Tag Archives: pain management

A Saturday sketch

(Cross-posted at three rivers fog.)

I noticed something was wrong in the earliest hours of the morning, when my husband had disappeared from bed but I did not hear anything going on in the bathroom and could not see him anywhere.

Around 8, he got up to go to the bathroom and I lifted myself out of bed to use it after him. When he emerged, he was very clearly not well and said, in a seriously distressed tone, “I just had the most awful night” and stumbled around me back to bed.

It’s not emotional, he clarified as he curled up awkwardly on his side of the mattress, it’s just physical. He had problems feeling seriously sick to his stomach, which never culminated in anything, just churned on and on without relief, and had serious sharp pains in several places — shoulder, lower back, knees — and a generalized all-over ache that left him feeling miserable, unable to find a single comfortable (nay, just non-miserable) position no matter where he stood, sat or lay.

“This is how I imagine you feel every day,” he moaned, as he tossed his body into a different awkward position in an attempt to find some relief.

He needed the still, quiet, restful sleep so badly, but hurt too much to stay lying in place in bed for more than a few moments, and the pain was too distracting to be able to actually fall asleep — and precisely because of this, he was in no condition to be anywhere else but in bed sleeping. A familiar situation for me.

A few minutes later, already in his thirtieth position attempting to achieve some state of rest in bed, he pushed over to where I sat on my side of the bed and asked, “How do you do this every single day?”

Staring at my nightstand drawer, I smiled a bit and replied, “A lot of medicine. And you to help me.”

Why I don’t think it’s funny to use Limbaugh’s drug abuse as a punchline.

Short background: Rush Limbaugh (link goes to Wikipedia article) is a US conservative radio talk show host who has risen to prominence in the US by inciting “controversy” after “controversy” with hateful rhetoric. He also went through an ordeal some time back for addiction to prescription painkillers, an incident that the US left likes to use against him. Recently he was rushed to the hospital again, which has spurred a new round of derision from US liberals.

Rush Limbaugh isn’t exactly a sympathetic character. His politics are vile and he makes a career out of escalating white male resentment into white male supremacy. And that causes real harm to real people who don’t meet the requirements to be part of Limbaugh’s He-Man Woman-Haterz Club.

How did he end up abusing prescription painkillers? I don’t know. Was he taking them for legitimate pain due to injury, surgery or a medical condition, and the usage got out of hand? Was he consciously using it as a recreational drug? I have to say I am still somewhat bitter about people who use the stuff I need to be able to get on with my daily life as a quick and easy “high,” ultimately making it harder to access needed medication. (But that is argument from emotion, mostly; I would posit that the real problem is a medical field and larger culture which does not take seriously the needs and concerns of chronic pain patients and is eager to punish people who step outside accepted boundaries.)

But even if he was just out for a high, I still feel unease when I see people use that angle to criticize him.

Because, here’s the thing… the same narrative that you are using to condemn this despicable figure is the narrative that is used to condemn me.

You are feeding, growing, reinforcing the same narrative that codes me as an abuser, that makes me out to be a good-for-nothing low-life, that makes it difficult for me to access the medication I need to be able to live my normal daily life.

When you laugh, joke, or rant about Limbaugh’s abuse of narcotics, you are lifting a page from the book of people who would call me a malingerer and interpret my behavior (frustration at barriers to access, agitation and self-advocacy to try to gain access) as signs of addiction. People who would, in the same breath, chastise me for “making it harder for the real sufferers.” (See why my bitterness about recreational use isn’t actually serving the right purpose, in the end?)

Maybe you don’t really think this way. But maybe the people laughing at your joke do.

And maybe, you just made them feel a little bit safer in their scaremongering about “addiction” and deliberate attempts to make life harder for us.

Scoffing at Limbaugh’s hypocrisy is one thing — but when your scoffing takes the form of a very common, quite harmful cultural prejudice — even when you don’t mean it to — it has real effects on real people’s lives. Sort of like that casual incitement that we hate Limbaugh for.

(Cross-posted at three rivers fog.)

Interlude: Cat toy edition

I am quite fond of the pharmaceuticals I keep organized in my nightstand drawer. But I have to be careful not to drop them, so that the cats don’t find them and try to eat them.

But now, there’s a pill I can drop on the floor and let my kitty chew on all he wants! And if he tires of that, he can roll the bottle cap around the kitchen floor for awhile.

catatonica

(A screenshot of the Etsy page for a pill-shaped cat toy. Several pictures are shown of a long-haired ginger tabby cat enjoying the catnip-filled, half-red half-blue felt toy, and the plastic orange pharmacy bottle with a prescription label reading “Catatonica.”)

The item description:

These jumbo pills contain a healthy dose of extra strength cat nip – just what the good doctor ordered.

Each pill measures approximately 3″ long and each vial contains two.

So get to the pharmacy STAT! You’ll want to make sure you have plenty of “mothers little helpers” on hand.

DOSAGE:
Take one down, bat it around, kitty is sure to have a ball.

POSSIBLE SIDE EFFECTS:
Temporary ants-in-the-pants followed by extreme drowsiness. Increased appetite not uncommon.

Only $8! I spend way more than that on my human medications. Check out kgrantdesign’s shop for more deliciously cute kitty toys. Next up: fried eggs and bacon.

(Cross-posted at three rivers fog.)

Does Outright Speculation Make This Disabled Feminist Angry?

Answer: Yes.

Let’s talk about this piece-of-crap article recently published on that oh-so-“liberal” news n’ culture site, Salon.com. I’m prefacing this post with a warning for ableist language and concepts on the part of the article’s author, Rahul K. Parikh, M.D. The article begins as follows:

There was a time when a celebrity’s sudden death almost invariably meant illegal drugs…[a]nd so it seems with Brittany Murphy, the bubbly and bright actress who died of cardiac arrest at 32.

Yes, it seems. Point is, we don’t know much yet. There are other health-related issues or conditions that can lead to cardiac arrest, but is this acknowledged? Of course not! Parikh continues:

The coroner’s notes allegedly claim a pharmacopia in Murphy’s bathroom cabinet: Topamax (for seizures or migraines), methylprednisolone (a steroid), fluoxetine (an antidepressant), Klonopin (for anxiety), carbamazepine (for seizures or bipolar disorder), Ativan (for anxiety), Vicoprofen (pain reliever), propranolol (for hypertension, migraines or anxiety), Biaxin (an antibiotic), and hydrocodone (a narcotic pain reliever). Gone are the days of shameful crack pipes and empty gin bottles.

OH MY GOD, EVERYBODY PANIC.

Murphy’s medications, like those of [Heath] Ledger and Anna Nicole Smith, are on the shelves of your local drugstore, available with a simple trip to the doctor — or doctors — whom you merely need to convince that you need the stuff. Did one doctor prescribe her those meds? Did 10? We don’t yet know. But as a doctor myself, I just kept wondering (and not for the first time): What if doctors were more like librarians? Would Brittany Murphy still be alive?

Cue scary music! THE DANGER IS ON THE SHELVES OF YOUR LOCAL DRUGSTORE. Nevermind that people with chronic pain conditions and disabilities have to jump through numerous, often ridiculous hoops just to get, say, a month’s supply of medications that help them function and/or live life to the fullest extent possible. As one of these people, I am of the opinion that Parikh is being rather disingenuous here; these drugs, at least for us “average” folk with chronic pain issues, are usually not easy to obtain.

After nattering about how the medical field should follow the example of public libraries when it comes to monitoring people and their books meds, he continues:

One of the many negative consequences of such fragmentation is how ridiculously easy it can be to get drugs. Most doctors know patients who have desperately angled to get a prescription they don’t need, usually highly addictive pain medicines like Percocet or OxyContin. This is what we call “doctor shopping,” hopping from one physician to the next until they find someone willing to write a script. When the supply dries up, they go to another doctor, and then another. One 53-year-old man in California visited 183 doctors and 47 pharmacies in one year to support his addiction to painkillers.

Hey, nice use of anecdata there! What on earth does one 53 year-old guy in California have to do with Brittany Murphy’s situation? As for “most doctors” knowing a patient who has “angled” for meds they “don’t need” (who makes that judgement, I wonder?): cry me a goddamn river. The endless Helen Lovejoy-gasping about ADDICTION!!1 in fact makes it incredibly hard for some of us who need these medications to obtain them, and no amount of 1984-esque War is Peace anecdata–from someone, no less, who is supposed to help people in pain as part of his chosen occupation–is going to change that.

In short, the experiences of people with chronic pain are going be different than those of an able-bodied doctor, but nowhere is this acknowledged in this article–nor is it mentioned in many larger conversations about  painkillers and (possible) ADDICTION!!11.

Most of us who need these medications do not have the energy to doctor-shop. I do not wish to deny that painkiller addiction is a serious problem; it is, for some. Sadly, these sorts of “conversations” on the specter of supposedly widespread PAINKILLER ADDICTION!!!1–much like those focusing on the OBESITY CRISIS!!11–tend to focus entirely too much attention on extreme cases and anecdata, leaving out those who need these medications for legitimate medical reasons, and, I might add, some of whom spend a great portion of time proving said legitimacy in order to show that they are not addicts or doctor-shoppers.

But if “preventing” ADDICTION!11 in able-bodied people via endless hand-wringing about who “really” needs these drugs versus who doesn’t is the number one priority here, that is a problem. Yet again, the needs of those who are judged by society as most “important” or productive or fitting into able-bodied society are taken seriously, and the needs of those who do not fit this mold–because they need painkillers for actual pain and are therefore bad/unproductive/just a bunch of whiners–are ignored, or worse, actively shamed and castigated for things or circumstances that they cannot control.

And, as OuyangDan pointed out so eloquently on this very blog, there are a lot of things that we don’t know about Brittany Murphy’s death. Using her death as a poorly-researched, almost totally speculative “example” of the dangers of painkiller ADDICTION!!11 is not only tasteless, but it distracts from how ridiculously the concerns about painkillers, “legitimacy” and the specter of addiction are often framed by (mostly privileged) people who do not deal with these things in their daily lives.

Less infuriating: Many of the commenters seem to agree that this article and its “speculation” went too far, which is unusual for Salon commenters, as most of them tend to exemplify the worst of privileged white “liberalism” on a regular basis (as you would expect, this includes loads of abled privilege and the anecdata to back up their uninformed opinions).

The Labor of…

Moderatrix Note: “The Labor of…” is a somewhat intermittent series to re-explore things in daily life taken for granted before living with chronic pain and/or disability.  This is a space to share experiences.

Sleep.

My relationship with sleep has changed dramatically throughout my life as I have grown and changed.  I am told that I was one of those babies that slept so soundly that my mother could vacuum under my crib during nap time and that even a diaper change didn’t phase me.  Later as a toddler I would protest nap time only to succumb to two solid hours of heavy, sweaty sleep.  My middle childhood years were plagued with chronic bed wetting, which my mother didn’t totally understand at the time (she would make a scene of putting cloth diapers on me in front of the family at eight years old, or showing my wet sheets off to anyone who would see them) until they discovered that I was both a deep sleeper and had a tiny bladder that didn’t keep up with the rest of my body’s accelerated growth.  I also had frequent kidney infections which exacerbated the problem.  In High School I crawled through with an average of five hours a night between working as many hours as child labor laws permitted on top of track and band practice with AP classes and boyfriend who somehow managed to squeeze in there.

College was my first experience with insomnia.  I am pretty sure it was related to my OCD and subsequent depression, but I can’t be sure.  I would go for days on very few hours of sleep, and after a couple of weeks I would crash and not be able to stay awake at all.  I eventually scheduled all of my classes on Tuesdays and Thursdays so that I could work from sun up to sun down and beyond the other five days while still participating in college marching band (Go EMU!), and still managed to perfect a beer purification system out of my liver.  Some how sleep was something I was able to live without for extended periods of time.

Sleeping positions changed as well.  I was a stomach sleeper for as long as I could remember until I got pregnant at 21, and even then I only gave that up when it became physically impossible.  At that point I begrudgingly gave in to the side sleeping that was all my doctor could rant about.  I had to use around five pillows in addition to the ones under my head just to get comfortable on my side.

Sleep was something I took for granted.  I loved sleeping.  I hated that I having to admit that I needed it.

Now, I dread it.

Sleep has changed again.  I have to consider every tiny detail of sleep, from the time and amount to the bedclothes and the temperature.

I have to get just the right amount.  I can’t sleep too little or I will have no energy at all the next day and my body will hurt intolerably to make up for the energy I didn’t restore.  If I sleep too much I can’t adjust and I will fall asleep if I sit still long enough.  I have to try to get to sleep at the same time every night, weekday and weekend.  We don’t have the luxury of “school day” or “not school day”.  We still have to adhere to relative bed times on non-school days to keep my body on a schedule.  Not being tired can not be an excuse, and that melatonin supplement pill becomes a dear friend, something that does not interact with my meds, but helps me fall gently asleep.

The environment has to be just right.  Too much noise will distract or frustrate me.  If I am awake or anxious it keeps my brain active and stop me from relaxing.  If it is too quiet the silence is too loud (plus, I have tinnitus, so the ringing gets a little intense), so we have an iPod with sleep music to play quietly (it has ocean sounds under music!).  The Guy is a cuddly sleeper, and he is very conscious of the possibility that he could hurt me while we sleep.  He worries that he will also make me too warm, and sometimes I worry that he doesn’t sleep well because of this (although, in truth, the only being on the planet that could sleep easier is a newborn puppy).  He will run a fan or the AC if he thinks that he is kicking off too much heat, but as soon as he thinks it is too cold he shuts it off.

The mattress that came with our beautifully furnished ville in Seoul (we could only bring so much weight of our belongings to Korea) was far too hard for me to sleep on and caused me so much pain that I would cry and could never find a comfortable way to lie, so we had to put a memory foam topper for it, which isn’t as good as the memory foam mattress we had to put in long-term storage in California, but it helps immensely.  The pillows have to be just right.  One isn’t enough for my neck support, but two is too many, so we had to get a special cervical pillow made from foam to support my head and neck just right, otherwise I would wake up with a worse headache than I already have almost daily.  Since being pregnant I am unable to sleep any way but on my side, and I have had to learn how to do this without my limbs touching each other, because the weight of them is too much to bear.

The bedclothes have to be right.  Soft enough and not heavy, because sometimes the weight on my legs can cause me to cry from the pressure.  If they are too thin I get too cold, and extreme temperatures one way or the other exacerbates any existing pain.  This goes for all the blankets we use.  We also have to make sure that they are tucked in well (this is where my boot camp education pays off!) so that they don’t come undone and wind around my limbs which will also cause me to awaken in agony, but not too tightly so that I can move around freely so my joint don’t stiffen.  The tiniest things that would maybe bother someone else, cause them to shift in their sleep, will jolt me wide awake crying out in pain.  This ties in with nightclothes, too, because I have to make the same decisions.  I can’t have things that bunch up around my legs, but I have to have enough layers to keep me warm, and socks that are thick enough but that don’t have restricting elastic.  It’s a razor thin edge.

Any little misstep one way or the other throws a sprocket in the works and that can mean the difference between a tolerable pain/adequate energy day and a miserable one.  It can mean the difference between a day where I can accomplish a few tasks and maybe have time for a brief walk or a day with my feet propped up carefully.  All of this work has done nothing for my relationship with sleep.  I still love actually sleeping, but hate admitting that I need it.  Now, however, I hate that I need it so badly, and that my body will take it whether I am willing or not, but that even if I do need it sometimes it will turn upon itself to disrupt what I have worked so carefully to craft.  Sleep is no longer indulgent or relaxing or restful.  Sleeping has become a laborious effort.

Recommended Reading for October 27

I’m writing this four days before you’ll see it. (I write most of my posts from the past, due to my schedule.) I mention this so people know that I’m not ignoring recent posts, I’m just not seeing them yet.

Disability & Desire: The Dance of the Heart – This is a pointer link. The actual article is PDF.

From the article:

In 1996, at the age of 24, I found myself in hospital, with empty walls and broken dreams colouring my days. My partner at the time, Janine Clayton, and I were caught up in local taxi violence in Cape Town, South Africa, with members of rival taxi organisations firing at each other. The driver of the taxi we were in died, and my spine was severed by a bullet. My body told me long before doctors had the courage to admit it. I was paralysed from the chest down. During those endless afternoons with little else than my mind to entertain me, I contemplated the extent of my loss. Perhaps what struck me deepest at the time was my conviction that I would never be desired or loved again. I felt that my body had become damaged goods, my sexuality erased.

As time went by, I began to dismantle my perceptions by analsying their origins. I recognised that my mental picture of a person with a disability was that of someone in need of care, someone to be pitied, someone who certainly had no real claim to love or any kind of fulfilling life. The basis of my beliefs was largely informed by society’s consensus on people with disabilities … these were people who were mostly invisible, unless as beggars on the street or patients

When Simply Stating Your Truth Isn’t Enough:

What matters, then, is what you do with what you call facts, experiences, truths and ideas. It’s how you handle your perspectives on gender, race, ethnicity, class, and disability. It’s the way that you align the facts (or not) with societal preconceptions about those who are somehow “different.”

It doesn’t matter whether or not you, personally, don’t share the stigmatizing impulses that lead to discrimination and hatred; members of your audience most certainly do. As an artist/performer/writer/…, you have a responsibility to treat those facts in such a way that you don’t perpetuate the beliefs that enable harm. You might even take on the responsibility to change the way that people think and act. Or, then again, perhaps not.

Accessibility: The Soundtrack of my Life

We would never expect the average able bodied person to push themselves to the point of pain to participate in a public event. Whether I am watching my son play hockey or considering taking my boys to the Santa Claus parade, I must consider how much pain I am able to live with to participate. Differently abled parents are no different than able bodied parents. We want to be a part of our children’s lives and yet the barriers that exist often make this impossible.

Those that parent with a disability also bear the social stigma of being unfit. Social services has intervened on many occasions because of questions about our ability to parent. Disablism in this case is supported by concern for the children. It never occurs to many, that if the world were more accessible, that there would be no reason for concern. The fault is not with the body in question but with the makeup of the world.

Pain vs a Life:

Friday morning the group I was with wound up discussing a scenario of tension between the demands of being healthy and the desire to live life. I’d love to have both good health and the ability to pattern my life in the manner I want. I don’t. (And I would argue that none of us really do.) I live in a body that will experience pain if I try to do too much. I consider myself lucky to know about where that line lies. And sometimes I choose to push and bring extra pain meds. And sometimes I choose not to push and to be pain free. There’s no magic formula. I try to balance the life I want against what I expect the physical costs of extreme activity to be.

And, this comment was left by Amanda of Ballastexistenz and I’m just going to C&P the whole thing because it is full of good reading material:

I’d like to present some links that could be useful further reading on these topics….

The first one is from The Perorations of Lady Bracknell. She addresses some really common misconceptions about the social and medical models. Her article is useful for people new to these ideas, many people not new to them, and especially anyone who has ever believed that the social model means impairments don’t cause problems on their own, or that the medical model is the model that good medical professionals ought to use. The link is Chestnuts Roasting on an Open Fire.

Then there’s some things by a writer named Cal Montgomery. She’s cognitively and physically disabled, but has been pressured by physically disabled people to pass as purely physically disabled (the same thing happens to me sometimes). She frequently criticizes the entire concept of “invisible disability”, saying that it makes it sound like the “invisibility” is happening as a trait of the disabled person rather than a lack of understanding in the particular observer. I see very few other people tackling that idea and I think she’s absolutely correct. She talks about it in a lot of places, but her two best articles on the topic are A Hard Look At Invisible Disability and Tangled in the Invisibility Cloak.

I’ve been challenged enough (told I’m making crap up, basically) when I say that autistic people who can pass for non-autistic are usually visible if you understand what to look for, that at one point I got fed up when writing a post that dealt with that, and wrote up a detailed description of precisely what combinations of things are visible to me that are invisible to people who have no idea what to look for. (I then got criticized for writing a “DIY autie-spotting guide”, but that was absolutely not my intention. I was just trying to be concrete about something to avoid being accused of lying.) For people who have trouble imagining how something could be invisible to them but visible to people who know what to look for, this post I wrote might be useful. (Note that I use a lot of terms in it to refer to other people’s perceptions, that I would never use myself.)

If you have links you think are relevant, don’t hesitate to email me: anna@disabledfeminists.com Please note my schedule means I may not see your email for a few days.

Depending on narcotics

IMG_0172I take six medications. Five of them — the antiepileptic, the antidepressant, the non-narcotic pain killer, the muscle relaxer, and the oral contraceptive — are covered through a mail-order service. I receive a 90-day supply in my mail box every three months. No hassle. If a prescription runs out, my doctor is notified electronically, he then sends the new script electronically, and everything proceeds as normal with absolutely no additional step required of me. The only thing I do is click on the check-out button on the web site every three months. That’s it. No calling. No physical piece of paper to pick up. No wait at a retail pharmacy. Just a click and several days’ wait.

There’s one other medication I take. That medication serves the exact same purpose as all five others: it relieves my pain so that I can get on with my daily functions. I take it regularly, just like all five others. I have been taking it regularly for over five years now for the same reason. But this medication is not covered by the mail order service, because it is not considered a “maintenance medication” — despite that it fills the exact same maintenance role all five others fill, just by a different mechanism.

So for this medication, I am only allowed a 30-day supply at a time, and no refills — a brand new script each fill, which requires my doctor’s input each time. I have to call my doctor no sooner than the exact day it was filled last month, unless it falls on a weekend in which case I might get away with calling up to 2 days early. Then I have to call back a couple days later to see if the script has been written. If it has, it is printed out, and I have to physically walk in to the office, stand in line to see a receptionist, have them take a copy of the script with my photo ID, sign and date the copy, and walk out with the script. Then I have to physically take it into a retail pharmacy, wait in line, hand it to the pharmacy technician, then wait the required time for it to be filled. If there are no problems with my insurance, I then must physically present myself and pay for the prescription. Then I can walk out the door with my medication.

(And this is the process with a doctor who’s relatively friendly about the matter.)

It is quite a different process and one overflowing with “veto points” — points at which any party involved can cause any sort of problem and stop the whole process up. Maybe my doctor is on vacation and won’t be back for two weeks. He is the only one in my clinic who will write this script. I can’t call earlier in anticipation of his absence; they will not write the script before the last runs out. In that case, I’m stuck until he comes back. Maybe the system spits out some sort of error, like the one I received today: I was told the script must be written by my original prescriber. Which is this doctor. So now they have to go back and ask for the script all over again, and he isn’t in til tomorrow, and it’s not guaranteed to go through smoothly then. There have been other errors.

Maybe the insurance says no. For any number of reasons; I’ve dealt with prior authorization errors, quantity limit errors, errors because my insurance has suddenly decided to list me as living in an assisted-living home and cannot fill a prescription if I am. Maybe the pharmacy hits a snag, like the time they would not fill a written prescription until 2 a.m. that night because the insurance company said so, even if we paid out of pocket without billing the insurance.

And I’m going to keep running into these issues, and I will run into new errors every few months. I may have solved the last problem, but there’s always something new to pop up. I can never rely on this medication being filled on-time. It simply does not happen the majority of the time. No matter how diligent I am, how patient I am, how clearly and politely I explain myself — or how despondent I get, how emotional I get when telling them but I cannot work without this medication, and I don’t have leave on this job, and I can’t afford to be fired for missing work. Or whatever other pickle I’m in at the moment. It doesn’t matter. I do everything right and there will still be regular problems in getting my medication filled on time.

I’m sure, by now, you’ve figured out that this particular medication is a narcotic pain killer — hydrocodone (generic for Vicodin). I take it for chronic pain. I have been taking it for over five years this way, with the doses varying between one-and-a-half per day and three per day. And the only medical trouble I have ever had on it is when there was an excessive delay in refill during a bad pain flare and I got to go through the withdrawal for two weeks. (And I can tell you from experience: hydrocodone withdrawal is nothing compared to Effexor withdrawal.)

Narcotic pain killers can be a valid option for chronic pain patients. They fill a void left by other treatments which still aren’t effective enough to address our symptoms, which can easily be disabling. As you can see, I take plenty of other medications. But if I want to be able to get up and do something, I still need the pain relief the hydrocodone provides. So I take it. Because I like to be able to get up and do things. Like make the bed in the morning and feed the cats and make myself lunch and possibly run errands. Or — you know — work. Those silly sorts of things.

Here’s the thing, though. In both common culture and the medical industry, chronic pain patients who take these medications to be able to perform everyday, ordinary tasks that currently-able people take for granted — like bathing or showering or washing dishes or dropping their kids off at school — are still constructed as an addict just looking to get high.

You could almost kind of expect that for the narcotics. Most people do not understand the distinction between addiction and dependence. (Which is, basically, the distinction between taking a medication for a medical purpose so that you can go on living your everyday life, vs. taking a medication when you have no medical need so that you can escape from your everyday life.) This distinction exists for a reason; developing a tolerance for a medication is not a bad thing in and of itself, and must be weighed against the benefits that medications brings to the person.

Addiction calls to mind, though, a life being torn down. Addiction calls to mind a person who is seeing the detriment of a drug outweighing the benefit. A person whose life is falling apart because of the drug.

A chronic pain patient taking a narcotic pain killer under the close supervision and guidance of a knowledgeable doctor is exactly the opposite: sie is a person whose life is coming back together because of the drug.

But this image is not easily shaken in people’s minds. And so the chronic pain patient is reimagined as the addict. Hir behaviors are twisted to fit the common conception of the addict. If sie ever lets out a drop of disappointment at having problems with accessing this medication which is helping to put hir life back together — that is seen as drug-seeking behavior. And if sie lets out any sort of relief at the feeling sie experiences after taking the pill and having the crushing weight lifted from hir muscles — that is seen as “getting a high.” Heaven forbid sie show any emotion beyond just relief — like perhaps pleasure or happiness — at being able to perform everyday functions again. And any moodiness or other undesirable behavior can be easily attributed to hir “addiction.”

What’s strange, I notice, is that this reimagining is applied not only to chronic pain patients who take narcotics — but to any chronic pain patients who takes any pain relieving drug.

Take, for example, the anti-epileptic I take. It is not a narcotic. It cannot be abused — that is, if you do not have a neurological pain disorder, it will not do anything for you. You can’t use it to get high, get low, or get anything — except a couple hundred dollars poorer every month.

The only way this pill does anything for you is if you have some sort of nerve problem. And even then, the effect isn’t a “high.” Rather, it levels your pain threshhold — brings it closer to “normal.” No artificial mood effects, no giddiness, no lift. Just level.

And I still see this medication treated very similarly. Patients who take it are described in the same terms you would describe a drug addict.

And it’s just one of many. Any drug that relieves pain for a person with chronic pain will be painted in the same strokes.

At issue, here, is the conventional wisdom that our pain is imagined, that it has no real basis, or even then that it isn’t as bad as we make it out to be. That is the belief that feeds this twisted construction.

Because if you are imagining your pain, there is nothing legitimate you could be getting out of that drug. And if you aren’t getting anything legitimate out of it, but you’re still taking it — and getting upset when you don’t have it — well, that’s classic addict behavior, isn’t it?

If our pain were recognized as real and legitimate — if those messed-up-in-so-many-ways Lyrica commercials didn’t start out with “My fibromyalgia pain is real!” — this wouldn’t happen as much. Because if our pain is real and legitimate, then it is real and legitimate to seek relief for it.

(Of course, that assumes that pharmaceuticals are accepted as a real and legitimate way to relieve that pain.)

But people are going to have trouble with that. They don’t want to accept our pain. They don’t want to admit that it is real. They want to keep believing that it must be imagined. Because then, they can comfort themselves, in that murky area beneath our conscious thought, that they would never end up in our situation. They could never end up with any sort of medical condition. And if they did, well, they know how to do everything right, so they would never be affected by it.

This is why they scoff at our assertions that our experiences are real. This is why our conditions are jokes to a great many people. This is why “fibromyalgia is bullshit” has been the leading search term to my blog. This is why they seek so desperately to deny that these drugs — any drug — could be having a legitimate effect on us. This is why they treat us like addicts. Because they can see how we might reasonably be having real pain, and they can see how these drugs might reasonably be legitimately relieving it, and they can see how we might reasonably be upset if we are consistently denied access to the one thing that allows us to live our lives the way we want to.

And if all that is reasonable, then — shit — they could wind up in the same place someday. And none of their can-do bootstrap individual determination could magically get them out of it.

Addicts we are, then.

Yes, it DOES make a difference

(Cross-posted at three rivers fog.)

I wrote this yesterday in an extreme fog and do not have the spoons to rework and polish it. Apologies for the brainspill, but these days it’s the only option I have.

***

For background, see Ouyang Dan’s post on the problematic aspects of the TV show House. Don’t tell me that people realize this is fictional. Don’t tell me that people know how to maintain that separation. Some do. Many don’t. And they’re everywhere. At the bottom of the totem pole… and in positions of power over the very people they are prejudiced against.

***

I was called back to work two weeks ago. I work at a government office that provides certain assistance programs. (Once you go to work for one government agency, you realize there are a whole lot more of them than you ever thought before.) I really don’t want to go into it any more specifically than that.

It’s been very rough on me. Last winter, work was physically draining. I basically have two whole hours every day that I am awake and not at work, preparing for work, or traveling to and from work, and semi-conscious. Not only am I so physically exhausted that I go to bed three hours after work ends, I am so physically exhausted that my brain just cannot be pushed any further. I have trouble comprehending the blogs and news sites I normally read; writing is usually out of the question. Of course, we won’t even talk about anything more physical than that — even preparing a boxed dinner for myself is too difficult. My apartment is even more a mess than usual, because I don’t have the energy to pick up the clothes that I shed as soon as I get the front door shut, the mail and personal items that trail after me from the couch to the bedroom…

Unfortunately, so far this year, it hasn’t just been physically draining. I’ve been dealing with a sudden onset of severe migraines, and not the type of migraines I’ve had since childhood and have an intimate knowledge of — these are more classic migraines, the nausea, the aura and vision distortion, the intense pain and pressure behind the eyes… The pain is not as overwhelming as my normal migraines (where a twitch of the toe makes me want to scream or cry or at least moan, but the movement and force of emitting any noise at all would hurt even worse, so I just curl up and remain frozen in misery), but the experience is just as miserable because it block’s my brain’s ability to function, even to process the smallest of information. I’ve been having trouble writing six-digit numbers on the top of each application. And normally I work faster than the worker next to me, but the past two weeks she’s been cranking out work three times faster than me.

It’s frustrating. I’ve been doing everything in my capacity to do to fight these headaches off. Everything. And no, I don’t want any helpful suggestions. But regardless, even with all the desperate measures I have been taking, they persist.

On top of it all, my endometriosis has decided to flare up at the same time. So I get double nausea, extreme abdominal cramps, persistent pelvic pain and other symptoms.

I’ve been in a lot of pain.

I take a lot of medications. For pain. I take medications that have no effect on people who do not have a specific type of pain disorder. And I take medications that people who are not in pain popularly take to get high. (I do not, for the record, take anything to get high myself.) And I put up with a lot of shit to continue taking one of few medications that works and that enables me to work.

(I guess I could give it up and therefore be putting up with less shit. But then I’d, you know, not be able to work. And for so long as I have the option to be able to work, I’m taking it. Because I may not even have that option forever. Situations change, bodies change, and bodies change how they react to medications over time. I’m doing what is necessary for myself and my family at this point in our lives.)

So, at work today.

I sit on the far side of the first floor of our building, along with all the other people working in my particular program, the people working on another program, and a couple stray general clerks across from all of us. The other program’s supervisor and one of the other program’s workers (OPS/OPW hereafter) were talking about a certain case, a woman who was being denied medication and needed help obtaining it. This was before lunch, it was a general talk in a work context, that is how to get the problem solved.

My husband and I went home for lunch, as we do regularly, given that we live less than five minutes from our workplace. It takes half the lunch period but it is worth the spoons because it makes the workday so much more bearable — two four-hour chunks rather than one long nine-hour one. We sit around, watch The People’s Court reruns, eat our lunch and laugh at the cats who get in silly, hyper, meddling moods around that time.

I returned from lunch, feeling a lot better having had a break from the fluorescent lighting and ambient noise of the HVAC system. And a few minutes after I got back, sitting next to the OPS scanning documents into the computer system, OPW wandered back over and began talking again about the client from before.

The medication? Oxycontin. Her doctor has been prescribing it to her for over 15 years.

And the conversation? Went like this. (As typed soon after in an email to my husband, as close as I could get to what they actually said, given how stunned and hurt I was while it was happening.)

OPW: do you watch house?
OPS: no not really
OPW: well he has some sort of leg injury, but he takes that other one, what is it? vicodin
OPS: uh huh
OPW: and they sent him to rehab, and he just had to find something to occupy his mind so he wouldn’t think about it
OPS: yeah they get addicted so easy
OPW: and now they put him on regular pain killers and he’s doing just fine
OPS: yeah a lot of the time tylenol or advil works just as well, people just want the high
OPW: exactly, and their doctors prescribe it to them and they hand it out to family members…

And the conversation went on like this for a couple minutes, with the two of them walking back and forth fetching printed documents, attending to the scanning etc.

I just… I’m not terribly private about my condition. I don’t bring it up, but if it’s relevant I talk about it. I do try to avoid telling my coworkers that I take narcotic medications (as opposed to just “medications”) but I have gone over it specifically with HR as it can be a security issue in some agencies.

I was sitting right there. OPW sits on the other side of me, and had to walk around me to get to where OPS was at the scanner. I was sitting right there.

They were talking about me.

They weren’t thinking of me, of course. They’d never make that connection. I’m young and thin and pretty enough. They know I work hard. Most of my office loves the hell out of me.

But if I had spoken up — rather than sitting there holding my breath trying not to cry — how would that opinion change? Would they start seeing me as lazy, as slacking off? Would they whisper about me every time I went to the water fountain for a drink? What was I taking? What was I doing with it? Would they start taking certain behaviors as symptomatic of addiction? If I passed too well one day, appearing to be just fine (to them; I am good at covering up my pain) — would they take that as evidence that I couldn’t actually be in pain and couldn’t really need that medication? And if I didn’t pass well one day — especially these days, when I’ve been stopped more than one time as someone remarks on how deathly pale I am and asks if I’m OK and tells me to take a break — would they see that resulting, not from my pain, but from the supposed addiction?

They were talking about me. They didn’t even know it. But I am that person on that medication. Pushing through the pain to keep working.

The difference is, Dr. House is a character.

I’m real.

And that woman. These were the attitudes of the people who were helping her resolve an issue. As much as I wish otherwise, workers do have some degree of latitude in deciding how they are going to approach a case, and can apply the law in different ways for different people, even if it appears pretty strict on paper.

I am that woman.

I have been there. I am there. I have to deal with unsympathetic figures in obtaining my treatment. Doctors, nurses, office staff, pharmacists, insurance reps, welfare reps, other reps. I have issues I have to call to have resolved. I have that person on the other line who’s promising me on the one hand to resolve the issue — but on the other hand …? How can I ever know?

I don’t know what was going on in this woman’s life. I don’t know if she’s dependent (there is a difference). I don’t know if she would be better off on another course of therapy. Or whether she’s tried all those other courses and they’ve given her awful side effects or they’re contraindicated given her particular condition or they’re unavailable to her due to income or access. I don’t know.

Maybe she’s abusing. Maybe she’s handing it out on the street corner.

Maybe she’s just like me. Just one person trying to power through this world as best she can. And this is the best way she’s found to do it.

The Pain of House

Hugh Laurie as Dr. House posed as a Caduceus with wings and two large snakes wrapped around his body on a blue field.  Caption reads "Incurably Himself".
Hugh Laurie as Dr. House, a white man posed as a Caduceus with wings and two large snakes wrapped around his body on a blue field. Caption reads "Incurably Himself".

I am a pop-culture junkie.  If you have been playing along at home long enough this is common knowledge.  I have been a big fan of House, M.D. since it’s poorly lit pilot.  I am simultaneously appalled and amused by his crass behavior.  Even the best feminist in me laughs and fairly inappropriate moments.

I have seen and read plenty of critques concerning Dr. House and his manner.  I have chewed out my share of doctors for acting like him as if it makes them seem clever.  He is a character that is worth critiquing on many levels and for many reasons from many points of view.

What I haven’t seen is a lot of criticism of the characters assembled around House.  From Dr. Wilson, or Dr. Cuddy, or the myriad staff members he has had around him (yes, even Dr. Cameron-Chase) I have watched for nigh on five seasons now as all of the people who claim to care about him have done little more than chastise and concern troll his life.  Most notably, his addiction to Vicodin as his chosen method of pain management.

A repeated theme throughout the series has been watching person after person in House’s life try to trick or otherwise convince him that he should quit taking Vicodin and learn how to deal with his pain.  They constantly badger him about his addiction, and will go to great lengths to get him to quit taking his pain medication.

Only a person who has never experienced chronic pain would dare criticize a person for their pain management.

Because, like it or not, Dr. Gregory House is managing his pain.  Sure, he is an addict.  There is little argument there.  The character admits it freely.  In his own words he says that he takes a lot of pills because he is in a lot of pain.  Whatever your feelings on narcotic medication it is a proven method for making intense and chronic pain manageable, and a down side to that is that narcotic drugs can in fact be dependency and/or addiction forming.  The presence of an addiction does not take away the fact that the pain beneath it is real.  When a doctor and a patient together decide to pursue pain management via narcotics such as Vicodin they will weigh the pros and cons of such treatment.  One of the cons that is weighed is the fact that a person can develop an addiction to a drug and a tolerance that will probably mean their intake will increase over time.  As with any course of treatment the costs must be weighed with the benefits.

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Photo: Hugh Laurie as Dr. House, a white man in a presumably porcelain bathtub filled with orange prescription bottles, dressed in a grey suit with his cane.

House is able to function as a result of the Vicodin to which he has become addicted.  He is able to be independent in moving and living, not housebound (no pun intended) by his pain.  He is able to hold down his job and do it with the skill through which he receives his notoriety.  His course of pain management gives him a life and independance that many of us living with pain or other disabilities are hoping to achieve.  It might not make him a happy ray of sunshine all the time, but neither does living in agonizing pain all of the time.

It is very condescending for a person who is not living in pain to assume that they know better than that person how to manager hir pain.  The way that I see House’s collegues and the people who could pass for his friends treat him over his addiction and the way he manages his pain strikes too close to the way I feel most doctors and friends of those of us living in chronic pain will treat us.

Criticize the way he behaves to his subordinates.  Criticize the way he treats those closest to him.  But if you don’t know what it is like to live with chronic pain, don’t criticize his decisions as to how he manages his pain.  If it’s not your body, frankly, it’s not your business.

Originally posted at random babble…

Where I jump in and defend pills…

Moderatrix note: This post is the love child of my coming to terms with a need and actual want of pills.

Several brightly colored jelly beans lie on a jade look table surrounding several different pills.  In the background are pharmacy bottles and a multi-colored pill reminder.
Several brightly colored jelly beans lie on a jade look table surrounding several different pills. In the background are pharmacy bottles and a multi-colored pill reminder.

When discussions arise of disability, especially, it seems, of invisible disabilities, someone will almost always jump in and start harping about Big Pharma and how they have certainly invented our illness or disorder just to sell us or get us hooked on some new fancy drug.  Or, they will insist that we are just addicts who refuse to find ways to manage our pain.

And for some of us it is a type of shaming that is hard to get out of our heads.  For me, personally, I have let not just that, but some people actually convince me that pills were so bad that sometimes I convince myself that I can manage my life without them.  It usually takes a significant event (which I will leave out of this little anecdote b/c someone that I know reads this blog thinks these things are his business, but I assure you, they are not) to remind me and make me realize that I not only need them, but that it is in my, and my family’s best interest for me to use them.

I saw a doctor recently who took the time to have a real conversation with me about my health, my Fibro and my care.  It was incredible and refreshing.  She gently insisted and reminded me that I need to take some medications, and together we decided that, yes, some of them don’t hinder me, but actually give me parts of my life back.  That while addiction and dependency are different things, real concerns, and things to consider, they are things that we need to weigh against the benefits of taking medications.  She took the time to discuss side effects, interactions, whether I would need to take multi-vitamins, that I would need to watch my calcium intake (to avoid getting stones), and discussed lifestyle changes that I have either already made or would need to make to improve my quality of life, and that of my family’s.  This is the kind of thing that needs to happen between pain patients, chronic illness patients, and pretty much any patient who needs to take medications and their doctors.Read more: Where I jump in and defend pills…

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