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Jay Lake
Date: 2008-05-19 10:18
Subject: [cancer] Being a drug puppet
Security: Public
Location:Nuevo Rancho Lake
Music:the ticking of the grandfather clock
Tags:cancer, healthcare, personal
This isn't cancer-specific so much as surgery-specific, but I am finding the whole drug experience to be more than a little frustrating. I'm currently taking hydromorphone (Dilaudid) on a sliding basis depending on pain level. I'm running pretty close to the minimum dosage, as the pain really has been pretty manageable since last week's Pain Crash. When I take the hydromorphone, I just check out. Sometimes I fall completely asleep, sometimes I drift off to the magical land of drool-dreams, sometimes I smile and talk but the world makes a lot less sense.

Who the hell does this by choice? Why?

I am being a drug puppet. The strings are owned by the hydromorphone. Given that the alternative is pain sufficiently intense to be more disruptive than the drugs themselves, I'll take the bargain, but it is an uneasy one at best. This stuff robs me of my intellect, of my focus, of my capacity to be multithreaded, of my ability to write or even read.

Once I am back in the fiction saddle, there is going to be some serious whoop-ass opened up. Meanwhile, being a tourist in the land of the slow, I am at least enjoying the dream fog.

Except when I am not, of course.
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User: renatus
Date: 2008-05-19 17:54 (UTC)
Subject: (no subject)
Who the hell does this by choice? Why?

As far as I've been able to figure from watching my mom recover from a drug addiction when I was a child, and watching various peers struggle with similar problems, in some cases it's self-medication. The world is too sharp and painful, they have too much crap going on in their own heads and no words or resources to deal with it, so they dull it or flatten it out with what they can find.

I know for sure in my mom's case she went through hell and back before she was 20 and struggled undiagnosed with bipolar disorder and ADHD. I seem to have inherited the bipolar disorder and it's been a giant pile of no damn fun at all, so I can understand the urge to dull it.

But at the same time, I value my clear headedness and mental acuity too much to want to dull them, even when they're weighed down by a low period so much I can hardly use them. It's like... everything hurts, but that little bit I have is all I have and I don't want to give that up. The closest I've come to wanting to blur it all is suicidal ideation... which is worse, from a certain perspective.
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User: biomekanic
Date: 2008-05-19 17:56 (UTC)
Subject: (no subject)
Who the hell does this by choice? Why?

I've never understood it myself, but I've seen it in family and friends, and lost family and friends to it. You're not alone in this regard.
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User: copperwise
Date: 2008-05-19 17:57 (UTC)
Subject: (no subject)
When I was on the Dilaudid post surgery I wondered the same thing.

I used to be mildly amused when I had to take a Vicodin and it made me goofy before I fell asleep, but now I'm so used to them that all they do is kill pain, I'm still fully functional mentally and don't even notice.

I have been meaning to ask, as well, as I can't remember how long your incision is...did they give you a binder for your abdomen? I ask because I had a 12 inch surgical incision in February of last year, and the surgeon did not give me a binder. I later found out that incisional hernias are extremely common and because of not having a binder I ended up with hernias all along the incision and had to have more surgery to fix those in November. After that I wore a binder for 2 months, but due to previous herniation now I have to have yet another hernia repaired. So I would highly recommend that you wear a binder to avoid further unnecessary surgery, as it truly Sucks.
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User: aitchellsee
Date: 2008-05-19 18:48 (UTC)
Subject: (no subject)
Seconded as to the binder rec!

(Been there, had the hernia repair -- also, as I think I mentioned last week, wearing the binder cut the healing time on my second surgery in half!)
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User: etcet
Date: 2008-05-19 17:59 (UTC)
Subject: (no subject)
there is going to be some serious whoop-ass opened up.

Isn't that how they got in in the first place?


(I know, I'm an asshole, making the guy with abdominal surgery laugh....)
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User: musingaloud
Date: 2008-05-19 18:00 (UTC)
Subject: (no subject)
"I am at least enjoying the dream fog.
Except when I am not, of course."

LOL! It's always good to keep a sense of irony and humor. Even in the midst of fogdom.

I agree with your philosophy. Even though I can understand the whole wanting to numb your mind thing, I can't handle the inability to function that goes along with it.
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User: martianmooncrab
Date: 2008-05-19 18:08 (UTC)
Subject: (no subject)
pain management is rocket science, and not every drug works the same because people have different reactions.

It took me years to get my doctor to give me drugs that addressed the pain, but not where it cut the brain loose.

After my surgery, they kept trying to give me Vicodan, which makes me puke (not good for abdominal surgery!, and waking terrors.

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User: akirlu
Date: 2008-05-19 18:24 (UTC)
Subject: (no subject)
I had a prescription for Vicodin for a while, before I got my gall bladder out. Vicodin makes me sleepy and stupid, and if I don't remember to eat before taking it, it makes me vomit quite spectacularly (to the extent that dry heaves can be spectacular). If this is the experience of people who get addicted to taking Vicodin recreationally, I can't imagine what the appeal is.

What I suspect is, people who use these things recreationally have a different experience of the drug. Individual brain- and general biochemistry is, well, individual. Everyone is wired slightly differently, and that's why side-effects warnings are described in terms of percentage of occurrence probability, rather than a dead-nuts certainty for all users. That's why psychopharmacological prescriptions are at least as much a matter of art as they are science. So in the same way that not everyone gets the dazzling high that I sometimes get from antihistamines, I have to suppose that not everyone has the same boring response to Vicodin and other opiods that I have.
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User: joycemocha
Date: 2008-05-20 01:20 (UTC)
Subject: (no subject)
Interesting. It seems that we have a small subgroup of folks here who can't take Vicodin.

I'm one of them. I'll go to sleep for 12 hours, and wake up puking. Or else I just start puking. Tylenol 3 (the real stuff) and I get along much better, but even then, codeine's not something that appeals to me recreationally. As something that nicely drys up my sinuses and stops a nasty cough, oh yeah, it's sweet stuff.

The DH has been taking Oxycodone for pain relief from his shoulder surgery. He doesn't find it entertaining, either. Works well for the pain, but beyond that...

Then again, I have a long list of antihistamines I can't take because of the nasty hallucinations....and they are nasty.
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mages just love me: katerina
User: in_the_blue
Date: 2008-05-19 18:39 (UTC)
Subject: (no subject)
Dilaudid is a thief of reason and awareness. Did they talk to you about Toradol at all? It's an NSAID, not an opiate, and I found it a perfectly acceptable alternative to Dilaudid after my abdominal surgery. As in... takes the pain away for eight hours at a time, no negative side effects like making me stupid or putting me to sleep or fogging my brain.

You might want to ask if it's a viable alternative in your case. I swear by it.
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mages just love me: bebop living room
User: in_the_blue
Date: 2008-05-19 18:40 (UTC)
Subject: (no subject)
Keyword:bebop living room
P.S. They didn't offer it. I had to insist on it.
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Doctor Pipe
User: dr_pipe
Date: 2008-05-19 18:45 (UTC)
Subject: (no subject)
I haven't been on any hardcore pain meds, but I can say that my decisions to exchange my intellect, focus, and various other abilities for whatever a drug provides have been based strongly on the temporary nature of the exchange. I don't mind losing that stuff for a few hours, in a space and at a time of my choosing, in order to have an experience that I could not have otherwise.

I sense that your question is more about people who choose to do drugs continually, in an addictive fashion, such that their exchange is more or less permanent, though. And that I can't answer, beyond maybe they'd prefer a haze to the difficulties of sharp reality for various reasons...
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User: timalyne
Date: 2008-05-19 18:51 (UTC)
Subject: (no subject)
I hear you...I was having trouble getting my homework done after my surgery. It sucked. And it will pass.
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J.K.Richárd: ONOZ!
User: neutronjockey
Date: 2008-05-19 18:57 (UTC)
Subject: (no subject)
Who the hell does this by choice? Why?

Addiction is a funny thing...actually it's not funny at all.

Escapism, neurochemical deficiencies and disease should about sum it up.

Hydromorphone is a 'no joke' analgesic. I'm glad you don't like it.
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Danny Adams
User: madwriter
Date: 2008-05-19 19:02 (UTC)
Subject: (no subject)
I have to agree with the self-medication comments. I know people who often drugged themselves into a stupor (or drank themselves into one) because they suffered from such a vicious depression it was the only way (as far as they thought) to dull the pain.

In other cases, it was due to chronic physical pain. Some of the drugs were prescribed, some not.
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Lawrence M. Schoen
User: klingonguy
Date: 2008-05-19 19:07 (UTC)
Subject: (no subject)
Who the hell does this by choice?

Welcome to my day job.

If you're not satisfied with the answers already given here (and renatus nailed a lot of it) then buy me a drink at Denvention and I'll give you more fodder for your fiction.

I tend to avoid writing about it in my own, but I like to write light, happy stuff. This is all dark and painful by comparison.
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calendula_witch: Tart
User: calendula_witch
Date: 2008-05-19 19:15 (UTC)
Subject: (no subject)
I think many (most?) people in the world are not as happy in their own brains as you clearly are in yours. For any of a myriad of reasons.

I have an uncle with mental health and substance abuse issues...a smart, clever, funny, and very messed-up guy. One time he was visiting me, and woke up from a dead sleep and immediately started talking talking talking...catching the look on my face, he stopped, pointed to his head, grinned sheepishly and said, "If you think this is bad, you should hear what it's like in here."
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When life gives you lemmings...
User: danjite
Date: 2008-05-19 19:44 (UTC)
Subject: (no subject)
The use of such drugs "recreationally" is a susbstitution for failed coping mechanisms or for pain relief- physical, emotional or psychic for people who don't know what else to do.

I am a strong brained, strong willed person and still have a fair amount of first hand personal knowledge of this which I am willing to share.

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Ruthanne Reid
User: ruthannereid
Date: 2008-05-19 20:01 (UTC)
Subject: (no subject)
Meh. The drugs definitely suck. I hope at least that what you're on doesn't have the added side effects of shaking/temperature changes/nausea/constipation/what-have-you.
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User: ellameena
Date: 2008-05-19 20:22 (UTC)
Subject: (no subject)
Narcotics taken for pain have a different chemical mechanism than when they are taken recreationally. This is an important distinction that most people are not aware of, and mistakenly worry that they will become addicted to pain meds they are taken for post-surgical pain or other serious pain. In fact, I just saw a press release for a study saying that something like only 2% of people who are prescribed narcotics for pain experience any addiction problems. So when you say you don't enjoy the side effects of your pain meds, you are in company with the vast majority of humankind.

Brain chemistry can also vary drastically between individuals, and my interpretation of people who choose to use narcotics recreationally is that they probably suffer from some degree of hyperstimulation, such that a "slow-down" effect is enjoyable to them. One should also not discount emotional pain. We don't have good ways to deal with acute emotional pain, so many people have no choice but to try alcohol or other drugs--and when done in moderation, this is actually not that bad. Having a glass of wine after a horrible day can be a healthy choice.
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User: joycemocha
Date: 2008-05-20 01:23 (UTC)
Subject: (no subject)
Good point.

And there are some conditions, such as chronic pain, where there aren't many other options. But those tend to be the minority.
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miki garrison: disco snake
User: mikigarrison
Date: 2008-05-19 20:30 (UTC)
Subject: (no subject)
Keyword:disco snake
Yeah, the drug puppet thing drives me a little nuts. One of my doctors is always on me because I don't take the pain meds nearly as often as I'm "supposed" to. For me, though, the whole point of the meds is to improve functioning. On even a low dose of most pain meds, I'm really not functional for anything above the level of reading children's books and watching game shows. So while I may not even be 25% functional with the pain going on, I may still be significantly more functional than I would be with meds on board. There is all sorts of fiddling I can do with which med, and the dose, and how I take it -- but at the end of the day, all of the pain meds which I am not allergic to do, in some way or another, fuck with my brain.

These days, I use the pain meds in that post-surgery time where pain control is extra important -- it's not just an immediate quality of life thing, good pain control actually improves your recovery -- and then I use them a couple times a month when my body needs a Sunday vacation from the pain.

Sadly, I now keep my pain meds locked up -- on more than one occasion I've had friends try to steal them. On a purely rational level, I can understand why, but on a gut level, I just don't get it. Feeling like someone has stuffed my brain in a sock is not a "high" I'd want to chase.
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jeffsoesbe: yeff yahoo avatar
User: jeffsoesbe
Date: 2008-05-19 21:07 (UTC)
Subject: (no subject)
Keyword:yeff yahoo avatar
Hi Jay --

I hope the fogginess clears soon and that you're back in full-fledged fighting action.

I took Mainspring along with me to SF this weekend, and it decided it wanted to make an LJ post of its adventures. The next time the drug fog hits, check out your book meandering around SF and the Livermore Highland Games.

Here's the link: http://jeffsoesbe.livejournal.com/184877.html


- yeff
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User: mmegaera
Date: 2008-05-19 21:09 (UTC)
Subject: (no subject)
I thought I had something to add to this discussion, having been prescribed oxycodone twice in the last three years (after shoulder surgery and after having my gall bladder out). I'm not so sure I still do after reading the comments, but -- for me the mental fog was the least of it, even though it wasn't how I'd want to be for any length of time. It basically put me to sleep for about five hours every time I took one, and I only woke up when the pain-killing effects wore off.

But it was the "slowing down of every bodily system" effects that got to me. Yeah, that system, too. Why anyone would take something recreationally that a) puts them to sleep and b) makes them physically miserable (it took four days for some of the effects to wear off after one lousy day's worth of pills) is beyond me.

Yes, I know different people have different reactions to the stuff, but as the doctor told me later, the whole point of that sort of painkiller is to slow everything, including the pain, down. So it must have at least some of that effect on anyone who takes it.

[scratches head]

It took at least that long for the brain fog to leave, too, even after I got enough out of my system to stay awake for more than half an hour at a time.

I guess I just don't have an addictive personality. I do, as one of my favorite fictional characters puts it, have mood swings on a bungee cord, and the perigee of that is sometimes ugly enough to make me wish I did, though.

But even the medications for that sort of thing are unpleasant enough that they're not worth it. Sigh.
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User: oubliet
Date: 2008-05-19 21:36 (UTC)
Subject: (no subject)
Some people don't mind the brain-fog aspects of a lot of the opiate painkillers..

I agree with the earlier poster that maybe a NSAI (non-steroidal anti-inflammatory) med might work for you.

I'd ask the doctor if Toradol (gen: ketoralac) is something that you can try, instead.

I remember when I had 4 wisdom teeth taken out al at once, I ended up not using the Vicodins that were prescribed. Instead, the ibuprofens worked just fine. 400 to 600 mg of iburofen every 6 hours worked fine for me. I prefer my brain unfogged, too.
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User: lt260
Date: 2008-05-19 22:37 (UTC)
Subject: (no subject)
Who the hell does this by choice? Why?

I am being a drug puppet. The strings are owned by the hydromorphone. Given that the alternative is pain sufficiently intense to be more disruptive than the drugs themselves, I'll take the bargain, but it is an uneasy one at best. This stuff robs me of my intellect, of my focus, of my capacity to be multithreaded, of my ability to write or even read.

Your answer is partially in what you wrote. You are robbed of functioning; your life is stolen from you for as long as you take the drug. It is a life and creativity and abilities and intellect that give you huge measures of positive feedback. You crave that mode of being. For you, it is a balance between post-surgical, excruciating pain and functioning in a manner that you would consider to be normal. Presently, the scales are tipped in favor of “no pain” to the detriment of normal functioning. As you heal, the scales will tip back the other way. You will become “Jay” again.

Imagine a life that really sucks. Full of pain and misery and depravity and hopelessness. An existence that is a struggle to get through on a moment by moment basis. No writing. No job. No intellect. No multitasking. No creativity. No imagination. No meaning in your life. Instead of having intermittent crises amongst a continual flow of meaningful existence, you have rare happy moments during a ride down a long, wide river of shit and despair.

Now imagine that someone hands you a substance that will take it all away. Not permanently, but it will give you respite for a few hours. A period of time when you enter a twilight zone of impenetrable neutrality. A span of your life when you are comfortably numb and life cannot touch you. A fuzz that envelopes you and shields you from decisions (errors) and choices (mistakes).

When you are the captain of your ship, it is a lot easier to ignore the siren call from the isle of Narcotica then it would be for the slaves who man the oars.
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User: martyn44
Date: 2008-05-20 08:04 (UTC)
Subject: (no subject)
Been there. Its like listening to rage metal. Wonderful when it stops.

Be strong.
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User: willyumtx
Date: 2008-05-23 06:56 (UTC)
Subject: (no subject)
The antereograde amnesia effects of Versed were rather interesting.

Different states of consciousness can be rather expanding in terms of experience.
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User: (Anonymous)
Date: 2008-05-26 02:48 (UTC)
Subject: drugs
I can sympathize with the brain fog.I was taking an antidepresent for pain at night but it made me fog-brained in the morning so I stopped taking it and have been trying other meds .when you have chronic pain. you do the best you can with what works with the least amount of side effects but when the drug that is supposed to work the best has the same side effects as you have naturally, you have to think twice about taking it or waiting for them to work the kinks out while the pain goes on.I see people I know frying there brains on drug for pleasure and I scratch my head and wonder why when I see how it destroys their life.
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