Grown accustomed to...

I’ve gotten used to a lot of things. I’ve gotten used to the reduced mobility and needing help with more than half of what I want to do. I’ve grown accustomed. I’ve grown accustomed to the constant constipation, hemorrhoids, nausea, vomiting, and quality time spent in the bathroom. I haven’t grown accustomed to the weight gain. I’m used to the aching from unused muscles, the way my body won’t rest at night, and how I must plan to do only one simple thing a day – washing dishes, don’t plan on a doctor appointment. I’m used to all those doctor appointments, the waiting, and the many medicines they prescribe. I’m even used to the side effects.

I’d grown accustomed to not living, but surviving. And then, within only a few short hours, it was all turned upside down. I lived. It was my guests. In the few short days with them I lived and I liked it. I got used to it. And when it was over I fell back into the old ways with a dissatisfaction that left me in a depressed stupor.

So this past weekend I was laying on the couch, limbs falling where they may, sighing loudly about my depression and unhappiness, my misery seeking company, when my wise-beyond-his-years husband said to me, “So what are you going to do about it today?”

Oh. I sat up, thought for a few moments, and then started moving – no game plan, just started moving. I got dressed, put in my contacts and applied some deodorant, you’re welcome. I opened some blinds, poured myself some coffee, sat down at my computer, and started my new online class.

So I couldn’t go for a walk in the park, or sit and read in my favorite coffee shop. So what? But I could get a kick in the pants from a wise man and reinvent myself yet again. I’ve grown accustomed to that, too.

Pain

I need to describe this to you. I can say “pain” and get nods. But I need to describe in detail without using the word pain what this is like, especially what it has been like the last few days.

First, think back to the last steak you put on the grill and how the rack lines seared into the flesh, creating a deeper and deeper indentation. This is the burning, searing pain.

Cutting through a tough cardboard box with very dull scissors, only to have it snag and catch every few centimeters, is akin to the dull pain that takes over most of my lower back, hips, butt, and thighs.

Now for the nerve pain, the headstrong and unpredictable nerve pain, that can drop me to the ground at its worse and make my entire body twitch at its best. Imagine an old mercury thermometer sitting in the hot sun, perhaps the hot sun of the high desert. It shoots upward, and recedes, shoots upward, and recedes. (To be clear, in my case, it shoots downward, but you get the point.)

And finally, the stabbing. If you’ve ever had a nail through your heel or kitchen knife through a finger, you are on the right track. But this is how I see it: a thick carpenter’s nail is being hammered only slightly successfully through a block of concrete. The small fractures and fissures point to the fact that the whole block feels it, and it is a constant endeavor, moreover one can’t help but wonder if you could just drive the nail clean through, get it over with, wouldn’t it feel better?

That’s the worst of it. Knock on wood?

The Glad Game

My guests are gone and the last two days I have wallowed. I have mentally composed whiney bullshit in my brain to put out there to the universe, but then something stopped me – a conversation I had with my guest.

I was bemoaning how much I loved a pair of shoes (a picture of which is posted on my bathroom mirror) and how by the time I was able to wear the glorious pair of strappy high-heeled sandals, they’d be off the market. To this she replied, “But by then they’ll have something better.”

This of course stopped me, full on stopped me. And as I’ve considered this over the past couple of days, I’ve decided this post will be all about the glad game, or rather, the grateful game. I’m going to list some things that I’m recently discovered or have always loved.

I thought about listing the things I missed or the things I wished I could do, but that would be whining or bitching. No, instead, let’s all play the glad game together. I hope you’ll add some of your favorite things!

-Lifesaver Sherbet! Comes in three tasty flavors and has the best texture of any sherbet I’ve ever tried.

-Being a true vegetarian: it feels good to help the earth!

-Lost. Enough said.

-Fringe. Another JJ Abrams masterpiece (back with new episodes April 7).

-Sleeping with a minimum of 5 pillows, comfy and comfy.

-Bamboo cotton yarn in about a million colors and the softest yarn I’ve ever felt. Bamboo is about the most sustainable material on the planet!

-Family, however you define it.

-“Butt dogs” see pictures to the right.

-Chai (Oregon Chai and soy milk, yummy).

-I got my Sims2 username for Sims3! Score!

-Finally turning 30 this year, finally!

Just had to add a few more:

-WALL-E!

-Pooping (being a vegetarian has really helped with the whole constipation thing!)

-Imitrex (generic, of course)

-Gabriel Garcia Marquez books

-Going to school

-The way cool Moleskine notebook I got from my hubby for Christmas that I never go anywhere without.

A Confession

This post is a confession. I’ve been feeling so great spending time with my guests that my self-care and attention to my body has kind of gone out the window. The energy and spirit they bring is infectious and I can’t help but get wrapped up in it! Not to mention that this is the most fun I’ve had in months and months.

But this morning, holding on to Paul to get out of bed, and last night, limping around the house, it really hit me. Yes, for those of you who’ve already reached this conclusion: I over did it. I hate that phrase, but it’s true. Hard to admit, a hit to my pride, but true.

I really like to play pretend. I like to pretend, until it catches up with me. Then as I sit on my icepack and mentally kick myself, I still like to play pretend. What can I say, I’m a dreamer.

It's a good thing.

A short note today. A good side effect of migraine medication: it sort of numbs my whole body. So when I hate these awful headaches and take medication, I kind of get this numbed feeling. It’s a weird, heavy feeling.

But today it allowed me to do some fun, out of the ordinary (for me) things with an out of town guest. And it was a truly great day!

Here’s a few pictures from the archery range and the dog park!

Meet Paul!

Meet my new friend Paul (as in Walker). He makes a much better helper than actor. My husband used him after his back surgery, and I used him briefly after my pain pump surgery, mostly as a dog guard.

Now I use him to help me get out of bed because my right side of my back and my right leg are so messed up from the pain situation. He’s really quite nice. Thank you, Paul!

PS I’ve posted some pics of my doggies. To quote The Simpsons, “the cause of and solution to [most] of life’s problems.”

Answering your question...

I was asked the question, how does making up your mind about taking pain medication again and making up your mind about the pain pump v spinal cord stimulation all fit together? A couple of people have asked now, so I thought I’d address it here.

First, the pain medication. This is a temporary fix to what I hope is a temporary issue. I need to decide if going back to pain medication is worth the side effects, the taking three other medications to deal with taking it, the lack of mental clarity and decreased alertness/cognitive ability, and the inevitable withdrawals. But the pain is at such ridiculously high levels, I think I need it. Today I put a call in to my doctor.

Second, the long term solution. This one is out of my hands right now. I am waiting to hear what my doctor has found out in all his calls around to my other providers about basically, “what the hell happened?” Then we’ll make a decision about where to go next. One of those options I wrote about in an earlier post. Once I get an update, you’ll get an update. And like I said, I put a call in to check on the status of this.

But patience is required here. My doc has only one day in clinic a week; all the rest he is in surgery. So think about it – five weeks equals one regular work week. I think the wait is worth it; I like this guy. Or at least the wait better be worth it!

I’ll keep you posted!

Bad movies!

Ah, bad movie day. A time honored tradition of getting “the gang” together and watching the worst of the worst movies while shouting insults, reciting the dialogue along with the actors, and postulating what if scenarios that would make the flick even worse. Last night we hosted a bad movie day/pizza party and it was really fun.

Only I couldn’t stick around for the end. I had to call it quits before the end of Black Out starring Brian Bosworth. I made a valiant effort but the pain got to me and I had to pack it in for the night. And it sounds like the end of the movie was the absolute best part!

The flipside is that if I was smacked out on drugs I wouldn’t have even wanted to attend a bad movie day, much less host one. So the dilemma repeats itself. Pain medication so I can live my life, or no pain medication so I can live my life?

PS It’s gotten so bad that when I am sitting or lying down I can’t lift my right leg by itself. That weights heavily in my decision making process.

More like House Every Day...

Today’s post will be a bit more light-hearted than the last, a bit tongue in cheek, so don’t take this too seriously.

It’s just that I’ve noticed I’m growing more and more like one of my television heroes, Dr. Gregory House of the TV show, “House”. I’ve included a picture to illustrate one or more of my points.

1) We are both complete misanthropes. He a lot more notoriously than me, but my sister who lived with me for awhile can verify the accuracy of my statement that indeed, I am a misanthrope.

2) We both deal with chronic pain (only I realized several years ago how useless popping Vicodin actually is for dealing with this kind of pain).

3) We both believe we are right pretty much all of the time. And now that I am pursuing a medical education, there’s something else to gloatingly be right about pretty much all of the time. :)

4) We are both forced to wear trainers to deal with our lack of mobility. No cute shoes for me. Just solid, supportive trainers.

5) Here’s where we differ, but more and more I want us to be the same. He has a cane to help himself limp around. I think that would actually be quite nice and reassuring.

So maybe I watch too much TV (well, no, not maybe) but I can see some similarities here, can’t you?

Catch-22

Catch-22. In this novel by Joseph Heller, in order to get out of flying a mission in WWII one had to prove insanity, but if one proved insanity it proved you were sane enough to get out of the mission and therefore had to fly the mission. He wrote:

“All he had to do was ask; and as soon as he did, he would no longer be crazy and would have to fly more missions. [One] would be crazy to fly more missions and sane if he didn't, but if he was sane he had to fly them. If he flew them he was crazy and didn't have to; but if he didn't want to he was sane and had to.”

This is my life, only not the fighter pilot part, and part of my ongoing dilemma regarding whether or not to try to get back on pain medication.

See, I can’t sleep regularly because of pain. Because of that, I get migraines regularly. When one gets regular migraines, regular and scheduled sleep is a must for avoiding them. But I can’t avoid them, because I wake up at all hours and can’t sleep because of pain.

And I can’t get rid of the pain and I can’t even use my ice packs the way I used to because of the damn frostbite (shallow frostbite, don’t worry).

This post is a bitch-fest, and I didn’t mean for that to happen. But it’s 3AM and I have a stabbing through my right eye migraine and a pain especially down my right leg back problem and am sleepy and grumpy.

The good news is tomorrow for my chemistry mid-term my brain will be unclouded my drugs and I will remember what I’ve studied. I’m just trying to decide if it’s worth it.

"I am a bird girl now..."

For this post I thought I’d include the lyrics to one of the songs on my bedtime chill-out playlist. As I’ve mentioned before, I listen to my iPod as I fall asleep. The following is one of the songs I hear as I try to fall asleep, and as such is soothing and calming.

Bird Gurhl
Antony and the Johnsons

I am a bird girl now
I've got my heart
Here in my hands now
I've been searching
For my wings some time
I'm gonna be born
Into soon the sky
'Cause I'm a bird girl
And the bird girls go to heaven
I'm a bird girl
And the bird girls can fly
Bird girls can fly

Pain v. Pain Medication

More tradeoffs. It’s been wonderful having clarity and not being under the constant fog of medication. I’ve already written about that. But on the other hand, I can’t do much and when I do…

After cleaning the kitchen (dishes blocked access to the sink) and mixing up a quick batch of cookie dough, my husband asked me, “Did you overdo it?” See, overdoing it has been an issue with me in the past, just ask my sister who has often been the one asking the question.

But to this inquiry I replied, “If I do anything, it’s overdoing it.”

Now I do the dishes and can barely stand afterward. I do my homework and thankfully remember what I’ve read, but can’t sit up without excruciating pain. I’m starting to wonder if I shouldn’t just get back on the pills. I hate them and I’ve tried about everything (NOT methadone, although it has been recommended). Here’s a list, just a little FYI:

-Lortab
-Vicoden
-Norco
-Oxycontin
-MSContin
-Dilaudid
-Fentanil
-Bupificaine
-Duragesic patches
-Ultram (which technically is an NSAID)
-Countless NSAIDs (non-steroidal anti-inflammatory drugs)
-About every muscle relaxer manufactured
-Currently on Neurontin (which at least makes me sleepy at night)

I’m sure I’m leaving something out, but you get the idea. And the dosages, oh, that would take days to list. But the point is, as I ramble, that I hate them all. I always have had to take 2-3 other medications just to tolerate the pain medication. It’s just not much of a life.

But lately I’ve been wondering, especially late at night when I lay awake crying and trying not to wake my poor, long-suffering husband, is this much of a life either?

PS I’ve added a link to the right side for Medtronic, the manufacturer of my pain pump that has some info for those curious about it.

Frostbite from my loved ones?

Here’s a total bummer. My beloved ice packs, love of my life (okay, not really, but I really do like them) have given me frostbite! At least that’s what my husband observed. He says I have to be careful with the beloved icepacks because the frostbite can get serious. I practically live on those things; there are five of them total and I rotate all day long. So I’ll be careful. I don’t want my flesh rotting off. That would complicate things, wouldn’t it? :)

A Confederacy of Dunces

I haven’t been getting to sleep until at least 3 or 4 in the morning. It’s mostly pain. Hard to sleep when your nerves jerk you awake like that… but it’s also the pump issue. I keep going in circles. No one ever listened to me or believed me when I reported random, strange, and unusual side effects and problems. And even when the surgeon had a chance to review his work, he still didn’t catch it.

A good friend was hanging out with my husband when I came home from the official bomb-drop appointment. He was great to point out the many positives of this. There are positives, lots of them.

What I keep getting back to is just how many people were complicit in the fallacy of “everything is okay and the patient is wrong”. That’s why I’ve titled this post after one of my all time favorite books. Because that is what this has been for a year and a half – A Confederacy of Dunces.

Is this real?

At my appointment today with my neurologist, I got a bomb dropped on me.

My pump was put in wrong.

You read that correctly. My pump was put in wrong.

It was put in wrong and that’s why it never worked. The tube that was supposed to go to the space inside my spine where there nerves run, but the surgeon didn’t get it in there. And even a year after, reviewing a dye study of his work, he missed it.

My surgeon is working on what happened and what the next step should be. But he did tell me that he would figure out if I should:

a) Correct it and try again
b) Get a new pump because this one is all kinked up and ruined (his preference)
c) Go the Spinal Cord Stimulator route

And he said he’d be my surgeon.

This explains so much. The pump trial was so successful – it was almost miraculous. But then the pump never worked. It explains why I’d get migraines every time the dosage was increased. It explains a year and a half of things.

But right now I am grieving. I’m grieving what I lost since August 2007, and what I’ve suffered. And right now I am not sure if I’m strong enough to keep trying. This fight has taken so much from me and everything out of me. Almost everything.

PS The picture is a shot I took of one of my CT films. If you look closely, on the right side of the picture you can see a bit of white sticking out. It is scar tissue where the tubing of the pump is kinked.

When it feels good

Friday night I made the unreasonable choice. I made the choice for friends, laughs, music (the musically gifted Thomas Paul), a great bar (Pengilly’s), and fun. And yes, most of Saturday was spent suffering from that choice, but only in a physical sense. Mentally – spiritually, I couldn’t be happier.