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.

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