Monday, February 28, 2011

Sick Man

     It broke my heart this past weekend to have to tell my husband that, from now on, he can only call in sick if he's really, really sick or we're en route to the ER. I shouldn't have had to do that. I felt like a wretched person for doing it, for even bringing it up. Never mind that the reason I did was so that we'd be able to take a vacation this summer to visit friends in North Carolina. It doesn't matter why I did it, the fact remains that it felt absolutely horrible to do it and I know he felt bad that I even had to say it. God, that's frustrating.
     Once again, our workplace is pretty generous in the benefits it allows its employees. I myself have never gone through my allotted sick days and I know that's the case with most of my co-workers as well. Granted, you're going to get the odd case of someone coming down with pneumonia or some freak thing like that, but those instances are few and far between. Last year, my husband not only used up every sick day he had, but also went through all his vacation time as well. And this happened BEFORE we found out he had to be out of work for two weeks for what should have been a minor outpatient surgery.

     Last fall, exactly one month to the day before our wedding, my husband underwent surgery to repair an abdominal hernia. These are common enough, though his was likely a result of the Marfan's weakening his muscle  wall. For 99% of people, it's a simple procedure, done laproscopically and on an outpatient basis. Take a few days off work, make sure not to do any heavy lifting when you do go back, done and done. Um, not for him.

     He had to prepare by going off his Coumadin and instead using an injectable blood-thinner called Lovenox. This was done so that he'd actually clot when they cut into him. (I'm not saying he's a hemophiliac or anything, but the boy's blood is more like red Kool-Aid sometimes than actual blood.) He had to stay overnight so they could monitor him and he was out of work for the next two weeks, because he doesn't heal like most people do. It was kind of a mess.

     In preparing for his time away, it was discovered that he only had 2 paid days left to use. Ugh. All his recovery time would be unpaid, thus leaving us a paycheck short for that pay-period. Our current economic state does not allow for things like a missing paycheck, but we had no choice. It's not like we could opt out of getting him repaired. And for the rest of the year, he just had to take an unpaid day if he needed to call in.

     What got me thinking about all this was when I saw his most recent paycheck stub and saw that he's once again used up his allotted sick days. Now, he'll accrue more as the year goes on, but only if he's, um, AT WORK to accrue them! So I had to tell him, if you want to be able to go out east this summer (and we both really, really want to) you have to make sure not to call in unless you're bleeding from your eyeballs or something similarly horrific. Which really means, "I'm sorry, baby, but you're going to have to work through the pain."

     And yeah, I know, lots of people do just that on a daily basis, just to get by. I feel for them and their families, for doing what they have to do. But I'm also worried that by working through the pain, my husband's going to break something the doctors can't repair. What then? Is it worth trying to save his paid sick days for when he truly needs it at the risk of pushing himself? But then, what if he runs out again and we end up short on money to, you know, keep the roof over our head and things of that nature? I'm trying so hard to figure out what's the right choice for my family and I just don't know.

Wednesday, February 16, 2011

Inquiring Minds

     When my husband has to call into work (and he does this more frequently than most), the first thing most people ask me when I get to my desk that day is, "Oh, no. What's wrong with him?" Usually, people call in because they have the flu, a cold, or something run-of-the-mill like that. So how am I supposed to answer the inquiries? Do I tell them the truth, that the muscles in his back were cramped and causing such spasms that he couldn't get out of bed? Or perhaps that he was having head rushes so frequently that it was difficult to stay upright? Um, no.

     It's another aspect of living with someone who is chronically ill that you don't really think about until you're in it. What to reply to a well-meaning question (a very common phenomenon, I might add!) becomes an exercise in frustration. Should I answer honestly? Well, let's look at the repercussions from that one.

     Honestly, some people don't want or need to know that much information. They want to know that it's a cold or something equally common that they can relate to and commiserate about. They don't want to hear that he's out sick due to ongoing Marfan's symptoms. The vast majority of people don't have any idea what that is and then either get curious, in which case I have to go into a lengthy it's-a-genetic-degenerative-disease explanation, or they just tune out because they never wanted to know that much in the first place.
    And yet, I find myself often telling the truth about what's caused his absence, even though I know he doesn't like it. My husband, you see, does not like to draw attention to the fact that he's different. His physical appearance already causes him to stick out in society and he'd rather not be pitied as well because people know why he looks the way he does. While I understand and empathize with that, I'm looking at the situation in a different light.

     As his spouse, the one who loves him more than anything, the one who doesn't know how she'd keep going if something happened to him, I HAVE to look at it differently. I want everyone to know exactly what's going on with his heart, with his back, with everything. I want to take care of him and protect him from anything that could cause him harm. I can't be there all the time, though. Even though we work together, we don't always work the same schedule and so there are days when I can't be there to remind him to please not try to carry multiple pieces of heavy computer equipment down two flights of stairs.

     It's because of this, and because of the fact that he is slowly getting worse, that I pushed and pushed until he disclosed the full truth of his illness to our boss. I know he didn't want to, but I guilted him into it by reminding him that his life was not necessarily his own anymore. He's fond of telling me what I can and cannot do, because "What would I do without you?", but had such a hard time understanding where I was coming from with this.

      It's better now, once he actually talked about it with our supervisor. It's not quite the big deal that he was afraid it was going to be, but it does make life a little better and easier, because they know that he's got to move a little slower sometimes and he's not the one to go to when they need things moved around.

     As much as I've thought about this issue, I've still not been able to come up with a hard-and-fast answer. I can only take it on a case-by-case basis and it depends on who's asking as to what answer they get. I don't really have a better way to handle it at the moment and I don't know that there is a better way. I think it's another one of the hundred of things that I'm just going to have to figure out as we go along and hope I get it right.

Saturday, February 5, 2011

A Different Direction

     This blog is really my first attempt at a cohesive anything writing-related. I started this with the idea that I would tell the story, chronologically, of how I became involved with my now-husband and, consequently, Marfan's Syndrome. I had it all mapped out in my head that I would simply tell our story as it happened and then move onto a Topic-of-the-Month or some such thing. I've since realized that such a format simply does not work for me and likely will not accomplish what I'm hoping to with my writings.

     What I want is an outlet for myself and others in my position, somewhere to go and find release for everything that's going through their heads. Somewhere to find people in the same place, where they can find a verbalization that makes them say, "Yes! THAT! That's exactly what I've been feeling, but didn't know which words to use to say it out loud!" And so, with that in mind, I've decided that I'm going to take things as they come and address them as they happen, out of order or not.

     My husband received a package in the mail yesterday - his new cardiac monitor, which will be his constant companion for the next month or so. He has to sleep with it on, work with it on, shower with the little sticky things on. Needless to say, he is less than pleased. It's not the inconvenience of the device that bugs him, though - it's the tangible proof that something is very much not right with his body.

     It doesn't help that the damn thing beeps every time it detects something it doesn't like, which of course draws the attention of anyone in his immediate vicinity. Thus far, everyone has chalked the noise up (wrongly) to his cell phone. He's grateful for that, because if there's anything that he dislikes more that having to disclose/ discuss his issues with people, I'm not sure what it is.

     How can I help him with this? What can I possibly say to make him be more at peace with the fact that he is physically broken (and do NOT correct me on the un-pc phrasing, because it is accurate) and now has to contend with yet another reminder of that inescapable truth? What to do when people ask him what that noise is and he has to explain?

      I always know when a new person has noticed that something is not quite right with his physical appearance and remarked on it. It's usually not done out of malice, just ignorance and sometimes completely tactlessly. Those insensitive people are the ones that make me want to kick their teeth in for sending him back to me so dejected-looking. I can't stand the expression on his face and the air about him that signals very clearly to me, "Yeah, it happened again." The sense of helplessness is overwhelming sometimes for both of us, and all I can do is sit on the couch with him while he makes himself as small as he can and tucks into me.

     While we're both aware that the cardiac monitor is temporary and the tell-tale beeping will soon be gone, the effects of the device will remain long after we send it back. It's not the first and won't be the last medical whatever that's used to monitor his degeneration and serve as a reminder to both of us that while everyone's time is finite, his clock will mostly likely stop ticking before it should. Every time something as seemingly small as this happens, we both have to fight hard not to let it pull us into the dark "What if?" places. I'm trying really hard to believe that that fight will not become harder as we go along, but sometimes I just can't make myself believe it.