Tag Archives: drugs are bad mmm’kay

A Conversation With a Pharmacist

[Scene opens with a loooooooong wait in the pharmacy before my number finally “pings” on the digital number-pinging thingy, as I struggle out of my chair, and hobble up to the pharmacist’s window, and hook my cane on the window ledge for emphasis as I hand over my ID and number slip, wincing in the fluorescent lighting on the other side.]

Army Medic Pharmacist: One moment.

Me: No problem, Specialist. (I am well aware that two of my three expected prescriptions require me to wait as they are counted, twice, some other fun stuff, though I no longer have to run around to get them, and have to be signed for, so I amuse myself by reading the literature he hasn’t bothered to hand me yet.)

[AMP returns with the Civilian Pharmacist]

Civilian Pharmacist: You have taken pregabalin with topamax before?

Me: Yes.

CP: What about this antacid?

Me: No. But I assume it is the same as my previous one.

CP: Yes.

[I sign for one med. CP hands me two bottles.]

Me: There should be a third script.

CP: No, only the two.

Me: There should have been a vicodin script as well.

[CP raises her eyebrows at me]

CP: You are on pregabalin.

Me: Yes.

CP: That is a time released pain medication.

Me: Yes ma’am.

CP: You don’t need vicodin with a time released pain medication.

Me: With all due respect, ma’am, I usually have both.

CP: Well, there isn’t a script for it, and I don’t think you need it.

Me: Well, ma’am, there should have been one, and I am going to ask you to call my provider about it.

[Staring contest ensues between Me and CP. I win. CP picks up phone and asks AMP for Dr. Awesome’s number. I can hear Dr. Awesome on the other end apologizing for forgetting the script, that the computer wasn’t working right when I was in her office, which it wasn’t, and that she forgot to put it in before leaving the office, and would put it in the next day she was in.]

CP: Dr. [Awesome] apologizes for your inconvenience. You can pick up the script on Monday.

Fin.

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 TRICARE Pharmacy and the Second Shift

Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate.  Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

Background on the Second Shift for the Disabled here and here.

When I have to run several errands I try to put them all into one day.  There are up sides and down sides to this, the upside being that I don’t have to drag myself into the main post multiple days, the down being that it is almost guaranteed that I will be doing nothing for the next couple of days except bonding with my sofa.  Getting to the main post itself is an ordeal, figuring out if I can make it to the bus stop or if I should spring for a taxi, both which require considerable walking, and then it is another ordeal getting from one building to the next, timing getting back to the smaller post to pick up The Kid from her bus and getting home.

But life is full of things that require this type of planning, not the least of which is refilling medication.  I saw that I was needing refills on my main medications so I planned this trip to coincide with some other business I had to take care of.

The pharmacy is a time suck.  There is really no other way to describe it.  Everyone, active duty, dependent, civilian contractor and retiree alike use the TRICARE pharmacy, and it is pretty busy all the hours it is open.  There is a website where a person can enter their scripts ahead of time “to avoid waiting”, but all this really saves is the five minutes you wait at the window while the pharmacist fills the bottles, since they won’t fill a bottle for a controlled substance until you sign for it anyhow.

I currently take two medications that are considered controlled substances by the DEA and FDA.  I am not familiar with schedules and what gets thrown on what schedule list and by whom, but I know that this adds extra hoops to my refills.  I was not made aware by my doctor just how many.  After doing the usual line dance involved to get a new fill for my pregabalin (because you don’t get “refills” on this, you only get new scripts) I showed up at the pharmacy window.  I knew that there was going to be trouble when the pharmacist saw me and immediately called over an Army Medic to talk to me.

The Medic asked for my form.  The blank stare on my face told him that I had no idea what he was talking about.  He repeated his question, adding that it was the approval form for my pregabalin.  When I told him that no one mentioned any form and that I didn’t have one he informed me that he filled my script last month on a verbal OK and was not going to do so again.  I needed to go back and find the prescribing doctor (yeah, because it is that easy) and get the form.  The thing is, the prescribing doctor isn’t my doctor, because all controlled substances have to be signed off by a doctor of a certain rank, and my doctor is a civilian.  I have never met this doctor.  He simply approves my meds, and my PCM is on leave.  Now, mind you, I have already gone through several steps just to have this doctor order this medication with my PCM on leave, which is only one extra step than with her physically here.

As it turns out, not only is pregabalin a controlled substance, but it is also categorized as a TRICARE Non-Formulary medication.  TRICARE classifies medications like this:  There is a list of prescription medications that must be kept in stock at all MTFs called the Uniform Formulary.  This is broken into two categories, generic and name brand.  Then there is TRICARE Non-Formulary.  From the website:

Any drug in a therapeutic class determined to be not as relatively clinically effective or not as cost-effective as other drugs in the class may be recommended for placement in the non-formulary tier, Tier 3. Any drugs placed into Tier 3 are available to you from the mail-order or retail network pharmacies, but at a higher cost. Prescriptions for non-formulary medications can be filled at the formulary costs if your provider can establish medical necessity.

I have to get my doctor to prove that this medication is better than all the other medications in the formulary for me, which wouldn’t be frustrating if I hadn’t had three doctors beat me with the “Well, if you don’t want to get better then don’t try Lyrica” dead horse the minute it was FDA approved.  *ahem*

The rub is that apparently I am expected to personally know of and make sure that these forms are filled out and hand delivered.  I knew that approval had to be given by an appropriate ranking doctor, but not that I had to get it in person.  So Mr. Medic Pharmacist sent me over to find the prescribing doctor who wanted to review my patient history, again, because he can’t be bothered to run my Sponsor’s last four into the computer and look at it when he writes my scripts.  I had to go find the doctor, review my history, and hand carry the form back to the pharmacy, only to find that the doctor came along five minutes later to make sure everything was fine (the doctor turned out to be pretty great, actually).

This has to be done every month, because non-formulary meds can only be given in one month amounts.

At any time a board of doctors can decide that something in the other two tiers is more cost effective for me and deny me the pregabalin, even if my doctors believe this is the best course of treatment, even if I have been on this medication before, even though I have already adjusted to the many side effects, and even if the Flying Spaghetti Monster hirself descended and said it should be so…

This paper trail runaround is a nightmare for someone with limited resources of energy and time.  It literally took me two hours to fill one prescription bottle, most of that time spent walking from one end of the building to the other (with a fun fire drill in the middle!).  This kind of running around puts significant strain on those resources, and for me it left me literally unable to do much the next day, needing extra hours of sleep and more pain medication to recover.  Now that I know the process I can plan ahead, but the knowledge is part of the problem.  We can be vigilant with our care, question our doctors in the precious time we have one on one with them, phone and email and re-check every thing, but still, some of us have to push our resources further.  It’s terrible, and it shouldn’t have to be this hard.  Not for our basic needs.  Insult to injury is that this is what is going on in our military health system.  Our troops and veterans are doing this run around.

It’s a great thank you.  Really.

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.

A Delayed Deployment of Care

Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate.  Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

One of the most frustrating aspects of dealing with a chronic pain condition while under military care, as an active duty service member or a dependent is an inconsistency of care.  Something that I learned pretty early on is that my best bet for getting the best care is to have a regular doctor.

May I drop into a sports metaphor?

Your regular doc, or in my case, my PCM, should be the quarterback of your health care team.  Sie should be the one on the field, aware of all the other team’s members (your symptoms, labs, tests, etc.), the plays your team have available (medications, treatments, therapies you are trying/have tried), the other team members (other docs and lab techs), as well as the special teams coaches available (specialists).  The quarterback should be able to run the plays and call audibles as needed, because the quarterback presumably knows the team, is comfortable with the team and the plays, and has been doing this a while.

But if you are playing on a military team your quarterback gets traded.  A lot.  Often without you even knowing, in the dark of the night like Jon Gruden to the Buccaneers.

It isn’t unusual to call central appointments (because no matter how many times you have seen your PCM you can not just call hir up and schedule your own damned appointment directly, even if sie told you to) and ask for an appointment with CDR (Commander) Happygunns only to find out that sie has been sent out w/ the Reagan to whatever mission it is currently floating.  To call this a hiccup in care is the understatement of the year.  It can pretty much end the season before the playoffs.

This is a huge chunk of what amandaw calls the Second Shift for the Sick if you are trying to navigate your health care through the military.  Now, you have to find the time to get over to the TRICARE office to request a new PCM (which usually has to happen in person).  That takes time and spoons, and may involve some accessibility issues.  If you have a chronic condition you have to make sure that you get a medical officer (who, to my understanding, is O-5, equivalent, or above) to make sure sie is qualified to handle chronic conditions, instead of a Chief or other upper enlisted Corpsman or an lower ranking officer, which is a majority of PCMs at most MTFs.  Now, you have to call to set up a meet and greet with this new PCM, and that is going to take time because CAPT Nukeboom already has existing patients, or is new and has to fit you into the schedule.  If the appointment you were trying to make with CDR Happygunns was for a prescription refill (like, oh, something super easy to get like Vicodin or another pain medication), this means that during all of this time your quality of life is being compromised.  That prescription might mean spoons, which translates into showers or laundry or hugging family members or just being able to sit upright.  Maybe it was an appointment for much needed lab results (wait for it…).

CAPT Nukeboom isn’t going to just jump in and hit the ground running.  If we go back to the metaphor, sie is going to need time to get acquainted with the team.  Sie might even throw out the playbook and start over from scratch.  Odds dictate that CAPT Nukeboom wasn’t just going to write that Vicodin script or whatever you came for (yeah, I was kind of done w/ football too…let’s see if I can’t get a good hockey metaphor next time) anyway, you drug seeker, without really really making sure you really really need it.

Those lab result you were waiting for?  If you hadn’t gotten the results from the doctor that ordered them, and that doctor happened to be CDR Happygunns then you are going to have to go get new tests (WHEEEEE!).  Only the referring doctor can get the original results, but that’s OK, because CAPT Nukeboom wanted new labs and tests done anyway, and you haven’t been poked with something sharp in at least three months…

There is also a good chance that CAPT Nukeboom might disagree with whatever course of treatment CDR Happygunns was recommending at the time, regardless of how well it was working.  More spoons will be spent trying to reason with said new doctor who may or may not be receptive to your input.  If you are dealing with a best case scenario they are, and things speed along nicely, and you are only set back about three weeks in your care (only!).  Hopefully you can hold on without your Lyrica or your pain medication or your anti-seizure meds or your anti-depressants or whatever else you are waiting on, because you are not going to get anything until CAPT Nukeboom is satisfied that sie has fully come to understand your file.  If you are dealing with a less than best case scenario, you are going to fine yourself back in the TRICARE office begging them to let you request another new PCM.  Second verse, same as the first.

There are obvious reasons why these things happen (um, Hi, Mr. President, thanks!), but there is absolutely no reason why it needs to continue this way for people living with chronic conditions.  Modern technology means that our medical records are kept electronically as well as in hard copy back ups for all the doctors to access.  Lab work and test results are available freely to any doctor with access as your health care provider.  Notes and thoughts and memos from the countless doctors and providers…oh and all the specialists are all still there…a phone call or an email away.

A bump in your care can be enough to set you back months, and maybe even undo any progress you have made at all.  For some people I know (myself included) it can be enough to make you try to just “tough it out” and draw inward, afraid to seek medical care.

While the military medical system has many wonderful facets, including the fact that it is “free” *ahem* there are some huge flies in the ointment that need to be addressed.  With the high volume and tempo of deployments going on and the demand of medical personnel in the field so high, it might do well to actually use the military’s love of contracting civilians a little more in areas where it could be more useful.

I’m just sayin’.

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. Continue reading Where I jump in and defend pills…