Sunday, September 28, 2014

Still Beating

     I know. As one of my best friends likes to text me from time to time, "Been a long time since you came around." I haven't written in almost two months, with nothing at all for the month of August, which hasn't happened since I started this blog back in 2011. It's not that I don't have anything to say anymore; I do. I've got just as many words as I ever had, just as many thoughts, and just as many frustrating/frightening/disheartening misadventures as ever. I think I've just been treading water for awhile, trying to figure out which way to go to get our lives on track to where we want to be, and this outlet has fallen a bit by the wayside.

     As far as my husband's health goes, we're in a pretty good place right now. He's currently rocking a 50-microgram fentanyl trasndermal patch, which has been the best solution we've yet come across. His wonderful, amazing nurse practitioner suggested it, along with an oxycodone prescription for breakthrough pain, and it's been a minor miracle. I mean, it's not a cure or a solution for the chronic, sometimes-incapacitating pain by any means, but it's keeping him propped up. Until he goes in for his next spinal fusion, that's about the best we can hope for, that the right combination of narcotics will keep him upright. It's not perfect, because there's a plethora of issues that go hand-in-hand with being on the level of painkiller (continued use of fentanyl patches is usually reserved for, like, end-stage cancer patients, if that gives you an idea of what we're dealing with), but it's the right choice for us at this exact moment in our lives.

     We also just got back from a week-long trip to St. Louis, where he had his annual check up with his cardiologist/Marfan guru Dr. Braverman. A full-body CT with contrast was performed and came back good, no evidence of any weak spots or aneurysms, which is always a good thing. Marfan's patients are particularly susceptible to aneurysms, due to the lack of fibrilllin in the body, and the nasty little creatures tend to be asymptomatic until they rupture. At that point, there's a fairly good chance it's game over, so we'd like to try and avoid that scenario if at all possible.

     The CT combined with the echocardiogram which showed no issues with his titanium aortic valve means we should be good to go in the cardiology department for at least the next year. So, that weight can safely go on the back burner for awhile while we continue to navigate the trickier waters ahead of us, both related and unrelated to my husband's health.

     I think, though, that maybe coming back here and writing will be helpful to both my husband and I in plotting our next steps. We can't tread water forever, and more than that, we don't want to. I want to come back to rambling here, I want to open up my email to find messages from places of the world I'd never imagined would care about what I had to say. And there's stuff I need to work out, stuff I hope other Marfan kids might be able to help us with.

     For example, we were watching a show last night about a kid with a rare disorder. The little boy had been diagnosed at birth, and had been in treatment for it ever since. His particular disorder was one that included physical abnormalities, and when he spoke of how the other kids at school would make fun of him sometimes (the kid was maybe 8 or 9), it must have triggered something in my husband's head. He said to me, out of the blue, "Sometimes I think about how much different it would have been for me if I had a diagnosis when I was that young. I wonder if it would have made it easier."

     We've been together just over half a decade now, and that was the first time he's ever said anything like that to me, so it kind of stunned me, if only momentarily. I'm still working on getting cohesive thoughts together about that, and also it's 11:21 at night, so I'm not going to get into it right now. My point is, things are as good and bad as they ever were, and I missed being here. The logical solution then, is to stop missing it and start running my mouth. Again.