Tuesday, August 28, 2012

The Other Side of the World

     I miss my husband like crazy. That much probably goes without saying, considering that he's currently in Charlotte, NC, where his new job is, and I'm still in St. Louis, MO, until the middle of October. I'll have (hopefully!) finished my paralegal courses by then and can pack up the U-Haul to move our lives out of storage and across the mountains to North Carolina. I'm excited and scared all at once, which is exactly what I'm supposed to be feeling, according to everything I've read on the subject. Mostly, though, I'm just ready to have my life in order again.

     The hardest thing about our separation has been, for me anyway, the fact that I'm not there to care for my husband if/when something goes wrong with his health. He's been away from me for a number of weeks now and during all that time, there were no hospitalizations, no back flare-ups, nothing. It was actually the calmest period we've had, health-wise, in quite some time.

     I was so grateful for this, because before he left Missouri, we had made all kinds of plans of what he'd do in case he had to go to the hospital. Which hospital would he go to? What constituted an urgent care visit and what pushed it over into an emergency room visit? Would he remember to tell his friend Adam, with whom he'd be staying, to text me with updates on his condition should he get admitted, since the hospital walls usually ate his cell phone signal? These are the types of things most people don't have to think about when planning a move from one part of the country to another.

     None of our plans had to be enacted, though, until a couple of weeks ago. My husband was returning home after spending the afternoon visiting with his parents when he felt his back start to cramp and spasm. That's usually when I get involved and start asking him what I can do, if we need to go to the hospital and so on and so forth. This time, though, I was more than seven hundred miles away and completely useless.

     This sense of helplessness was hammered home when my husband called me a bit later to tell me that Adam had made his bed for him and helped him take off his shoes, because he'd been unable to reach down and do it himself. Those two seemingly insignificant tasks? Those were both things that I always did for my husband whenever we had to play the back-pain game and now someone else had to take over for me. The miles between us were never sharper and more painful than they were in that moment.

     I will say, though, that my moment of, "Oh my God, I'm supposed to be there," was extremely short-lived. In fact, almost as soon as I felt the frustration begin to well, it was gone just as quickly when I thought about how grateful I was that someone was there who cared about him. It wasn't me and God knows I wanted it to be, because it's always me and it's always us, but in the end we were fine, just as we always are.

     It still feels like he's so far away from me and next week can't come fast enough, as that's when I'm planning to drive out there so we can go together and find a place to live. That's the next step to getting our life back in order, I think, and I know he's just as tired of this separation nonsense as I am. I've never done the long-distance thing before and I'm dead positive that we're nowhere near the first couple to feel like there's a thousand miles separating us, but I can't help but feel that the sense of distance is heightened by what I know could happen with his health.

Tuesday, August 14, 2012

St. Louis Elegy

      And so it's come to this - my husband and I are leaving the StL and moving halfway across the country to Charlotte, NC, which is where he's from. If I were to be completely accurate, I would have to amend the previous statement because my husband is actually already in North Carolina and I'm the one who will soon be leaving the Midwest to join him. It's a huge thing for both of us, to pack up and move over seven hundred miles away, but it's huge for each of us in different ways.

     I've mentioned before that my husband lost his job last March and when he was offered this new job in Charlotte, we were pretty damned pleased. Unemployment is kind of a mind-fuck and it certainly wasn't the happiest time in our household. This offer came through, though, and we decided that we would just have to look at it as a kind of second chance that we were being given to pick up and start fresh in a new place. It's not that St. Louis is an awful place to be or anything, but the city has, by and large, been rather unkind to us.

     The truth is, there were far more bad times here than there were good, and the painful memories far outweigh the happy ones. I don't know if that's because the painful ones are so much stronger than the others or if they're simply more numerous, but it's the truth. I will always be grateful for the time and the place because it brought my husband and I together; that will never change. I can't say, though, that I'm really all that sad to be moving on.

     I am sad to be leaving behind my coworkers and the place I've worked for the last eight years of my life, because there's not a lot that we haven't experienced together. My family is here, of course, and that's going to be a bummer because we're super-close and I'm used to being able to drop by my parents' house for a visit and free dinner whenever I want. That's going to leave a hole in me, but it can't be helped. I'm most afraid, though, of losing my circle of friends.

     The majority of my friends and I have been together for more than fifteen years and I can't think of a major life event that we haven't dealt with together. Sex, drinking, deaths, births, marriages, divorces, coming out - you name it, we've experienced it together. A couple of them are much more like brothers to me than friends and I have no idea how to be away from them. Especially when you consider the extra support that I sometimes need to deal with my husband's disorder, I just don't know how well this is going to go.

     I remember multiple incidents where my husband was hospitalized for one reason or another and I couldn't leave work to pick him up from the hospital, so one of my friends did it for me. So many times, I would go for coffee or lunch with my best girlfriend because something had happened with my husband's health and I needed to talk it out. What's going to happen now? I know I can always call them, email them, text them or whatever else I need to do to get in touch, but, at the risk of sounding like a child having a temper tantrum, it's not the same!

     I just have so much running around in my head right now that I hardly know where to begin. I'm leaving in three weeks to go to Charlotte and pick out somewhere for us to live, as my husband is currently staying with his friend Adam. By that time, I will have officially had my last day at work and will be in the final stages of my life in St. Louis. I don't know how I'll feel about it then, because I don't know how I feel about it now. It changes on a day-to-day basis, though overall I think I feel good about it.

     There will be so many blog posts coming, because there are so many issues with this move that I don't think most people have to deal with. I don't have the first clue if I'm handling them properly or not, but I guess only time will tell. Right now, I just need this outlet to try and get it all straight(ish) in my head before everything changes.

Saturday, August 11, 2012

I Feel Fine

     It's that time of year again - that one special day a year when my husband visits his cardiologist, Dr. Braverman, who also happens to be a leading authority on Marfan's Syndrome. My husband sees so many different doctors throughout the year, they all start to kind of blur together, but this one is different. Not only does he look after my husband's heart, Dr. Braverman is also the one who knows this genetic disorder inside and out and understands how everything all comes together. (Or falls apart, as the case may be.)

     It's a comfort to me each time he comes home from this particular doctor's visit with a (relatively) clean bill of health. That's not to say that I don't trust his other doctors, and God knows that at this point in the game, I'm not at all certain that all his medical care isn't just a giant science experiment, but to have one of the best in the business give my husband the once-over just makes me feel better. I'm well aware that one good doctor's visit is by no means a guarantee of anything, but how can it not make me hopeful?

     The methadone is still working better than anything else he's tried since we've been together, so I'm going to chalk it up to a success for now. I had to add the qualifier "for now" because I have no idea how long it's going to continue managing his pain this effectively. Thus far, every drug he's ever tried for pain management has eventually become ineffective because he inevitably develops a tolerance for it, thus rendering it essentially useless.

     The methadone may be different, though, since it's fully synthetic and a much longer-lasting drug. (Dilaudid works really fast and really well, but it's really better-suited for acute pain, not chronic pain, or so I've read.) My husband's cardiologist was pleased that this new pain management regiment seemed to be working so well, so that's always a plus when the different doctors seem to be in accord with one another's treatment plans.

     The one negative thing that came out of this visit was that the doctor told my husband he would prefer he stay away from the urgent care if at all possible. That makes total sense, because the doctors there are not at all familiar with my husband's unique medical situation and likely have never heard of Marfan's Syndrome. Perfect example? A few weeks ago, my husband's elbow was all swollen with cellulitis  and when it got to the super-painful point, he went to the nearest urgent care to get it taken care of.

     Really, it makes the most sense to go to urgent care for dealing with something so minor and that's exactly why he went that route. My husband figured that he'd get some antibiotics and be on his way and he was right, but damned if those antibiotics didn't wreak havoc on his INR levels. To be fair, the attending physician who administered the antibiotics warned him that he would have to go to his regular doctor to get his INR checked because the meds would probably screw with it, but holy hell, did they screw with it.

     He was sitting at a 7.4 (anyone not on blood thinners should be between 0 and 1) by the time he finished his round of antibiotics and went to get his levels checked. For those of you unfamiliar with what exactly that means, the easiest way to explain it is that he wasn't so much moving blood through his body as moving red Kool-Aid through his veins. It's because of things of that nature that my husband's specialist would rather he stay away from the uninitiated if he can manage it. I think that's a pretty reasonable request.

     All in all, I'm gonna say it was a win for my husband and I. Sometimes, when it seems like his health has been so bad for so long, when so many things have been so bad for so long, it feels like a major victory to hear from the doctor that things are going well, that we're doing it right. I know it doesn't mean blue skies ahead and things could change at any time, but damned if that small bit of validation doesn't feel so good.