Thursday, October 28, 2010

Murphy's Law Personified

You know the scene at the beginning of Men in Black, when Edgar walks outside to see that his truck has been destroyed, and he just looks at it and says "Figures"? That's kind of what I feel like right now.

For a little while, I've had this new pain going on. I don't really know if it just started in the last couple of weeks, or if I just didn't notice it so much at first because of the normal surgery pain. Either way, I've been noticing it a lot lately. Whenever it comes back (which is almost always about two hours after I take the pain killers, when they start wearing off) my upper body gets really stiff, and if I move just the tiniest little bit I get this unbelievable pain shooting down from my neck, through my shoulders, into my upper arms (on both sides.) Now, I've never actually had someone take a knife and slice me open right there, but I'm pretty sure it would feel a lot like this does. And I do mean tiniest little movement. Like breathing, or swallowing. I have to grit my teeth just to keep from screaming, and that doesn't even always work. It's intense.

I kept telling myself that this was just part of recovery, 'cause, you know, it's bound to be painful. But the longer it goes on, the less normal it feels. And I've kind of started to be concerned that something has gone wrong. I went to the pain clinic on Tuesday, and told them what's been going on. I was hoping with all my might that they would tell me this is completely normal, and nothing to worry about. But it's me we're talking about, so that wasn't really going to happen.

Of course, they had never heard of anything like this happening after this type of surgery, and didn't really know what might be causing it. (One of them theorized possibly an infection, and ordered blood work, but the look on her face suggested that she was kind of just grasping at straws.) The best that she could be confident about was that it sounds like "some sort of complication," so she suggested that I go back to the surgeon, to see if he might have any idea what's causing it.

All I could think was "Figures." If anything weird is going to go wrong with someone's body, it will go wrong with mine. It kind of sounds like I'm exaggerating there... and maybe I am, just a little. But not by much. (I've joked before that when the gods were putting me together, they just kind of looked at each other, shrugged, and said "Eh, close enough.")

If you know me at all, you know that I have a lot of things wrong with me. And the better you know me, the more you know just how crazy some of those things are. And they aren't the every day, run of the mill things that lots of people have wrong with them. Oh, no. They're the things that nobody has ever heard of. The kinds of things that, when I would describe the symptoms to the doctors (when trying to find a diagnosis) the most common reaction I got was something to the effect of "Hmm. That's weird."

So now, I'm just doing my best to stay positive. Since I'm past the point of hoping that this is just a normal part of recovery, I've moved on to hoping that it is at least something that the surgeon will recognize, and that we'll be able to fix it without too much trouble. I just hope I'm not asking for too much there.

Thursday, October 21, 2010

The Past 4 Weeks

Wow - I knew it had been a while since I posted, but I didn't realize it had been that long. But, like I told my husband earlier... I can't even remember yesterday. How am I supposed to remember anything else?

I was slightly exaggerating, but unfortunately not by much. I've been in such a drug-induced fog since the surgery that it might be kind of funny if it wasn't so sad. And besides the drugs, there's the whole lack of sleep (because of the pain) thing, alternating with the just crashing phase (because I'm so exhausted from the not sleeping thing.) It's crazy. And annoying.

So... it's been a month now since surgery. Want to know what it's been like? Here's a hint.

Yeah, kind of like that. I won't lie - there has been a lot of pain. A lot. And that hasn't been fun. It sucked to not be able to do anything for so long. It sucked to want to cry every time I moved. It sucked to not be able to let my kids sit on my lap because it would hurt too much. It really sucked to not be able to play with them, or go out with the family. It sucked that simple things like brushing my teeth or taking a shower were huge, painful ordeals.

Around 2 1/2 weeks was when I started having doubts, and wondering if I had made a mistake. (We should have had a betting pool.) I'm pretty sure that's a natural thing to go through. You think you made a good choice, then the recovery turns out to be really difficult, and you start questioning your judgment. It happened a couple more times since then, but I think I'm finally over it now.

The roller coaster always has to go up and down a few times to make it a real ride, though. So yeah. For the most part I've done what I could to keep myself up, and so has my family. I got really good at finding joy in the little accomplishments. (Like how proud of myself I was on the day after surgery, when I managed to brush my teeth without making a mess all over that ridiculous collar I had to wear. I wasn't sure I would be able to do it, but I did. And yes, I cheered for myself.)

And little by little I've seen improvement. There are times when the pain isn't quite so bad, and as long as I'm not moving I don't even think about it. (Then, inevitably, I have to get up again, and it reminds me all about itself.) But the majority of the time, it isn't as bad now as it was at first. I still have setbacks, when it comes back with a vengeance, but I think those times are coming fewer and farther between now.

It's been tough, emotionally. I have to admit that, too. It gets frustrating being in pain, and it gets frustrating not being able to do the things that you want to do. But what brings me out of those days is reminding myself that I've been in miserable pain for the past 18 years. (Granted, it was a different kind of pain, but no less miserable, and a lot less temporary.) And I think about all of the ways that the CRPS has negatively affected my life for all of those years. So if in the end this implant can help that, then it has all been worth it.

I've noticed that I've kind of gotten frustrated with myself a few times over the past month, scolding myself that I should feel better by now, and that I should be able to do more, and take care of all of the things that I used to be able to do. But then I remind myself that it's only been a month since someone sliced into my spinal column, moved the vertebrae around, and left a foreign object inside. I suppose it's bound to take a little time to recover from something like that. So then I kind of give myself a break.

Monday, October 4, 2010

Flipping the Switch

I saw the surgeon last week for my check-up. He poked at my incisions a bit, said everything looked ok, reminded me to wear this lovely collar for another week (and then the other one for two weeks) and said I don't have to see him again unless something goes wrong. I said I hope I don't ever have to see him again, he said no offense taken, and we parted ways. It took maybe five minutes, tops.

While it was good to hear that the wounds are healing properly, that wasn't really the part I was looking forward to. The reason that this visit was supposed to be exciting was because I was also meeting with the rep from the implant company and finally getting the thing turned on. Yea! This was what all this misery was for, right? Finally going to reap the rewards! (I tried not to get my hopes up, because, you know, that's a sure way to be disappointed. But I couldn't help it. They were up just a little.)

So... you know that "wah, wah, waaaaa!" sound you hear when something doesn't quite deliver the bang you're expecting? Yep. That was the sound I heard. I have to admit that it was a bit disappointing. But it was educational, and now I have a better understanding of how things are going to (and should) go, so that was good.

The rep that I met with this time was really nice (unlike the stupid blonde chick that did my trial implant. But that's a story for another time.) She showed me how everything works, and how to charge it, and all that good stuff. And she turned it on. (Insert "wah, wah, waaaaa!") It's not that it didn't go on or anything. It's just that this early after surgery, it isn't really going to do a lot. (Thanks again, stupid blonde chick. Way to not prepare me for any of this.)

It turns out that this soon after implantation, when everything is still so raw and fresh, you just can't turn it on high enough to actually do any real good. (You just barely give it any juice, and it WAY overstimulates the outer extremities before it can reach anything farther up.) So in another couple of weeks or so I'll go back and we'll play some more with the programming. Hopefully at that time I'll be healed enough that we'll actually be able to get somewhere.

Sigh. Waiting kind of sucks. I was all excited to finally feel a little bit of the rewards for all of this. But I have to keep reminding myself that it hasn't even been two weeks yet, so I just need to chill out. (Sigh again. I hate having to tell myself things I don't want to hear.) At least now I know that this is normal, and it's how it's supposed to go. So I have that, anyway.