Tuesday, June 28, 2011

Something To Believe In

     One of the main annoyances with Marfan's Syndrome is that it's such a reactive disorder, rather than a proactive one. For someone like me, who wants to do something about it when her husband is in pain, it's beyond frustrating. I can't even get angry with the doctors who treat him, because truthfully? There's not that much they can do anyway. It's such a wait-and-see-how-bad -it-gets kind of thing, so unique to each individual. Nobody, not even the experts, know exactly what's going to happen to my husband's body, nor at what rate. All anyone can do it wait for things to break and deal with it when they do.

     Yesterday was my husband's first trip to the pain management doctor in about three years, so I wasn't quite sure what, if any, new knowledge or treatment options I was expecting him to come home with. I'm happy to report that he was given not one, not two, but three things to try to more effectively manage his daily pain. Well, to be more accurate, I should say that he was given two methods of preventing/managing his back pain and one method of curbing it when it gets really bad. Semantics aside, I'm just really happy that we're maybe getting somewhere with his treatment.

    He went into the appointment intending to tell the doctor that he wanted to try something other than drugs, because they just weren't all that effective. That's exactly what he did, though he had to add the disclaimer that he's going to be embarking on a long car trip in October (yes, we settled the great debate and decided to drive to North Carolina, barring a medical incident that necessitates flying) and will likely need some sort of painkiller to make the plan a feasible one. From what my husband told me of his visit, it seemed like the doctor was very receptive to his request for alternate methods of pain control.

      The first thing he pulls out of his bag to show me is a prescription for a steroid, something in the same family as prednisone, which belongs to the corticosteroid group. I was kind of surprised when I saw it, because it stuck me as odd that he'd be given a steroid to use as a painkiller. Granted, it's only to be used once or twice a year, not at all like his prescription for Flexoril, which he uses semi-regularly to keep his back muscles from completely locking up.

     I guess it makes sense, given that the doctor wrote the prescription as a super-dose, to only be used for the road trip. It's also true that the issue isn't necessarily his back muscles in this case - it's the spine itself. He's afraid the dural ectasia will start acting up and from what I understand, the steroids will help alleviate this. (Further research into this one will ensue, don't you worry.)

     Okay, fine, more drugs, no real surprises there. But then....he pulled out a prescription for a chiropractor. Um, excuse the hell out of me, but since I've been with my husband, "chiropractor" has become sort of a dirty word in my vocabulary. I know, that's probably unfair to the profession as a whole and I really don't intend it to be that way. It's just that, when you're dealing with someone who has Marfan's and the tissues that keep their bony bits connected and in place are weakened, the very last thing you want is someone popping and aligning and pulling on things. So it's never really been a treatment option that's been under consideration by us.

     The doctor seemed to understand my husband's apprehension, though, and assured him that she was sending him to a chiropractor that she worked with quite often and who was aware of Marfan's Syndrome and its effects on the body. In fact, the prescription actually makes note of the fact that my husband's spine is not to be messed with. I'm thinking it's going to be a treatment based more on loosening and maintaining the muscles in the back, rather than alignment of vertebrae and the like.

     If that's indeed what's going to happen, then I'm all for it. My husband pointed out that it's not always muscle pain that keeps him in bed; sometimes it's skeletal. My argument was that while I understand that, a good sixty percent of the pain is muscular and if we can alleviate even a fraction of that, then it's a small victory won. When it comes to my husband's health, I'll take any victory, small or large; I'm not picky.

     Finally, he pulled one last thing out of his bag - a brand-new back brace. As soon as I saw it, I had to start laughing. I tried to stop, but it only got worse when my husband then proceeded to put the damn thing on over his Black Rebel Motorcycle Club t-shirt and stare at me balefully. His clear displeasure ("I'm not that old yet!") at having been told to wear it whenever he was doing any sort of potentially strenuous physical activity was, in an admittedly twisted way, amusing. I'm pleased about it because it's a step in the preventative direction and you know how I love to be proactive. Plus, I assured him that to me, a back brace = sexy sexy, so he doesn't have to be so bummed about it.

     Oh, alright. Truthfully? The back brace itself does not = sexy sexy, but I find my husband to be awfully damn cute regardless of his attire, so that still counts, right? Pretty sure it does.

No comments: