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.

Monday, March 5, 2012

I Still Haven't Found What I'm Looking For

     I had the brilliant (or so I thought) idea to try the urgent care the next time my husband needed medical attention for the pain in his back. It really seemed like I might've been onto something, too, as he was cautiously enthusiastic when I told him of my plan. I mean, I knew it wasn't going to be an option on the mornings when he was incapacitated from the pain, but so long as he was ambulatory, why not try it? We absolutely detest the emergency room at this point, for a multitude of reasons ranging from inane to the hugely political and socioeconomic. It's not something that I feel like getting into at the moment, but suffice it to say that my husband and I will try just about anything to keep from having to go to the ER.

     Even though we have health insurance, it's still $100 every time we go, unless he's admitted, in which case the co-pay is waived. As I'm not stupid enough to hope for an admittance that would amount to nothing more than trading one problem for another, I've come to just expect that our bank account is going to be that much sadder once all is said and done. Since he had to quit his second job waiting tables on the weekends, extra money's been in scarce supply around and the urgent care co-pay is a much happier $35 per visit. That, combined with the fact that they're usually able to get you in and out in under an hour, was what made it so appealing to me.

     Keep in mind - I'm not delusional about what kind of care the urgent care can provide. In fact, I'd say I'm a hell of a lot better-equipped than many to be able to distinguish between the types of treatment available at the emergency room and the urgent care. I know my husband's not going to get an IV of Dilaudid, nor is he going to get a CT to check for aneurysms. He's also not going to be there the better part of six to eight hours, only to be told the same damn thing he hears every time and get sent home with a prescription for thirty oxycodone. It's not effective and that's no one's fault, but I figured there had to be some part of the rigamarole that I could make better.

     The first time we tried the urgent care, it was a Friday night. His back had been bothering him at work all day, but not to the point of incapacity. He could still walk just fine and actually, was able to do his work as well. Neither of us wanted him to pass the point of no return, though, so we thought making a trip to the urgent care to head the badness off at the pass was the way to go. A preemptive strike, if you will. No such luck. The doctor was an ass and treated my husband like nothing more than a dope addict looking to score. And before you get all righteous indignation on me and tell me how common it is for addicts to go from urgent care to urgent care to ER looking to get prescriptions for painkillers, let me just tell you that I was raised in the literal meth capital of the country - Jefferson County, MO. Hometown represent.

     I know how it works, I know the tricks addicts use to get what they want and I know the doctors have to be wary about what they write prescriptions for; they are, after all, ultimately culpable if someone's abusing the prescriptions they write. I do, however, also expect them to use some fricking common sense. Jesus Christ, my husband's got a 14-inch long scar down his back from where they cut him open to fuse his spine, another across his rib cage from the rib they removed and you can hear the ticking of his titanium aortic valve from across the room. The boy needs help and a shot of what is essentially extra-strength Motrin is not going to provide it.

     Let's go ahead and cut that argument off at the pass, too, because I know that chronic pain sufferers are actually more susceptible than most to addiction. People like my husband actually need narcotics on the level of Dilaudid and oxycodone to function on a semi-regular basis. In case you've never been around someone who's ever used a lot of narcotics for an extended period of time, I can tell you that it doesn't take too terribly long for the body to build up a fair amount of tolerance to the drug. As a result, the individual has to take larger and/or more frequent doses to feel any relief. It's a vicious, ugly circle and I have no idea what the answer to that particular problem is. But I digress.

     The eventual outcome of that first urgent care visit was being made to feel ashamed of asking for help and a prescription for twelve pills. That's about three days' worth of oxycodone when taken as directed. My husband does, though two at a time every four hours barely does anything at this point in the game. It was enough to get him through another week, until his back flared up again last Tuesday. He called in to work and when I got home, he told me the pain was no better than it had been that morning. Even though we'd had a bad experience the first time around, going back to the urgent care still sounded much more appealing than dealing with the hated emergency room.

     I looked up a different urgent care, hoping to perhaps find a doctor more sympathetic to the situation. I also went armed with my husband's discharge records from one of his more recent trips to the ER for pain, back in December. I wanted to have something to prove that he was not an addict, but just a guy in a lot of pain who didn't really have another option but the narcotics. The records showed that he'd been treated with an IV of Dilaudid and sent home with a prescription for oxycodone. It also showed that he has Marfan's Syndrome and explained about the fusion. I really hoped this would help the doctor understand our situation a little better.

     I was only marginally successful in my goal, as the nurse who first came in to examine him completely ignored what my husband explained was likely the cause of the pain (his dural ectasia) and instead gave him a shot in the ass of Motrin, exclaiming all the while how much her kidney-stone patients loved the stuff. Um, what? What the hell do kidney stones have anything to do with my husband's pain? Needless to say, the shot did absolutely nothing because it's primarily an anti-inflammatoy and that was so not the issue. When the doctor finally came in, my husband and I went through the whole spiel again about why we were here and what the complicating issues were.

     While this doctor didn't accuse my husband of looking to feed an addiction with painkillers, he did commence criticizing the care plan that my husband's specialists had in place for him. To be fair, there really isn't a care plan in place for his pain management, but that's not all on the doctors. One, my husband was the one who initially asked to be taken off the drugs and allowed to explore alternate pain management methods, such as chiropractic care. The doctors agreed and offered what help they could while he embarked on that ultimately unsuccessful journey. Two, the truth is, no one really knows what to do with my husband at this point. His aortic graft and valve replacement surgery took care of the most immediate danger with Marfan's, but nobody knows how to help the rest of the body from breaking down.

     So this doctor, after opining that he thought my husband had a lousy pain-management plan, wrote him a prescription for thirty oxycodone and sent us on our merry way. It's helped a little, having painkillers on hand so that my husband can get through his workday on bad days, but I know it's a temporary fix, at best. What happens when he runs out of painkillers? And honestly, the urgent care wasn't much different from the ER in terms of care received. Yeah, we got out of there a lot faster and $65 less poor, but the end treatment was the same - temporary and ineffective. I guess the search goes on for something that might actually be effective. Sigh.