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.