Sunday, July 15, 2018

Days and Days

     I've had such a hard time coming back to this, as evidenced by my five-month hiatus. It wasn't any one issue in particular that led to my withdrawal, but rather that a whole mess of them had finally reached a boiling point and spilled over. I'm working through them, slowly, with the help of a therapist and an absolutely insane amount of journaling. This, too, this public accounting of what's happening with my husband's health and the havoc that it sometimes wreaks on our life, is painfully important, I've discovered. Without it, I've just become more and more withdrawn, and prone to, "Oh, it's fine." As that mindset is absolutely the last thing that I, as someone who struggles with anxiety, needs, here we are. Again.

      Now that that's out of the way, I can address one of the biggest issues that I was wrestling with in regards to this blog, and the interactions with people I was experiencing whenever I posted about a particularly gnarly day at the emergency room - why was there such a seeming disconnect with what I experienced and what I portrayed in my writing? Or, to be more accurate, why did I feel like there was such a disconnect? What was I doing wrong that led to raising alarms I never intended to set off?By that I mean that I was getting a lot of, "Are you guys okay?" and "I'm here for you if you need anything," which, to be perfectly honest, I did not understand.

     To me, those are the types of sentiments that are reserved for things like a death in the family, or if you receive a terrible diagnosis from your doctor; they're not for things like a hospitalization because your husband is seeping blood into his sinus cavities and no one knows why. And I know, that sounds completely fucked up, because why wouldn't your friends be concerned over something like that, right? Because, that type of thing is par for the course in our household, and the truth of the matter is, my husband and I have become desensitized to it.

     Of course, I've only just now really figured that out, and believe me, for someone who spends as much time in her head as I do, I don't really have an explanation for why it's taken me this long to see what's now pretty damn obvious. But, forest, trees, right? And that desensitization is, I think, what's been the biggest boulder in my path for the longest time, why I couldn't figure out how to do this anymore. Again, it's so goddamn obvious to me now that I can't believe it took me this long to sort it out, but better late than never, as the saying goes.

     I suppose for that explanation to make sense, I should tell you that I tend to be a person who doesn't have a lot of in-between in a lot of areas of my life. For example, my two favorite genres of music are bluegrass and heavy metal/rock, which are two opposite ends of the spectrum. My closet? Except for what I wear to work, the choices are either flowy, soft, Stevie Nicks-esque items, or things that make me look like some weird combination of a Nine Inch Nails/Sisters of Mercy fangirl. In short, there's a week's worth of daylight in between the two. So, with that in mind, it's easy now to see why I couldn't reconcile the two faces of my husband's disorder - it's both very, very serious, and also very, very mundane.

      That's the connection I couldn't make, the truth I couldn't figure out how to convey. So, I just retreated, and stopped sharing our day to day, because I couldn't get it to make sense to anyone but me. The reality of living with Marfan Syndrome is, for us, both of those things - serious and mundane, and all the emotions around both. What I eventually realized was that while they both tend to live in opposite corners of the house, it's still the same house. Serious and scary and life-threatening can happen at the same time as standard and mundane and just-another-day, and that's the piece I couldn't reconcile until very recently.

     I couldn't figure out why people were reaching out to me to offer support in light of events that I didn't think of as anything significant. (To be fair, my husband rarely sees things as super-serious, even when he's the one on Day 4 of his latest hospitalization, so it's not just me.) I couldn't see where the disconnect was coming in, because for me, this is just how it is. We're at the hospital enough that I have favorite parking spots in more than one garage, I have a color-coded planner to keep track of all of my husband's doctor appointments, and we just know that there's always a chance we have to drop everything and run for the emergency room, because maybe today is the day that it's not just back pain, but an aneurysm that's about to burst. I suppose when you live with a shadow in the room 24-7, you learn to adapt to its presence, until it no longer feels like a threat.

     I should have taken into account, though, that most people don't live with that shadow, and so what I view as a factual account of what happened and what could potentially happen, others read with horror, that this is happening to someone they know, and on the semi-regular. I couldn't see that, couldn't see why others didn't read my posts with the same mindset as I'd had when I posted them, which is an absurd assumption on my part. Why in the holy hell would they? More than that, how could anyone else possibly know where my head was at when I sat down? Looking at it now, I'm just amazed at my own obliviousness.

     The good news is that ultimately, I think I'm going to have an easier time of it, now that I've come around to the idea that something can be both concerning and not that big a deal at the same time; the two things can co-exist. I think, too, now that I've thrown it out there, that this is our normal ( if there even is such a thing), that maybe people will be able to read these posts with more of the spirit I intended. I mean, unless I'm unexpectedly gone from work for more than a day at a time, or I'm calling his parents, telling them to catch the next flight out of Charlotte and get to St. Louis, it's a pretty safe assumption that whatever happened is another bump in the road, rather than the car going off a cliff.

Sunday, February 18, 2018


     It's kind of weird to be posting again after so long - five months, to be precise. Looking at the timeline, I can see that my hiatus from this blog lines up with the point that my husband had to stop working and go out on medical leave. I suppose it makes sense that that would be the point at which I put this on the back burner, as the time since then has been essentially one large anxiety-ridden blur for me. My days are spent trying to stay on top of my caseload at work, taking care of my husband, and figuring out how we're going to get to the next week without losing our minds. I only feel half-insane at this point, so victory for me, I guess?

     The main problem I have with not writing for so long is that it all gets backlogged in my head, and it's hard to know where to pick up the threads. Do I talk about me, or him, or both? Do I get all existential, or just give a factual update? What subject do I even land on, because so damn much has happened that I feel like I could type until my fingers bleed, and it still wouldn't be everything? All of the above?

     Fuck it, we'll just see what happens.

     So, my husband was hospitalized about a month ago because of internal bleeding. As anyone who knows me/us knows, he's had a titanium aortic valve for more than a decade and a half, and that bit of aftermarket hardware necessitates the use of warfarin, a blood thinner, for the rest of his life. He's been taking it since the surgery was done, and while there have been a few hiccups here and there, like when an urgent care gave him an antibiotic for an infection in his elbow without realizing that that particular med does not play nice with blood thinners, it's mostly not the biggest issue we have to deal with. He takes it every morning, and gets his INR tested once a month to make sure he's where he should be, which is between 2.5 and 3.5, and we go on with our lives.

     Last month, though, he started feeling very tired, just completely wiped out. Usually, that means his blood is too thin, and the doctor needs to adjust his warfarin dosage accordingly to get him back on track. It's never been a big deal before, and we just assumed that's what was going on this time. He had his monthly doctor's appointment scheduled for a Friday, and thought he'd just get his INR tested, they'd tweak what needed to be tweaked, and he'd feel better in a couple of days. This time, though, was different.

     I came home from work on a Tuesday, and he met me at the door, slightly wide-eyed, and reported that his urine was the color of grape juice. We both knew that wasn't good, but it also didn't alarm us like it might someone who's otherwise healthy, because it could have been any number of things. It's actually happened to him before, and that time, it was due to a tiny, tiny kidney stone that he didn't even know he'd passed. Blood thinners tend to make everything seem much more dramatic than it really is, just by the nature of them making someone especially bleed-y, so we took that into account when making the decision to wait until the next morning to go see his doctor.

     I should also mention that he had a terrible headache, too, which is highly unusual, both because he's just not prone to headaches and rarely gets them, and also because he wears a fentanyl patch, which should have killed any thought of a headache before it began. He and I have been doing this long enough to be able to put two and two together and know with a fair amount of certainty that his INR was way off, and he was probably running thin. Still, that's not what qualifies as an emergency in our household, so he sent a message to his doctor via the app he has that he was coming by in the morning, and I let my office know that I wouldn't be in the next day.

     The process of measuring his INR is a quick one, as it's just a little stick in his finger, and then they put the sample in the machine, and it tells them where he's at. So, I had barely gotten my book open in the waiting room when he came back out, with a weird smile on his face, and told me, "They can't measure it." Um, what? I asked him to clarify. "They can't measure my INR. The machine only goes up to an 8, and when she put my blood in, it just gave an error message." Not good. Not good at all.

     Sure enough, the tech came right out and said that the nurse wanted him to go over to the ER immediately, because it's dangerous to be out and about with blood so thin. Alright, we can do that. His doctor's office is just a couple of blocks from the hospital, so we drove over, and walked straight over to the admissions desk. (After getting through the metal detector and security, because it's Barnes, after all.) As he's standing there, giving the nurse the intake information, I looked over, and noticed he had blood streaming from his nose, which was not a good look. The nurse grabbed a box of tissues to give him, and sent him right over to triage.

     I was damn near certain at that point that this was going to be an admission, not just a visit, and the triage nurse confirmed it. I mean, obviously she's not the one with the power to admit someone, but when you get a patient that's bleeding from his nose and mouth, and very likely bleeding internally, based on the information he just gave you, I feel like it's pretty safe to assume what's going to happen, and go ahead and give the patient a head's up.

     We hadn't been back in the treatment room an hour when they came to take him to radiology for multiple CTs. Of course, the biggest concern was uncontrolled bleeding, because the Marfan makes his connective tissue weak on his best day, and if the blood was now way past being able to clot semi-normally, that's dangerous. They tested it again in the ER, because their machine went a little higher than the one at his doctor's office, but his INR was off that scale, too, so we'll never know exactly how thin his blood was.

     The best way I can describe it as a kind of seeping, internally. Imagine if you were to pour maple syrup on a piece of cloth - it's not going to drip through, because it's too thick, right? But if you pour water on that same piece of cloth, it's just going to go right through, and you'll never be able to control where the water's going. In this analogy, the water is my husband's blood, and the cloth, his tissue/internal organs. That also explained his relentless headache - his sinus cavities had completely filled with blood, and it was seeping down into his mouth and nose, because it had nowhere else to go. Ew.

     Of course he was admitted, and over the course of the next four days, the doctors did what they needed to do to bring him back in range, though that process wasn't without its own complications. See, the way to get your blood to thicken back up is to introduce vitamin K, either orally or intravenously. In my husband's case, they tried the oral method for a couple of days, but it wasn't working fast enough, so they went the IV route. That got him back into a safe range and stopped the bleeding, but then soared right past "safe range" and into equally dangerous territory of too-thick blood. Because why wouldn't it?

     When they finally released him, it was with a prescription for lovenox, which is a fast-acting, injectable blood thinner used to prevent clots. My husband has had a transient ischemic attack before, which some people refer to as a mini-stroke, due to his blood being too thick, and clotting up around his heart valve, so the doctors were taking exactly zero chances this time around. He injected himself with the lovenox twice a day, as directed, while also taking his regular dose of warfarin, in an effort to get his INR both back in the appropriate range, and stable. This went on for about a week and a half, until his doctor felt it was safe to stop the injections.

     At this point, it's about two weeks after the initial incident, and no one has any idea why it happened in the first place. The only other time he's been that far out of whack was the aforementioned incident with the antibiotic, and even then, the INR machine could still give the doctor a number; it was just really, really high. This time, though, no one had any idea how thin his blood actually was, and, even scarier, how it happened in the first place. He had taken no new medications, his dosage on his current meds hadn't changed, and neither had his diet. (If you don't keep your vitamin K intake at a pretty steady level, it can throw your blood thinners off. This actually works in my husband's favor, because it means he doesn't have to eat spinach, which he hates. So, silver lining.)

     It got to the point that the doctor asked me to go home and get his bottle of warfarin, so they could look at the pills and make sure they really were what they were supposed to be, and a pharmacy tech hadn't accidentally put the wrong dosage in the bottle. Nope, they were right, and the number of pills in the bottle was correct, too, meaning my husband hadn't accidentally taken too many. (He's currently struggling with some cognitive issues, and doesn't always remember to take his meds; I've taken over helping him with this.) At the end of the day, nobody has any idea what the hell happened, which is unsettling, to say the least.

     He'd been doing okay for the past week and half or so, and we both thought this episode was behind us, but then he woke up Friday morning with a mouthful of blood. His doctor had increased his warfarin dose since the over-thickening caused by the vitamin K, and we both knew immediately what was probably going on. Sure enough, when he went to the doctor to get it tested, he's once again off-the-charts thin. I thought they would send him back over to the hospital, but the doctor told him to stop his warfarin until Monday, and then come back for a retest. I suppose since they at least know why it's happening now, they're not going straight for the hospitalization route, but it still makes me uneasy. The whole goddamn thing makes me uneasy.



Saturday, September 9, 2017

Keep On Swinging

     So, yeah. I've been MIA from this blog for literally months, which is the longest I've ever gone between posts. Not only am I not over that weird self-consciousness that I talked about in my previous post, (remember that?) so much shit has gone down, health-wise, in the time since then that I'm not really sure where to begin.

     The biggest life change right now is that my husband is currently on medical leave from his job, and has been for the past month, due to the discovery of a cyst in the left lobe of his brain and the multitude of issues that have sprung up around it. To be clear - it's a cyst, NOT a tumor, and the cyst in and of itself isn't dangerous. The problems are seemingly stemming from the stupid thing putting pressure on things it shouldn't be pressing on. I say "seemingly" because we're working with extremely limited information at the moment, though I'm hoping that's going to change beginning this Wednesday, when the first round of neurologist appointments kicks off.

     We realized there was a problem about a month ago, when he had an exceptionally bad day at work, and hadn't had any significant improvement by the next night. At that point, we both thought it was just his spine acting up, because he has dural ectasia, and that shit can do some weird things to your head. I told him I'd feel better if we could run him by the urgent care to be checked out, just to make sure it wasn't some new and improved manifestation of his Marfan's. He agreed, probably because he was feeling like death warmed over, and off we went.

      I need to just pause for a moment to give a quick shout out to the urgent care, because they took care of us in a fraction of the time it takes to get through the ER, and when you spend as much time getting medical treatment as my husband does, you notice things like that. I'm not saying the urgent care is a substitute for the emergency room, but in an instance like this, where what was happening needed to be addressed by a doctor, but not something that was obviously life-threatening, it was great. So, again, thank you urgent care. You rock.

     The issues that had brought us in included vertigo so bad my husband was throwing up, major loss of balance, confusion, and a whole host of other cognitive issues. Of course, the first thing they tested him for was a stroke, but that wasn't the problem. My husband has previously had a TIA, and I knew what symptoms to look for. If either of us had thought that's what was going on, I assure you we'd have been on the way to BJC without hesitation. I know some might condemn him/me/both of us for not immediately going to the ER, but when you're sick 24/7 and life seems to consist of a neverending parade of random, multifaceted medical issues, you learn real quick how to sort out the super-bad from the we-can-just-keep-an-eye-on-this. To get deeper into that is a whole separate post, though, so we'll leave it at that.

     The doctor in the urgent care did the stroke test, and then did that thing with the pen light in his eyes, the one which I assume tests the reactivity of the eye to the light source. He decided that my husband needed a CT, which was fine, because every doctor ever sends him for a CT. Swear to God, my husband's bones probably glow in the dark from all the radiation they've absorbed over the years. So, off he goes to radiology. We still figured it was his spine acting up at this point, that maybe there was a pinched nerve, or that the Tarlov cysts at the base were really wreaking havoc. Nope, turns out it was something completely new and different - a 4.5cm by 2cm cyst under the left side of his brain, just hanging out, causing problems. Maybe. Probably.

     The lovely urgent care doctor couldn't tell us how long it had been there, but not one of my husband's doctors had ever mentioned such a thing before, nor had he ever had problems like this before. What he did tell us was that my husband needed to see a neuro, like, yesterday. Needless to say, this was not what we'd been expecting to hear when we walked in that night. To try and keep his symptoms as controlled as possible until he got to the neuro, they gave him meds to help with the dizziness and nausea, so that was something.

     We've moved past the shell-shocked at this point, and we're onto the gearing up for the many appointments to come phase. Seriously, he's got four different appointments with four different doctors just in the next two weeks, and that doesn't even include the order he just got from his spine doctor to start a new therapy for an entirely different set of issues. I feel like we're both gearing up for something in the coming months, but I'm not sure what it is. Not quite a battle, but maybe one of those choreographed fight scenes. You know, those ones where if you don't get your timing and placement just right, you end up with a black eye or a busted lip. It feels like that, as if we have a very exact sequence of events to execute, and we have to do it perfectly, because if we don't, we're going to be hurting. 

Sunday, June 25, 2017

Beauty in the Breakdown

     You may or may not have noticed, but I use song titles as the titles of my posts. I usually choose a given title because I think it applies to whatever it is I'm blogging about, though sometimes I choose it because it encapsulates what I'm feeling. This time, though, I chose it because it's a term and a concept that actually drives me crazy. I hate it, the whole idea of "beauty in the breakdown," or a "beautiful disaster." (Thanks for that last one, 311. You guys can quit it with the shitty music any time now, thanks.) Breakdowns and disasters are generally bad things, people, not things to be celebrated. While I understand the idea behind terms like those, I believe they're actually more detrimental than anything else. And yes, this is about to get philosophical, maybe even existential, so, in the immortal words of Samuel L. Jackson in the even more immortal Jurassic Park, hold onto your butts.

     I've been thinking about it since my last post, which generated more response than I anticipated. I think that was equal parts the fact that I hadn't written in awhile, the honesty about our life that I tried to keep front and center, and the fact that I am surrounded with some lovely, lovely human beings. Seriously, my best friend texted me not two hours after I posted - "Are you okay? There are a dozen dive bars between your house and mine, pick one." My initial reaction was confusion, because I've written posts that are, in my opinion, much darker in tone than "Pressure and Time", and they've passed by with little fanfare.

     My husband pointed out that, yeah, actually it did sound a little dire in tone, which I didn't completely realize, probably because the words were those of my own choosing, so there's always a comfort in them for me, no matter the subject matter. I always try to be as honest as possible when I put my thoughts out there, and that's honestly what I was feeling, what's living in the corner of our house. As I turned it over in my mind, I came to the conclusion that the reaction was what it was because we are still, in this age of wild oversharing, trained to believe that we keep the truly ugly to ourselves, and only share that little bit which has a triumphant or inspirational edge to it. Which pisses me off.

     Part of the reason I haven't been posting as much as I was is because I've been struggling with an attack of self-consciousness. No idea where it came from, as that's never been a problem for me when it comes to certain things, and this blog is one of them. Still, it's something I've been wrestling with for months, the idea that if I continue to share my and my husband's day to day as accurately as I possibly can, it's going to rub someone the wrong way. I've been trying to move past that, and apparently still struggling to do it, since I'm sitting here all kinds of anxious, even as I type this.

     I think I realized that my idea of what constitutes a "breakdown" probably differs from a lot of other peoples'. Without taking anything away from the seriousness of my husband's disability (and please spare me the "differently-abled" bullshit; he's disabled, according to him, society, and just about every other measure you want to use, okay?), I feel like I should point out that the badness of it, the black cloud that sometimes obscures our future, can and does exist side by side with the happy, healthy me. They're like fucked up twins that reside in the same room, which is otherwise known as my brain.

     I'm of the opinion that it's like that for many people in my situation, even though I don't have any actual data to back that up, just anecdotal evidence. So many days, we're at work, we're shopping, we're meeting with friends, we're relaxing with a book, and the bad things are there, present, but they're quiet and calm, because they've had their moment at the front of the line, and now they're back where they belong. For me, that's in a corner of my mind that's easily accessible, and just as easily closed off, most of the time. Do I have bummer days? Yeah, I do, because those ugly problems that I have to confront as the spouse of a disabled person have to have their moment in the sun, so I can work on them. That's just part of it, in my opinion.

     Being a happy, healthy, functioning person does not mean that I cannot and do not also have very bad days, where I have no idea how I'm going to keep things from crashing down on us, just like I said. The thing to remember, though, is that those two schools of thought are not mutually exclusive; for me, and, I suspect, many others in my position, they coexist, side by side, peacefully, if not happily. I know that's kind of a weird thing to explain, and I don't know if I'm doing it very well, but attempting to explain how one's head works is always an undertaking and a half, I think.

     Not gonna lie, though, I wish it was more socially acceptable to have blue days on the semi-regular without feeling like the weird goth girl crying into her book of shitty poetry. Of, more accurately, feeling like a burden. Since meeting my husband, I've developed various coping mechanisms for the additional amounts of stress and sadness that I experience in my dual roles as his caretaker and his wife. I have a fantastic network of friends, family, and co-workers, and that right there goes further than anything in helping me get through when it feels like everything is on fire and there's no way out.

     I can also disappear into a book and completely forget about reality until I surface, and that's something I've been able to do for as long as I can remember. The other major coping mechanism is my journaling and blogging, which, while some consider to be synonymous, are decidedly different things for me. I've kept a journal since I was fourteen, and those little books have been instrumental in my ability to handle all the extras that come with my husband's disorder. Like this past Friday, when I had to call into work because he woke me up at 5 am to tell me I needed to get him to the hospital, because he was having trouble breathing, and could barely walk. Okay, grab his shoes, grab his cane, and sit by his side in the ER while they ran tests and he dozed off and on for twelve hours. I had a book and my journal with me, and it was just another day. That's how we do that, mostly.

     My greatest hope at the moment is that we can move towards having what I refer to as bummer days without it being a thing. I myself have felt pressure to keep the worst edge of what I'm feeling to myself, to break down whatever our current situation is into bite-size pieces. Over time, you develop a sense of when someone's asking to be polite, and you know immediately not to go too deep, to just skim the surface, and end the update on a mildly upbeat note - "But, you know, it's nothing we can't handle. And it really just brings us closer together!" I do not need to be any closer to my husband; I feel like if we were close enough to decide to spend the rest of our lives together, that should suffice.

     It's not exclusive to people in my position, either; widows, widowers, parents who've lost children. In my experience, it's like there's this unspoken rule that you only get a set amount of time in which to discuss your grief/stress/fear, and then we're moving on to the next subject. And I don't think that comes from a place of meanness. Rather, I believe it comes from a place of discomfort, and people as a whole deeply dislike finding themselves in a situation in which they do not know what to say or how to react. I've seen that face on people, even members of our own families, that clearly conveys they are on what is for them boggy ground, and they want nothing more than to flee to the safety of talks about the weather, or even politics.

     What I want is to not have that expiration date, and for the sadness, the grief, the stress that we all have to deal with, to varying degrees, to not be something that's scary. I think that's where phrases like beauty in the breakdown come from, and why I hate them so much. There's no beauty in breaking down, physically or emotionally, and that's an okay thing! Or it should be, in my opinion. We keep trying to convince ourselves that these terrible things happen because we're going to get something wonderful out of it, like strength, or resilience, or, fuck, I don't know. Appreciation for sunsets? Sometimes, terrible things happen because terrible things happen, and life is harder than it should be.

     While I can understand the lemons-from-lemonades mentality, and the role it plays in helping some people get through, I am on the opposite end of the spectrum. It's actually done me a lot more harm than good, and I eventually had to come around to, "No, there's probably not some great revelation to be found at the end of this suffering; you're just going to have to make the best of a bad situation," before I started to really get a handle on how to cope with each new setback.

     Can't get your head around why your friend is afraid the sky is falling? That's fine, just ask if they could use a night out to go get a drink. And then, if they say yes, follow through. Just sit, for however long they need. Don't be afraid to ask questions, even if you're not sure they're the right ones; just the fact that someone's asking goes a long, long way towards feeling like even if the sky does fall, you can make it to shelter. And though I've seen it elsewhere that people shouldn't try to compare something they've been through or are going through to anyone else's personal crisis, I disagree, somewhat.

     I've always been a firm believer that there will always be someone somewhere who is in a worse situation than you, so playing that game of comparisons doesn't get anybody anywhere; other peoples' struggles do not negate my own, no matter the level of severity. (Within reason, of course. If you tell me you know what kind of pain my husband is on a daily basis because you sprained your back once during gym class in 6th grade, I'm gonna tell you to fuck off with that nonsense.) So if, during the course of the evening, you want to offer your own battle stories, please do. I think that's a great way for people to bridge distances, and help begin to understand one another's struggles. There's a whole lot of relief and comfort to be found in find even the tiniest bit of common ground with my fellow human beings.



Tuesday, June 20, 2017

Pressure and Time

     My husband and I are under crushing amounts of the first, because we are rapidly running out of the second, and I'm beginning to panic, just a little. I rarely admit that, because I'm a firm believer that panic helps absolutely nothing. Besides, there's always been an answer for every situation I've ever come up against. I like to think of myself as pretty clever, and more than that, stubborn, which is a quality that has by turns saved my ass, and placed it firmly in the fire. Depends on the situation. This time, though, I just don't know if we're going to be able to sort this out without some outside intervention. Even then, I don't know that it will be enough.

     We've known for awhile that my husband needs a second spinal fusion. He had a 24-inch fusion of the thoracic and lumbar spine when he was twenty-two, and since that mess of titanium and solid bone is now over two decades old, it's not surprising that the fusion itself has caused some additional damage to his lumbar (lower) spine. It's essentially crushing it, which means it's playing all kinds of hell with the nerves and the spinal column. None of this is news, and it's also the reason why he went to seen his spinal specialist last week. He'd already had to reschedule the appointment twice due to work commitments, so by the time he finally got there, I was more than anxious to hear what the doctor would say.

     It was nothing good, which we were prepared for, but it was worse than we thought, we were decidedly not prepared for. I suppose that's shame on us, for not anticipating the worst, but living like that is beyond draining, and I realized a long time ago that I can't live my life dreading every doctor's appointment. So, I will admit to being somewhat taken aback when my husband just handed me his phone yesterday with his radiology results pulled up on it - Tarlov cysts. Large ones, and more than one of them. Fuck.

     I think I've mentioned this before, but one of the things to remember about Marfan syndrome is that it's a disorder, not a disease, and for a diagnosis to be made, you have to exhibit a certain amount of symptoms, of which my husband has a frightening number. There are also different levels of severity when speaking of Marfan syndrome, and unfortunately, my husband is on the severe end. All this time, we've thought he was going to be lucky enough to avoid these cysts, even after that scare we had in the summer of 2013, but it appears we were mistaken.

     We're still waiting to hear from his doctor to see how this changes his immediate treatment plans, because he is long past the asymptomatic stage of living with Tarlov cysts. Now we know that these, along with the severe spinal degeneration, are what's responsible for the sometimes-white hot pain that burns in his bones. Of course, as soon as I found out, I did what I always do when faced with an issue of any type, and started reading. As far as I can tell, there's really no agreed-upon best method of treatment for these little bastards. and with everything else my husband has going on health-wise, I have no idea what options are even available to him.

    I do know, though, that he can't go on like this. I mean, this is the problem that we always circle back to - how do you keep someone going when the natural order of things says they should have been out of commission a long time ago? Marfan's is a genetic disorder, and no one, not the best doctor in the world, can change his DNA; that's impossible. And so we're left with this, a mad scramble to try and manage the fallout as best we can. It's starting to really pile up, though, and it feels more like we're running and running, as fast as we possibly can, but there's a huge dark wave that's gaining on us, no matter how hard we push ourselves to move, run faster. I'm terrified it's going to drown us.


Friday, March 17, 2017

Nowhere to Run

     I hate dealing with the pain management aspect of my husband's disorder probably more than I hate anything else about it. The mental health aspect is probably my second least-favorite, but even that pales in comparison to the fuckery that is pain management. I hate it, I hate it, I hate it. I can't even think of a clever or non-repetitive way to say that, because it makes my brain want to shut down.

      The problem with pain management as it's currently treated in today's society is multi-faceted, as I see it. The most immediate issue is that it's just not very effective in my husband's case. He had his first spinal fusion when he was only twenty-two, and it wasn't a small one; unlike many spinal surgeries that fuse two or three vertebrae of the spinal column together, his was eighteen inches long and involved three titanium rods. It's the center of his spinal column, the thoracic area, that's fused, and all that hardware is now crushing  his lower spine, or the lumbar area. That, combined with the degenerative issues brought on by the Marfan's, is where the problem now lies.

     He's been on painkillers for more than half his life at this point, and nothing really works very well anymore, as you might have guessed. Anybody who's been on painkillers for any length of time has probably experienced the acclimation to the drugs that comes along with it. Your body can adapt to just about anything, and narcotics are no exception. Eventually, heavier and heavier doses of whatever you're on will be required to achieve the desired effect. In some cases, like my husband's, you build up a tolerance so that your doctors have to start prescribing you things that generally are only used in the worst situations, like the fentanyl patches he currently wears. They don't really do a whole lot beyond keeping the worst edge of it at bay, at this point in the game, but there isn't anything stronger.

      Beyond the practical issues, though, is the one that really puts a bee in my bonnet, as the saying goes - the societal issues surrounding pain management. There's this persistent, pervasive image that it seems like I run into everywhere - people who use pills/patches/needles are junkies, and screw them, because their hell is one of their own making.

     I'll be the first one to admit that yeah, I'm sure that's the case sometimes. Absolutely, there are people out there who would run over their own grandmother if it meant they could snatch her bottle of oxy and get high for a couple of days. What about the others, though, the ones who don't want to be on painkillers, but whose only other choice is to go slowly insane from the pervasive pain that finds its way into every crack of their bones, every wrinkle of their muscles? My husband has told me before that the best way he can describe the nerve pain in his spine is that he imagines it to be what it would feel like if someone shoved a hot flathead screwdriver between your vertebrae, and then twisted it.

      I can't even get my head around what that must feel like, and I like to think I have a pretty good imagination; I sincerely hope I never have an opportunity to experience anything even close to that. And yet, that's what's always waiting, hiding with its bony, wretched fingers just waiting for a chance to dig into my husband's nerves and send them screaming. You tell me - how else can that be mitigated but with heavyweight painkillers? How else do you help someone try to live with a body that's crumbling from within? Sometimes, your only option is to fight fire with fire, or, in this case, fight fire with a synthetic analgesic.

      The fentanyl patches he's been on for the past three years or so have thus far been the most effective method we've tried, not only because it's the most powerful, but because with the time-release method, it's a slow, steady dose with little room for human error. (I say that with the understanding that my husband only uses his patches as prescribed, and I know this isn't always the case with everyone who uses them.) With pills, there's a lot more room for error, even down to a person metabolizing the meds at different rates, thus causing different degrees of efficacy.

     Now, though, it's apparently becoming an issue. For reasons unknown to either of us, his pcp has suddenly decided, after a year of treating him, that he needs to see a pain management specialist in order to continue his current regimen. I know it's not the worst thing in the world, and probably a small issue in the grand scheme of things, but it still leaves a bad taste in my mouth. Pure speculation on my part, but it feels like she wants to be disengaged from the whole pain meds aspect of his care, because they're icky. It's the same feeling I get whenever we go to the pharmacy to get his monthly prescription; it's like no one wants to even handle the box the patches come in.

     I guess then next step then, is to see what the pain management specialist says. I know my husband wants them to figure out a way to get him off the fentanyl altogether, but in my opinion, and maybe I'm way too close to the situation to be able to see things objectively, I don't know how that's going to be a viable option. I know how much he hates the drugs, I know how much he hates the unpleasant side effects, I know he hates that they don't really do much more than keep him propped up. At this point, though, I see them as a necessary evil.

      Consider for a moment the practical implications - what about the time off he'd have to take from work? Even when you're under a doctor's care, coming down off that level painkiller is no joke, and the withdrawal symptoms from fentanyl can come on hard an fast. Believe me, I've seen it - if my husband doesn't change his patch with almost dead-on accuracy, meaning he can't wait an extra six hours or so to do it, if we're not at home, he feels it. Hell, I'm not even the one wearing them, and I can look at him and know if he's running late. Is his employer going to be okay with the sick time he's going to need?

     And once he's done with the patches, what then? It's not like his spine will be miraculously fixed. It's actually a whole lot worse now than it was when he started on pain management. So what's the substitute for painkillers to allow him to live his life? What's the magic bullet? I mean, this is a damned-if-you-do-damned-if-don't situation if ever I've seen one.

      Maybe I'm wrong. Maybe this pain guy, who is already familiar with my husband's case, as he was his pain management doctor previous to our move to North Carolina in 2012, will have discovered some wondrous new treatment that neither of us is aware of. I don't think so, though.


Monday, February 27, 2017

Surrender the Night

     I jinxed us, absolutely. Not twenty-four hours after my last post, my husband and I were back in the ER, and we stayed there for fourteen hours, eventually coming home with no clear diagnosis, but a whole new set of worries.

     He texted me on Friday, just before noon, and said that he was having trouble breathing, experiencing dizziness, and a couple of other not-good things. I had no choice but to ask my boss if I could leave work early, so that I could take him to the hospital. He'd apparently already cleared it with his boss, but I will be the first to admit that I hate having to do it on such short notice. After an incident years ago with a former employer of his, I developed a deep-seated fear of one or both of us losing our jobs due to his disability. So, that's always somewhere in the back of my head, just waiting for an opportunity to come out and wreak havoc on my nerves.

     We both have amazing employers, so logically, it shouldn't bother me as much as it did, but fears and neuroses are about the least logical things I've yet come across, so here we are. Of course my boss didn't mind, so I left to go get him and take him to the hospital. It's been almost a year since we had to go to the ER for any reason, and I was really excited about that, hoping we could keep the streak going. With the symptoms he was experiencing, though, and the fact that he's got a pending surgery in the very near future for the hernia, there was no way we could avoid it.

     "Our" hospital, and by that I mean the one that we always go to, because his specialists are based there, has made a few changes to the way they do intakes in the ER, and while it's not quite the war zone that it was, it's still not great. It took two hours, give or take, for my husband to get back to a room, though he was seen more than once for various things before that point. When they had him in triage, the nurse discovered his oxygen was low, so when I walked in (I had to park in the further garage, since it was completely full in the ER parking), he was sitting in a wheelchair, hooked up to a tank. That's a new one for us, so there's that.

     Over the course of the next twelve hours or so, he was tested multiple times by multiple doctors for stroke symptoms, because that's what everyone was concerned had happened. My husband has had two TIA's in the past, and once you've had them, you're always going to be prone them, as I understand it. Plus, with the blood thinners, there's always a chance that his INR is off, and that's also dangerous, as it could also lead to a TIA. The ER physician called a neurologist in for a consult, and for awhile, it looked like they were going to admit him. Completely understandable, given his medical history and the suspicion of a neurological issue, but not something either of us really wanted to happen.

     I actually really liked the neuro who came in to see him, which was a pleasant surprise, given that any time we've been in the ER, it seems like it's about a 50/50 chance of getting someone who's nice, or someone who's an indifferent dick. I mean, we had one of those, too, early on in our visit, but he only came in one time, and then never showed up again. Probably that was due to a shift change, but I like to think it was because the powers that be knew I was already in a bad mood and didn't want to make me deal with a jackass who nearly hit me with the door when he came barging in, and talked over me, not to me. (My pet peeve in ER's, by the way.)

     They took my husband back for a CT with contrast, which I knew they were going to do as soon as they said they had to rule out a stroke. An MRI is much more detailed, but since he's so full of metal parts, my husband can't have them anymore, because he just reflects all over the place and they can't get a usable picture anyway. Also he's convinced that the magnet in those machines is going to pull his heart valve out of his chest, which is fucked up to imagine, but which will probably not happen. (I think St. Jude's valves are safe for MRI's, but again, I'm a paralegal, not a doctor, so probably don't take my word for it.)

     The CT came back clean, meaning they didn't see any evidence of stroke on it, which was one weight off our shoulders. The relief didn't last long, though, because in the next breath, the neuro told us that what they had found was that there's apparently a spot at the back of my husband's head that where spinal fluid is pooling. He didn't think it was related to the Marfan's, which is good, I guess? I mean, we're so used to everything being just another monkey wrench thrown by my husband's disorder that neither of us ever really considers something going wrong outside of it.  Our bad, apparently.

     The doctor let us know that since there was no evidence of stroke, that while he couldn't rule it out completely, it was way down there on his list of diagnoses, so he was going to let him go home tonight. Considering it was already almost one in the morning, I don't really see what the point of admitting him at that point would have been, anyway. The catch, though, was that my husband was going to have to follow up with neurological department, and they'd already notified his specialists' office of what was going on, so they could sort of monitor the proceedings.

     I know the moral of the story ought to be that we're grateful to have such a good hospital, with such competent specialists, right in our backyard, and we are. Every time my husband goes to the doctor, even for mundane things like getting his INR tested, I'm grateful that we have a strong Marfan community here in StL. The overrriding emotion at the moment, though, is not gratitude, but frustration that it seems like the Marfan syndrome isn't enough for us to handle, but now we have whatever this new spinal fluid pool issue is. I mean, it wasn't enough that we have 87 plates spinning in the air, now there's an 88th? Fuck that noise.

Thursday, February 23, 2017

The Line Begins to Blur

     You'd think that by now, my husband and I would have a firm grasp on how to handle health issues as they come, as well as his Marfan's in general. You'd be wrong.

     We're currently facing down another unexpected surgery, because he was getting ready for bed last Thursday and discovered an umbilical hernia, like it had every right to be there. Keep in mind, neither of us is a medical professional; I'm a paralegal in a personal injury law firm, and he works in IT for an accounting firm. So really, neither of us was qualified to make that diagnosis, especially at 10:30 on a Thursday night, but I feel like we've got a enough of an idea between the two of us that we know when something's seriously wrong, as it so clearly was. And what did we do? We went to sleep and figured we'd deal with it in the morning.

    I know some might think this wasn't the best idea, considering that a hernia can be a major problem on an otherwise healthy person. While some people can and have lived with hernias for years, others have found themselves in the emergency room because it turns into a strangulated hernia, which is bad news all day. A hernia is particularly problematic for my husband, because it's easy for it to keep growing in size, and fast. Should we have gone to the ER as soon as we suspected? Maybe, or maybe we did the right thing by waiting and calling his doctor in the morning. I never know, is the problem.

    I think the biggest problem that I have yet to figure out a solution to how to assign the correct level of urgency to the various emergencies and semi-emergencies that populate our life together. When you live a life that includes as much medical care as his/our does, you learn pretty damn quickly that not everything can be an emergency room visit, for practical reasons.

     If you've never spent a significant amount of time in an ER, I'll tell you right now it's not somewhere you really want to become intimately acquainted with. We always go to one in particular, because they know what Marfan syndrome is, and as soon as they pull my husband's chart, they know who to consult for whatever it is we're in there for, because his specialists are at this hospital. Trust me when I say that an ER that knows what they're looking at with him could be a matter of life and death - Jonathan Larson, the playwright who penned Rent, died days after he first went to the ER with symptoms of an aortic dissection. The doctors diagnosed it as stress, or the flu, when in reality, it was most likely undiagnosed Marfan syndrome. And now you know my worst nightmare, and why we always go to the hospital that knows him; it's like Cheers, but for not dying.

     Anyway, while it doesn't normally take a long time to get back to the exam room to be seen, because as soon as my husband mentions his medical history, the nurses do NOT fuck around in getting him treated as fast as possible. Then, once he's back there, it's always at least one round, if not more, of diagnostic imaging, because no one wants to be the doctor that missed an aortic aneurysm, even if that's not what we're there for. Gotta check, every time, just to be sure.

     It takes a long time for all this to happen, and we're never home before 3 or 4 in the morning, at which point, we both usually have to call in to work, because neither of us is a functioning human being at that point. Plus, even though he has health insurance, it's still a $100 co-pay every time, so that's a consideration, too.

     All of that actually takes about 7.6 seconds to process in our heads when making the decision whether it's a real emergency or not, if you can believe that. It just something that you get used to, kind of, and that's what happened when we talked about what to do with the newest problem. I guess we did okay by waiting until the next morning to call his doctor, though I got the impression than she was less than pleased. Apparently, she didn't even have to fully examine my husband before deciding, "Oh, yeah, that's definitely a hernia, and we've definitely got to fix that. You're getting scheduled for surgery."

     Surgery is one of my least favorite things when it comes to my husband, because it's so goddamn complicated, even for something that should be simple, like a hernia repair. Remember, though, he's on a pretty high dose of coumadin because he's got a titanium heart valve, and you can't operate on someone who's on coumadin. No, see, what they have to do, is put him on a fast-acting injectable blood thinner called Lovenox. Pulling him off one medicine and getting him regulated on the other is always a pain in the ass, and it's been the cause of no end of stress in the past.

     Then, once they have that under control, and can actually do the surgery, we have another potential hurdle in that he's prone to spontaneous pneumothorax, or a collapsed lung, and which happened on the operating table while he was having his spinal fusion done about twenty years ago. So there's that. The potential for uncontrolled bleeding is my least favorite part of the whole circus, though, and it's also the reason he'll have to have a more traditional incision rather than have this done laparoscopically; it doesn't make any sense to me, but apparently the potential for bleeding is less with a regular incision. Go figure.

     So here we are, trying to get this surgery and all the accompanying issues straightened out, all before this hole in his stomach gets any bigger, and I still can't help but wonder if we've somehow lost our way when it comes to differentiating between a this-can-wait issue and a we-need-help-now situation. That line, the one that's thinner for us than it is for most people, is constantly changing, moving. Sometimes he or I or both of us can see it clearly, and other times, we're taking a shot in the dark and hoping for the best. I'm still not sure where we're going to end up on this one, honestly.


Thursday, February 16, 2017

Baby, You Can Drive My Car

     Yeah, it's been a minute. To be completely honest, I'm still feeling overwhelmed by the recent presidential election, and I haven't figured out how to not let the circus in the White House encroach on my days, so I'm a little off-kilter. I'll figure it out, I just haven't quite gotten there yet; it's a terrifying time for those of us in the disabled community, and that's not hyperbole. Still, it's a worry to write about another day, mostly because when I try to get my thoughts in line, it comes out as nothing even close to coherent, so there's that. The more immediate issue is the fact that my husband and I have to replace his car, and it's about the least fun thing I've done in awhile.

     I came into the marriage with a 2007 Mazda6 I named Fancy (don't judge), and I love her dearly to this day. My husband drives her most of the time now, as his Pontiac died in the middle of the highway one July night about five years ago. We replaced that car with my current Mazda3, which is really too small for his 6'5" frame. I mean, he can get in it, but it's not comfortable, and he's almost wrecked it a couple of times, because the pedals in my little car were never meant to accommodate size 17 feet. So, the plan was, we'd just keep Fancy until the wheels fell off, and replace my car with something larger, so that he could drive either car and we wouldn't have to worry about switching cars. Plus, my 3 is a bit temperamental, and it made sense that we would replace that one first when the time came. Shockingly enough, things did not go according to plan.

     As it turns out, we need to replace the 6, and it's proving to be a little more involved a process than I've previously experienced. Obviously, we're looking at another Mazda6, because we're pretty loyal to the brand, and we know the car fits him. Beyond that, though, other little considerations have started cropping up that neither one of us ever considered before now. For example, could the car he drives have any effect on his back, good or bad?

     A Mazda6, while a full-size sedan, does sit lower to the ground than, say, a small SUV. It's no sports car, don't get me wrong, so it's not like he's trying to crawl out of the driver's seat from five inches off the ground. Honestly, though, even I sometimes feel like I need to be hoisted up out of it if I'm really sore from going to the gym or something, so I can only imagine what he feels like. A small SUV, like a Mazda CX-5, might be more suited to him, as the height means he's stepping out of it, not pushing up from the seat. I know this seems like minutiae, but I promise - it's the little things like this that can have a profound effect on someone's life. Anecdotal evidence - my father has a bad back, has for years. My parents bought a new car, one that had an adjustable lumbar support in the driver's seat, and suddenly he was able to go eight months or more between cortisone injections. I have no idea if it was the new car or not, but he swears it was.

     Something else that we're considering, which we both always considered a luxury waste of money, is a back-up camera on the car. Full disclosure - my husband and I were the first ones to lead the charge of, "Why does anyone need a back-camera? If you can't park it with just your mirrors, you don't need to be driving it!" He pointed out though, while we were perusing the dealership's website, that if we had a back up camera on the car, we wouldn't have to switch seats every time we pull our car into the garage, which is what happens now. His spine has a 20-year-old fusion that runs about eighteen inches, and he hasn't been able to turn around since he had it done. So, in our current situation, he pulls up to the garage, switches seats with me, and then I back the car in. I know it seems like a tiny inconvenience to most, but it's again one of those things that could make our lives just a tiny bit easier, and any help is welcome.

     The other thing that's led us to consider a small SUV instead of just another sedan is the fact that we absolutely have to consider what will be easiest to transport a wheelchair in. This is the part of the conversation my husband least likes to have, but it's the most necessary, in my opinion. The truth is, between the breaking down of his ankle tendons and the utter shitshow that is his spine, he can only comfortably walk about 100 yards unassisted on a good day. That means, if we want to go to the zoo, which he dearly loves, or the mall, which he decidedly does not, or any other thing that's not just walking from the house to the car, we need to take a wheelchair. He's finally given in on that point, though he will never accept it, and we're going to purchase a travel chair for him to use so that he can come with on family outings, instead of having to sit somewhere while the rest of us go explore.

     I absolutely hate the car-buying process, as does my husband, and I have to say, the additional considerations he has as a disabled person haven't made me love it any more. I do think, though, that if we're smart about the car we end up with, it could maybe have a trickle-down effect on the rest of our life, however miniscule. 

Monday, November 21, 2016

Not Fade Away

     I've been in a state of shock/anger/mourning/disbelief since the election, and many of my friends and family are in the same place. I was going to write much sooner, but I couldn't stop my thoughts long enough to get a coherent sentence together. It's still a struggle, but keeping away from social media and 24/7 news sites helps; there's just too much for me to process right now, and my anxiety levels are through the roof. I'm not going to get into ninety-nine of the one hundred reasons I desperately didn't want the current president-elect to win that title, because that's not what this blog is for. Right now, I'm taking it one issue at a time, and looking at this through the lens of my husband's disability.

      The first thing my husband said to me once we realized the election results showed a picture we couldn't believe was true, was, "Well, I guess I'm officially just a useless cripple again." I could have cried, and if I wasn't so stunned by what I was seeing on CNN, I probably would have.

     For me, I suppose it goes back to seeing the current president-elect at a campaign stop mock a physically disabled reporter. Are you kidding me? The fact that he a) did that in the first place, and b) that it didn't stop people in their tracks from considering him a viable candidate for the leader of the country just kills me. Does the disabled community really mean so little to our society as a whole that this open and ugly mockery passes by without significant comment? That's what my husband took from it, what he felt when he saw it - that he was not valuable, that he was not a contributing member of society, and that he was not worthy of respect; the actions of our fellow countrymen just validated those feelings, in my opinion.

    Beyond the practicalities of what this administration may mean for people like my husband and I, what does it mean for us on a more personal level? I can tell you it's certainly changed how I view those family members who I know voted for the Republican candidate, and that has nothing to do with his political affiliation, though those who know me know I'm much closer to a liberal Independent than I am anything else. I am not dead-set against any affiliation, and even though I disagreed with almost every opinion our most recent Republican president had, I still thought he was an inherently decent man who believed he was doing the right thing with the choices he made. No, it has everything to do with actively supporting someone who so clearly does not value or respect those in the disabled community. To them I say, "How could you?"

     I'm not interested in rationalizations, I'm not interested in hearing about how you want "change". At what cost, though? What price are you willing to pay to bring about that incredibly vague "change"?  Are you willing to forgo basic human decency and love for your fellow man to achieve the end result? Are you willing to step on the backs of some of our most vulnerable to get what you think you want? I think you are.

     I think that deep-seated dislike for and distrust of the disabled (believe me, it's there) that exists in our society at large has been given a legitimization, and a face, and a name. I don't think it's any one face or name in particular, but there is now more than one in power from which you can choose. Now, you can point to someone and say, "See? He did it, and it's not that bad, it was just a little thing." The hell of it is, though, that it's NOT a little thing, and it IS that bad. My husband is a goddamn human being, with feelings and friends and value. He's worked hard since he was sixteen years old, and even now, though he would easily qualify for Social Security Disability, he works. He gets up five days a week, whatever level of pain he's in, wherever his head is at with regards to his anxiety and depression, and he does it.

     Part of that is practical, because we simply can't survive on one income. I know many, many people think that there is a whole section of society that just collect disability checks and live like kings, but that's not actually how it works. Maybe I'll get into the details of it all at a later point, but not right now. The bigger part of why he does it? Because he lives in fear that if he does, the rest of the world will then view him the same way he sees himself - useless, a part of the population that's nothing more than a nuisance to be dealt with. The great irony here is that, despite his best efforts, it's happened anyway.

     We've talked about it many times since November 9th, and we've both agreed that it's changed how we see people. Our friends, our family, strangers, doesn't matter who. I myself am having a very difficult time with close family members who say they love my husband and I, and would do anything for us. I don't doubt their love, but I'm not sure if it's the same love I thought it was. You say you'd do anything for us - anything but stand up and add your voice to ours when push comes to shove?

      So, even though I just want to disappear into a book for the next four years, I have to keep working, keep talking, keep trying to move the conversation along. The tiny, tiny, tiny silver lining that comes from this is that it's given me a renewed sense of drive to keep up with this blog on a more consistent basis. I know how very tiny my corner of the internet is; I'm not delusional, just pissed off, sad, and scared. As they say, though, one tiny spark can become a fire, if you don't let the light go out.