I 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.
Thank you. So much.
I have to get my Vicodin prescription (re)filled next week. On Wednesday. It will be a nightmare. Just like it is every month. And if I don’t get it filled, I won’t be able to work, or get out of bed, for that matter.
The worst part is, I go through all this trouble, and abuse from pharmacists, nurses, family members, to get the bare minimum treatment for my pain. I used to be on OxyContin 20mg, with Tramadol for breakthrough pain. That actually worked. I could sleep, I could go shopping, I could clean. But OxyContin is popular among addicts, so now the very people the drug was designed to hep can’t get it. Now I take one Vicodin HP, three times a day, and I can hardly move. Or sleep.
For that privilege, I grovel and beg and apologize for being in pain once every 30 days.
I am almost crying right now. Thank you again.
Personal Failure´s last blog ..Republicans for Rape just got Democratic Help
This makes me very angry. Hopefully the health care reform will alleviate this sort of drug abuse (because it is abuse – it abuses legitimate users of pain medication). I have little else to say in my current emotional state, so I’ll leave it at this.
The Nerd´s last blog ..So Right, Yet So Wrong
I was forced off my stable-dosage oxicotin (I am overly-sensitive to vicodin and other narcotic)by PCPs and pain clinics. My neurologist in Illinois prescribed, and things went along fine. I was able to work as an at-home contractor in writing and editing.
I moved to Oregon, and I was a drug seeker according the healthcare providers, despite my hospital records and records from the board certified neurologist.
You bet I was! And Providence and Legacy Healthcare both labeled me as drug seeking, despite a degenerative disc bone-on-bone condition, quite obvious on X-ray.
I am in m mid-50’s. I can’t sit in a chair because it hurts so bad. I do alternative and water therapy, but it takes three hours a day to be able to walk upright, and then endurance for any task is only minutes. I am officially disabled and receiving disability, and was even when that was assigned I was a big bad medicine taker. But I least I could work part time. I live like a 70+ aged person w/o appropriate care. And that also is because I am too young by the calendar to rate the level of care my condition calls for by standards.
To all those doctors who follow the care de jour of your healthcare facility without bothering to say, read the current studies on pain from Duke or anything: I hope you spend the most productive years of your career having to carry your mother up and downstairs because her doctor won’t prescribe for her pain.
And this whole “war on drugs” – the steps y’all have to go through, the energy you have to expend to fight to stay on a doctor-prescribed and monitored treatment.
Does it really do anything to stop prescription drugs from entering the black market?
It’s what some people call “Security Theater” – it gives an illusion of control over a process that just makes legitimate user’s lives a lot, lot worse.
But there’s also this element that y’all must be lying about the level of pain you experience. My grandmother, who was diagnosed with fibromyalgia, used to get a reaction from her original PCP along the lines of “Oh, you’re just being sensitive. Buck up!”
Ugh, that last paragraph came out wrong. I was trying to say that lots of times, doctors and pharmacists and friends and family just refuse to believe that anyone could function at all with some level of constant pain, and that anyone complaining about constant pain was just “looking for a fix”.
This is such a close-to-home issue with me. Even at much lower doses (I receive 12 tablets of Hydrocodone/APAP 7.5/500 every 30 days) the theatrical exercise of getting this basic prescription angers me to the heavens.
I blame popular television shows–many scripted by alcoholics and/or drug addicts–such as House, ER and Deadwood for perpetuating this idea that everyone who takes pain meds is exagerrating their pain out of love for the drugs.
Out of the many drugs I take, the irony is that the pain medicine everyone has created this culture of fear around is the LEAST harmful of my medications.
The anti-woman thread of this has also become very apparent to me over the years. My HydroC scrip is prescribed to cover my pain needs from Endometriosis…I get enough to see me through the worst of my cramps. I have repeatedly seen male friends go to the hospital with a backache or a sports injury and get 25. A few years ago a male acquaintance went to the ER for his back and got 30. His wife (who has a different last name) ended up at another ER 12 hours later after a car accident that tore up her face and broke her arm. She got 6. When asked about the difference their family physician told them it was because women are seen as more drug-seeking than men.
So here it follows….medical science has lagged severely when studying women’s health issues. They simply have yet to understand a great deal about how our bodies respond to pain events. And so when we mention a pain they don’t understand they think it’s all about the drugs.
Whatever you do, do NOT go searching through the medical blogs for various doctors’ and nurses’ opinions on drug-seekers. You’ll see Fibromyalgia dismissed as “it hurts to be fat disease”, chronic pain patients described as junkies and humourous stories of women in chronic pain left to wait on gurneys screaming for help while bitter medical professionals ignore them to “teach the addict a lesson”
I could go on and on. But I probably shouldn’t. I just wish we could force a shift in the culture where pain patients weren’t seen as insane junkies but as people with a life-long illness.
Coble´s last blog ..Celente And The Coming Riots In The Street
@Sarah TX:
That “Security Theater” comment really gets to the heart of it, I think. The restrictions are about the illusion of control on an institutional/societal level, just like the illusion of control on a personal level demands that chronic pain (and chronic fatigue) sufferers must be faking/exaggerating/lazy.
I am very lucky my doctor does this properly. I take two anticonvulsants, a non steroidal, and two narcotics. Narcotics are physically the safest pain medications out there. The others cam do several kinds of organ damage. Narcotics have milder and fewer side effects for most people and many of those side effects go away after you have taken them awhile. And any high a person gets also goes away pretty fast after taking them as prescribed. If they thought it through they ought to realize that someone taking the same amount every month can’t possibly get high. But that would require knowledge.
I’m currently off any narcotic pain relievers (after 5yrs of being on them after a serious bleed), and back on NSAIDS for the past 7 mo. One reason is I couldn’t handle the monthly hassle this blog author describes. Another is feeling like I needed to justify the meds every month to the dr, the pharmacy, etc. It’s an exhausting hassle for someone with pain to make the monthly pilgrimage to several different places just to get the meds. Then worrying about someone not filling on time and running out and dealing with withdrawal and pain etc.
So, my talk with myself was whether the hassle was better, or whether I should risk another internal bleed (last one required blood transfusions and several hospital stays and surgery to stop the bleeding). Frankly, I think it’s sad that this dual system for meds vs. narcotic meds makes it so hard for people to GET the narcotic meds that I, an intelligent competent still able to drive myself person will still make the choice to risk a spontaneous internal bleed than deal with this exhausting monthly hassle.
I want to clarify that my rheumatoid arthritis (27 yrs since dx) pain DOES respond to NSAID’s, but that when off of them (due to the bleed), I needed MAJOR doses of narcotics to deal with the resulting pain. I don’t want to make it sound as if anyone else has the NSAID’s vs. narcotics choice I do.
1) Coble hits on an important point about the genderization of pain. I am reminded that for years menstrual cramps were a figment of women’s imaginations and thus not worth treating. Clearly as the weaker sex, we enjoy creating pain so that we can suffer and be waited upon. (Heavy sarcasm)
2) Pain strikes me as one of the great invisible health conditions. Not only can’t it be seen, but constant pain is so far outside of most people’s reality that they cannot begin to imagine what it means to hurt to live.
3) In a culture where weakness is scorned, to be so *weak* as to be in constant pain must imply that the person is *weak* enough to be an addict.
It was about this time last year that I finally began receiving narcotics for a constant headache. I am still thankful for that perscription.
Yup, all this. I’m fast running out of even crappy plastic sporks that come in crinkly wrappers so if I sound incoherent it’s ’cause I so am. My version of chronic pain doesn’t respond to NSAIDs, acetaminophen/paracetamol, gabapentin, or muscle relaxants. The part of my back that needs the most help from the TENS is breaking out and itchy, so I can’t use it there. Heat helps, when I can stand it. Massage helps but I can’t afford it. Rest would probably help but I can’t afford to not work either.
So I’ve got a prescription for tapentadol that’s at the maximum therapeutic dosage already and I live in pain. The drugs I take would probably get most people real high, but not me. They just blunt the pain enough where I can get through most days if I move slow.
I’m really glad I found this blog, and the blogs of those who write here. (In addition to my own problems, I also have 2nd hand experience through my mom’s job – she’s worked with “special ed” kids for more than ten years as a grossly underpaid and undervalued assistant. I’ve heard her stories for about half of my life. So yeah, only use the “r” word when you’re talking about someone who is genuinely, medically diagnosed as MR.)
I’m sorry for babbling.
I suffer from a still undiagnosed, possibly “female” problem. We’ve tried nerve therapy (lyrica – ooh, side effects were horrible – I like being able to see, thanks), physical therapy, with nothing. Right now the pain can be controlled for the most part, so I go in monthly, pay 12 dollars, and get my prescriptions. I don’t want to do anything new during school.
I’ve been on many medications for pain. This summer I started Avinza, which was described as a 24-hour delayed release morphine pill. Before that, I’d been on fentanyl for about two years. (Fentanyl gave me relief long enough to start college. I needed to be pain free for the start. Now that I’m settled in as a junior, I can handle school and pain. Most of the time.)
I’m on other non-narcotic medications for pain control. Most have side effects warnings about drowsiness and what not. They are one reason I don’t drive. (I also don’t want to.)
Plus the narcotic medication itself. I build up tolerance to medication fast, not just narcotics (this was a problem with my thyroid treatment – we were in every week b/c of side effects).
So I worry. I worry about addiction. Am I creating the pain so I can take the medication? But it doesn’t *do* anything awesome enough to warrant me popping them like candy. Well, it relieves the abdominal pain, removes the knives from my abdomen. (Er, don’t ask your classmates to stop stabbing you when the pain is bad. Well, they already thought I was weird. And I did explain why.)
I also worry because for a long time, my pain medication had tylenol in it. So I worry about liver problems as well. Luckily, everything was okay this summer. I was worried enough to ask for a blood test.
I also worry about the future – can I hold down a job? Where will I be at the end of this semester? At the end of this month? What about insurance? (Still under dad’s coverage until August 2011.)
My mom has been great support, but my father has not. When I had thyroid problems, he had be dragged to my endocrinologist and have it all explained in itty bitty words that I wasn’t just “lazy.”
And since this started, ugh. I reportedly spent one summer wandering/walking around town in a “drunken/drugged haze.” (Totally untrue, as I spent most of that summer on my *bike*.)
My doctor can be a jerk at times. He’s the best in the area and he knows it. He is the only GYN that does pain management and other “hard” cases. He’s never refused me or denied my pain. But sometimes, he just does. not. get. it. He walked in to the exam room and my mom and I were laughing at, therefor the pain must not be bad, this past month must have been great! Sometimes I get the impression that because I’m not screaming, writhing on the floor, or in a fetal position 24/7, I’m not really in pain. And that’s from the doctor I’m supposed to trust. (Actually, he has risen in my eyes by finally admitting that he doesn’t know what is going to happen, what will work. Rather than just “we’ll do X. Because. See you next month.”
Oh, this was long, but it could have been longer.
Kaitlyn´s last blog ..The Franken Senate Defense Appropriations Amendment
Oh my god, yes. My mother has chronic migraines. They’ve only gotten worse as she’s gotten older. And she has tried everything possible at this point, and the only thing that sort of works is fioricet, taken preventatively. Which is a barbiturate. And thus she has to jump through umpteen hoops to get it, because hey, clearly wanting to be able to stay upright is drug-seeking behavior. Argh.
Agreed.
Not that I think anyone should not get appropriate medical care, but before my adenomyosis was diagnosed via a few years ago, I spent a decade going to various health care providers complaining of extreme pelvic and menstrual pain. When pelvic exams, blood tests, ultrasounds, and laparoscapies — the latter done only after much insistence on my part — turned up nothing, you know what the doctors’ verdicts were?
Not that I was accurately describing real pain for which they couldn’t pinpoint a cause.
Rather, that what I was experiencing were typical menstrual cramps.
Tori´s last blog ..I am drinking iced coffee from a beer glass.
Gods. I can relate.
Fortunately, I don’t have to jump through quite so many hoops (I get a prescription with two refills) and have a magic phrase to pull out when doctors get too bad. Combine “psoriatic arthritis” (which affects my spine) and the phrase “Crohn’s Disease” and medical people tend to shut up. This is because people with Crohn’s are not supposed to touch NSAIDS with a ten foot pole. Internal bleeding is generally considered a bad thing. I would give a lot to actually be able to take NSAIDS again. They actually help the inflammation.
I still come up against this problem on a regular basis, though. The worst was the time that I lost my script in my house and couldn’t find it. I was doing well and managed to make one month’s worth of hydrocodone/apap 7.5/500 (90 tablets) last two months without even thinking about it, since I had no real flares, but I ran out and couldn’t find the script. I was still one month short of getting my new one. My call with the nurse lasted for half an hour and ended up with me sobbing. They gave me a month’s worth, but if I screw up again, they’ll cut the narcotics.
That idea is terrifying to me. I can’t live without the pain meds. This is not because I am addicted, but because I am dependent. They are necessary for my well-being. Trying to live in my body with that level of pain and no mitigation is soul-destroying. I have never, even once, gotten high off of my pain med dose. I can function with no impairment on it, because it is being used for what I need it for – pain.
I despair of the day that I have to move up in pain meds. My rheumatologist and I have milked Tramadol, Vicodin, and now the Vicodin ES equivalent for all their worth and over five years to keep me off of Schedule II drugs. They are coming, though. :-/ I fear Percocet or OxyContin, simply for the level of harrassment that will be reached.
In addition, I fear toxicity with so much paracetamol/acetaminophen in my body. It’s bad enough that I take methotrexate on a weekly basis, but I’m poisoning myself with near the high end of “safe” acetaminophen usage, too. My liver is in constant danger. The sad thing is that the acetaminophen isn’t actually there to help, though there is some synergy. It’s to discourage addicts.
The situation with pain meds is so screwed up that there are not words to describe it. Those of us who need the drugs should not be punished so that there is a slight chance that people wanting to get high might not be able to get them. That doesn’t even work, really. Like someone said above, it’s Security Theater.
Argh, that’s hydrocodone/apap 7.5/750, actually. I’m tired and in pain. I should probably step away from the keyboard.
“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…
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.”
I get why you are drawing this distinction between the act of taking medication, and additive drug taking, but I do find it problematic. Yes there are many stereotypes surrounding addicted (in)dividuals which are generally negative. The addict is stereotypically self-destructive, out of control, needy; they are basically unable to fulfill the role of ‘responsible’ citizenship. But in your post you don’t seem to deal with/acknowledge the fact that addiction is in and of itself a moralised social construct. Drawing a distinction between the addict/ non-addict (you are saying you belong in the latter category), involves a culturally mediated assessment of whether drugs are being used to restore or disrupt ‘normal’ bodily processes. This first assumes that there is an organic, natural states of physical and/or mental health that is universally desirable, and secondly, that it is desirable that we return to, rather than deviate, from this state.
The addict/non-addict distinction further feeds into a larger process of dichotomising certain people/practices, for example: normal/pathological drug taking, good (in)individuals/ bad (in)dividuals, therapeutic substances/(re)creational drugs, real pain/unreal pain, excessive bodily pleasure/socially acceptable bodily pleasure, justified drug taking/(un)justified drug taking, taking drugs to cope with life/taking drugs for ‘social escapism’ (whatever this is-it is a bad thing). The problem with this binarising process is that it inevitably places people who take drugs within a hierarchy, where doctors and society at large impose value judgments on who is most worthy of taking them.
Is this really constructive though? Does it help people? If so, who? Who determines what is good/bad drug-taking behaviour? Why do we need to moralise people who take drugs?
There is a really good book called ‘What’s wrong with addiction’ by Helen Keane that I would recommend you read (assuming you haven’t already). There is a review of it here: http://www.australianhumanitiesreview.org/archive/Issue-Jan-2003/rooney3.html. I’ll provide an extract:
‘Keane defines the addict as one who resists proper subjectivity in a society in which the individual is “obliged to be free”. One of Keane’s purposes is to rethink contemporary ideas about subjectivity, including the question of whether or not addiction is wholly self-destructive behaviour. That the addict treats the body as an object, something to be experimented with, violated, abused, poses a significant challenge to mainstream understandings of singular individuality…. Locating addiction as a product of “a peculiarly modern regime of disciplinary power and knowledge” (7), Keane’s work is overtly influenced by Foucauldian ideas about the deviant body as one that is both produced by and marginalised within normative power structures.”
In the book, Keane also talks about the way in which addiction is highly gendered. And I agree, I think there are strong links between the social othering of addicts (as irrational, out of control (in)dividuals), and (wo)men, who are stereotypically hysterical, excessive, uncontrolled -you know, the-womb-wanders-the-body bullshit.
Your post was in part about recognising the ways in which access to medication is being controlled by others, and the fact that this control is highly ableist. And I agree, it is disgusting and unethical amongst a lot of other things. But one of the ways in which you’re making this point is by constantly drawing up distinctions between your legitimate drug taking, and that of ‘addicts’. I guess what I wanted to say is that the label of ‘addict’ is such an incredibly complex thing in itself; it is caught up in a process of social othering, of marking certain people’s happ-iness and bodily pleasures as perverse. The disavowal of addictive behaviour, and the distancing of oneself from ‘the addict’, is itself problematic, and there also at play is the assumption that addiction is just objectively a bad thing. No cultural/moral judgments involved. That is never the case though.
( Btw, I’m sorry, I really did try to keep my comment below the 700 wrd limit).
Oh, man, does this ever ring true for me! I have MS, and my neurologist seems simply unable to recognize that I also have *pain*. Real pain, that makes my day difficult to get through. He was giving me Vicodin for flares, but doling it out as though it was made of gold. And if I called for more, he’d only give me 15 tabs and make a point of commenting about how much pain medication I was taking. Yeah, I’m taking pain medication. Because I’m IN PAIN.
Things are somewhat better now, because I am also seeing a spine specialist, and she is much better about simply prescribing the Vicodin without making me go through hoops to get it. I worry, though, because I’m not seeing her for something chronic, but for an acute neck problem. If we can figure it out and I’m not seeing her anymore, then I have to count on the neuro for Vicodin. And that sucks. I’m using my scrip for acute pain to treat my chronic pain, in other words. Argh.
That’s a lot of “me, me, me!” but I wanted to agree with your post and with the commenters. This issue is REAL.
I am so grateful for the NHS. £7.20 for a prescription, no insurance companies to argue with. Certainly better than what you have to deal with.
Neverthelss, some of that stuff hits home. This is gonna be a bit long-wided and self-focussed, but I’m sure this isn’t just relevant to me.
I’m on several psychiatric medications, and this is something that happened to me a few months ago. (The idea of meds=shameful is so pervasive that I don’t want to say exactly wat I’m on. If people who know me read this…)
I go to see Dr. L, who is lovely. I tell her some problems I’ve been having and that current meds aren’t doing anything. She suggests I start on [drug] as well and writes out a script. So I go to the pharmacy.
sanabituranima: I have a prescription I need filled. (Hands over the script)
PHARMACIST: We don’t have any of that in. We’ll have to order some in and you can pick it up tomorrow.
The next day
sanabituranima: Hi. You had to order some [drug] in for me.
Pharmacist: There was a problem with your prescription.
sanabituranima: (Is puzzled) You didn’t say that yesterday.
Pharmacist: You need another prescrpition.
sanabituranima: Why?
Pharmacist: Well, just take it back to your doctor and she’ll sort it out.
sanabituranima: (gives look of blank incomprehension) Huh?
Pharmacist: We need a new one. Just to be sure.
(Sanabituranima goes home and phones doctor.)
sanabituranima: Hi, is that Dr L’s secretary.
Secretary: Yes.
sanabituranima: There’s a problem with the prescription Dr L gave me.
Secretary: What?
sanabituranima: I’m not quite sure. The pharmacist just said to ask for another one.
Secretary: Ok, Dr L will post you another one.
Two days later, when the new script arrives
sanabituranima: Hi. (Gives new script)
Pharmacist: (Looks at news script for a few minutes) Do you have any ID?
sanabituranima: I’ve never needed ID for prescriptions before.
Pharmacist: Yes, but [drug] is a controlled substance.
sanabituranima: (Gets out university campus ID card) Here.
Pharmacist: I need to see a driver’s licence.
sanabituranima: I don’t drive.
Pharmacist: This isn’t a valid ID.
sanabituranima: Well, what am I supposed to do?
Pharmacist: You need a valid ID.
sanabituranima: I haven’t got anything else.
Pharmacist: Do you have a passport?
sanabituranima: Not with me.
Pharmacist: Well, can you run along home and fetch it? (The rest of the dialogue obviously isn’t exact, but I specifically remember “run along home.”)
About 20 minutes later
sanabituranima: Hi. I’m here for my prescription.
Pharmacist: Do you have your passport this time?
sanabituranima: Yes. (Shows the passport)
Pharmacist: Is this your passport?
sanabituranima: (increasingly puzzled and annoyed) Yes.
Pharmacist: This photo is of someone with much shorter hair than you.
sanabitranima: (exasperated) My hair grew. It happens.
Pharmacist: (Grudgingly hands overbox of pills)
And it’s been more-or-less like that. Every. Goshdarn. Month. And I’m not allowed to get a longer-lasting supply.
*sigh*
sanabituranima´s last blog ..Like lightening
“The worst part is, I go through all this trouble, and abuse from pharmacists, nurses, family members, to get the bare minimum treatment for my pain. I used to be on OxyContin 20mg, with Tramadol for breakthrough pain. That actually worked. I could sleep, I could go shopping, I could clean. But OxyContin is popular among addicts, so now the very people the drug was designed to hep can’t get it. Now I take one Vicodin HP, three times a day, and I can hardly move. Or sleep.
For that privilege, I grovel and beg and apologize for being in pain once every 30 days.”
*hugs* That is just awful. How can people be so cruel?
sanabituranima´s last blog ..Like lightening
Yes YES YES.
I have gone through several days of serious withdrawal several times because it is so damned difficult to fill my narcotic pain medications. I’m scared of it happening again every single month.
I take three narcotic pain medications. One is minor enough that it’s not a big deal. Two are the big time ones that have lots of special rules attached. One of those, the Kadian, is a time released morphine capsule that I *HAVE TO* take twice a day. Because it’s the kind of medication that has to stay in your system to be effective and because the body goes through serious withdrawal if it is suddenly removed, it is completely irresponsible for any medical practice to allow me to miss a dose. But it happens.
And here is why:
1. My doctor has to write the scripts down physically on paper and they must be either brought in to the pharmacy by me in person or sent through the mail. They cannot be called in or faxed in.
2. I see my doctor every three months, and he is allowed to write out three separate scripts for the current month, the next month, and the month after that. They have to be separate scripts, not one script allowing for refills.
3. These scripts are dated with the date I see my doctor, and can only be valid for 60 days. So I would have to fill the medication the day of the appointment, then exactly 30 days later, and then exactly 30 days after that in order to be able to use all 3 of them. After 60 days, the script is voided and the pharmacist refuses to fill it.
4. The date I see my doctor rarely matches up with when my current bottle of pills runs out (because it’s not like they can schedule me for exactly three months out every time, so it just ends up not matching up every time). And I am not allowed to get this medication more than 2 days early. So, if I see my doctor on the 21st, but my current bottle of medication doesn’t run out until the 30th, then I can’t take the script in to the pharmacy any earlier than the 28th. So then I take the second one in on, say, the 26th of the following month. And then … that third month I am screwed because even taking it in on the 24th, I am 3 days late on that particular rule. But I also can’t bring the script in any sooner than the 24th, because I am 3 days early on the other particular rule.
5. This leaves me with the only option left which is to only get the two month’s worth of paper scripts from my doctor and calling in for the 3rd at the exact right possible time. This gets tricky, too. Because I still have a narrow window of time to work with. I have to order the script in time for my doctor’s office to write out the script and send it in the mail and for the pharmacy to fill it before I run out, but not so early that my insurance company will deny it because I tried to order it too soon.
6. Add in that there is currently confusion between my doctor’s office and my pharmacy as to how I am supposed to handle ordering this medication. My doctor’s office no longer allows me to call them directly and ask them to send the script to the pharmacy. They tell me to call the pharmacy, ask the pharmacy to fax my doctor’s office, and then the doctor’s office will send the pharmacy the script. But every time I do this, the people at the pharmacy get all upset about having to contact my doctor’s office and remind me that with this type of medication they can’t do anything until my doctor’s office physically mails them the paper script. Which I know. And my doctor’s office knows. But for some reason we all three have to do this dance every month anyway. There is no auto-filling for morphine, right?
7. So, every three months, I have to find the exact right date to make sure I’m in the right window of time for all of these stupid rules, and you know, hopefully, I’m not too sick to function at this exact right time or have a totally human moment and forget like the rest of the population is allowed to do sometimes or happen to be out of town or … whatever. I have to be on top of this, and then I have to call the pharmacy (note also that I have anxiety around making phone calls so it takes some extra gumption for me to do this in the first place), do the little annoying dance with the pharmacist I talk to, who has to fax my doctor’s office (and I’m most functional later in the day which means the doc’s office is usually already closed and they won’t get the fax until the next day – or days later if this occurs over a weekend or holiday), and then a receptionist at the doctor’s office has to get the fax, give it to a nurse, who gives it my doctor who can write out the script (unless he is gone in which case they have to track down another doctor who has no history with my but who is willing to write out the script in his colleague’s stead anyway), and then he gives it to a nurse, who gives it to the receptionist, who sticks it in an envelope for it to go out in tomorrow’s mail, and various postal workers throughout town handle it, and finally it lands at the pharmacy where any number of people might open it, type it in to the computer, connect with the insurance company, make sure everything is correct, and then finally fill it and *MAYBE* contact me letting me know it’s in (this does not always happen, I often have to check every day on my own).
So, right, lots of people involved – lots of room for human error. And then, of course, I have to physically get to the pharmacy to pick up the medication which requires me getting a ride from someone or having them do it for me (which could cause problems), so that’s one more person involved. And again, if I’m having a few off days, getting to the pharmacy can be a challenge for me in and of itself.
And if anything goes wrong, as it often has, or if a new rule springs up somewhere (and this has happened to me too) that I wasn’t aware of, narrowing my window down even further, or if I didn’t pay close enough attention to the dates and mess up when I order the medication, etc. here is what happens to me:
lots and lots of extra pain, increased insomnia, nausea, extreme irritability, chills and other strange sensations on my skin, feeling as if all of my nerves have been exposed and/or lit on fire, watery eyes, sneezing, shaking, sweating, muscle spasms and tics, feeling cold and hot at the same time, blood pressure and heart rates going through the roof, feeling as if I’m running a marathon while simultaneously being unable to move, paranoia, suicidal feelings, extreme restlessness, and just basically some of the most horrible sensations physically and emotionally you can think of.
And even once I get the medication back into my system again, it takes days, weeks, longer even to recover from the experience and get back to my normal levels of functioning again.
Because someone somewhere decided it was a good idea to make yet another law making it difficult to fill a prescription. Because someone at the pharmacy, doctor’s office, or post office made a mistake – which happens, we all do it. Because I made a mistake. Because I got one of the fifteen medications I take mixed up. Because I couldn’t get a ride. Because so many stupid reasons. I have had to go through that misery. And am likely to have to do it again.
And I’m sorry, but that is obscene.
And this doesn’t even address the fact that if there were some emergency situation in which I couldn’t get this medication refilled, I’d be up a crick. Like if I were out of town and the car broke down and I was stuck there. (I am not allowed to use any pharmacy but the one I always use – I signed a contract to that effect.) Or if there was bad weather or a natural disaster and I was stuck at home and/or the pharmacy ran out of medication/became inaccessible. These scenarios run themselves through my mind a lot. I can’t build up a reserve of pills for emergencies because they don’t let me refill it early enough to do that and even the small amount I might manage on occasion to build up gets used during those times when I run out to help avoid those pesky withdrawal symptoms! Ugh.
This is, um, a bit of a pet issue with me. *pets issue*
Thanks for writing about it!
Rosemary´s last blog ..Glee and Beer
Oh, yeah. This.
I have a post in the queue…but yeah, we have an extra step for my pregabalin, b/c it isn’t in our fomulary. Good times.
But this:
And I can tell you from experience: hydrocodone withdrawal is nothing compared to Effexor withdrawal
Yup. And, yet, I have found it worlds easier to get a doctor to prescribe me Effexor than hydrocodone or Lyrica…b/c (and I am only talking about MY experience here) see, Effexor has to do w/ my head, ya know, and that would mean that it really is all in my head, right where they want me to say it is…/digress…
My doctors couldn’t time it right so that I could do all of this once a month…I have to get my hydrocodone and pregabalin at different times each month, which is a treat. All of this is why I quit meds altogether for a while and pretty much lived in my apartment…I couldn’t handle having to explain myself all the damn time.
Reading your post and the subsequent comments gave me shivers, and also the sick sense of comfort in not being the only one. It reminds me how angry and resentful I am at having to go through that exact same process every month. I have Interstitial Cystitis and Fibromyalgia. Just being diagnosed was a nightmare. Now I have to *try* and manage my pain. I’m on morpine and percocet, a muscle relaxer, an anti-depressant, a bladder medication, and a sleep aid. I also do at home bladder installations every four hours that have an analgesic in them to help with the violent agony that accompanies the IC. These medications make it possible for me to live any sort of life that resembles the one I had before I got sick. I wasn’t always taking the narcotics; it took me almost two years to elevate to the privilege of being given these highly dangerous and powerful drugs. (heavy sarcasm)
I tried Lyrica, Neurontin, and several other drugs within the neuro catagory only to find that I’m allergic to these medications and the doses I had been prescribed were very dangerous. I had to show my insurance company and my doctors (urologist, ob/gyn, rheumatologist, pain specialist) that I had extended every effort to try every medication, physical therapy, TENS unit out there -aside from narcotics- before they would prescribe them. I have to have a trimonthly urinalysis to watch the levels of the narcotics in my system to make sure I’m taking them correctly (and not abusing anything else on the side), and I can’t get a refill without seeing my doctor. My main frustration lies in my tolerance level. Since I take these every month at the amount I’m prescribed, every few months things need to be reevaluated. I dread asking and undergoing the judgment and hearing the dreaded, “Let’s give it one more month”. I’m always asked, “And why do you think the medications aren’t as helpful anymore?” It’s insulting. I am disabled by my severe form of these conditions which are exasperated by stress, yet every month I get to panic about getting my prescriptions changed and/or refilled. I hope the attitudes will change, as described by caffeineaddict. Until our society stops judging and starts listening, we’re all screwed every thirty days.
caffeineaddict –
I don’t have much to say, right now, in response, but I wanted you to know I did read your comment, and I do think you make some very needed points, and I have been thinking about this hard ever since you posted. I want to understand it in a genuine way. That’s going to take me awhile. But thank you so much for taking the time to make these criticisms. It’s something I want to address in a top level post sometime, but unfortunately (if you’ve noticed) I don’t have much time/energy for new posts now that work has started. But… certainly thinking about it, trying to avoid making the same mistakes again, trying to make sure I understand it correctly, and really hoping to be able to raise the issue in a post some time in the future.
(Just commented on abbyjean’s post here, as well.)