Saturday, March 24, 2012

You Won't See Me

     I know it's been a fair amount of time since last I've written and for that I apologize. Not that there are an army of you following my blog and waiting for my next post with bated breath or anything, but I know there are various friends and family members who use this as a way to get updates about my husband's health. So many things have happened lately that my poor brain just hasn't been able to process a third of it and honestly, my and my husband's plans are changing on a daily basis. It's getting to the point where I don't want to update anyone about anything for the simple fact that I know it will likely change the very next day.

    My husband's Marfan's Syndrome has been really kicking his ass since December, so we've been trying to contend with that. We both lost someone close to us just a couple of weeks ago and it's still so raw, that wound. Jamie was a beautiful soul and I shared my wedding weekend with her, the first and only time I got to spend time with her. She made such an impression, though, and was so instantly a true friend, that I can't yet look at the pictures from those precious few days without feeling the loss. It's a grief I don't know what to do with, mostly because I haven't had time to figure it out. My husband, you see, lost his job a couple of weeks ago.

     It's been difficult to make the transition from two incomes to one, but we're managing. We have a couple of options to make sure he doesn't go without health insurance and for that I'm grateful. The loss of income can be more easily managed than the loss of health insurance when your husband has a degenerative disorder like Marfan's Syndrome. We're going to be okay, because that's the only option, you know? We're surely not the first family it's happened to and we absolutely won't be the last. I have to say, though, that it's times like these that I have to wonder what would happen if my husband and I weren't made of sterner stuff than we are. I mean, resiliency doesn't come in unlimited supplies, but ours hasn't failed us yet, so I'll take it.

     Everything else aside, the main reason I haven't been able to write very much is because I'm back in school and this term is going to kick my ass up one side and right back down the other if I'm not very careful about my time-management. I'm working full-time and though my boss has been great about letting me move my schedule around to accommodate my class schedule, it's still a full-time schedule. It's important to me that my work, both at my place of employment and at school, not suffer at one because of the other and I'm doing my best to keep it all together. I think the key is, like I said, time-management skills. Mad time-management skills, which I unfortunately do not possess when there are other, more interesting things to be doing.

    Basically, what I'm trying to say, in my long, rambling, get-to-the-point-already way is that I doubt very seriously I'm going to be able to update this blog for awhile. Again, I know this isn't the end of the world for any of the handful of people who actually read this and follow along with my misadventures in living with my husband's disorder, but I just thought it would be rather rude to drop off the face of the earth without any explanation. I fully intend on being back up and running in the next six weeks or so, once I'm done with this term and my bachelor's degree. It really is important to me that I keep this record of what it's like to be married to someone with a disorder like my husband's, because I still can't find one anywhere else. The e-mails I get from people in my position who've found my words are few and far between, but they're what keep me going sometimes.

     I know this post has been rather convoluted and it may not make much sense. That's probably due to the fact that there's so very much going on in my head at the moment. Hell, my husband's actually in the emergency room even as I type this, so I've gotta add that in, too. (It's a "routine" visit, not trying to trip anybody out here.) Basically, there's no room at the inn for the moment and something's gotta give. I'm still going to write when I have to get something out of my head, in order to maintain some semblance of sanity; I just don't know how frequently that will be.

    So what have we learned today, boys and girls? To summarize: lost a friend, lost a job, in danger of losing my sanity thanks to school. I'm hopeful the last part of that can be dealt with a non-procrastination outlook and copious amounts of Nine Inch Nails and White Zombie. (What? I find myself better able to concentrate when I've got one of those going at full volume.) The next six weeks will be a weird mix of one day at a time and planning my time to the quarter-hour, but it's all going to be good. I'm going to be fine and my husband's going to be fine and dammit, this too shall pass.

1 comment:

Anonymous said...

Hi nice blog ,, it helps me a lot cause I have marphan sydrome too and its not that bad that you wrote :D its also good cause I am tall , Very clever and done lots of thing in my life with my body...

peace for you and your husband
and look at things from better visions of them(something like this : "Every day I wake up with him, I'm reminded of just how lucky I am that we found each other at all,") to magnet good things to yourself