Wednesday, September 29, 2010

The Terrible, Horrible, No Good, Very Bad Day (Mostly)

Ok, so by now you know at least two things about me: 1) I established this blog - for the most part - to give a real account of what my surgery and its aftermath were like, and 2) that I almost always (sometimes even against my will) find a bright side to any given situation.

Honestly, I struggled for a little while about whether or not to talk about today. (Ok. It's after midnight, so technically it was yesterday. Whatever.) The day was crap-tastic. Bordering on crap-tacular, even. I was cranky, and miserable, and I didn't want to talk about it. And I didn't want you to have to hear about it. But I realized that the aforementioned "real account of what my surgery and its aftermath were like" wouldn't really be real unless I was honest about days like this. And it turns out that days like this happen.

It's been just over a week now since surgery, and I'm still in a LOT of pain. Everything is stiff, and sore, and I still can't move. And now both incision sites are really itchy, which is driving me insane. This collar is hot, and annoying. (And for some reason last night the plastic parts were rubbing on my ears in a weird, irritating way. Don't know what that was all about.)

I feel like I'm sleeping all the time, but I never feel like I've gotten any rest. You know how when you have those really stressful or overly eventful dreams you wake up and feel like you haven't slept at all? That's what it's like. All the time. And I still can't ever remember what day it is. I missed an assignment in one of my classes because I spent the day thinking it was Monday. Yeah, I went back and turned it in (10 hours late.) And I know in the grand scheme of things one late assignment is not the end of the world. But I'm one of those over-achieving honor students, so stuff like that really irks me.

And the hardest part... this whole things is taking a noticeable toll on my kids. Last night my daughter woke up in the middle of the night screaming for me. My husband was finally able to calm her down, but it just broke my heart. All she wanted was to climb in bed and snuggle with me. I couldn't let her, because the pain would have been too much, but she doesn't understand that. All she knows is that she wants me and I'm not there. I know the kids are in good hands, and are being well cared for. It just kills me how little time I'm able to spend with them. And for the most part they're having so much fun with Daddy and Grandma that they don't even notice that I'm sleeping all day... but when they do start asking for me and I can't go to them, it makes me feel horrible.

So this was one of those days. It wasn't the first time I cried since the surgery, but it probably was the most I've cried. From the pain... from the irritation... from feeling sorry for myself.... I guess these days are bound to happen. And I guess sometimes we just have to let them. (Get it out of your system, and all that.)

But, of course, there did have to be a bright spot to the day. I managed to take a shower almost all by myself! Yes, I still needed a little bit of help, but I'm making noticeable progress. I know that sounds like a weird thing to be excited about, but when you go from not being able to do anything for yourself to being able to do at least a little bit, it feels like a big accomplishment.

And now the drugs are kicking in, and things are starting to relax a bit, so I think I shall try to get some sleep.


My husband read this post. Know what he said?

Blah, blah, blah. Me, me, blah.

Of course, that made me laugh, and cheered me up. Totally what I needed.

Thanks for keeping it all in perspective, honey. :)

Monday, September 27, 2010

How I'm Feeling: A Pictorial

Yes, for the most part I still feel like Joan Cusack in Sixteen Candles. But I've realized that there are some other good illustrations for how I've been feeling since the surgery.

For the most part, I've mainly been doing a lot of this. Recovery is exhausting, so I sleep a lot. And sleeping in a half-sitting position, propped up on way too many pillows, unable to move because of the awesome collar I still have to wear... yeah, it's probably about as comfortable as if I were sleeping on top of a dog house.
Spending most of my time in bed, unable to move much, has made for some really stiff muscles. (The past couple of nights I've actually been woken up by involuntary muscle stretching. I didn't even know that was a thing, but apparently it is. My arms and legs just start stretching, and of course that hurts, so the pain wakes me up.) And I'm so stiff that every time I wake up, I want to say "Oil can!"

Can you blame me?

Yes, I get grouchy every now and then. But I try not to dwell, and usually I get over it fairly quickly.

When I do finally make it out of bed, I find that I feel like something that should be staring in a George Romero movie. I do the bleary-eyed, undead stumble, blindly feeling around for everything I need (partly because my eyes don't want to focus, and partly because I can only see what's right in front of me, thanks to the collar.) It has to be amusing to watch.

And there are times - mostly when I try to eat - that I feel like Doug wearing the Cone of Shame. Not only can I not lick my stitches ;) but I can't really do anything else, either. Like my "zombie shuffle," I'm sure it's amusing to watch. But, like everything else, it does get tiresome. At least I only have to do it for a few more weeks. And who knows? Maybe eventually I will be Alpha too.

I was sitting here yesterday, waiting for my husband to bring me something for lunch. As my mind wondered, I suddenly thought "he's just going to bring me a bucket of fish heads, isn't he?" Thankfully, he didn't - and he wouldn't have even gotten that reference. And yes, I'm living in my upstairs bedroom, not the attic. But I still kind of feel like Bart's evil twin Hugo. And I'm not even sure that I know how to skulk. But maybe I should learn....

Ten Things I've Learned

1. It matters where they go, and what they do.
This was my first surgery, so I didn't know what to expect as far as post-op pain, but I kind of figured that cutting you open was cutting you open, and that both incisions would hurt about the same. Wow, was I wrong! I couldn't even feel the lower incision until the next day. Not kidding. I had no idea where they had put it. I can feel it now, and it hurts a little. But the one in my neck... that's a different story. That one hurts! It turns out that cutting all the way down to the spinal column and then moving the bones around is a lot different than just cutting a few inches down into the flesh.

2. It hurts to laugh after spinal cord surgery.
Yeah, it pretty much hurts to do anything that requires movement. That's kind of a no-brainer, I know. But my brother-in-law made a funny comment on  my facebook wall, and that was one of the first things I read after surgery. I laughed, and it hurt really bad, so I just have to give him a hard time. (Thanks, dude.)

The worst thing, actually, is coughing. Not only does the involuntary movement hurt my neck, but I also get little surges of electricity through all four of my limbs. I remember running into that when I had the trial implant in place. (It didn't take me long to learn to turn it off every time I felt a cough or a sneeze coming on.) But this one isn't even turned on yet, so I wasn't really expecting to get shocked by it.

3. Kids can be gentle.
In all honesty, the thing I was most concerned about going into this - more than any potential complications, more than the pain of recovery - was how it would affect my kids. (Specifically, how I would manage to take care of them once my husband goes back to work and my mother-in-law goes back home, and how they would react to my incapacity.) The former is yet to be seen. The latter is not as bad as I had feared.

The first thing they both did when I got home on Wednesday afternoon was to come over and give me veeeery gentle hugs. It was adorable. This afternoon my 4-year-old brought me a teddy bear to snuggle with, because "I thought it would help you feel better." Then he made me some pretend macaroni soup, and told me to "Eat it. It will make you stronger."

4. Eating nothing but Jello and apple sauce gets old.
Oh, solid food... how I miss thee. Ok, I know it hasn't been that long, but still. At first I was so queasy after surgery, and because of all the pain meds, that I didn't really want anything. But then I got hungry, and did want something, only to discover that I couldn't chew anything. (I'm stuck in the cervical collar, which pretty effectively immobilizes the lower jaw.) If I were to try to chew anything, I would have to do it by moving my upper jaw. Not only is eating that way very difficult, but moving that way after this surgery is very painful. So Jello, apple sauce, pudding... these are my new best friends. And my new worst enemies.

5. One of the blades in my ceiling fan is lower than the others.
Not being able to move sucks. That's about as much sugar-coating as I can give that one. I lay in bed, staring at the ceiling. Sure, I get up now and then, for brief periods. (I'm sitting up right now, for example.) But I get way too tired way too quickly, and have to lay down again. My muscles are sore. I miss my elliptical. (That's how you know it's bad. When you start missing your exercise equipment. Bad, bad sign of going insane.) So I lay in bed and watch the ceiling fan spin. And now that I know that one of the blades is lower than the rest, that's all I can see. Another bad sign of going insane? When you start seeing noises. No joke. I can actually see the fan going "whomp, whomp, whomp" every time that blade comes around. Something has to be done.

6. My mother-in-law makes really good tortillas.
How many times, in the history of the human race, have the words "thank goodness my mother-in-law is here" been uttered? I'm guessing maybe half a dozen, tops. But I am actually really glad that she was able to come stay with us for a couple of weeks. My husband took this week off, which is cool, so he's been helping take care of me. But it's been really, really nice for the kids to have Grandma here to play with. And she's going to still be here next week after my husband goes back to work, so at least I won't be having to try to take care of the kids on my own yet, and I'll get a little more rest/recovery time. Plus, she makes really awesome homemade tortillas, and the whole house smells good all day whenever she makes them. :)

7. Warm, watered down Gatorade is even more gross than regular Gatorade.
The first thing that I did when we got back to the hotel where we were staying after surgery was to throw up all of the water that I drank in the recovery room. As far as "things to throw up" go, water is by no means the worst, but I still wouldn't call it pleasant. So it caused a bit of an aversion to water for a few days, and I pretty much stuck to apple juice, Diet Sprite, and Gatorade. I've never been a huge Gatorade fan, but it's one of those things that you drink when you aren't drinking water. I don't know why - just one of the mysteries of life, I guess. 

So my wonderful, sweet, loving husband has kept my bedside table stocked with all of my essentials - apple sauce, pudding, Jello, a bottle of apple juice, my favorite pink plastic bottle filled with water (which I have finally started drinking) and my second-favorite pink plastic bottle filled with Gatorade. He's awesome, and he's taking wonderful care of me (lucky woman that I am.) But in his infinite sweetness he put ice in the bottle of Gatorade, knowing that it is better cold than it is warm. The only problem was that I was sleeping so much, and not able to do much of anything at all, that most of the day went by before I even touched it. And that's how I learned how much worse being warm and watered down makes it.

8. Being able to watch TV online is awesome.
There's no big story there. It's just cool. And it breaks up the monotony that is my days.

9. Skin glue is pretty cool.
They used skin glue on my incisions instead of stitches. I don't know what it will mean for the scar (if it will make a difference at all) but it does mean that I don't have to go have stitches taken out, and that I can get the site wet. There's none of that "no shower for..." however long it usually is. I was (with great difficulty, a lot of help, and great pain) actually able to take a real shower. Yeah, the post-op shower is not the easiest thing I've ever done, but at least I can do it. And being clean is awesome.

10. Counting all the way to ten is really hard.
That was going to be a joke, but all kidding aside, this whole experience has been really exhausting. I can only get out of bed for little bits at a time before I have to pass out again. (It took me all day to write this, between naps.) Two days ago I went outside, because I was going stir-crazy and had to move around a little. I walked all the way to the end of my driveway, then down the sidewalk to my neighbor's driveway, and back home. I was so proud of myself! Then I spent just about all day yesterday, and most of today, sleeping. Sigh. I know that sleep is good, and I know my body needs the rest so it can heal. It's just tiresome, and I feel a little like whining sometimes. 

But, like I've said before (and I'll keep saying)... this is temporary. And it has a purpose. 

Saturday, September 25, 2010

So... how did it go?

Yes, the surgery is over, and I came through it just fine. My thoughts are still fairly random at this point. And if it wasn't for spell-check that would have said "farily ramdom." Yeah, that's about right. Pain killers are what they are, I suppose. So forgive the rambling-ness of this post. At the very least, it should be entertaining. (Or "shoudl" be entertaining... whichever.)

I won't lie - I'm in a lot of pain. But at the same time, it's all relative. I've been living with constant pain for 18 years, and this particular pain is temporary. So in a way, it's nothing. I don't know when it will go away, but I know that it will, and that makes a HUGE difference.

At this point, my days are still kind of a blur. I wake up, take pain killers, sit up and talk to my husband, or visit with my kids, or watch a little tv, or whatever, until I'm too exhausted (which doesn't take very long), and then I lay down, take more pain killers when it's time, and usually end up falling back asleep pretty quickly. Then I do the same thing the next time the drugs wear off and the pain wakes me up. I still have to look at my phone or my computer to see what day it is, and then try to calculate how long it's been since surgery. (Ever seen a drugged-up post-op patient try to do math? I'm sure it's very amusing.)

I have to wear the cervical collar for two weeks... and yes, I do feel like Joan Cusack in Sixteen Candles. And yes, it's only funny when you're watching someone else do it. I haven't tried drinking from a water fountain, but cups are challenging enough. And straws. The first cruel thing that the post-op nurse did to me was give me a cup of juice and a straw and make me figure out how to use it. Oh, sure. It's a little funny now. At the time it was just mean. :)

Ok - I'm exhausted. (Told you it didn't take much.) And my current dose of medication is starting to kick in, so it's time to lay down and stare at the ceiling for a little while. ... Jealous much? Yeah, you know you are. Don't try to hide it. :)

Tuesday, September 21, 2010

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: 

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. :)

Monday, September 20, 2010

Look on the bright side...

I’ve been “blessed” with this irritating ability to find the bright side to any given situation. You know how, when something kind of bad happens, people say “Well, look on the bright side…” and then try to make you feel better? You don’t have to tell me that. My brain just automatically goes there. Every time.

Think I’m exaggerating? A few years ago I had kidney stones – three separate times! – while I was pregnant with my first son. If you’ve ever had kidney stones, right now you’re shaking your head and you have that “ooh, I feel your pain” expression on your face. If you’ve never had them, count your blessings. And then ask someone who has had them. I’d be willing to bet that they’ll tell you it’s the worst pain they’ve ever felt. It’s miserable, excruciating pain. Kicking and screaming, feels-like-you're-going-to-die pain.

So there I was, in unbelievable pain -- the kind of pain that would make a normal person say some seriously dirty words -- and where does my wacky, oddly positive mind go? “Well, at least this is helping to prepare me for labor pain.”

Urg! Can’t I at least wallow in my misery for a minute? Come on! I’ve earned some whining! But no, there always has to be a bright side. And it was at that moment that I realized a great truth about myself: If I can find a bright side to having kidney stones, I can find a bright side to anything.

I’ve lived through a lot of crazy stuff in my life (much of which I’m sure will come up on here some time down the road) and there is a lot of crazy stuff still going on right now. And this is where I am going to tell my story. Sometimes we’ll laugh. Sometimes we’ll cry. Sometimes I may just rant about irritating things that are on my mind at the time. I can’t guarantee that there will always be a bright side to everything that I share… but knowing me, it’s bound to happen.

And in case it wasn’t already stuck in your head, here you go.

You're welcome. ;)