Wednesday, July 27, 2011

Harder, Better, Faster, Stronger

     By now, I'm sure people have realized that my husband has to call into work more frequently than the average person. He was born with Marfan's Syndrome, a degenerative genetic disorder, and the lovely array of health issues it causes make it necessary for my husband to take far more sick days than he's technically allotted. His boss has never had a problem with this and in fact is quite sympathetic to his situation. This attitude is something I'm grateful for every time he calls in, as I'm sure our company (my husband and I work together) is in the minority with regards to their approach to sick employees. I've heard many a horror story about various employers that don't give a damn if your leg is hanging on by a tendon, you BETTER NOT CALL IN!

     Any sane person would take this as one less thing to worry about and be glad, 'cause God knows there are enough other things to worry about to keep my head occupied for days. Note that I said any sane person - I must clearly be lacking in the sanity department, because I have instead turned this into something else to get all neurotic and worried over. I know, what the hell is wrong with me, right? Believe me, if I could answer that question, I would've, long time ago. See, instead of just relaxing about the whole sick days thing, knowing full well that my husband has an understanding employer who has never once given him hell over calling in, I turn it into something that I have to make up for. Makes no sense, does it?

     Through absolutely no fault of his own, my husband has had to miss quite a bit of work recently, more than he actually has sick days to cover. I, on the other hand, am a fairly healthy creature and rarely call in. (I don't even do that thing where you call in, but you're not really sick; you just want a day off to do whatever. I'm too paranoid about getting caught and I actually like my job, thank you. Plus, there's that whole honesty concept.) It occurred to me, however, that the one time I was legitimately ill this year, I felt bad about it and tried to go back to work before I was actually ready to. It's another one of those things that I hate to say out loud, because I know when my husband finds out it'll make him feel guilty (which he shouldn't, because it's my issue, not his), but the reason I push myself to not take a sick day is because I feel like I have to make up for his absences.

     Before I go any further with this, let me say that I don't know that this would be the case but for the fact that we work together. Therefore, I don't know that this issue applies to someone who is partnered with a Marfan's kid, but doesn't share an employer. I could be wrong about that, but I can only go on my own experiences. I'm not sure if it's that I'm afraid one day our boss's patience with the sick days will give out and so I try to be super-employee to compensate or if it's something else, something deeper, but it's definitely there.

     In my head, I liken the situation to my eyes. They're both pretty bad, but one is worse than the other, so the "better" eye automatically compensates for what the weaker one can't do. I feel sometimes like I pick up the slack for the things my husband can't do, both at home and in our professional lives. Some of it I do without thinking, like when I refuse to take a sick day, even though I've got the damn things stockpiled. Other things, like mowing the grass because pushing the lawnmower might send my husband to the ER again, I do resent, just a little. It's ugly to think that and uglier still to say it out loud, but it's true.

     What it boils down to is that I sometimes feel like I have to make up for my husband's medical shortcomings. God, there's just no nice way to say that, is there? Obviously, those shortcomings are not his fault and it's not fair in the least that the places in life where he struggles to keep up have to be so painfully obvious to the world. Everyone, and I mean everyone, struggles to keep up in some area or another, but it's usually something that's able to be confined to their head. My husband has no choice but to display his for everyone to see and make judgment on.


Thursday, July 21, 2011

Red Eyes and Tears

     I've not really had to do a continuation of a blog post before, but there was just so damn much that happened last week that it's necessary. Yesterday's post was long enough with just the story of the actual surgery to get through that I couldn't keep going. As important as it is for me to keep this record of what it's like to be married to someone with Marfan's Syndrome, both for others who are in my situation and for my and my husband's friends and family who aren't here in St. Louis with us, it can be draining at times. I also use this as a form of coping with some of the heavier things that go hand-in-hand with being partnered with someone who is chronically ill, so it's really a trade-off for me. I'm learning to take the bad (reliving and dissecting the bad moments with him) alongside the good (the invaluable feeling of getting all this out of my brain, which was already far too crowded before my husband came along.) Like everything else, it's just a balancing act.

     By the time we arrived at our house, the numbing drops my husband had been given at the hospital had almost completely worn off. The drops weren't to address the pain from the surgery, but rather the pain of the corneal abrasion that had decided to park itself on his eyeball. Speaking as someone who's had both ocular surgery and a corneal abrasion, I'll take the surgery pain (which is actually pretty negligible) over the other any day of the week. Like I said before, the best thing I can compare it to is having a piece of hot ash stuck between your eyeball and eyelid. Either way, my husband was not in good shape when we hit the door.

     Obviously, he was very sensitive to light and midday July was about the worst time this could have happened to him. Once he was in the cool, dark house, I thought it would be a little better for him, but it wasn't. He thought for sure one of the four stitches in his eye was poking the eyelid and that's what the pain was from, though I suspected differently. (For the record, my suspicion was right! This was not, however, the time for "I told you so!") I have to say, I've seen him in pain before and because of everything he's been through with the Marfan's, my husband has a pretty high pain tolerance. This, though? This eye pain was unlike anything I'd seen him deal with before.

     He'd also been told by the surgeon to continue to use the erythromycin cream in his eye to both prevent infection and lubricate the eye, thus reducing discomfort. It's that "reducing discomfort" part that we were both fixating on when my husband went into the bathroom to attempt to put some in his eye. Obviously, the lights weren't on and he was having a hard time with it, probably because it's difficult to focus when you're in ridiculous amounts of pain. I offered my assistance, but he couldn't stand the thought of my hand anywhere near his eye, since he'd just spent a good portion of his eye surgery AWAKE and totally aware of the doctors cutting on him.

     At one point, before he was finally able to get the cream in place, the pain was so bad I thought he was going to come apart. He told me, "You gotta call that doctor, I can't do this," over and over, spitting out the words so quickly and repeatedly that I couldn't understand him at first. I knew there was nothing that could be done, though, so I instead made him focus on the task at hand and stayed by his side until it was accomplished. Finally, I was able to lead him into the bedroom, where it was cool and dark, so that he could go to sleep. Having experienced myself what he was feeling, I knew the only way my husband would find relief was if he wasn't awake.

     He slept (mostly) for the rest of the day, while I puttered around the house and checked in on him periodically. He seemed pretty quiet, which made me happy. I knew from experience that the first day of having a corneal abrasion is the worst and that if he could just sleep through the rest of the day, Friday wouldn't be nearly as hard on him. I felt like if we could just get through the night, everything would be much better in the morning. The problem with that line of thinking was that for one of the first times I can remember, the morning seemed like it was so far away.

     I know I've mentioned before  that I get overwhelmed by the big picture once in awhile, but this was different, this felt different. I guess I was feeling lonely? I phrase that as a question because loneliness is not an emotion I'm overly familiar with. I'm a solitary creature by nature, so I enjoy my time alone, but even when I do want company, I never have a lack of companions from which to choose. I'm not the most popular kid in school, but I do have a tight circle of loyal friends that I know I can always lean on. If anything, I'm the girl who looks for reasons to not attend social events because I don't feel like I get enough time with no one around me.

     So again I say, what the hell? I just wandered around the house, restless, not able to read a book or even log into my World of Warcraft account. I actively wanted another person to talk to, to give me human companionship. That's so unlike me that I wasn't quite sure what was going on. In fact, it's only now, after almost a week of thinking on it, that I'm beginning to realize what was going on. You'd think that after such an adventurous day, I would've been zonked out in bed next to my husband, but I just could.not.settle.

     I don't know if it was seeing my husband in such pain, more than I'd ever known him to handle before, that had me feeling so off or if it was more than that. Maybe it was just a very isolating experience and I wanted someone to share it with, someone to tell me that I was doing the best I could to take care of what I loved.  (I don't always feel like I am, by the way.) Maybe because the specific pain wasn't foreign to me at all this time, since I'd been there myself, that's why I was feeling so off. It wasn't like his back pain, when I can only imagine what it must be like. I knew what it was that he was suffering through this time around and I was pretty much useless to help him. God, I hate feeling like that.

Wednesday, July 20, 2011

Supermassive Black Hole

     As it turned out,  our adventures in the emergency room last Tuesday were just the beginning of what ended up being a long damn week. I suspected that was going to be the case while my husband was still being examined, but there's always the hope of being dead wrong. Yeah, no such luck. I know how strange it sounds to actually want to be wrong about something, but you see why it would be preferable in this case. I know what happens when some seemingly minor health issue snowballs into something larger (the hernia surgery that had to happen a mere month before our wedding springs to mind) and it never, ever ends in something fun.

     After finally being discharged with orders to contact the eye doctor the very next day, my husband and I left the hospital for home. It was almost one in the morning, neither of us had eaten in hours and we still had to stop by the pharmacy to get his painkillers for his back. If you'll remember, his back pain is what started the whole mess in the first place. It was there, in the emergency room while waiting to be seen, that he rubbed his eye and started the ball rolling on that. It wasn't truly his fault, though, considering that he'd really just opened up an incision (again) that was already weak .

     By the time our journey ended for the evening it was well past one in the morning and I knew that we were far from done. The eye doctor had said the last time this happened that if the incision opened up again, they were going to laser it closed. Great, fine, let's do that. When my husband called the next morning (well, technically that same morning, but let's not get stuck on the fine print) and was given an appointment to be seen early that afternoon, I fully expected them to fire up their laser right there in the office and seal up the hole. That's exactly how it works, right?

     What actually happened was quite a bit different than the little tableau I had in my head. One of the doctors in the practice (his regular doctor wasn't in that day) looked him over and decided that they were indeed going to do surgery. It was a little more complicated than just lasering the hole closed, however. Upon consultation with my husband's regular eye doctor, it was decided that donor tissue would be used to make the patch, as his sclera is thinner and weaker than someone without Marfan's Syndrome and the tissue couldn't be trusted to hold a stitch. Or, as my husband's inner 8-year-old said to me, "Dead person eye! On my eye! Now I'll have a zombie eye!" (This line of thinking was only encouraged by Adam, his best friend, who declared upon finding out about the proposed procedure, "Zombie pirates f---ing rule!")

     Now that we knew what the plan was, we sat back to wait until the doctors decided the time was right to perform the operation. My husband had yet another appointment on Thursday morning with the eye doctor and we thought that would be the visit that would decide the when and where of his impending surgery. My husband found out how wrong that assumption was when he was presented with a surgery consent form and told that they were preparing the operating room for him. Um, what?

     Neither of us was prepared for full-on surgery for a couple of reasons. Surgery is the kind of thing that you have to sort of get yourself into the correct head space for and I know my husband wasn't there. Neither was I, for that matter. He texted me from the doctor's office (I was at work) as soon as he found out what was in the works and I could tell he was a bit wiggy. He got wiggier still when he was informed me that because of his blood thinners, they were not going to do a general anesthesia on him, but rather a local. That meant that he would be AWAKE while having his eye cut on. Sounds like a good time if I ever heard one.

     It's just one more thing in a long list of somethings that's made more complicated than it should be by the Marfan's. At this point in the game, it hardly registers with me when it happens because it's such an integral part of our lives as to be almost a non-issue. In this case, the eye needed to be repaired quickly and completely and there just wasn't time to pull him off the Coumadin and onto whatever that injectable blood thinner is. Therefore, hold very, very still for a few hours while the doctors poke and prod and cut on your eye.

     Actually, they did give him a large amount of Valium before beginning the procedure, so he was out for at least part of it. Notice I said "part of it", because he did wake up about two hours into the surgery and from then on was very aware of what was going on. He said that all he could see was a very bright light, but it did a real number on his head, waking up in the middle of surgery and trying to hold perfectly still, lest he cause the doctors to slip and accidentally blind him. I myself had eye surgery when I was fifteen (the kind with scalpels, not the laser kind) and I cannot imagine how much worse it would've been had I been cognizant of anything. It makes me cringe to think about what it was like for my husband to be laying on that table, knowing full well what was going on.

     He came through the three-hour ordeal just fine, though, as the recovery room nurse told me when she called to tell me I could come pick him up. After consulting with my boss, I left work early to skip on over to the hospital and collect newly-repaired husband. Upon arrival, however, that same nurse informed me that there had been a slight complication and so the surgeon had been called back to take a look at him. She then told me that he was going to be okay and that I had to be strong, because my husband needed me right now. I just looked at her with a paper-doll smile and nodded my head. I understand that she was just trying to be helpful and that there are many people who go to pieces over things like this, but I am not one of those.

     I sat down in his recovery pod (no, really, they're called pods) to wait for him and he was brought to me within a few minutes. Apparently, there was a corneal abrasion in addition to the surgery site and that's what was causing all the pain. (I've had one of those and they're less than fun. Think of a piece of hot ash trapped between your eyeball and your eyelid.) The surgeon came to speak to me, let me know what I/he needed to do to care for the eye and sent us on our way. I brought the car around to the pick-up area and the nurse loaded my husband into the front seat. He was pretty quiet then because they'd put some numbing drops on his eye before his departure, but those started to wear off before we'd even made it home.

     Our arrival at home marked the beginning of a rather painful recovery weekend for my husband, but that's an adventure all its own...

Friday, July 15, 2011

Oops, I Did It Again

     Someday, someday soon, I swear I will learn to be careful what I say. That last post I wrote? The one that was all optimistic about the new potential treatment for my husband's back pain? I tell you, as a rather superstitious creature by nature, you'd think I would know better than to say out loud that things are coming up roses. Apparently, making such statements are the exact thing that leads to badness for me and my husband. Seems obvious, right? No, really, I'm not that superstitious or fatalistic. More importantly, I'm not possessed of nearly that negative a mind-frame as to think that my husband would end up in the emergency room solely because of something that I'd written about. He ended up in the emergency room on Tuesday because the pain in his back was just too much for him.

     It started on Sunday night, the pain in his spine. That's a different pain entirely than the pain he experiences when his muscles start to cramp and spasm. When my husband's spine starts making life difficult, it's a little more problematic than his muscles misbehaving because, with the exception of Dilaudid, no painkiller will touch it. Instead of going to the ER right then, he wanted to tough it out because he had that chiropractic appointment in the morning and hoped that whatever the chiropractor was going to do would alleviate the pain. No such luck. While he and I both consider that visit a success, it kind of added a new layer of pain to what was already going on.

     Monday wasn't so bad, though he felt like he was going to be sore the next day because of the chiropractor's poking around. It was supposed to be a good sore, though, like the kind that you get while on the path to making things better. Tuesday came and it fast became apparent that we were going to have no such luck. He went to work that morning, but warned me that his back was getting worse and he was considering a trip to the ER. Okay, fine, just tell me if/when he needed to go and I'd drop him off at the hospital. Not long after, it got to that point and away we went.

     I pulled into the little half-circle in front of the emergency room doors, kissed him good-bye and told him to text me when he was ready for me to come get him. I should also mention that Tuesday happened to be the hottest day of the summer thus far and that place was absolutely packed with people, probably because of heat-related issues. That, combined with the fact that it was what we both thought was going to be a routine inspection-of-the-Marfan-kid-and-hit-him-with-Dilaudid, was why I just dropped him off at the door and went back to work. There was no place for me there.

     My husband spent about five hours in the waiting room before he was finally assigned to a room to be seen by one of the physicians, and that's after having informed the nurse in triage that he's got heart issues. (For those of you unfamiliar with hospital waiting room procedures, telling them you have heart issues is usually the golden ticket to the front of the line. No one wants to risk a nasty cardiac surprise in the middle of a crowded waiting room.) That should've been the first indicator that this was going to end less than well.

     While he was waiting to be seen for his back pain, my husband reached up and rubbed his eye without even thinking about it. (Really, who does? Your eye itches, you rub it, end of story.) Like so many other things, that was not even the case for him. As it turns out, when he rubbed his eye with the same amount of pressure he always uses, he opened up the old incision that we thought was healed. When my husband was finally called back to a room to be treated for his back pain (also to have his heart checked; they're always afraid that any pain could someone be coming from that area), he mentioned to the attending physician that he thought he might've done something to his eye and could they check it out while he was there?

     I was born with messed up eyes and have had an eye specialist since I was five years old. Suffice it to say that I've had many, many eye exams of various types over the years and never have I seen a more thorough exam than the one given my husband in that emergency room. Apparently, there were two ophthalmology residents on call that night and it was decided by someone somewhere that they both needed to make an appearance in my husband's exam room. Watching the proceedings quietly from my little chair in the corner, I had to try really hard not to laugh. I swear, it was like watching Tweedledee and Tweedledum, only skinnier and wearing white lab coats.

     The first one brought a bag o' goodies with him, including a portable slit lamp. He just kept pulling stuff out of it and in the middle of his exam, the other ophthalmologist walked in and informed my husband that they were bringing in a real slit lamp to examine him with, though by this point they'd both already had a go at him with the portable one. Each doctor mirrored the others' exam, so my husband got a second opinion on the matter whether he wanted it or not. By the time all was said and done, the only possible part of my husband's eyeballs that hadn't been examined and re-examined had to have been the backs of them, where they're attached to his head.

     Ultimately, the diagnosis was that yes, he had re-opened the old incision and he needed to see his regular eye doctor the very next day. Don't get me wrong, I'm pleased that they were so thorough in their examination; I would much rather have two overly-interested doctors than one who barely glances at the problem. The fact that my husband has Marfan's Syndrome makes him a medical oddity that the doctors in the ER like to study, since they rarely get a real live one in to look at. It makes him feel like such a specimen sometimes, but it usually works to our advantage, so we try to look at it as a perk. It works most of the time.


Wednesday, July 13, 2011

Bend Me, Shape Me

     Monday morning, my husband did something he was told a long time ago never to do - he visited a chiropractor. Apparently, he was told by the surgeon who performed his spinal fusion that it would not be in his best interests to see a chiropractor, ever at all, and he's held true to that until now. Honestly, ever since I found out about the Marfan's Syndrome and everything it entails, I've been completely on board with the chiropractic care = badness school of thinking. I admit, I'm really no more versed in chiropractic care than the next person, but I know that they deal (exclusively, or so I thought) with the spine and that, as we all know, is something that really shouldn't be jacked with on a Marfan's person.

     No one was more surprised than me (except maybe my husband) when he came home from a doctor's appointment a couple of weeks ago with a prescription to see a chiropractor, but since it was his trusted pain management doctor who'd given the order, we decided to go with it. After all, the prescription specifically said not to touch his spine and this chiropractor was one who had worked with Marfan's patients before and knew the score. That, plus the fact that our treatment options are woefully limited, led my husband to make an appointment to be seen by the one medical professional that he'd always been warned away from.

     I didn't know what to expect and neither did he, but we were/are so willing to try anything at this point that there really wasn't anything to lose. I kind of wish I could've gone with him, just to see what the doctor did, but he was nervous enough about his impending adventure without worrying about an audience. Also it was at 7:45 in the morning and that's far earlier than I wanted to wake up, so no. He came straight to work afterwards anyway and since we work together, I got the scoop without having to wait too long.

     As is expected at any doctor's visit, the first thing my husband was asked was to explain his reason for being there. He always starts with, "Well, I have Marfan's Syndrome," because A) it's pertinent information so the doctor can take it into consideration when deciding upon treatment and B) it's usually the reason he's at the doctor's office in the first place. It was a pleasant experience for my husband to hear the chiropractor say, "Oh yeah, I know that. I'm familiar with Marfan's." Do you know how rare that is, to hear those words? Most times, my husband has to explain what the hell Marfan's is to whatever doctor is working on him at the moment. Not saying the lack of knowledge is a mark against the doctor, because they can't possibly be expected to know every disorder that could possibly affect their patients. It was just a nice little moment, to not have to perform that song and dance.

     After they chatted it up for a bit, my husband was handed a pair of gym shorts and told to go change. When he came back out, the chiropractor had him lie down on his side so he could see how my husband's muscles moved (or didn't move, in this case.) It was at this point in the story that I had to stop and say, "I'm sorry, what? Why did the bone doctor give a damn how your muscles moved?" As it turns out, chiropractors (at least, this chiropractor) do more than just play with your spine. This one wanted to know how the non-movement of my husband's back muscles were affecting him and contributing to his pain.

     I've always known that the fact that my husband's back muscles don't move like a normal person's has been a huge contributing factor to his overall back pain, but I didn't know that a lot of it comes from the fact that his hips are so weak and so he apparently uses his back muscles to move his legs around. In essence, weak muscles that don't move very much anyway that are being used to do something they're really not supposed to be doing only leads to badness. Who knew?

    After discovering this, the doctor taught my husband an exercise that he needs to do twice a day, both in the morning when he wakes up and in the evening before he goes to bed. It seems like a small thing, but it's more than he was doing before, so we'll see if it ends up helping or hindering. What really surprised me, though, was when my husband told me that the doctor spent a good portion of the visit working to break up the scar tissue that covered his back muscles. Truthfully, it never even occurred to me that scar tissue could be part of the problem. I have no idea why it didn't, as I know there was an awful lot of cutting going on in that area when my husband had his spinal fusion.

     I'm told that it's a rather painful process, the breaking of the scarred parts, akin to someone digging their knuckle into your back repeatedly. Actually, it's not "akin to" it is someone digging their knuckle into your back repeatedly. Hurt like hell, according to my husband, but a good kind of pain, which is something new for us. Typically, there is no good pain, just varying degrees of bad pain, so I'm going to take this as something of an encouragement. Time will tell if this new avenue is the right one to be going down, but I have to say that we're both pretty optimistic that it is.

Monday, July 11, 2011

Help Me Make It Through the Night

     My husband was in pain last night, a lot of it. In fact, he told me that if he hadn't had a doctor's appointment scheduled for 7:45 the next morning, he would've asked me to take him to the emergency room. They just would've given him a dose of Dilaudid and a prescription for a handful of painkillers to take when he got home. While that was tempting, given the level of discomfort he was in, it wasn't something he couldn't get through with a Flexoril and the knowledge that he'd be seeing a new pain-relief doctor in the morning who could hopefully provide us with a better treatment option. I understood his reasoning and so didn't push the issue when he said he didn't want to go to the hospital, that he could wait until the morning, but damned if that wasn't one of the hardest nights I've yet had to get through with him.

     We lay down to go to bed at around eleven last night and though his back had been irritating him all day, my husband thought that he could alleviate the pain by laying flat on his back. There are two types of back pain for him - muscle pain and spinal pain. The muscle pain is the more ever-present of the two, but the more easily tolerable/manageable. Muscle-relaxers, hot showers and stretching (what little he's able to) all help alleviate that type of back pain. The spinal pain, though, that's a whole different animal and that's what he was dealing with last night.

     I don't have back problems, nor do I ever anticipate having back problems, so I don't really know what it feels like for him, but it's been described to me as feeling akin to someone shoving a flathead screwdriver between your vertabrae and digging around with it. In short, most unpleasant. That's what we were dealing with last night. I suggested he take a hot shower, though I knew in the back of my head that it was the wrong type of pain to be helped by something so simple. I had to say something, though, because I didn't know what else to do, short of driving him to the ER against his will. I promise you, that scenario never goes well.

     After taking a (useless) shower, my husband decided that perhaps laying on the floor was the way to go, as it's obviously a harder, flatter surface than the mattress of our bed. So I got up and made him a pallet on the floor, so he could lay there while I watched an episode of Buffy the Vampire Slayer and kept him company. It was past midnight at this point and we both had somewhere to be in less than eight hours, but sleep wasn't an option at that point. My husband knew by now that the pain wasn't going to go away and that the best he could hope for was a drug-induced, fitful sleep. I got him one of his Flexorils and settled in to wait for it to do its job.

     Eventually, the little pill kicked in so that my husband was sleepy enough that he was ready to get up off the floor and back into bed. Back to bed we went and it was now almost 2 am. I turned off the light and laid down next to him, unable to get comfortable because I was afraid to move wrong and accidentally bump him and cause him more pain. I'm restless when I first lay down anyway, twitching around until I find just the right spot, which is usually curled against his back. Yeah, that wasn't so much an option last night. Between the being afraid to move and the not being able to turn my head off, I knew I wasn't going to be able to close my eyes for awhile.

     I am not someone who cries, and I don't just mean I don't cry over little things. I mean, I rarely cry ever at all. The day we buried my dad's brother? I was the only one in my family who was dry-eyed. Same thing last summer when my grandfather died - no tears for this girl. Contrary to popular belief , this trait does not mean I didn't love them, that I don't feel grief. I don't really know what it means, maybe that I control my emotions very tightly and keep it to myself. Again, I don't know and I don't really care to psychoanalyze myself at the moment. I only bring it up because I need to make it clear just how much was going on inside me last night when I felt the tears start as I lay in bed.

     I kind of surprised myself with them and I immediately got up and went into the other room. I could tell my husband wasn't all the way asleep yet and I had no intention of upsetting him with something I didn't even have a handle on myself. I think I was just overwhelmed, thinking about the pain he was in, again and the fact that he'd told me earlier that day that he had to quit his second job waiting tables and soon. He'd informed me that he only had a few shifts left in him, not even a few months. Well, hell, I don't even want him working that stupid job, but he's there because he has to be. We don't have a choice at the moment and though I know it will eventually get better, that day is still a ways off.

     I didn't know what else to do, so I went into the second bedroom, sat down on the bed and pulled the Bible I was given in third grade off the shelf. It's difficult for me to talk about this, as my faith is a very, very private thing and it's for no one but me. I have to, though, because once again, there could be someone out there who's in my position and needs to know they're not alone. In any case, one of the few things I remember from Sunday school is that when you open a Bible to the middle of it, you'll open it to the Book of Psalms. (Don't ask me why I can remember that, but not what the whole baby-in-a-basket story was about.) That's what I expected when I flipped it open, but that's not what I got.

     The pages instead opened to the Book of Job, which is apparently right before Psalms. (I feel like the order of the Books are something I should also remember, but I don't. Sorry, Grandma.) I know only that this Job person had a lot of patience and that every bad thing that could happen to a person happened to him. I don't know why or where or what exactly, but bad things happened, he never lost faith in God, and then things got better. That is the sum total of what I know about the Book of Job.

     I've done that before, you know, gone and opened up my Bible to a random page, hoping that the phrase my eyes land on first is one of comfort, something I can use to assure myself that something much bigger than myself is paying attention to 'lil ole me and my problems. Sometimes it works and sometimes it doesn't. Sometimes, the pages flip open to some random story that has no bearing whatsoever on whatever it is that's got me all wound up. Every once in awhile, though, I'll open to something that I can't ignore, which is what happened last night.

     In all the years I've pulled that trick on myself, I've never flipped the Bible open to the Book of Job. Does that mean something, or is it just an old book of stories and just a coincidence? I mean, I know God's there and I know He can hear me, but I don't think it's really His job to attend to me every time I have a little head trip. Bigger fish to fry, you know? Maybe, though, this time I needed it just badly enough that He thought He should be a little more direct. Maybe Bono is right in that sometimes you can't make it on your own or maybe I'm just doing what I can to make myself believe that there's going to be a light at the end of the tunnel for us.

Saturday, July 9, 2011


         You know what the worst part of my husband's disorder is? The fact that there really isn't anything solid I can do to make it better. I mean, yeah, I can make sure he takes his daily meds (though of the two of us, he's a thousand times better at remembering things like that than I am), goes to his doctor's appointments and things of that nature. As I've said many times before, though, Marfan's Syndrome is such a wait-and-see disorder that it's really hard to be proactive. The keyword for dealing with it is, unfortunately, reaction, which often does not sit well with me. I realized just the other day, though, that there is something my husband can do to not poke the sleeping bear that is his disorder and that is to quit pushing his damn physical limits.

     My husband works in IT, but occasionally has to do more physically demanding stuff like running cables. Sometimes that's fine and it doesn't affect his body any more than sitting at his desk for an extended period of time does. Sometimes, though, it's just not a good idea and the real hell of it is, he knows when it's a bad idea and does it anyway. Those are the times when I want to either A) pull my hair out in frustration or B) knock him upside the head and tell him to quit being a stubborn jackass. Perhaps a combination of the two.

     The day before his last sick day was the day it really hit home for me. He and his co-worker were running cabling and though this particular job wouldn't have been physically demanding for anyone else, it quickly became a nightmare for my husband. It was just a bad day for his already-unhealthy body and he pushed it too far by insisting that he could do it.

     Now, we work together, my husband and I, and he had to pass by my desk several times over the course of the day and every time he walked by, he'd give me an (unsolicited) update on his rapidly-deteriorating state of being. Every time, I'd ask him to please slow down, let his co-worker take some of the heavier work from him. I didn't think this wasn't an unreasonable request, especially considering the fact that his co-worker knows about my husband's health issues and asked several times for my husband to slow down and allow him to take over more of the physical work. Shockingly enough, my husband refused, until it got so bad that his co-worker flat said to him, "Stop. I'm doing this now."

     How am I supposed to accept that my husband is in pain and headed for another sick day when I know damn good and well it doesn't necessarily have to be that way? True, nothing will ever cure him of the Marfan's and his body will never be able to do everything he wants it to do. But damned if there aren't ways to NOT POKE THE SLEEPING BEAR! I cannot for the life of me understand why he won't just take it easy when he knows that his back is "thisclose" to going out. (That's exactly what he told me that day, while holding his thumb and forefinger about a millimeter apart.) Okay, so if you know it's "thisclose" to being a bad situation, why in the hell wouldn't you stop what you're doing? Especially given that you're working with someone who's considerate enough to say, "Hey man, let me help you."

     I can't make him understand how hard it is for me to sit there and watch him push himself to do something he knows isn't going to end well, knowing I can't do a damn thing to stop it. When we're at work, we try our best to treat one another as just co-workers and ignore the fact that we're married. It's a very casual office anyway and we've never had a problem yet with this arrangement. When situations like this arise, though, it's all I can do to keep from running to his boss's office and telling him that my husband has to stop what he's doing because it's going to end badly. I have to stop myself, though, because not only is that completely unprofessional, but it would take my husband a long damn time to forgive me for something like that.

     It's no secret that he hates that he's sick and wants as little attention as possible drawn to the matter. I would argue that it's not just about him anymore, not when I also have to deal with the repercussions of yet another unpaid sick day. Beyond the practical, I just don't think he really gets how painful it is for me to see him hurt and know that I can do nothing, to know that it's going to get worse still and still nothing I can do. It makes me feel completely helpless, neutered even.

      Whenever I do something that's less than clever, my husband likes to joke that he can't save me from me. I would have to say the same of him in this scenario. I try my best to take care of him, encourage him to take care of himself and do what can be done to manage the Marfan's. If he refuses to concede his body's limits, though, what am I supposed to do? I cannot (however much I may want to at times) physically keep him from pushing it and God knows I make my opinion known whenever it comes up. He's not exactly skilled at taking suggestions, though, so the question of how do I help someone who won't be helped remains.


Friday, July 1, 2011

In My Head...Or Something

     You'd think I would be used to it by now, all the everything that comes with my husband having Marfan's Syndrome. You'd think I'd be used to him having to call into work, used to seeing him in pain, used to assuring him that it's not his fault he can't do what all the other kids can. I guess that's not the right terminology, though, "used to it". I'm already used to all those things, as they're a constant in our lives. I suppose I should say that I'm not accepting of him being in pain, of him having to deal with the guilt for not being able to go to work today because his body simply won't allow it. I don't know that I'll ever be accepting of those things, or even that I should be accepting.

     He and I both knew that today was potentially not going to be a good day. He was doing physically demanding work all day yesterday and mentioned to me a couple of times over the course of the day that he could feel that his back was mere inches from giving out on him. He couldn't stop what he was doing, but I asked him if he needed his back brace. No, the pain was in his upper back, not his lower. Alright, what about the Flexoril, would taking one now help to relax the muscles enough that it would stop the cramping that we were both afraid was going to start? Maybe, but he couldn't remember what he'd done with the medicine and he couldn't pause what he was doing to run home and get one. Besides that, it would've rendered him somewhat sleepy and slow for the rest of the day, which is never a good thing at work.

     Sure enough, he woke up this morning barely able to crawl out of bed to turn the alarm clock off. He'd taken a Flexoril before bed last night in hopes of avoiding that, but it did no good. Once his body's past the point of no return, there's nothing that's going to turn it back in the other direction. So I went and got his cell phone so that he could e-mail his boss and say that he wouldn't be able to come in today. As I've mentioned before, our workplace is really great about sick leave and the like, so it's not the calling in part of everything that stresses me out in this scenario.

     It doesn't happen every time he has to call in or ends up in the emergency room, but every once in awhile, my head just turns on me and the thoughts start spiraling into badness. For example, we're supposed to leave for vacation in 106 days and at the rate he's going, my husband is going to be on completely unpaid leave because he's used up all his sick days and his vacation days. It wasn't bothering me until now, when I realize how close we are to vacation and how little time he's actually got left to accrue paid leave. Now? Starting to worry about it a bit. We're going to North Carolina regardless, but I'm afraid that the thought of the unpaid leave is going to be at the back of my mind the whole time.

     More than the immediate, though, today is one of those special mornings in which I can't stop thinking about our future and the seemingly insurmountable challenges that are coming up. I admit, the challenges only seem insurmountable once in awhile, not every day. I'm usually pretty good about the we-can-do-anything mindset, but every so often, I just can't find it in me to be positive and strong. This is one of those times and while I feel ashamed about that, it's still important for me to get it out there, what's going on in my head. I know somebody out there is in the same shape I'm in, dammit. I can't possibly be alone in this feeling.

     I can't quit it with the thoughts of, "How the hell am I going to do this? How in the hell am I going to pull this off?" I mean, my husband and I have talked about Social Security Disability Insurance before and we both know it's an eventuality that's certain, but the big, fat when? is currently hanging over our heads. It's a fairly complicated process, applying for SSDI, and it's never a guarantee that you're actually going to get awarded. (I used to be an SSDI paralegal, so I have some idea of what I'm talking about.) It's not anywhere near a sure thing and there are other considerations that must be made before you even think about starting the process. I promise you, we're not ready for that yet.

     God, I just said that we're not ready for something related to the Marfan's, but that was kind of stupid. Nobody's ever really ready for something like Marfan's Syndrome and I don't know if you ever truly get to a point where it doesn't surprise you (not in a good way) every time you turn around. It's yet another something I'm trying to get better at, not letting these thoughts run away with my head. It's not a common occurrence, I can say that much, but it still happens too frequently for my tastes. It's a time thing, I know, meaning that I just have to learn how to deal with it over the course of the years and there's nothing that will speed that process along. I can be rather impatient sometimes, however, and this is most definitely one of those time.