Tuesday, December 16, 2014

That's the Way

     I almost always have Pandora playing when I sit down to blog, probably because it helps distract a part of my brain enough to let me focus on getting things out in a cohesive order. Tonight, for example, AC/DC and Guns N Roses are doing a fine job keeping me entertained and happy. I know it's nine days before Christmas and I should probably be trying to get in a more seasonal mood with any of the dozens of Christmas stations Pandora has ready to go, but what can I say? Power chords make me cheerful. And right now, despite the fact that I've worked late every night for more than a week and likely will continue to right up until my office closes for Christmas, I'm happy. I feel good about my husband's health and the the general state of our corner of the world for the first time in months.

     A lot of that has to do with the fact that he's still rocking right along with his fentanyl patches, and even his primary care physician was delighted with the length of time he's been able to stay out of the emergency room. It's no small feat, let me tell you, what his medical professional has been able to accomplish with those innocuous-looking strips of plastic. Nobody in St. Louis managed it, despite their best attempts, and it took damn near a year in Charlotte before we stumbled onto this new plan. Not that I really care who figured it out or how; we were at the point that a juggling monkey could have walked up to him and suggested a magic potion and we probably would have tried it. Exhaustion and desperation does weird things to your head, kids.

     Still, that's not the main reason both my husband and I have been in such a good mood lately, a downright festive one. (This is a particular accomplishment for my husband, who's generally rather Grinch-like when it comes to the holiday season.) This year, we make what was probably a not the wisest financial decision, but one that feels better and more right than just about anything we've done in a long damn time - we tried as hard as we could to make Christmas as awesome as we could for a family back home, because they wouldn't have had one otherwise, and neither one of us could stomach that.

     See, the main newspaper in St. Louis, the Post Dispatch, runs a series every year around the holidays, The 100 Neediest Cases. I remember seeing these even as a little kid, and every year, I was always heartbroken reading about these families, many of whom were in dire situations due to medical issues and disabilities. (Most people have no idea how the extra bills that are part and parcel of less-than-stellar health can blow your budget out of the water; we know that fight.) We always participated in what many call an Angel Tree at the church I attended as a child, and I know my mom routinely collected the clothes and shoes my sister and I outgrew in order to donate them, but that was about as hands-on as I could get at that stage of my life.

     My parents were never what you'd consider well-off, or hell, even financially stable. We were, and are, lower working-class and still somehow, my sister and I grew up mostly ignorant of the challenges my parents faced on a weekly basis, compounded further when my father's cancer was discovered the summer I was twelve. My dad underwent radiation and chemotherapy to try and shrink the tumor before undergoing surgery that fall, and still worked 40+ hours a week, because we had bills to pay. Even after learning, much later, that it took them over a decade to pay off the tens of thousands of dollars of medical bills our pitiful-at-the-time health insurance didn't cover, I still consider us lucky, because there are a hell of a lot of people out there who don't have a fraction of the support that my family had and will never be without.

     They may not have been well-paid, but at least  my parents both had full time jobs with benefits, and a safe, warm home to live in, one that my dad, along with assorted cousins and uncles and friends, built on the property that my mother inherited from her grandfather. My sister and I may have had our closets supplemented by hand-me-downs from our cousins, but our clothes were always clean and presentable, and we never had to worry that there was a limited amount of food in the house. That's so often not the case for a lot of families, though, and it seems like it always hits hardest at Christmas.

     A few weeks ago, I was reading through the list of the cases, and I just couldn't stand it. I could not in good conscience sit in my warm house, albeit a rented one, and not do something. I fully admit that I was crying as I read through the cases, in part because I'm just a bleeding heart in general, but in larger part because I saw in those families my husband and I. If the cards had fallen just a little bit differently, it could have been our story in that newspaper, and I had to stop and give way to the thought, "There but for the grace of my family go I."

     If you look at that list, (and you should, I linked you right to it) you will notice that the recurring theme, the one that rears its head over and over, is poor health and disability. People so often take it for granted, the ability to get out of bed every morning and earn a living, however large or small. They take it for granted that they don't have to figure out  how to pay for expensive medications AND their children's school supplies, They don't consider what it might be like to face the almost-impossible choice of going to the emergency room to get treatment for the excruciating pain or going to work in spite of it, because if you miss another day, you're out on your ass. It happens every day, every damn day, and it seems sometimes like no one sees the obvious common denominator.

     I see it, and it's one I live in fear of. When my husband lost his job a few years ago, we were scared, no doubt. We had bills to pay, plus the additional cost of the health insurance that we now had to pay for in full, but couldn't go without, because no. The Marfan's causes waaaaay too many problems to risk a performance without a safety net. In my heart, though, I knew we wouldn't go without food, without shelter, without his medicine, because our family and friends would never let that happen, not in a million years. My faith God may be questionable at best, but my faith in my family has never wavered.

     So with this in mind, I called my mom, who works for a non-profit that offers assistance of many kinds to disabled individuals in my home county, to find me a family that my husband and I could help. I told her it would need to be a family, either parents or a single parent, with one child, because my husband and I do not have a great deal of disposable income, and I knew we couldn't take care of more than that. She found someone for us, a young single mother and her little girl; the mother had added her name to a list along with hundred of others, hoping to be "adopted" so that her daughter could have something to open Christmas morning.

     She didn't even ask for any toys or fun stuff, just warm clothes and a pair of slippers. As my heart broke for the 582nd time, I discussed with my husband the woman's requests, and we decided that we were going to do everything we could to give them a great holiday. We probably went too far from a practical standpoint, spending money we don't really have to spend, but neither of us can bring ourselves to give a damn. The truth is, between my student loans and my husband's outstanding medical debt, splurging a bit isn't going to make much of a difference in the long run, so why not just go for it head-first and make someone happy? More, why not take the opportunity to take care of our fellow human beings as best we could?

     I mean, we've made progress on his med bills, with the current balance, while still in the ugly range, better than it used to be, and we've (mostly) made peace with my school debt. So we celebrated by sharing what we've got with someone who has even less, through no fault of thier own, because it could so, so easily have been us. I really believe we would be less than productive, accountable members of society if we ignored that could-have-been and just shook our heads sadly at the situation. Also I'd feel like an asshole.

     Now we have a lovely box of stuff to send, things that I really enjoyed picking out for this family's Christmas. It makes me so happy to think of these two in their new Christmas jammies (pajamas, for those of you who do not remember being five years old), watching their new movies and just enjoying the day; that scenario has kept me going through a really rough week at work, and my husband has told me on  more than one occasion that he's happy we could help. Normally, my neuroses would be screaming right about now, freaking out about the money spent when we're trying so hard to get things paid down, but I've heard not a peep out of my head, not once. It's just peaceful and warm and content in there.

     I will say, I wish there didn't have to be a once-yearly event like Christmas for people (myself included) to think about things like this, because it's a 365-days-a-year struggle that so many face. I think it's important to bring things like this to light (Shocking! She wants to talk about unpleasantness!), that just being a more concerned, conscientious member of society can bring such rewards. In my case, it's a happiness and a calm I haven't felt in forever, and a reminder to be check my attitude when I feel like venting frustrations needlessly. If others can keep moving forward through hardships with a smile on their face, there's no excuse for me not be able to do the same. For my husband, it's a sense of being able to help someone when he so often feels helpless. Here, at last, is something he can understand and relate to, someone he can do something for. It's a good feeling, for once, to feel like we can actually do something for someone else.


     

Tuesday, December 2, 2014

Dark Side of the Moon

     I have thought about this post since almost the beginning. I have turned it over in my head, cracked the door to the room where it lay, walked away time after time after time. It's been the biggest elephant in the room in a parade of pachyderms, the one topic that was too finely edged to be able to share with the world. I talked to my husband about it last night, as I have on many previous occasions, and even though he reassured me that this is something he wants, that it's even necessary, I still hesitated. I still felt the need to text him earlier and ask again if he was really sure this was okay, and he said to me, "I stand by what I said - no one talks about it, it doesn't get fixed.You can open all the doors you want. Hiding it doesn't do anyone any good." Verbatim. That was pulled directly from my phone. So let me be very, very clear right now, crystal, even - my husband is the one who made the hard choice to tell this piece of our story; I'm just the messenger.

     For him, I would keep this buried, no matter how many thoughts on the subject I have, or who I think it might help. He's reached a place, though, where he feels the need, the desire, to talk about it, and let it be talked about. I think that stems from an acceptance that was won of a long, hellish battle, and a need to have it accepted by others.  This is a turning point, a huge, huge step for him, and a measure of freedom, because it's hard work keeping the demons locked in the basement; those bastards have a tendency to break through with alarming regularity. The fact that my husband is able to keep going, day after day, in spite of the war that's raging, marks him as one of the toughest people I've ever met, and certainly one of the best, because I know that the biggest reason he does it is because of me. The words don't exist to explain how much I love him for that alone.

     That said, may as well jump headfirst down the rabbit hole.

     My husband has major depressive disorder, and has had it for years. It wasn't diagnosed until relatively recently, but it's been there for decades, lurking. It's been the ugliest of monkeys on his back, that one of the many facets of his physical disorder is a mental disorder, mostly because of the astonishingly deep stigma that surrounds mental health in general. It's also a kick in the teeth because he always felt that his brain was the one thing he had going for him, the one thing that he could keep in shape, the way another might work to shape their abs or their arms. When it finally hit home that there was something wrong there, too, it was a much, much harder blow than any that had landed before. He told me once that he had a moment of, "What, my body has failed me, now my mind has, too? Rude."

     In my husband's case, his depression was borne of his physical issues that are the result of his Marfan's Syndrome. He wasn't officially diagnosed with the Marfan's until he was eighteen or nineteen, and even then, even after he had three titanium rods bolted to his crumbling spine at age twenty-two, even after his weakening aortic valve was replaced with yet more titanium in the form of a St. Jude's valve, he was still mostly okay. There were hints of what was to come, moments when he would think to himself that he would never have a family, that he possibly wouldn't live past thirty (before my husband's heart surgery was a widely-used treatment for the aortic enlargement that's a dangerous trait of Marfan's, the average age of survival was around thirty-two or thirty-three, says the all-knowing Google), and those are the kinds of thoughts you don't just shake off.

     It was still very manageable, imperceptible to almost everyone, until a few years ago, when his health really started going downhill at a frightening rate. We didn't know what to do, the doctors had no firm answers, and things were just all-around bad. We were newly-married, and I think he really started questioning his decision to ask me to marry him. I mean, try to see it through his eyes. I'm eleven years younger than him anyway, so that's already a bit of a head trip. Then he had to watch, night after night after early morning after weekend, as I racked up countless bedside hours with him. He saw me go to work sleep-deprived, he saw me working on my college coursework in his exam room in the ER, he saw me writing pages and pages in my journal, knowing that I was trying to let it bleed onto the page instead of onto him and our marriage. He watched it all, and felt helpless. More than that, he felt responsible. How could anyone live with that and come away unscarred?

     It's a cruel reality of chronic illness, one that I rarely see addressed, that the physical hardships often lead to mental ones. I've been by his side for the past half-decade, to dozens of specialists, pain management doctors, primary care physicians, emergency rooms, urgent cares, and damn-near anything else you can think of. I saw it pushing him further and further into a no-man's-land of deep depression, until finally he reached his breaking point. After that, he did seek treatment for the psychological aspects of his disorder, though I'm not sure how successful any of it has been. Hell, at one point it even resulted in yet another overnight in the hospital due to a bad reaction of the anti-depressants and his regular meds.

     I have to pause for a moment and make something clear - when I say my husband's depression is another facet of his underlying disorder, Mafan's, I am speaking ONLY about my husband. For millions of people, major depressive disorder is a stand-alone diagnosis, one that warrants serious and immediate treatment, just like any physical ailment would. Please don't take what I'm saying to mean that all people who have Marfan's have depression, nor that every person who has both Marfan's and depression should associate one with the other. It is entirely possible for someone to be diagnosed with both, and one have nothing whatsoever to do with the other. I can only speak for my husband and myself, and his specific medical situation; I would hate for someone to read this and walk away thinking, "Oh, that one girl who blogs about her husband says that his depression is related to his Marfan's Syndrome, so mine must be, too." No. Stop. Bad. Take as much or as little from this blog as you want, as long as it's not that I'm trying to diagnose or direct treatment over here. Okay?

     I suppose the main reason I wanted to talk about this was because of my and my husband's ever-increasing frustration with the state of mental health care. I mean, Jesus. It's taken almost four years to even be able to admit that my husband has a mental disorder, because it's such a dirty word - mental disorder. People are so forgiving of the physical, sympathetic like you would not believe, but the mental? No. That's not a thing we talk about, not even those closest to him. My mother, for example. God love her, the woman has zero boundaries when it comes to talking about my husband's health. She has no qualms about asking things like, "Has he had a BM today? I know he was on an IV drip of dilaudid, so he needs to watch that." MAMA! Could you not?! The depression, though, that's another story altogether.

     She knows it's there, most people who are close to us know it's there. It's not just something that's only discussed in hushed, hurried conversations, though, it's flat-out not discussed. I'm pretty sure the impetus behind that is a steadfast love for my husband, and that's what makes it bearable. Nobody in his life wants to make things worse than they are, nobody wants to feel more helpless than they already do, and mental health is one of those things that very, very few know how to handle with grace. I'm including trained professionals in that assessment, because my husband has been to no less than five different psychologists since his diagnosis, and not one of them knew what to say to him.

     I mean, I can't really hold it against them too much - I live with him, know him better than anyone, and still, there are moments when I can do nothing but hold his hand and let him know that whatever else, at least we're together, and that's not nothing. The problem, though, is that the less opportunities he has to talk about it, the more he turns inward, and the more isolated he feels. That feeling of isolation feeds the depression, and deeper into the shade he retreats. There's no good answer for it, not that I've come across, and therein lies one of my biggest frustrations.

     There is so, so, so much more to say about this, and I'm going to get there, because we're now officially past the point of no return. One of the reasons my husband gave me the go-ahead to share this was because he's finally getting to a point of taking it for what it is - just another part of the whole, like his back pain or his blood thinners. My hope is that by talking about it like I talk about every other part of his disorder, it will lessen the impact it has on his/our life. I know we can't kill the monkey, but I'm thinking we can sure as hell loosen its grip.

Sunday, November 2, 2014

How Soon is Now?

     I've been dragging my feet about getting back to this, and the honest truth is, that's not the least of the things I've been dragging my feet about. My husband's health has been relatively (always, always relatively) stable since April, thanks to the glory of the fentanyl patches that he's been wearing since then. We haven't been to the emergency room since then, and he's only had a handful of days where the pain in his spine was too much and he had to call into work. So maybe that's part of my complacency, that the waters are finally calmer than they've been in a little over three years. It's really difficult to not allow yourself to relax in the lull when you've been fighting hurricanes for a long damn time, but still, I think my break's gone on a bit too long. I've got my breath back and my feet under me, so it's time to move forward.

     A big part of that moving forward is going to be embracing the sea change that I know is coming, because my husband and I are working towards bringing it about. We're finally ready to start looking towards permanency, which is going to require answering questions that neither of us wanted to address before. I don't necessarily think that was a bad decision, tabling a lot of the discussions many people have early on in their relationship, because we have a different situation than many. For a long time, my husband's Marfan's syndrome and the constant circus that surrounded it occupied so much of our time, so much of our available brain capacity, that we were in no position to be making decisions about houses and children and paths that can't be changed once embarked upon. We've made a lot of mistakes in our time together while we were stumbling along, but luckily, getting ahead of ourselves has not been one of them.

     We're currently working on the housing situation, as we've finally come to the point in our journey where a permanent residence makes the most sense for us. Actually, it's more than that - we've realized that purchasing a house, as opposed to the renting that we've always been most comfortable with, is going to be kind of essential in the coming years.

     Our decision, like so many others, has of course been influenced by my husband's debilitating disorder. We've been renting homes since we've been together, and never felt the need to make such a large and permanent purchase as a house, which I realize is in direct contrast to what many other families consider to be the natural progression of things. I mean, we weren't ever sure about where we wanted to settle permanently, and owning a house makes moving to a new place a lot more complicated than just telling the landlord, "Hey, we're gone in sixty days." There was also the financial aspect, which scared the ever-loving hell out of us, and kind of still does, but I don't think that fear ever goes away completely.

     The tipping point came when we were talking about where we might be in the next five years and we realized that he's got at least a 50/50 chance, if not greater, of being unable to work at that point. The fentanyl patches he's currently rocking, while fantastic, are really no more than a narcotic band-aid; by that, I mean that they're by no means a cure for what ails him. Rather, they're just keeping him propped up and (mostly) functional for the time being. However, he will at some point develop a tolerance for the drugs, probably faster than most people would, since he's been on and off of different pain management since he was twenty-two. When that day comes, it's essentially the end of the line for his career, because there is no stronger painkiller than what he has right now. Well, short of walking around with an IV of hydromorphone, but that's a bit impractical Also it's hard to fit an IV pole into the car.

     His mobility, while hit-and-miss right now, will be even more diminished in the coming years, and anyone who's ever dealt with a mobility-limiting disorder will tell you that there are some specifics when it comes to housing that you kind of  need to adhere to. The most important issue will be finding somewhere that has everything he needs on the first floor, as steps will not be do-able after a certain point. It will also need to be wheelchair-accessible from the outside, as well as having wide enough doorways and hallways to accommodate said wheelchair, because, while not a set-in-stone certainty, it's a very, very, very, very strong possibility.

     It will be challenging enough to find such a dwelling that we can afford in an area that will allow me to get to and from work with relative ease, so we decided probably we shouldn't complicate matters by continuing to rent. If we rent, we're not in control of what happens to the property, and there's every chance of being told, "Hey, the owner sold this place, so you've got sixty days to get your shit and go." That's daunting enough task when you're both able-bodied, but when one of us isn't? Nope. And then we'd have to look for another place that doesn't have a huge yard to take care of, and has everything on the first floor, and has wide-enough hallways and doors, and no. After taking all of that into consideration, we realized it's going to be easier to try and work our asses off while we can to save a down payment, and plant ourselves.

     And then there's the kid question. It's something we've been talking about for awhile, whether or not it's even feasible for us. We've gone so far as to discuss it with my husband's Marfan's specialist, who went over our options with us, and has us set up to speak with the genetic counselor next time we're in StL. Priority one, according to the doctor (and also us, but it was nice to hear the validation) is a healthy child, i.e, no passing on the jacked-up gene that results in Marfan's syndrome. Granted, this leaves us with pretty limited options for expanding our family, but there are still a few.

     In what may be one of the few silver linings of his illness, my husband realized that his not being able to work may actually work in our favor if the decision is made to produce/adopt a child, as he would be able to be a stay-at-home dad. This would work on a number of levels, not least because my husband's palate is remarkably similar to that of a 3-year-old's most days, and he loves very few things as much as he loves afternoon naps. So there's that. It's a very faraway, someday-maybe thing, but the conversation has at least been started, and that's HUGE.

     While I would love to say that I came around to this stop-watching-ANTM-and-get-off-your-ass mindset by myself, I can't. I mean, I've known I've been treading water for awhile, but I still wasn't in a place where I felt the need to do something about it. And then I got an email from the other side of the world that reminded me that I don't have infinite amounts of time to ponder and dream about this stuff; at some point, decisions need to be made and action needs to be taken. Everything changes, sometimes overnight, and in ways you never saw coming.


     Remember a couple of months ago, when I wrote about a message I'd received from a young woman whose husband had been abruptly taken from her due to suspected undiagnosed Marfan's? I emailed her back, and offered as much as I had to give, which was, in my view, pitifully little in the way of comfort. I found another email waiting for me the other day, and I'm so happy to know that she's still standing, and more than that, seems to be moving forward. I wanted, more than I can remember ever wanting anything, to know that she was okay, or at least was going to be okay, and it seems that she will.

     She told me that she felt as though we two were both trying to stay afloat in similarly uncharted waters, and I couldn't agree more. Though our experiences aren't exactly the same, we both have a common bond in that we don't fit the typical mold of a widow and a partner to a disabled man, respectively. I'm grateful to have had some part, however small, in her search for a way to be at peace with the tragedy that she woke up to. She's also started her own blog, which I just linked to if you clicky-clicky those words, and I think you should definitely go see what she has to say. Hers is an important point of view, one that, like my own, I don't think we see enough of.

     It was her email that reminded me to look at what I have right in front of me, rather than just waiting for "someday" to make plans. Everybody says they know that tomorrow's not a given, but I don't really think they do. Hell, I know I don't give it the weight it deserves, and I should damn well know better. As sick as he is sometimes, even when he's hospitalized, the possibility of my husband not coming home from the hospital just doesn't always register. And while I know I can't let that fear take any sort of priority in my brain, neither should I be someday-ing us into doing nothing, because we have to live while we can. It sounds so very, very simple, but then, why does it so often take a devastating loss to remind us of that?

Sunday, September 28, 2014

Still Beating

     I know. As one of my best friends likes to text me from time to time, "Been a long time since you came around." I haven't written in almost two months, with nothing at all for the month of August, which hasn't happened since I started this blog back in 2011. It's not that I don't have anything to say anymore; I do. I've got just as many words as I ever had, just as many thoughts, and just as many frustrating/frightening/disheartening misadventures as ever. I think I've just been treading water for awhile, trying to figure out which way to go to get our lives on track to where we want to be, and this outlet has fallen a bit by the wayside.

     As far as my husband's health goes, we're in a pretty good place right now. He's currently rocking a 50-microgram fentanyl trasndermal patch, which has been the best solution we've yet come across. His wonderful, amazing nurse practitioner suggested it, along with an oxycodone prescription for breakthrough pain, and it's been a minor miracle. I mean, it's not a cure or a solution for the chronic, sometimes-incapacitating pain by any means, but it's keeping him propped up. Until he goes in for his next spinal fusion, that's about the best we can hope for, that the right combination of narcotics will keep him upright. It's not perfect, because there's a plethora of issues that go hand-in-hand with being on the level of painkiller (continued use of fentanyl patches is usually reserved for, like, end-stage cancer patients, if that gives you an idea of what we're dealing with), but it's the right choice for us at this exact moment in our lives.

     We also just got back from a week-long trip to St. Louis, where he had his annual check up with his cardiologist/Marfan guru Dr. Braverman. A full-body CT with contrast was performed and came back good, no evidence of any weak spots or aneurysms, which is always a good thing. Marfan's patients are particularly susceptible to aneurysms, due to the lack of fibrilllin in the body, and the nasty little creatures tend to be asymptomatic until they rupture. At that point, there's a fairly good chance it's game over, so we'd like to try and avoid that scenario if at all possible.

     The CT combined with the echocardiogram which showed no issues with his titanium aortic valve means we should be good to go in the cardiology department for at least the next year. So, that weight can safely go on the back burner for awhile while we continue to navigate the trickier waters ahead of us, both related and unrelated to my husband's health.

     I think, though, that maybe coming back here and writing will be helpful to both my husband and I in plotting our next steps. We can't tread water forever, and more than that, we don't want to. I want to come back to rambling here, I want to open up my email to find messages from places of the world I'd never imagined would care about what I had to say. And there's stuff I need to work out, stuff I hope other Marfan kids might be able to help us with.

     For example, we were watching a show last night about a kid with a rare disorder. The little boy had been diagnosed at birth, and had been in treatment for it ever since. His particular disorder was one that included physical abnormalities, and when he spoke of how the other kids at school would make fun of him sometimes (the kid was maybe 8 or 9), it must have triggered something in my husband's head. He said to me, out of the blue, "Sometimes I think about how much different it would have been for me if I had a diagnosis when I was that young. I wonder if it would have made it easier."

     We've been together just over half a decade now, and that was the first time he's ever said anything like that to me, so it kind of stunned me, if only momentarily. I'm still working on getting cohesive thoughts together about that, and also it's 11:21 at night, so I'm not going to get into it right now. My point is, things are as good and bad as they ever were, and I missed being here. The logical solution then, is to stop missing it and start running my mouth. Again.
     

Sunday, July 27, 2014

Humans Being

     As someone who runs her mouth a lot more than she probably should, it's rare to find me at a loss for words. It's never mattered if I'm speaking them or writing them - they're always there, waiting to be brought into the light, coherently or otherwise. Right now though, I'm struggling like I never have before - I've just had someone reach out to me for help that I have no idea how to provide.

     I logged into my account and found that I had a comment waiting for me. Usually, I publish them after a quick read-through to make sure it's not a troll's ramblings, because I like the different points of view that I see. This time, though, I decided not to publish, because words were damn-near physically painful to read, both in their content and their sense of grasping for something that I don't know how anyone eventually finds, because so many don't. The comment was left, you see, by a young woman whose husband was lost to her just a few days ago. Cause of death? Undiagnosed Marfan's. And now my nightmare is front and center.

     I've already sent her a private message, the contents of which will stay that way, but I'm continuing my thoughts here, with the hope that something that pours out during my dialogue with myself will offer her an answer or a comfort that I didn't think of previously.

     When I read her message, saw what it was and what she was asking me for, which was help trying to understand what had just happened to her, I didn't feel a weight of responsibility. Instead, it was a disbelief, a strange lightness that this could NOT be happening, not to someone like me, someone even younger. Then my bleeding heart kicked into overdrive and I couldn't get to my email fast enough. I hope, more fervently than I've ever hoped for anything in recent memory, that I was able to convey my sympathy, my sorrow, and my sincere offer to provide a willing confidante. If I was someone who believed in prayer, you better believe I'd be on my knees right now, begging any god who'd listen for comfort for a stranger.

     It's my greatest fear, what she wrote to me about. I'm always, in some part of my heart, in a constant state of terror that one day, my husband will be taken from me long before I'm ready. And yes, I know that everyone dies and everyone who loves someone faces this eventuality - I understand how biology works. The fear I'm talking about is one that springs from knowing too many statistics about survival rates for Marfan's patients, knowing too much about what happens when an abdominal aortic aneurysm goes undetected, knowing too much, always, about what's wrong with my husband's body and never enough about how to fix it.

     I want to let the rest of it sit in the back of my mind for awhile, mostly because I don't want the other thoughts I've had about this particular fear to be tied to this post. It's not really about me or my husband, not completely, not this time. My heart's bleeding, but only a part of the bloodletting is for me and mine; the vast majority is for a girl I've never met, who's somewhere in the world and found something, something in my words that drew her in during what are surely the darkest, coldest nights of her life. I don't know what it was and I don't care, I am only extremely grateful at this moment in time that I must have done something right and provided a light in the blackness.

     I know I've referenced this quote before, but Ms. Dickinson was exactly right when she said, "If I can ease one life the aching, or cool one pain, I shall not live in vain." God, I hope I did, even just a tiny amount. 

Wednesday, June 25, 2014

Killing the Blues

     One of the things I struggle with when I sit down to type up one of these posts is whether or not I should censor myself, just a bit. Actually, no. That's not really accurate. I think what I really struggle with is the decision of whether or not I should run my words through a rose-colored filter, or just unleash them. If you've been reading this blog for any length of time, I'm sure you can easily answer the question of which way I normally turn. In fact, I'm having a hard time thinking of a time in which I deliberately dulled the edges of whatever it was I was writing about, good or bad.

     When I'm happy about something, I'm pretty clear about it. Likewise, whenever something's bugging me, or my husband and I have had a bad time at the emergency room, I'm not subtle about that, either. That's kind of been my thing since I started foisting my opinions upon the general populace, that I wanted to be as honest as possible about what my husband and I experience over the course of our many adventures (and misadventures) with Marfan syndrome. I know that horse is dead as Moses, but I keep circling back around to it because, as much as I hate to admit it, it's definitely caused me to doubt myself.

     My endeavor here has been to create a place where people can discuss, or even just read about, every part of what it's like living with a chronic illness occupying space in your house and your heart. I've been at this for a little more than three years now, and I still haven't found someplace where I feel okay giving voice to the uglier thoughts that circle; it's just not done in polite society. Well, it's not done in certain forms, I guess. If you put those thoughts in front of music, it's more likely to be palatable, but generally speaking, people have enough going on in their lives that they tend to look for things that make them forget the rent's due and they don't have the money to cover the check.

     I get that, I really do. There's enough bad shit in most people's personal worlds that they don't need any more added to it. At the same time, though...I think there's a huge difference between bitching about things of little-to-no-consequence because that's become your habit, and trying to be honest about something that's a huge part of your world. Take note of that last bit - honest, not negative. Yeah, those two things can run in a very close parallel, but I promise, it is never my intention to complain just for the sake of hearing my own head rattle.

     This whole subject matter is something that occupies a constant space in my brain, and frankly, that's valuable real estate that I could be using for something else, so I'm trying to evict it. I saw a video posted on an acquaintance's Facebook page that kind of addressed this issue and though it was clearly meant to be humorous, it made a hell of a lot of sense. I'm always afraid that I'm too much of a Debby Downer when I post here, that because I don't always write about how my husband's had a GREAT DAY!!! and we're FEELING STRONG!!! that people are going to walk away. It's why I give more thought than I should to what posts have preceded whichever one I'm currently working on - have I been too angry/sad/frustrated lately? Maybe I should temper that. Shouldn't I? Or should I just go with what's going on today?

     I keep a plain black journal with me all the time for just that reason. Whenever I have an idea I'd like to expound on here, or see something that's relevant, or have an interesting discussion with my husband about something Marfan-related, I write it down for future blogging use. There have been times when that's come in handy, because it gives me something to draw from if I feel like I need a happier, lighter topic than the one I'm actually wrestling with. I don't know that that's the most honest way to go about this, but it's gotten me this far.

     Maybe what could free up my thinking would be to stop looking at things as depressing or sad, and view them as simply honest. I mean, that's the word I use more than any other when trying to describe why I'm doing this, so why is it so hard to really accept it? Self-consciousness, frankly. Everybody has their areas of insecurity and that's apparently one of mine. Sigh. As my husband would say, dammitsomuch - I guess there's more work to be done in the self-improvement/confidence arena, and that is usually an uphill battle. Probably better to start sooner rather than later, yeah?

Monday, June 23, 2014

What Becomes of the Brokenhearted

     This post is more than a little difficult for me to write, because I normally don't comment on Marfan-related things outside of my and my husband's little world, and I do that on purpose. I am a firm believer in the idea of live-and-let-live, and as such, I try not to open my mouth too widely when other peoples' personal lives are the topic of discussion. Each of us can only do the best we can as we move through life, and sometimes we get it right, sometimes we don't. I know that some of the choices my husband and I have made regarding his health care haven't been the most popular among our family and friends, but at the end of the day, those choices don't belong to them - they're ours.

     Now that you know why I write what I do and don't, (a question I'm sure was keeping you awake at night, burning a hole in your brain because you didn't have the answer) I'm going to break away from that me-and-mine-only mentality for a little bit, because I feel like I have to. As isolating as my husband's disorder can be sometimes, I'm aware that some of that sense of isolation is self-imposed. We generally don't get involved in the larger Marfan community, mostly because it makes my husband uncomfortable. At forty-one years old, he is still not okay with his disorder, not any part of it; he doesn't like feeling different, looking different, having to go to the doctor so frequently, nothing. His attitude, most days, is that he thinks about it so much anyway on his own time, he doesn't want to be actively involved with it during his down time.

      Keep in mind, we're both still evolving on that front, as a couple and as individuals, so there's every possibility that as time goes on, one or both of us will want to become a bigger part of the Marfan community, or at least a stronger voice in the conversation. And with that said, I couldn't help but notice this morning that Isaiah Austin is just about everywhere you look on the internet; I'd have to be living under a rock not to notice the story.

     Long story short, he's a young man who's a very talented basketball player and was days away from an anticipated NBA career when he received what I'm sure was nothing he wanted to hear - a diagnosis of Marfan syndrome. Apparently, (and keep in mind, I'm reading the same articles as everyone else and getting the same info) he had a retinal detachment when he was sixteen. That, combined with his above-average height and long, thin limbs, makes me wonder how in the hell nobody caught it before now, but that's really neither here nor there.

     I mean, when I first showed my husband the story, that was his first question, as the initial suspicion for Marfan's is usually aroused when someone notices one or more symptoms and starts poking around, medically speaking. Knowing what I do now, yeah, I would've probably questioned what the underlying cause of a teenager's retinal detachment was, but the first part of this sentence is key. "Knowing what I do now," - not knowing changes everything. Marfan's is still classified as a rare genetic disorder, and it's one of the tricky little bastards that can pop up out of nowhere. According to The Marfan Foundation, 3 out of 4 people who have Marfan's have inherited it, but that leaves a percentage of people who are first-generation, meaning it's the result of a random genetic mutation. Random. As in, no one saw this coming.

      I know the kinds of choices my husband has been forced to make as a result of his diagnosis. Was it a good idea to move over 600 miles away from his specialist/cardiologist at Barnes Hospital in St. Louis? Can we find him the same level of care here in Charlotte, and if not, are we endangering his health? What about kids? That's an insanely frustrating puzzle that we haven't been able to solve yet, because it's a heritable disorder and my husband is adamant about not passing it on. Adoption is crazy-expensive and many countries won't even approve you for adoption if you've got any major health issues. (Believe me, I've been researching.) There are other issues there, which I'm not getting into right now, but the point is, as much heartbreak as my husband's faced over the years due to his disorder, I don't know that it compares to what Mr. Austin must be feeling.

     Honestly, I had never heard of this person before last night when the story popped up in my Facebook feed. I don't know anything about him, his training, his education, his hopes and dreams beyond that he was clearly working hard to be able to make his life's work playing basketball in the NBA.  And now that's gone, through no fault of his own or anybody else's; sometimes, them's just the breaks. According to social media, (always the most accurate source of information) he's handling the news well, and I truly hope he continues on with his life in such a positive manner. He seems to be handling himself with an admirable level of grace, and that speaks volumes about his character.

     In keeping with today's theme of breaking character, I'll go so far as to say I'm sending good thoughts this young man's way, which is something I generally don't do. Not because I'm an uncaring little snot, but because "sending good thoughts" typically accomplishes not much of anything, and I like to be a bit more pro-active than just "thinking about you" when trying to help someone. This time, though, it hits a little closer to home.

     

Sunday, June 1, 2014

Them Bones

     My husband's been having trouble walking around for a few weeks now, but not for the reasons one might think; for once, it has little to do with his spine. It's his ankles that have been giving him holy hell and, shockingly enough, we can't figure out why. It's not like are breaks or fractures, or even sprains. Anything acute like that is generally pretty noticeable, and this is something that's gradually gotten worse over the last year or so, to the point that even a trip to the grocery store is becoming intensely painful for him.

     I have no idea what, if any, correlation exists between Marfan's and osteoarthritis, if that is indeed what we're dealing with. My first thought would be that my husband is too young (41) to have arthritis this bad, but then I think of the kids who deal with juvenile rheumatoid arthritis and think, "Really, you know better than to arbitrarily dismiss something when it comes to his medical adventures." So, I guess it's worth bringing up to his doctor at this week's INR appointment, but I still kinda doubt that's what it is.

     My suspicion, based solely on my experiences seeing how the disorder affects his body and not on any actual medical knowledge, is that the tendons and tissues that hold his joints together are starting to weaken, to the point that they're having trouble accommodating his body's everyday wear and tear. I don't know what, if anything, can be done about that if this does turn out to be the case, because ankles are things you pretty much have to have in order to be able to ambulate effectively.

     I know there are braces and things one can purchase, sock-like things that would go right under his actual socks and into his shoes. Right now, he's been wrapping his ankles with ace bandages, so it's the same idea, I guess, just adding extra support. That's probably compounding the issue, now that I think about it - the fact that he's just a larger human being than most. While nowhere near Robert Wadlow's size, he's still usually the tallest person in the room by a long shot, and the extra weight that comes with being so tall can't be helping matters. His limbs are not only a little more stretched-out than most peoples', but his joints are just weaker to begin with.

     This is another of those things that we're kind of afraid is just something we'll have to accept as reality now, thanks to the degenerative nature of the disorder. I mean, time marches on and all that, and no can fight its' effects on the body forever. Eventually, you get smart to the fact that you need to focus on mitigating the damage rather than ignoring what's happening or getting pissed about it. I think he, especially, is better at that than he used to be, so the ankle pain will hopefully be a minor detour for now. Maybe some braces, or exercises to strengthen whatever muscles are used in making that joint work effectively. (Sorry, legal professional, not medical professional. I remember not one tiny bit of my high school anatomy classes.)

     All in all, if this is our biggest concern at the moment, we're in relatively good shape for now.

Thursday, May 29, 2014

One Fine Day

     One of my greatest strengths also happens to be one of my biggest weaknesses, which, believe me, is no end of annoying. I think a lot of people are like that, though. I feel like most people have that contradiction within themselves, that thing that allows them to succeed, but only as long as they keep it in check and don't let it run away. In my case, it's the fact that I'm a long-term, overall-picture kind of thinker. I tend to loose the pieces of the puzzle because I'm so busy trying to see the end result and making sure it's going to be what I want it to be. It's amazing how much you lose sight of when your brain is hardwired to keep the eyes on the prize.

     I've been reminded of that lately, the idea of stopping to pay more attention to what's happening right now, instead of always trying to figure out what's coming up around the corner and how we can prepare for it. Adam and Carrie got married on Saturday, and it was a day that many of us had been looking forward to for awhile. It was one of those days that, miraculously, didn't feel horribly rushed or tiresome or as though someone was always in one place when they were supposed to be in another. I can't even refer to it as a beautiful chaos, because that would be inaccurate, as it wasn't chaotic at all. It was just...so lovely. 

     Obviously, I can't speak for everyone involved, but my officiant husband and I enjoyed our friends, our family, each other, without that sense of "Ohmygod, we're late and we're supposed to be there and I FORGOT TO WEAR MASCARA, WE HAVE TO TURN AROUND!!!!" that I've known too many weddings to suffer from. This one didn't. There was love, there was dancing, there were old friends my husband hadn't seen in far too long, and there were new friends for me to connect with. Yes, great, that's wonderful, but what the hell does a wedding have anything to do with my husband's Marfan's? The point I'm trying to ever-so-gradually get to is that it was the kind of day that we both sometimes forget can happen, because his disorder pushes the possibility of what could be and the memories of what has been right out of our heads.

      I suppose I should clarify that last to make it apparent that it happens to me far more than it does him, because as I mentioned before, I am by nature a big-picture girl, not a take-it-as-it-comes girl. Rolling with the punches, while a talent of mine in certain situations, is not really something I do across the board. When you combine those tendencies with the everyday uncertainty of my husband's health, it can be a bad situation, one that effectively blinds me to what's happening at my fingertips. 

       In this case, instead of worrying if the percocet was going to ease the pain in my husband's spine long enough to perform the wedding ceremony, I made a decision to say, "Screw it. Not today, Marfan's, not today." And you know what? The world kept spinning, my husband did not fall apart, and we had a great day, both of us. I'm hoping, if I can make progress in figuring out how to safely wield my double-edged sword, that we'll start having those days with increasing frequency.  

Thursday, May 22, 2014

Carry On Wayward Son

     Maybe my breaking point came while I was watching old episodes of House, M.D this evening after talking with my husband earlier today about his latest misadventure with pain management. For those of those that aren't making the immediate connection between the two, House was a show about a brilliant doctor who had a painkiller addiction. Though obviously a work of fiction, the show felt very real to me with the questions it raised about the use of narcotics, chronic pain, and all the thousand of issues that those two things create when one is in the same vicinity as the other. It's a question my husband and I have been struggling to find an answer to for over two years now, and we're no closer to finding it than we were when we started.

     I'm a smart kid, and so is my husband. But I have wracked my brain until I can feel it bleeding into my skull and I cannot see any good option here; neither can my husband. We have been to multiple spinal specialists, pain management doctors, massage therapists, and various and sundry oddballs with even odder treatment plans - nothing has yet been effective. He has endured spinal blocks (the first one resulted in a t.i.a, the second was completely ineffective), super-painful physical therapy and muscle manipulation, CT's with contrast in which the doctors could see approximately nothing because the dye couldn't travel past his eighteen-inch spinal fusion, every imaginable painkiller in every imaginable dosage and combination, and about 352 other things that I can't remember at the moment.

     He's got more than one thing working against him in this fight and that's part of the problem. No, that's actually the majority of the problem. That, and the attitude so damn many medical providers have when it comes to narcotic use, but we'll get to that. Right now, we're fighting a war on multiple fronts on the same battlefield, if that makes sense. My husband's daily pain is probably more than what the average person could tolerate for more than a few hours, and that's on the good days. The bad days mean he can't move without the assistance of his wife or his cane, and has trouble breathing. That kind of pain puts a hellacious amount of stress on your system, which is dangerous when yours is held together with the biological equivalent of shitty duct tape.

     So that's problem one - the sheer amount of allover pain caused by your spinal structure coming apart at the seams, compounded by the muscle pain that results from spinal fusions such as his because it essentially locks the muscles in that part of his back in place. He's unable to bend and flex like someone would ordinarily be able to, and those unused muscles cramp and twist into themselves and spasm like it's their job. Neat.

      Now let's talk about the dural ectasia. That's a fun little trick his spinal column pulls when it doesn't feel like distributing the spinal fluid as it should, because it can't. Remember, Marfan's syndrome is a connective tissue disorder, a degenerative one that causes said connective tissue to degrade to the point of uselessness. Guess what's in your spinal column? Connective tissue ftw! It's wearing out, my husband's is, and it's just not strong enough anymore to push the spinal fluid up his spinal column like it should, resulting in dull hammer-blows to his lower back. No treatment for that one. At all. 

     Another spinal fusion, a smaller lumbar procedure below the large one, that might offer some relief, but since my husband's a wretched candidate for surgery, nobody will touch him until there's no choice. Even then, the improvement is only marginal, nothing life-changing. Oh, and that fusion that he had when he was 22 in order to continue being able to walk? All that hardware is sitting on top of the deteriorating lumbar spine, crushing what little is still functional. Yes, Alanis, that is ironic.

     All roads lead to painkillers, at least for now, until his spine gets bad enough to endure the circus that any surgery he's involved with becomes. The doctor at the urgent care we visited a few weeks ago told us the same thing, that it was the only viable option she could see, given all the extenuating circumstances. I know it, my husband knows it, and though neither of us is pleased by the prospect of using heavy-hitter pain meds (I don't mean oxy, I'm talking hydromorphone) as a way to be able to get through the day, it's all we've got. 

    The wall we keep running into, though, is this nasty attitude of the pain management doctors. If I'm being really honest about it, though, it's not actually just the pain management guys that treat my husband like a liar and an addict; the ER docs do it, too, though usually with less venom and less frequently when I'm with him than when he's on a solo trip. It's the worst mix of heartbreaking and rage-inducing, every time I watch him suffer the indignity of trying to explain the levels of pain he's in while knowing that he's being judged simply for seeking help. 

     Please, before the medical professionals of the world show up on my lawn with pitchforks and torches, let me say that I know why you have to be cautious, really I do. I've worked with drug-seeking behavior before and I know the dire consequences that can come of being attached in any way to drug abuse. It's a prevalent thing in most areas of the country, but in my experience, it's even more of a problem in more rural areas, like the one in which I was raised and the one I live in currently. I know all this, I swear; smart kid, remember? Why, though, are the innocent being presumed guilty until proven innocent?

      My husband has never done anything to earn such disdain, such distrust, and yet, we're having a hell of a time finding someone who will both treat him like an intelligent human being and work to get his pain levels under control. He's ready to give up and give in, and I'm running out of reasons why he shouldn't. He asked me tonight, "What in the hell am I supposed to do? I haven't done anything wrong, I didn't ask for this." I had no answer for him.

     Despite all that, though, I'm not out of the fight yet. I still have a couple of ideas yet to be explored, ways to make this bearable for the pair of us. I still feel like, as low as I get, and it's been pretty damn low lately, I know we're not actually going to give up and give in, no matter how badly one or the other might want to. It's not in my genetic structure to do so, and I suspect it's not in his, either. So we'll carry on, wayward or not, until we figure this out. 

Tuesday, May 6, 2014

Gentleman Junkie

     It never works out in my favor when I try to force myself to blog, not once. I tried to last weekend and this post was something completely different, something that I was tripping all over. As frustrating as it is when that happens, because I'm denied a pressure-release, I've learned to ride it out. Now, it's easier, what I want to say, how I want to say it. Thank God for that.

     My husband had an appointment at his primary care physician's office this morning, but not with the doctor. Instead, he saw the awesome nurse practitioner who is empathetic and listens to him and is just an all-around incredible human being. This appointment was one that my husband didn't make for himself, but rather that the NP made for him to come in so that they could find a solution to the pain issue that's been front and center in our lives for too damn long. While our doctor's office really is that great, that they'll go out of their way to schedule you for appointments that you didn't know how to ask for, this wasn't quite an unprovoked meeting of the minds.

     A little over a week ago, not last Friday, but the one before, my husband finally decided to go to the ER to get some help for the spinal pain that hadn't allowed him to really sleep or eat for almost forty-eight hours prior. Why'd he wait so long, when I've made it clear that we frequent the emergency room like most people frequent Target? Because. Appearances matter, like it or not, and until last weekend, my husband could, with very little effort, easily be mistaken for a stereotypical homeless junkie.

     I really, really didn't want to write that last sentence, because it feels like I'm just reinforcing the image some people seem to have of anyone who's less than clean-shaven.  I myself work in a large-ish law firm and, not surprisingly, conservative, business-casual attire is required. This means I have to keep my hair a normal-ish color, not the purple I so desperately want, and I have to ignore eight of the ten piercings in my ears, because to do otherwise doesn't really present the image I'm sure my employer is going for. I like my job, want to keep it, and  I understand why I can't wear my beloved Dr. Martens and band t-shirts to the office, but it doesn't mean I'm not inwardly cringing at having to spend forty hours a week in ballet flats and cardigans.

     I've learned, over the time spent in medical adventures with my husband, that appearances matter a hell of a lot when it comes to narcotics and any treatment involving them. It sucks, it's horrible, and it's the one of the two things that's ever made my fingers itch to beat someone stupid with their own shoe, but it's also a nasty catch-22, because it's one of those things that you can't really complain about. Why? "DRUG SEEKING! DRUGSEEKINGDRUGSEEKING! ALL DAY LONG, DRUG SEEKING!" And once that particular brand is burned into your medical records, it never leaves.

     We've encountered it for a long time, my husband and I, but never with the frequency that we started running into when we got to North Carolina. I have no idea what it is about this city, but Jesus Christ, this town hates painkillers. Or maybe it likes them too much, got into trouble, and then had their hand slapped. I don't know. What I do know is that I don't feel like my husband ever had this much trouble with being treated like an addict in St. Louis as he's had since we've moved here. No idea why. None.

     He tried a pain-management doctor, and he was treated so poorly that he asked his pcp if he could refer him to another one. My husband told his doctor why, and he was happy to refer him somewhere else. Went there, and that time, my husband made sure to bring me with him. It's sad, but he gets better treatment when I'm around than when he's by himself when it comes to anything involving narcotics. I mean, to the point that he will wait for me to get home, suffering and barely able to move, so that I can go to the ER with him, because surely a true addict wouldn't have a well-dressed, wells-spoken little wife, right? That's the logic the ER doctors seem to use, so we do what we can to play the game.

     The second pain-management doctor was worse than the first, and only started treating my husband like a human being with a disorder than no one seemed to know how to accurately treat, when he brought up the fact that he'd only wanted the painkillers to be a stop-gap, not his actual treatment. It was at that point the doctor became an actual human who treated my husband in kind, after he pointed out that he'd never wanted to be on painkillers for any length of time and what other options were there?

     None, as it turns out. None that were viable, anyway. So he's just been trying to push through the pain, working and living with a screwdriver prying his vertebrae apart. That's how he describes it to me - a flathead screwdriver wedged between the still-movable pieces of his spine, trying determinedly to break it apart. Some days it's a gentle persistence, some days it's particularly indelicate maniac.

     He was afraid to go to the ER, afraid of how he knew he'd be treated if he went there seeking relief from the burning in his back, the shooting pains down his legs. Two and a half days he stayed like this, wishing for a break so he could catch his breath. It didn't come, so he finally made up his mind to drive himself to the ER while I was at work - he couldn't wait. Okay, that's cool, I'll come get you on my way home from work.

     Already-long story short, my husband had the worst experience he's yet had at a hospital. The asshat who was overseeing his "care" did nothing but take an x-ray that showed nothing except what my husband had already told him was there and send him on his way with extra-strength Tylenol and a smug, "I'm feeling generous today, or you wouldn't have gotten that." (No, really - he actually said that to his patient. Fuck. You.) I wanted to cry from the unfairness of the treatment when my husband texted me to tell me what happened.

     Part of that attitude, I get. I'm far from stupid and I know how prevalent the abuse of prescription painkillers is. It's everywhere, rich and poor, polo shirts and Ministry tees. It's both sides though! Really, it's just as much the doctors who abuse the privilege of being able to write prescriptions for those drugs fault as it is the abusers. That's what kills me, when I see them look with distaste at my husband, when they ask him pointed questions that he learned a long time ago don't really mean what they say they mean. It kills me that he's seemingly being punished for a crime not committed, and for what? Because he doesn't/does look the part, depending on how you look at it?

     I would say, "Fuck that noise," and walk away, except the noise drowns everything else out; neither of us knows what to do about that.


   

     

Monday, April 7, 2014

Green and Gray

     We were really hoping, my husband and I, that his visit to the neurologist last week would shed some light on what the hell is happening with his spine. I mean, we know there are cyst(s?) just chillin' in his spinal column, like they belong there. Supposedly, they're benign for now, which is a good thing, but how long until they stop being benign and turn into something more sinister? Or, if not full-on sinister, at least more of a problem? That, plus the nerve damage in his feet and legs that was discovered during the same twelve-day hospital stay, was the major reason he was going to see a neuro. Also, it was somewhere he hadn't been before, somewhere new, somewhere that might have some useful information for us. As it turns out, not so much.

     It doesn't feel like a huge, crushing blow or anything, knowing that the only thing the doctors were able to say was, "Nothing we can do, come back in a year and we'll take another look." In fact, it was pretty much what we were expecting. Well, it's what he was expecting. I was still hopeful that something good would come of it, something that would provide us with some guidance. If absolutely nothing else, some exercises that he could do to help alleviate what's becoming an ever-present pain throughout his back. Nope, not this time.

     The weirdest, and most telling, part of it for me is that I really don't have much to say about it. I haven't thought that much about it since my husband told me what happened, probably because I knew it was coming. I feel now like that's what we're going to get, a holding pattern, until something gives in a really, really bad way. It's not a bad thing, not a good thing - it's not anything, really. That's probably why I get frustrated, though even though that's a fading sensation where the Marfan's is concerned.

     I have no idea if that means I'm learning to accept its presence in our life, or if it's apathy creeping in. That would suck, seriously suck, if it's the latter, but then again, maybe apathy would provide some relief for awhile. We both get burned out by navigating the highs and lows, and speaking for myself only, I know I'm hitting the wall more frequently and intensely than I used to. I talked to my husband about it last night on the way home from his parents' house and he asked if I wanted to talk to a counselor or something, but I really don't feel that's the answer. I have plenty of coping mechanisms in place, good ones, and they do exactly what they're supposed to do.

     Maybe what I need is a lull, the aforementioned holding pattern, to let it settle in my brain and allow a reset. I mean, no one can sustain a bullet-train brain for an interminable length of time without feeling the effects sooner or later. I like that imagery, the train; that's the best way to describe what it feels like lately. It's not a blurred ball of thought, it's very linear, one point to the next. The problem comes in when I take one issue and connect to the next, which leads to the logical consequence of said problem and then I'm suddenly leaving the station at 120 mph with no brakes. Stopping that shit is exhausting, let me tell you.

    Alright, so let's go this route for awhile. Neither of us was upset by the lack of answers, the waste of time that this visit was - it barely registered on the radar and it felt okay to let it stay that way. Maybe this is how we find the balance, maybe we let it ride. 

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.

     

Sunday, February 23, 2014

Stand By Me

     I don't have nights like last night very often, but when I do, they hit with a brutality that's unmatched to anything else I've ever experienced. My husband's been hospitalized again; he's been there since Friday night because after he went to the ER with pain shooting from his back to his legs, they did a CT of his spine and the doctor on call was unable to be sure of what she was seeing because it was so fucked. A specialist was called, who was only able to look at the films quickly before being called away on an emergency, but whatever she saw was enough to order my husband's immediate admittance.

     I'm just tired. I don't even want to get into the details of what's wrong this time, because it doesn't really matter. Cyst(s) in his spinal column, unknown how many or how we're going to deal with them. He's been put on a heparin drip because the decision was made to do a myelogram, which is a type of CT scan that involves injecting a dye into the spinal column. This isn't a simple thing for people on blood thinners, because you don't really want blood seeping into the spinal fluid from the puncture, which is what's likely to happen when your blood is 2-3 times thinner than it should be. I'm getting ahead of myself, though.

     Last summer, when my husband was in and out of the hospital for all but like, 8 days of the month of July, a cyst was found incidentally during a routine CT for back pain. Even though the ER doctor wasn't able to tell us exactly what it was at that point, we had a pretty good idea. There are these things called Tarlov cysts, which are nasty little fuckers and which I am not going to try and explain. Google it, if you care to find out more about them. The short version is, they're nerve-filled cysts that form in the spinal column and are a bitch to deal with because touching them can cause them to rupture. Also there's no known effective treatment for them because no one's quite figured out why they form, so there's that.

     Sigh. Looks like I'm getting into the details anyway.

     My husband's still in the hospital and it was yesterday that the neurologist came in to discuss the myelogram with him. It's a necessary thing, he said, because they can't tell from a regular CT how many cysts they're dealing with, or if it's even multiple cysts; could just be one big one. Well, my husband's had one of these procedures done before and he knew it involved a lumbar puncture. Last time he agreed to one of those, he ended up having a mini-stroke as a result of going off his blood thinners, which is what he had to do to minimize the possibility of blood seeping into the spinal column via the puncture site.

      When he brought this to the neuro's attention, the doctor told him that he understood his concerns, but there was really no other choice; it was a risk we'd have to take. See, the other option for discerning what the hell was happening in my husband's lower spine was an MRI, which isn't actually an option at all, due to all the metal in his body. Three titanium rods and a titanium aortic valve kind of do bad things to the images, plus my husband is convinced the MRI machine will dislodge his valve, irrational as that is. (Pretty sure it's an impossibility, actually.) So suck it up, buttercup, 'cause here we go.

      According to the all-knowing Google, it was Winston Churchill who said, "If you're going through hell, keep going." Smart guy, Mr. Churchill, if it was indeed he who uttered those words. I'm actually pretty good at keeping up a brisk pace on my way through trying situations, because I think it's stupid to do otherwise. I mean, you can lay down and cry about it, but you'll still be in hell when the tears are gone and no closer to getting out than you were when you started. So why wouldn't you march the hell on? Except I guess it's not always possible to keep it moving without assistance.

     As much as I hate to admit it, I lost it last night; the weight of everything that's happening and everything that's already there threatened to break my shoulders and I couldn't see. I just couldn't see anything in front of me, and everything that was clawing at my throat erupted into full-on, broken-hearted, lost in the dark with no hope crying. I actually started this post last night, but couldn't get anything to make sense, so I had to walk away. I didn't know who to call, because I would have alarmed my husband had I called him while I was in such a state and it would have been made worse by the fact that he couldn't get to me, being hospital-bound and all. I hesitated to do it, because my pride usually keeps me from talking to anyone when things go completely sideways like that, but I ended up calling my sister.

     I shouldn't have hesitated, because she was the exact right person to call. I mean, she's my sister. Lizzie's head is the closest thing to my own and she knew exactly the right tone, exactly the right balance of sympathy and "You're a Gale, we do not fail, we make game plans and execute them" to employ. It's nice, when you don't have the words and they're not needed anyway, because the other person just knows, even from seven hundred miles away.

     So we game-planned, and we talked, and at the end, I was calm enough to make a bed on the couch and fall asleep with the tv on. It wasn't a good sleep, as it never is when my husband's not with me, but it was better than nothing. No solid conclusions were come to, but at least I was able to get my brain to remember that it's not hopeless and there's always a way. Miles and miles and miles to go before I can rest, yeah, but I'm not traveling by myself, and that's not nothing.