Sunday, October 30, 2011

Your Sickness Weighs a Ton

     It does weigh a ton and though I've said it eight thousand times before, I have to say it again. My husband's Marfan's Syndrome is currently pushing down on our household like never before. There are so many things going on right now, so many, and even though I feel like I have a pretty good grip on everything, I know that it could be loosened at any moment. Normally, that's not me; I'm not the half of the marital duo who's fatalistic and looking at everything through a warped, cloudy lens. Right now, though, I can't seem to do anything but. I can't see what it is that we're coming up on, I don't know how it's all going to play out and I've lately been living in a perpetual state of waiting for the other punch to land. Most of the time, I can take it, but right now I've got the worst feeling that even though I can probably hold my ground, my husband's not going to be able to.

     As always, it's not any one thing in particular that's caused my world to tilt on its axis, but rather a culmination of small things. My husband had to quit his second job waiting tables on the weekend because it was just too problematic. Thus far, it's been both a curse and a blessing and we'll just have to see which one wins out in the end. One the one hand, he now has two full days off every week to recover from working his regular job.

     It's too soon to tell yet if having a real weekend will pay off at his full time gig in terms of not having to call in as frequently, but that's the hope. Obviously, I'm not a doctor and neither is my husband and so we're not equipped to make the call of whether or not this move will be beneficial on that front. Thankfully, that means we'll get to play my favorite game of all time -Wait and See! It's this awesome game where no one's able to tell either of us anything about how a decision my husband has made regarding his health is going to turn out or even if it will be the tiniest bit beneficial, so we just get to WAIT AND SEE! What are we waiting for? Who the hell knows? It could be something great, it could be something that leaves us in a worse place than before, or it could be nothing at all. Doesn't that sound like the most fun you've ever had in your LIFE?!?!

     Sorry, I drink a lot of Mountain Dew and sometimes it gets the better of me. Anyway, the point I was trying to get across is that while we hope my husband not working as a server will result in him experiencing less days full of crippling pain, we don't know if it will or not because the second job may not have had that much effect on the state of his health anyway. The other side of this debate is the fact that his second job pulled in a not-insignificant part of our monthly income. I've readjusted our budget as best I can, but the fact remains - ouch. It's not like we were using that money to buy pretty things to hang on the walls, either. We've still got two months in the year to go and my husband and I have already spent almost two thousand dollars in healthcare costs for him.

     Two thousand, and we're lucky enough to both be employed full time and have insurance. It's good insurance, too, but there are co-pays for doctor's visits and co-pays for medicine and a large out-of-pocket chunk of change for things like eye surgery. It adds up really fast and doesn't even factor in what we've had to spend on my healthcare. Luckily, I'm not often sick and only require trips to the doctor for yearly check-ups and such, so that's something we've got going for us. Still, I worry what might happen if a sudden large expense comes up when we're so not financially ready to deal with it. The income from his second job eased that worry just a little and made him feel better about being sick. (That's a whole post in and of itself, trust me. Maybe even multiple posts.) I'm hopeful that ultimately, my mad budgeting skillz will get us through and the theoretical benefits to his health will manifest themselves and make the extra anxiety worth it.

     My goal in the meantime is to see how much of this heaviness I can get lifted off the house. I can see it affecting him more deeply than me and I'm sure that's because the disorder is his, not mine. As much as it affects my life, I will never be forced to look at it in the mirror the way my husband is. I attribute part of the weight to the fact that lately, it's seemed like the Marfan's is progressing faster, consuming more of his body than it has before, affecting it and breaking it in ways that my husband has never experienced. It's scary enough for me to watch; I'm horrified to think what it must be like to wear that every damn day and know that you'll never get away from it.

     Perhaps this is just a rough patch, as we've been through before and as we'll weather again. Maybe this patch is stronger, more vicious in its grip than has been previously experienced and that's why it's having the effect that it is. I don't know. Maybe my husband and I are both making too much of nothing we can put our collective finger on and need to stop letting it occupy space in our brains. That's what I usually tell myself when this feeling becomes so pervasive - "Hey! Stop moping around, get your head right and keep moving forward." I think I'm going to have to take that same stance now, because the truth is, there is just too much coming up down the road for me to give in at this point in the game.

1 comment:

Jaime said...

Just stopping by....and thinking that you could use a virtual blog hug.

I understand this post so well. And as cliche as it is, yes, keep your head up, one foot in front of the other, hold your hubby's hand, and together move forward. :)