day and we won't have to go through this song and dance every time something like this pops up. Even if it never pays off for us, maybe it'll help some little kid somewhere who's just starting on this highly confusing, intensely frustrating path of unwellness. Maybe for them, it won't be the same road littered with glass shards to dodge and razor blades to avoid. Maybe, if we're insanely lucky, the creature in the Petri dish will  end up safe at home next time we come across this type of trial instead of riding it out in a hospital bed.