Just Keep Swimming

I took the kids to see Finding Nemo yesterday. Yes, we own it on DVD, and we've seen it many times. But of course we had to go see it in the theater, because now it's in 3D. I didn't really mind, though, because it's a cute movie, and seeing it on the big screen was kind of cool.

While the whole movie is fun, and all of the characters have their merits, Dory has always been my favorite. Sure, she has issues. But she is incredibly sweet, and caring, and always means well. And I love her attitude. She never lets her problems get her down, and her glass is always half full.

I've always kind of related to Dory in a way. I don't exactly suffer from short-term memory loss like she does, but thanks to the issues associated with the CRPS, coupled with the years of pain medications, I do have trouble with my short-term memory sometimes. So every time I suddenly forget what I was doing, I think of her.

And sometimes, I like to sing her song.

I've been a bit of a "Mr. Grumpy Gills" the last few days. I've been trying to fight it, but even those of us who do our best to always look on the bright side can have our cloudy moments too. Unfortunately it comes with the territory of living with a chronic illness. 

We all have our ups and downs - I know I'm not alone in that. Sometimes it's easy to believe that we can get through it, and that things will get better... and then there are times when just getting drunk and having a big bowl of ice cream for dinner sounds like a really brilliant idea. (Not that I've ever actually done that. But I can't lie - there have been moments lately when it did briefly cross my mind.)

But the "downs" do eventually pass, and the "ups" come back. So we can never let ourselves forget that all we have to do is just keep swimming.

The First Year

Last night it occurred to me that today is my anniversary. It was one year ago today that I went under the knife and became the proud owner of my very own spinal cord stimulator. And yes, dear friends, this feels like an event worth commemorating. (I kind of feel like I should have baked a cake or something.)

As with any relationship, my stimulator and I had a bit of an adjustment period. We had to get used to each other. Some wounds had to heal. We had to figure out who was in charge. It was definitely not love at first sight. But I am happy to say that we've put our differences behind us, and ours is now a happy, healthy, beneficial relationship.

If you've been with me this whole time (of if you've gone back to the beginning and read all about the journey) then you know that the surgery (or mostly the recovery) was not even a little bit easy. But you also know that I would do it again in a heartbeat. When it comes to the CRPS pain, it has made a world of difference.

But there is another, very important thing that I've learned from all of this: The spinal cord stimulator is not effective for every kind of pain. For the CRPS, it works wonders. I don't have nearly the pain I used to have. (I still feel some of it now and then, but it is nothing close to what it used to be.) Unfortunately for me, though, the CRPS is not my only problem, or my only source of chronic pain.

Going into this, my doctor and I had kind of been cautiously optimistic that, since the stimulator was being placed in my neck, it might also be able to help the other pain that is being caused by my oddly misshapen spine. But sadly it has not. The unit is set up so that I can get stimulation to that area. Unfortunately the pain is such that the stimulation just doesn't mask it.

Obviously it's disappointing that the stimulator couldn't do it all, but we knew that might be the case. (And we're still working on other ideas for the neck pain. Hopefully one day in the not too distant future I'll have some good news to report there.) For now I will continue to be very happy that at least I was able to get some much needed relief in one area.

And so, because it's my anniversary (and because I really like balloons), here's today's little bit of happy:

My Goa'uld Scar

Okay, if you get the title of this post, then you're a geek. But I also love you just a little bit more. (If you don't get it, ask one of your favorite geeks. They all get it.) Or, if you don't want to admit that you don't get it, you can find out for yourself.

So for the first few months after surgery, it actually did kind of feel like I had an evil parasite in my neck. But now that I've healed, and learned the ins and outs of working with my stimulator, I've come to love it. It's been just over six months now (I know! Can you believe it?!) so of course I started going in to reflection mode. And I know some of you were curious, so I figured I'd share a little more about what it all is.

Not an evil parasite after all.

This is the electrode - not the actual one that's in my neck, but similar. It was implanted under the vertebrae of the cervical spine, where it sends electrical impulses through the nerves. So now instead of the horrible pain from the CRPS that I had been feeling constantly for years, I just feel the electric tingling.

It definitely took some getting used to, and it doesn't completely solve the problem, but it does do a world of good. 

The electrodes are attached to a battery just like this one. It's implanted just under the skin in my back, roughly in the kidney area. With periodic charging, it keeps everything going. They say that the battery should last for about 10 years, after which they'll have to go back in and replace it. Fortunately, the incision for this part was nothing - not anywhere near as miserable as the one for the electrodes. So that surgery should be no problem. 

As you know if you've followed this blog, particularly in the early days, the recovery from this surgery was not, by any stretch of the imagination, easy. It was painful. Really, really painful. I couldn't move, I couldn't sleep, I couldn't eat, I couldn't do anything for myself. It wasn't something I'd want to go through every day.

But that lasted for a few months. By about the 4th month, I was pretty much able to resume most activities, and the pain had gotten much easier to deal with. (It probably would have taken even less time to reach that point if I hadn't developed complications. But even those eventually passed.) And now, 6 months out, I think I can safely say that I'm completely healed. While I still have other pre-surgery issues that I'm continuing to deal with, I haven't had any more problems from the surgery itself. Overall, I'd definitely say it was totally worth it.

And ok, we all know that this scar is actually from where the electrode was implanted. But be honest - next time you see me, isn't a little part of you going to want to check and make sure my eyes don't glow?

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.

Spinal Cord Stimulators

I have been living in pain for the past 18 years, thanks to a condition known as Complex Regional Pain Syndrome (CRPS.) Heard of it? Most people haven't. If you're curious, you can read a little more about it here: 

https://sites.google.com/site/chronicpainstory/

That's a web site that I created a while ago for a class assignment. It's a year old, and I haven't done anything with it since the class was over, but it still has some good information. I'm sure I'll talk more about my long, miserable, 18 year history on here eventually, but it's not the point right now.

The point right now is that in a few hours I'll be going in to surgery to have a spinal cord stimulator implanted in my neck. It's kind of a freaky proposition, and it's definitely not something I'm going into lightly. But like I said, I've been dealing with this for 18 years, and I've tried a LOT of different treatments. This is what it has come to.

The gist of it is, they put little electrode paddles in my neck, then thread the wires down to a battery pack, which they implant somewhere in my lower back. Once it's turned on, the unit sends electrical impulses through my nerves, interrupting the pain signals. So, if all goes as planned, I will from then on feel a tingling or pulsing sensation instead of the horrible pain that I usually feel.

So I want to share my story of surgery and recovery with all of you. I know those of you who know me personally are concerned, and I appreciate all of the well-wishes that you've been sending. But even more than that, this is also for those of you out there who might be going through something similar, and need to know that there is someone here who understands. Or if you're considering the surgery, I hope I can help shed a little more light on what it's actually like, and maybe offer a helping hand as you go through it. 

I'll let you know how it goes, and keep you updated about my recovery along the way. I'll post again as soon as the drugs wear off and I'm coherent again. ... Nah, scratch that. It'll probably be more amusing if I don't wait. :)