Category Archives: Medication

I CANNOT EVEN.

Watch this video, if you can.

Warning: MAJOR trigger warnings for rage, high blood pressure, and accompanying symptoms due to medical personnel assuming ER patients who ask for medication for pain are criminal drug-seekers and addicts. (In short, your average visit to a new doctor or pharmacist.)

EDITED TO ADD LINK: Some folks are reporting difficulty seeing the embedded video – if you’re having trouble, try this direct link.

A friend of mine sent it to me earlier today and asked me to watch to the end. I couldn’t do it. Fifteen seconds into the actual “song” portion of this … “parody” (PLEASE, give me a break) my heart rate skyrocketed, my chest tightened, my stomach started doing the flippy-floppy thing that always happens when I have a high blood pressure episode – I couldn’t finish watching.

If I had, I’d have seen this:

Screenshot from video showing text overlay reading "Every day 46 people die from an overdose of prescription painkillers in the US"

You know what else kills over 40 people every day in the US? Car accidents (actually, on average 100 per day). I don’t see DMV officials being urged to mock driver’s license applicants and view them as criminals until proven otherwise.

Or this …

Screenshot of video with text overlay reading "The non-medical use and abuse of prescription drugs is a serious public health  problem in our country"

 

You know what else is a serious public health problem in our country? The under- and non-treatment of chronic pain, which is only getting worse thanks to the “abuse panic” and the “war on drugs”, with over 100 million Americans coping with chronic pain every. single. day.

And then there’s this …

Screenshot from video with text overlay reading "Medical providers need to continue to address this issue while avoiding the tendency to pre-judge and  react with irritation  from the fear of being manipulated by drug seekers"

Finally. Something we agree on.

And then …

Screenshot from video with text overlay reading "Patient's presenting to the ED with pain-related complaints should be evaluated without bias  and with consideration of the underlying cause of their pain"

[sic], but yes, YES. We agree: YOU SHOULD DO YOUR JOB WHEN YOU’RE ACTUALLY AT WORK. That’s a solid idea.

Oh but then …

Screenshot from video with text overlay reading "And we need to help our patients understand that although we may not provide them with narcotic pain medication at their visit, we will always try to help them"

“Help them”? Help them how, exactly? By creating awesome parody videos using Taylor Swift* songs to mock them mercilessly and make it super-clear to all what you REALLY think of your patients?

Get ready for the kicker, Dolls ….

Screenshot from video with text overlay reading "To learn more about prescription drug abuse, visit the National Institute on Drug Abuse at www.drugabuse.gov"
That’s right. I could be wrong here, but it sure looks to me as if this video was sponsored by our government. With our tax dollars.

I am livid. I’m so livid, in fact, that the capacity for rational thought is eluding me at the moment. Except for this one thing, and this is what brought me here after months of not posting any new blog posts here:

This demands a response. 

I’ll write the lyrics. But someone else is gonna have to do the heavy lifting with the video-taping and the production aspect.

Any takers? Let me know. I’m completely serious, and I’m not letting this go. And neither should you. This shit’s just gotta stop.

They may present this video as a “funny” “parody” (PLEASE!) but every single one of you out there who’s lived with chronic pain and whose treatment plan includes prescription medication – y’all KNOW this isn’t a parody at all. This is REALITY. It’s the reality we face every time we go to the doctor or the pharmacist.

And I, for one, am tired of grinning and bearing it. I’m tired of being quiet out of fear that I, too, will be branded “drug-seeking.” I’m fed up, and I am done. I AM DONE.

If you’re done, too, share this post far and wide. And if you belong to, or head up, an organization that can help make this response better, so that we can get the real story out there, PLEASE CONTACT ME.

* – just saw this in my Facebook feed. Wonder how Taylor feels about her song being used to further the agenda of people who’ve begun denying pain meds even to cancer patients given her own mother’s recent diagnosis?

Medical Marijuana: The Next Wave of Pain Patient Abuse?

medical marijuanaSo, yesterday, I’m scrolling through the email news alerts I save up through the course of the week as a matter of habit. And I see this one subject line that kinda pops out at me:

Marijuana Users More Likely to Abuse Opioids

Now, what the linked-to article actually indicates is that a recent study indicates there may be a correlation between medical marijuana use and patients who aren’t compliant with prescribed opioids.

As we all well know, there’s a huge difference between correlation and causation.

And maybe I’m just being paranoid here …

… gee, Annie, wonder why THAT would be … oh yeah. This. And this

… but I gotta wonder: is this the new front on the war on pain patients? The war on us, Dolls?

I confess: I am not really a fan of pot. It’s purely a personal thing. I just don’t like feeling high. I’ve smoked pot – and unlike our former president, I did inhale – a total of three times in my forty-plus years, and I didn’t enjoy the experience any of those times.

But it’s just a fact that it does help folks with chronic and cancer pain.

And it’s legal in almost half the U.S. states. (Although if you’re using it, even legally, even in those states? You’re still a criminal in the eyes of the feds. How’s that for a sensible policy?)

So, you’ll forgive me if studies like this give me … pause.

I take pause when recent past history tells me, quite clearly, we Dolls using opioids are automatically suspected as addicts and criminals, until we prove we’re not. (Have you ever tried proving the absence of something? It ain’t easy. In fact, I learned in law school – aka “The Dark Hole” – it’s nigh unto impossible.)

I take pause when something that clearly helps so many pain patients is linked to criminal behavior – because I know so many people, including so many policy makers and law enforcement officials don’t even understand the difference between addiction and dependence, so how can I trust them to know the difference between correlation and causation?

I’ve been taking a lot of pauses lately.

I don’t know what the answer is. That’s kind of the scary thing, frankly. Other than a targeted, long-term, intensive public education campaign, what are our choices, really? How many times can we say the same damn things over and over?

When are they gonna listen?

photo credit: Dank Depot via photopin cc

Does Pain Make Us Scared to Go to the Doctor?

So I was speaking with a friend the other day. This is a friend who has recurrent acute pain, not chronic pain, just to be clear. But it’s still relevant to the discussion we started here the other day about how the war on drugs has created this adversarial relationship between doctors and patients.

She’s been trying to get a diagnosis of her pain, which recurs periodically and is pretty severe–severe enough to put her in the bed for several hours when it hits, anyway–for over a year now. After a series of tests revealed lots of little things but no smoking gun, she had to stop the process when her COBRA’d insurance coverage ran out in November. She’ll be covered again in May or June, but until then, she has to carefully manage her access to doctors because of the expense.

So, quite by accident, when she had two root canals in the space of 48 hours and was given tramadol (yep, my old friend) to manage the mouth pain, she found out that the tramadol actually worked on her recurrent acute stomach pain, too. In fact, it’s the only thing that’s ever helped. She’s deathly allergic to morphine and its pure derivatives, so a whole class of pain meds is out of bounds for her. Finding tramadol was for her, as it was for me, a life saver.

Except these pills came from a dentist.

And at the time of our conversation a few days ago, she had experienced two severe bouts of the abdominal pain in a week. And she had exactly four pills left.

She was panicked. That’s why she’d called me. She realized she wasn’t thinking clearly but here’s how she explained what she was thinking:

So, let’s say I go to the doctor. I ask for more tramadol. He says “no.” Because there’s nothing else I can take, he says “take Tylenol” — which we already know doesn’t work for me. And now I’ve got the expense of a doctor visit, no pain relief, and I’ve been labeled a drug seeker.

I get it, and I told her so. Then I suggested she go ahead and make the appointment now, while she had those four pills left, so she could show the doctor she’d carefully rationed the pills and used them only during her flareups. That she was, in fact, not a drug seeker. She agreed that made sense.

This is what it comes down to, dolls. We’re now at the point where we anticipate the suspicion and a lack of medical care.

Doctors, are you listening? We are afraid of you. More specifically, we’ve become afraid to trust you, to seek medical care, for fear that you will jump to unwarranted conclusions.

Now, true, a lot of the responsibility for this falls on us — your patients. And we’re doing what we can to educate ourselves, conquer our fears, and reach out to you.

Are you willing to meet us halfway here?

 

Dangerous Panic Indeed: Why the Media is To Blame for Prescription Drug Abuse Hysteria

assorted pills of various colors on a blue backgroundUPDATE: There’s another new link at the end of this piece!

Maia Szalavitz is my new best friend.

Writing for Alternet, she lays out a sober, sane argument that the media insanity over prescription drug abuse is to blame for an increasingly adversarial “relationship” between doctors and chronic pain patients that echoes what I’ve been saying here for years. (Also here. And here.)

To sum up what we’ve both gone on record with:

  • Prescription pain medication abuse risk is low. Really, really low. How low? One percent risk of people over thirty with no prior history of drug abuse. For those who aren’t screened for prior abuse problems, the risk increases only slightly, to 3.27%. (That’s according to the government’s own data, by the way.)
  • The vast majority of Oxycontin abusers (by far, the chief devil in the almost-religious hysteria genned up over prescription drug abuse) do not  get Oxy through legitimate medical channels. Also, most of them have a prior history of drug abuse. How much is “most”? Eighty percent, according to Maia. (I don’t have specific numbers but that comports with the information I’ve received from law enforcement and addiction counseling providers.)
  • The rate of US citizens addicted to synthetic narcotics like Oxy, Vicodin, percocet, etc. has not risen in ten years. In fact, they’re remained quite steady at a very, very low 0.8%.

Why aren’t we hearing about this? Maia makes a compelling case that it’s about narrative. Simply, the folks who do get addicted to prescription pain meds don’t make compelling “innocent victim” stories.

I think that’s probably true. I think it also has to do with the powerful medical profession lobby, which is (rightfully) appalled and terrified over a growing willingness in law enforcement to prosecute medical professionals over prescription pain meds. They’re scared of losing their licenses — I would be, too — and so they’ve devolved into an adversarial approach to their own patients.

I saw this last year first-hand, in my frustrating experience with my new medical care provider and their in-house pharmacy. (I told that story in three parts — part 1 is here, part 2 here, and part 3 here.) Subsequent to that clusterf*ck, my pain levels increased pretty significantly, and my ability to walk and stand decreased substantially. Over the summer, I had two appointments with that P.A., and at each appointment she asked if I wanted to increase the dosage of tramadol back to 150 mgs twice a day. I said “no.” (She brought it up, and not in an accusatory way — in a suggestive, “are you sure because I’m OK with it…” way. I said no. I wanted to explore conservative measures for a few more months.)

Well, ultimately, those conservative measures didn’t work, and reluctantly, late last fall, I asked her to increase the dosage.

I didn’t even have to go in that time — she just called it in.

So, in the course of one year, we started with an easy, trusting relationship, immediately regressed to an adversarial one with a whole lot of suspicion, then suddenly back to trustful. And I know, without doubt, I am one of the lucky ones. Many dolls with chronic pain do not even get a chance to improve their relationships with their doctors. It starts off adversarial, it stays adversarial.

I wrote in one of those “This Doll’s Story” posts linked to above that I felt like I was being forced to prove I wasn’t an addict, when the logical, the sensible, the appropriate course of action is to assume I’m not until evidence suggests otherwise.

That’s true of all of us. And this is why we really need to work to educate law enforcement, politicians, and the medical profession about the reality of prescription pain abuse risk. We need to arm ourselves with these statistics and we need to share them, publicly and privately, with anyone and everyone involved in this issue.

Doctors need to lose the pain management contracts — they simply put the patient and doctor in opposing corners and set them both up for that confrontational relationship based on mutual distrust. One possible exception: when there’s objective evidence to suggest the patient is, in fact, misusing prescription drugs … but even then, that piece of paper isn’t going to do a thing to protect the doctor or prevent abuse, because an addict will simply find another way. Yes, the contract arguably gives the doctor legal cover to drop the patient, but they already have that by law. If they’ve done their jobs in keeping good records, nothing else will be required in a court or before the licensing board.

Doctors also need to stop looking at the chronic pain patient with suspicion. We’re not the enemy, folks. We’re just not. Law enforcement intrusions into medical decisions will not stop by clamping down on appropriately assertive treatment of chronic pain. It will only stop when we join forces and educate the police and the prosecutors and the politicians.

And the only way we can do that is to start with statistics, and then speak UP.

UPDATE: There’s another excellent article on how the war on drugs became the war on chronic pain patients over at Huffington Post. Hat tip to reader Shannon from Nip Pain in the Bud for alerting me to it!

 

This Doll’s Story – Part 3: Painful Lessons and a Mini-Rant

Green chalkboard with erasers on wooden stand

Even bad experiences can teach us something about our chronic pain

I’d been accused of pharmacy-shopping, apologized to and then ignored, was on the brink of withdrawal, and found out I’d lost track of 21 tramadol pills.

But somehow, probably due to the power of email, we finally got on the same page and I picked up the remainder of a one-week supply on Saturday afternoon.

Almost one week later, I found myself back in the clinic’s waiting room, anxiously eyeing the clock. It was my first appointment since the whole kerfuffle went down, and I was understandably nervous. I didn’t know how much my P.A. had been told about the various head-butting and misfires, which meant I didn’t know how to approach the whole thing. Should I start off with a complaint? Should I pretend like nothing had happened and then do a “now, about last week” thing at the end?

As it happened, I needn’t have worried. She brought it up, right off the bat, after the preliminary “how are you doing?” inquiries. Now, I should be clear here: the P.A. wasn’t confrontational or rude. She was very polite, she listened actively, she took her time … overall, I had no problem with the P.A. during this visit, except for the script she’d apparently been handed right before my appointment.

First, I brought up the issue Dr. C had raised with me: that the medication should have lasted to the end of the month. “I did the math, so to speak,” I said to her, “and it wasn’t exactly as it had been represented to me. I was actually short 21 pills, which is five days plus one pill.” I went on to explain the two possible times I remembered in which the pills could have been taken.

She listened politely, and cleared her throat when I was done. Here’s what she rattled off to me next:

  • “As a medical practice, we’re going to be treating tramadol just like Percocet.”
  • “Tramadol is already treated as a scheduled drug by 17 states. We’re just waiting for the others to fall in. It’s just a matter of time.”
  • “We’ll need you to sign a pain medication contract.”
  • “Also, since we don’t have your records from your old provider yet, we’ll need you to come in every week or two weeks to get refills for the tramadol.”

Well, the hits just keep on coming, don’t they?

I toyed with the idea of tearing down her spiel, point by point (which had been read off to her by one of the doctors, I’m guessing, during a staff meeting about that horrible patient who kept calling and emailing last week…). After all, tramadol is not anything like Percocet; it’s nonnarcotic, even though it does need to be tapered off to avoid withdrawal; and seventeen states isn’t even half, and our state isn’t one of the seventeen, so what does that have to do with the price of tea in China? And don’t even get me started on pain management contracts or why I’m being held hostage by my former doctor’s willingness to fax over hundreds of pages of medical records.

We went through a pain evaluation survey, and when I mentioned muscle spasms that I’ve been experiencing lately, she offered me Flexeril. I found that really strange. If they were so worried about me and my drug use, why suggest an additional drug? One of the riskiest of risk factors in pain medication abuse is mixing drugs like pain relievers and muscle relaxers — say, for instance, tramadol and Flexeril. Yet here she was bringing it up, after all the fuss about the quantity of tramadol I was (supposedly) taking. (Truth: I am NOT complaining. One Flexeril at night has turned out to be a godsend for me in terms of guaranteeing me a good night’s sleep.)

Overall, I left rather stunned, and unsure what to think or conclude. On the one hand, there’s “every two weeks” and a pain medication contract. On the other hand, there’s proffered Flexeril and a very mild-mannered approach.

I debated with myself for a few days about what to do. I could have complained to the layperson director of the clinic’s board, but there was that possibility the clinic would simply dump me as a patient. I finally decided the best approach was to go ahead and keep the two-week appointment, but at that exam, show the P.A. my pain log and explain the nature of the hardship they were placing on me.

Two weeks later, I marched in armed with my pain log and my medication bottles, and a printout of the costs to me, compared with my limited income, to be required to come in every two weeks. The exam portion of the appointment went just as smoothly as the prior one had, and as she was wrapping up and segueing to talking about my next appointment, I said, “Well, I wanted to talk to you about that…” and prepared to go into my rehearsed speech about how I should have earned a little trust here by now …

And she cut me off and said, “Yeah, no, you’re fine. I’ll see you in a month.” When I picked up the refill, it was for a month, with a one-month refill.

Exactly what she’d given me the first time I ever saw her.

It would kind of be funny if it wasn’t so infuriating, I think. What changed between the prior visit and this one? What justified changing the two week schedule to a monthly one? I hadn’t even gotten around to showing her that I’d been responsible with medication. She didn’t have the old records yet (I know that because they asked me to sign yet another release because they “couldn’t find” the one I’d signed the first time I saw them), and that was the rationale she’d offered for the bi-weekly requirement.

So what was different?

Or am I to conclude that this clinic simply runs on whim?

Granted, there are a number of potential explanations in between those two extremes. I am likely never to know with any certainty.

What I am certain of, however, is that even in such an infuriating situation, in which things were done to me, as opposed to things I did, there are lessons to be learned:

  • Keep a pain log. ALWAYS. That pain log helped me figure out that I had never taken more than the prescribed dose, and it could also have offered support for my position about the frequency of the refills, had we gotten that far. Over and above the potential use as evidence for the defense, the pain log is crucial to show your doctors how your medication helps you. (It’s got a ton of other uses, too. If you don’t keep one already, start one today. At that link, you’ll see five other ideas to help you be an empowered CP patient as well.)
  • Keep a running count of your medication. Had I counted the pills periodically, I would have noticed the problem a lot earlier and could have alerted my P.A. then and there, which might have countered the suspicions of her coworkers.
  • Maintain your calm. Always. I lost my temper a little bit, and I’m sure that prolonged some of the brouhaha.
  • When all else fails, try putting it in writing. I have absolutely NO doubt that the first email to Dr. A was what saved me, ultimately. Writing allows you to get out the emotional angst, then go back and edit that out so that your email or letter paints a portrait of you as a rational, even-tempered, responsible (i.e., not addicted) adult.

So, there it is — the sordid tale of my experience being unfairly accused and suspected of drug addiction or, at the very least, prescription medication abuse. I appreciate the ongoing comments of support and empathy, but I also hope you pull something of value out of this story. Something like this could happen to anyone. And the horrible part of it is that you cannot prove you are not an addict. Then again, unless you demonstrate a pattern of abuse indicators, you shouldn’t have to prove anything.

Until reality catches up with that ideal, though, I’m counting my pills and filling out my pain log, every damned day.

This Doll’s Story: Part 2 – What We Have Here Is a Failure to Communicate…

Frustrated woman on the floor next to laptop

Yep, that's pretty much how it felt...

So, after being accused of pharmacy-shopping, I was a little floored, as you can imagine.

Standing there in the Walgreens’ pharmacy waiting area, having just raised my voice considerably, I became acutely aware of people staring at me. I felt a sudden rush of shame, of all things. I’m not even sure a coherent thought or rationale attached to that emotion — just a hot rush of shame.

But what did I have to be ashamed of?

It didn’t really matter, I realized. Because to any casual observer, I was the woman screaming at a doctor’s office at a pharmacy. Clearly, I was drug-seeking and had been turned down. Right?

No, of course not. Wrong, wrong, wrong. But try explaining that to someone — anyone. The futility of defending yourself against implications of this kind was rammed home with particular force a few days later, but there and then, in the Walgreens, I decided I didn’t care what these strangers thought of me. I took my fourteen pills and went home to plot my next move.

I’d decided initially to file a formal complaint — something I’d never done in my entire life. My state’s medical licensing board’s website contained everything I needed to know to get that process started. Yet something made me pause for a moment. I wanted to know who, exactly, I was dealing with.

That’s when I found out that my provider — the one who was on vacation — was a physician’s assistant, not an M.D. That didn’t matter to me so much — P.A.s are great, in my experience. But the doctor who was covering her wasn’t just a full-fledged M.D. – she was the chief M.D. for this practice. She was the boss, in other words.

So what was going on here? Had my P.A. violated some clinic policy in giving me the prescription in the first place? Would complaining about the doctor get the P.A. in trouble? Did I care?

I actually began to consider not saying anything to anyone.

That embarrasses me now, in retrospect. Me, the health and chronic pain blogger — the woman who preaches the need for patients being their own best advocate — I was considering letting this whole mess slide without comment.

What kind of hypocrite would I be if I remained silent?

So, yeah, I had to say something. But to whom? And how?

I did a little more research on the medical licensing board site. There, I discovered something that appalled me: doctors in my state could discharge patients — refuse to treat them altogether — if the patient lodged a formal complaint!

This may not be news to anyone but me. It certainly knocked me for a loop, and suddenly I had a much bigger concern. It had taken me months to find a practice with fees I could afford. There were very few remaining options for medical care, and given my conditions — scoliosis, degenerative disk disease, fibromyalgia — all incurable, all chronic, all very painful — I couldn’t risk losing access to a doctor.

Even one that thought I was an addict? It felt at that moment like an unsolvable problem.

Then a middle ground approach occurred to me. I brought up my email program and began to write. Using the chief doctor’s email address, which I found on the practice’s website, I composed an email to her.

In that email, I laid out my medical history pertaining to my chronic pain conditions. I discussed this blog. I told her where I stand on the intrusion of law enforcement into medical care decisions. As I wrote, I was vaguely aware of how important this email was — more important than any blog post or email I’ve ever written. This email was my last hope to get the care I desperately needed.

I’ve edited out the identifying information from that email, and turned it into a PDF, so I can share it with my readers. You can get that file here (PDF link). But I wanted to share one excerpt here — after recounting the facts of what happened (which you can read in the first post, here), I wrote:

I don’t know if you can appreciate the feeling of humiliation and frustration that naturally arises when you’re placed in such a position. I felt unjustly accused and labeled, without any justification for such treatment. You have never seen me professionally, nor do we have any sort of relationship. We have never even met. Yet, simply because I called and asked for a refill for a medication that I have taken without incident for over six years, you apparently assumed that I was a drug addict.

I have never experienced this before, in over ten years of being a chronic pain patient. If I handled it badly, I apologize. Yet I maintain that I have not been treated with dignity and respect, and I have given you absolutely no reason to question the legitimacy of my treatment protocol, of which medication is an important (though certainly not the only) part.

I have maintained a website devoted to patient advocacy in the chronic pain context for several years, most recently at http://traumadolls.com. Even so, I confess I feel some trepidation even writing this email to you, for fear you may retaliate by dropping me as a patient from your clinic’s family practice. This sort of chilling effect is not conducive to good patient/doctor relationships or to the practice of good medicine, as I’m sure you realize. I see from the clinic’s website you are the medical director for the clinic. In such a leadership position, I am sure you would want a patient to feel free to raise a legitimate concern over his or her medical care. Yet even I, with my educational opportunities and background, and with my professional interest in patient advocacy, thought long and hard about writing this email.

I re-read that email several times, and though I was generally pleased with it, I was still very nervous about rocking the boat with this clinic. So I decided to ask for the input of two people I trust, and sleep on it myself. The next morning, having received full-throated approval from both friends and feeling somewhat stronger emotionally myself, I sent the email.

Within a few hours, I received a telephone call from the clinic’s main number. It was Dr. C, another M.D. who was apparently Dr. A’s second in command. He told me Dr. A had asked him to deal with my situation and forwarded the email to him. Right off the bat, he apologized for the miscommunication and the way I’d been treated, which earned him some goodwill from me.

The very next thing he said was, “I’ve already called in another 21 pills for you. That should be enough to get you to your appointment with Ms. B.”

Phew. “Thank you,” I said. “I do appreciate this.”

“There’s just one thing, though,” he continued, sounding hesitant. “We went back and double-checked your medical records and you should have had enough tramadol from that refill to last to the end of the month.”

It was the 21st of April.

For the second time in 24 hours, I was flabbergasted. This time, however, words failed me. I sputtered and stammered something like “I don’t think that’s right…” as I frantically searched for a calendar and my old bottle of tramadol, to match up the dates.

Pretty quickly, I realized that my addled brain wasn’t up to the simple addition and multiplication tasks inherent in figuring this out. Somehow, I managed to catch my breath, calm down, and say somewhat intelligently, “I’m not sure what happened there, but I will certainly look into it immediately and discuss it with Ms. B next week.”

He said that was fine, and he apologized one more time before hanging up.

OK, I thought, trying to calm my racing heart, this is a very different scenario. My mind raced back through the last four weeks, trying to figure out what had happened, and when. I knew I hadn’t taken more than the prescribed dosage, so when I got to the bottom of the pill bottle, I just naturally assumed it had been four weeks. But after consulting the calendar and doing the math, I had to admit that Dr. C was right: I was off by about 21 pills.

What had happened? When had it happened? This was pretty much all I thought about for the next two days. I retraced my steps mentally, going all the way back through a very busy month in which I’d moved (yet again) and coped with all the stress that brings.

Was it possible I’d taken more tramadol than I was supposed to, or been careless with the pills and dropped them, somehow? That didn’t seem plausible for a few reasons. First and foremost, I knew from the past when my old doctor raised my dose that taking more than I was used to taking produced severe waves of nausea. I hadn’t experienced anything like that. Also, we weren’t talking about one or two pills — five whole days’ worth of tramadol was missing here. Over twenty pills. That, I would have noticed if it had been accidentally dropped or spilled.

After combing back through my memory of the preceding weeks, I could pinpoint two possible scenarios: one in which I’d walked out of my motel room the day before I moved so the maid could clean it, and the other on the day I’d picked up the refill, courtesy of a ride from a fellow motel resident whom I didn’t know very well. On the way back to the motel, we’d stopped at a fast food restaurant and I’d grabbed my wallet and walked in, leaving the driver, my purse, and the pills in the car. I was gone for about ten minutes.

So I was pretty sure I knew what had happened, but it didn’t make me feel any better. If I told the doctor or Ms. B, my P.A., what I suspected, would they wonder why I didn’t file a police report? Should I report it? I couldn’t prove anything at all had happened, and wasn’t it just as likely suspicion would fall on me? I mean, if someone is of the opinion I am an addict, is anything I do going to change their minds?

What a mess.

And it got even messier, if you can believe it, the next day. I had left Walgreens with 14 pills — enough for 3.5 days. My last dose from that batch would be Saturday morning. Dr. C had called me Thursday morning and assured me he’d already called in the prescription for the remaining pills (plus seven extra, which I figured it was best not to even mention). So, I figured, if I get to Walgreens Saturday morning, I’ll be good.

Something nagged at me Friday night, though. (I only wish it had nagged at me before 5 PM…) On a hunch, I called the local Walgreens just to reassure myself the prescription was ready.

You can hear this coming, right?

They had no record of any prescription for me having been called in during the preceding 48 hours.

I hemmed and hawed a bit, but ultimately realized there was only one thing I could do: call the clinic. Again. This time, of course, it was after hours. The on-call nurse took the call and, after checking some records, told me she thought my medication was a third pharmacy which was open on Saturday. I was pretty sure that Dr. C had called it into the clinic’s pharmacy, which was not open Saturdays, but I agreed to call the third pharmacy in the morning to check, all the time thinking to myself I was going to be making yet another call to the clinic in the morning.

And, in fact, there was no pharmacy by the name the nurse had given me in my area. So, I called the clinic again. This time, a very helpful triage nurse offered to check my records and call it in herself to Walgreens. She put me on hold for several minutes, but when she came back on the line, her voice was very different — stressed, apologetic.

She’d called the P.A. on call to verify she could simply transfer the prescription, and the P.A. had read her the riot act, apparently. Here’s what I heard from the apologetic triage nurse:

Um, she said to tell you that this line is for emergencies only, and this isn’t an emergency. She said to tell you that tramadol doesn’t cause withdrawal symptoms, but that she’ll try to take a look at your file if she can sometime today and maybe call you back.

How many problems can you spot in that quote? I see three:

  1. The after-hours line to the clinic is not for emergencies. That’s what 911 is for.
  2. This was an urgent issue, requiring immediate assistance. If I did not get the medication I needed, I would go through terrible physical withdrawal symptoms. On top of my already-compromised immune system? Seriously?
  3. Tramadol most certainly does cause withdrawal when a patient stops taking it abruptly.

I was so frustrated at this point, I almost started to cry. It was unfathomable to me that a physician’s assistant could be so blase and so uninformed. And, still, the undercurrent of accusation leaped out at me from the nurse’s repetition of the P.A.’s words: you’re an addict, aren’t you?

There was nothing more I could accomplish by continuing to talk to the nurse, I realized — her hands had been effectively tied. I simply stressed once more that withdrawal was imminent for me, and the P.A. or someone really needed to do something about this.

A few hours later, I got a call back. It was pretty much what I feared: “Sorry, can’t help you. Call on Monday.”

I was totally out of medication by now, and angry about it. Had I known this was going to happen, I could at least have reduced my dose or tapered off a little to minimize the impact somewhat.

Then my eyes fell on the laptop. Email worked pretty well the last time, I thought … so back to the computer I went. I sent another email to Dr. A and cc’d Dr. C, explaining what had happened and what I’d been told by the P.A. through the nurse.

I didn’t get a response via email, but I did get another phone call around 1 PM (about the time I usually take my second dose) from yet another triage nurse. Suspicion and attitude were fairly dripping from her voice. “Mmm-hmm,” she said repeatedly, as I reiterated my request, in that way that clearly communicates “I do not believe one word coming out of your mouth, lady.”

I just stopped, mid-sentence. I took a deep breath, and I said, “You know what? It’s clear to me that you’re not interested in listening or helping, so I’ll just reiterate this: I am not asking for more pills. I am asking for what was already called in to be transferred to the correct pharmacy. That’s all. Goodbye.”

An hour later, having heard nothing in reply either via phone or email, I tried calling the pharmacy.

My prescription was ready for pickup.

Tomorrow, I’ll wrap this up and discuss the lessons I learned from this horrible, humiliating experience.

 

 

 

This Doll’s Story: Part 1 – Doubting Doctors and Terminal Relationships

[Note from Annie: I know I promised this post over a week ago. Honestly, I wasn’t sure how to proceed. I was leery of putting this story “out there” because of the potential repercussions. That should make a little more sense after you’ve read the following.]

assorted pills of various colors on a blue backgroundIt finally happened to me.

After twelve years of coping with chronic pain, and for the first ten and a half of those years being blessed with a wonderful doctor who was a supportive member of Team Annie, I finally came head to head with the chronically pained’s worst fear: a suspicious doctor.

Only in my case, it was more like a suspicious team of providers. And it made me feel truly, totally crappy. And angry. Very, very angry.

Here’s what happened.

I became a client of a new practice about three months back, after I relocated to my new home. The clinic is a general practice, and its fees are based on a sliding scale (necessary due to the fact I’m uninsured).

At my initial visit, the provider gave me a one-month prescription for tramadol with a single refill, which I got thirty days after the first visit, without incident.

About a month ago, I realized I was getting close to the end of the bottle on the refill. I had about twelve pills left the Sunday I realized this, so I called the next day. I was told the phone lines were damaged by the construction crew building the new clinic, and I might want to call again the next day to make sure the message went through if I hadn’t heard anything.

I hadn’t, in fact, heard anything so Tuesday morning I called again. This time, I was directed to the triage nurse, who told me she’d get the message to the doctor who covering for my provider, who was on vacation. I heard nothing the rest of the day.

Wednesday morning, they finally called me back. The nurse delivered the message that the covering doctor “refused” to refill the prescription. I would need to see my provider. And she wasn’t coming back until the following week. I made the appointment for exactly one week later and then turned to the “in the meantime” problem.

I should say that I was a little tense at this point but wasn’t truly surprised at this development, nor was I really alarmed. I simply asked the nurse to ask the doctor for a one-week supply to get me through to the appointment I’d just made.

Let me interrupt with this observation: One thing is clear. The whole “nurse as relay messenger” system? Sucks. It’s inefficient and causes major problems, as will become clearer in a few paragraphs.

I waited several hours. No phone call. Complicating things for me at this point:

  • I was about to be out of pills altogether.
  • I had no readily-available transportation. My car wasn’t driveable and it would cost over $20 to get to the clinic in a cab. (As it turns out, there was public transportation available, but I didn’t know that at this point.)
  • I could get to a drugstore across the street, and could afford the cost of the medication there. But it required the assistance of a friend who had limited availability. I was about to lose my access to that ride, as well.

So, I called back twice. I told the nurse who took the call each time, briefly, about the transportation problems, as explanation for why it was crucial we get the issue resolved promptly. It was either “get the refill now” or “go through withdrawal.” Each time, I spoke to a different nurse and so had to go through the whole spiel all over again which is an incredibly inefficient way to communicate.

Another interruption: I am sure that long-time readers know the difference between addiction and dependence. For newcomers, I’ll be brief – addiction is an abnormal psychological condition, while dependence is a totally natural physical chemical reaction to long-term use of certain pain medication. Tramadol is not a narcotic, but it acts in some ways that are similar to some opiate derivatives. One of those similarities is that long-term patients who have become dependent on it will go through physical withdrawal symptoms when they suddenly cease taking it. The proper medical approach is to wean off gradually over time.

Ultimately, the clinic called back and asked what pharmacy I wanted them to use. I took this as a sign that the prescription was going to be called in as I had requested. I mean, I’m pretty sure that’s a reasonable interpretation, right?

I gave them the name of the drugstore I could get to (the first of two times I’d tell them this). I was able to get to the drugstore, thankfully, and I waited for the prescription. As I sat down in the lobby, it had been about 20 minutes since that last call, so I assumed I’d have no more than fifteen or so more minutes to wait.

An hour later, I finally called the clinic again. I was assured the covering doctor was going to call it in “to our pharmacy.” “No, no,” I said quickly, “remember, this is to go to Walgreens.”

Right, the nurse said. Walgreens. And you’ll get fourteen pills…

“No, no, remember, I take two pills twice a day. So that’s four pills a day. A week’s supply is 28.”

Ohhhh, the nurse said. I’m going to have to talk to the doctor …

Thirty minutes after that the pharmacist still hadn’t been called. I called back again to the clinic. This is what I heard:

Yes, I did speak to the doctor about that, and she said she’s not going to call in any more than fourteen. And by the way, are you sure you’re not getting this some place else?

At first, I had this split-second reaction of “no way I just heard what I thought I heard. Surely I made a mistake.” So I asked the nurse to repeat herself.

She did.

And — well, I’m a little embarrassed to admit this but I kind of lost it. Right there in the lobby of the Walgreens pharmacy. I know my voice rose, and I remember the words “malpractice” and “medical licensing board” came out of my mouth.

And I meant ’em, every single syllable.

I paid for my fourteen pills, and I went home, furious and incredibly offended. What on earth had given these people the right to treat me like an addict? They had never even met me. They had no reason to suspect that I was misusing prescription drugs. All I’d done was call in a refill on a medication I had been taking for over seven years without incident. And based on nothing more than that, I’d been labeled a probable addict.

At least, that’s what I thought at the time…

(The rest of the story will continue in tomorrow’s post.)

What’s the Difference Between Addiction and Dependence?

Image of Martini Glass Full of Colorful Pills

It seems like you can’t browse the web or flip through a paper or magazine these days without coming across another dire warning about the epidemic scourge of addiction to prescription pain pills.

One question nobody seems to be asking is this: Is it really that bad?

Nobody can really argue with a straight face that addiction to prescription pain medication doesn’t exist, or that it isn’t an increasingly occurring problem. But in the great debate playing out in the national media, I suspect that fear-mongering and sensationalism are being fed by a radical misunderstanding.

Put simply, I think a lot of media outlets, journalists, and anti-pain medication advocates are confusing addiction with dependence.

(NB: Yes, I’ve written about this before, but the issue is of such importance and complexity that it bears further discussion.)

Comparing Addiction and Dependence

The first thing to understand is this:

If a person is addicted, she is suffering from an abnormal physical & psychological disorder. If a person is merely dependent on medication, she is experiencing a normal physical response to the medication.

Another key difference between addiction and dependence is that an addict takes medication to achieve a “high,” whereas someone dependent on medication simply takes the medication to function.

Complicating the matter, however, is a set of behaviors that has been termed pseudo-addiction by some experts. It mimics addiction in some ways – a frantic, clock-watching anticipation of the next dose, for instance – but it is caused by the person’s experience of pain, possibly breakthrough pain or possibly pain that is not being adequately controlled by the prescribed medication.

Hallmarks of Addiction to Prescription Pain Medication

The following behaviors can indicate a potential addiction:

  • Taking pills more often than prescribed dose;
  • Taking medicine via an unorthodox method (i.e., crushing, snorting, injecting, etc.);
  • Going to a number of different pharmacies within the same time period;
  • Repeatedly refilling prescriptions before the medicine should have run out according to the label information (i.e., number of pills and frequency of dosage);
  • Doctor shopping;
  • Difficulties in socializing with others, where socialization came more easily before the medication usage began;
  • Increasing isolation from family, friends, and life activities previously enjoyed; and
  • Overall, a sense that the person’s life is in a downward projection, increasingly spinning out of control.

Comparing Drug Dependence to Addiction

It might sound bad – after all, who wants to be dependent on anything, let alone prescription pain medication? But dependence as a biological state is not inherently morally blameworthy as addiction is often viewed as being.

Dependence is simply the body’s natural acclimation to the drug.  It is probably more accurate to say that the body is dependent on the medication, rather than the person.

Some of the characteristic hallmarks of drug dependence, as contrasted with the hallmarks of addiction set forth above, are:

  • Medication taken as prescribed, both in amount and frequency;
  • Medication taken via prescribed method – i.e., no alteration of the physical form of the medication;
  • Patient may need an eventual increase in dosage, but compared to the addict’s self-administered increase, this increase is done under supervision of doctor and according to prescribed instructions;
  • Patient may exhibit anxiety in anticipation of next dose, but once pain is relieved, that anxiety goes away;
  • If pain is being managed, patient is able to function in her life activities and continue to socialize as before; and
  • Overall, a sense that the patient’s life is progressing in a positive direction, given the patient’s diagnosis and prognosis.

The Real Risk of Addiction

I can’t fault the growing numbers of chronic pain patients who express fear and repulsion at the thought of taking prescription pain medication. I was one of them, not that long ago. I completely bought into the hype that everyone got addicted, or could get addicted, to a long-term use of any prescription pain medication.

But that’s simply not true. The studies that have been done on addiction in chronic pain patients do not bear out the fear-mongering we see in our headlines every day. One study looked at over 24,000 chronic pain patients who were administered opioid medication. The number of addicts that resulted? Seven.

Not seven percent. Seven addicts. Out of 24,000.

Yes, I believe the crisis of prescription pain abuse has been somewhat overstated. And I believe that this unfortunate slant has resulted in a climate of fear that in turn results in fewer and fewer chronic pain patients being treated assertively for their pain.

Look, I am all for exploring conservative, non-prescription pain relief methods first. I am also completely in favor of looking at alternative treatments for chronic pain symptoms.

But when you’re in so much pain that you cannot function in your life, I believe you have the right to access any treatment that can restore that function, and that includes prescription pain medication.

It’s true that prescription pain medication, especially in chronic pain conditions that are poorly understood and for which there are currently no cures, will not address the root cause of the illness. Again, I’m all for getting to the root of the problem.

And I agree that most chronic pain conditions are rooted in a complex machinery that combines lifestyle, anatomical, biological, chemical, environmental, and, yes, emotional factors, and thus one pill isn’t going to solve the problem.

My point is that none of us is required to suffer needlessly with pain while we explore that machinery and get to the root of the problem, especially not on the basis of some exaggerated claims about addiction risk.

Bottom line: Know the facts, educate yourself, and make the best choice for you.

 

Trauma Doll Thursday: To Medicate or Not to Medicate

 

Broken Doll

The 411 on the Rx

It’s not a question you should ignore, but it’s also not a question to take lightly. Medication is serious business. And once you start, you sometimes can’t just stop without serious physical consequences. But you also have to give a new medication sufficient time to work before throwing in the chemical towel and moving on to something else, or another medication.

It’s no secret—at least to anyone who’s been reading this blog more than a day—that I do not exactly share the mainstream media’s freakout over pain medication. To the contrary, I heartily encourage anything that gives a chronically pained sister or brother the kind of relief that allows us to—y’know, function. If that’s a weekly massage and a few Tylenol ™ — fabulous. (And go read some other blog because chances are, you’re just either accident prone or getting older, not chronically pained.)

And if that’s a daily dose of little white pills, then that’s fabulous, too. (As long as you take it as directed and get it legally—i.e., from your doc.)

It’s about doing what works, whatever works, as long as it works. And when it stops working? Move on to the next thing.

Are You Ready to Dose Up?

So, how can you tell when it’s time to talk to your doctor, as the commercials say? Well, there are a few questions you can ask yourself, but be warned: this list is purely from my own perspective and experiences. Ultimately, the decision is intensely personal and you should trust your gut. (Unless, of course, it’s your gut that’s causing the CP.)

Have you exhausted all non-medication alternatives that fit your lifestyle?

Look, as much as I’m a fan of medication because of what it’s done for me, it isn’t for everyone, and there are some downsides to turning to prescription drugs too soon. Drugs can and do reduce the pain so you can function again, but they also can mask the source of the symptoms. Turning to drugs too soon after diagnosis or onset of symptoms can sometimes lead us to the false conclusion that the problem is solved.

Explore the conservative measures first—but don’t make the mistake of thinking you have to exhaust ALL conservative measures. If a suggested regimen has you turning cartwheels to down 40 supplements according to a complicated schedule and radically revising your diet to boot, and that’s not for you, don’t be afraid to say “no.” Quality of life is a complex calculation, folks. Pain or lack of it is an important facet, but it’s only one of many.

Have you done your research?

Do you know what your options are? Check out the more reliable medical websites and find out. Look at the side effects and the frequency and risk of each. Check out contraindications.  And then throw your hands up in confusion because none of it makes any sense.

Yeah, you’ll get that on medical sites. That’s OK. Don’t let them make you feel stupid because you can’t understand every eighth word or insane because they all conflict with each other.

And then ignore the ones that confuse addiction with dependence.

And all the ones that preach about how eeevil prescription pain meds are, no exceptions.

And the ones that say all you need is a bajillion supplements—or, worse, just one (patent pending, completely proprietary, insanely expensive) supplement that’s only available at that site.

Yeah, it’s a jungle out there. Arm yourself with objective information wherever possible, and write out your questions.

Are you prepared to put in the time?

God willing, you’ll get lucky on the first pitch and that prescription will hit it out of the park. But that doesn’t happen often. In my own case, lucky me, I rode the Bextra carousel for a while (and then they pulled it from the market) before I found tramadol.

In any case, you can expect that it will take several weeks before you and your doc find the right prescription in the right dosage. In the meantime, you’ve got to take the medication as prescribed, and keep a log of any side effects.  You also have to continue doing all the other things that foster good health—it’s not a case of “one pill and I’m done.” So those nutritional improvements, the nightly “sleep hygiene” routine, the daily gentle exercise—keep ‘em around.

Are you ready for the potential fallout?

And now the unpleasant, cold, hard truth: people can be idiots. Especially about prescription pain medication.

You may have to educate your significant other, family members, and friends. Hell, you might have to educate your doctor. There could be unwanted effects on your job performance, especially as you work out the dosage. (I could tell you a funny story about me and tramadol in the early days…and I will, in the next Trauma Doll post.)

Bottom Line

If you know in your heart that whatever you’re doing right now isn’t giving you the level of functionality you need to live your life, then it might be time to explore medication. Do it with open eyes and go in armed to the teeth. Be prepared for a fight but don’t anticipate one. Enlist your doctor as a team member, not some authority figure to whom you owe obedience. And be a patient patient—it takes some time to get it right, so don’t give up too quickly!

Actavis Announces a Voluntary Recall of Transdermal Fentanyl 25 mcg (UPDATED)

2D structure of fentanyl
Image via Wikipedia

UPDATE (10/28/2010): Was just alerted to the following additional information provided by Actavis, the drug manufacturer involved in this voluntary recall. This was included in an email update from the American Pain Foundation:

“We have no interest in adding to the discomfort of patients who are using this product to help alleviate moderate to severe pain however, and therefore, as an accommodation to consumers/patients, if they have an Actavis 25 mcg/h Fentanyl patch, we will work with them on returning the product”, was included in the correspondence from Gerard Farrell of Actavis Corporate Communications.

Individuals who have these lots in their possession and want to return their 25 mcg/h Fentanyl patch can call # 877-422-7452 and an Actavis representative will assist them with their return.  They have also posted helpful information to their website: www.actavis.us. Look at the lower right corner of the home page for “Fentanyl Recall Information.”

Reminder: For a listing of the affected lots, visit the Actavis website: http://www.actavis.us/en/Fentanyl_Recall.htm

Just got the following in my inbox courtesy of the American Pain Foundation. Read carefully, and follow the instructions if you’re affected by this:

Actavis, a generic drug manufacturer, issued a voluntary recall of 18 lots of their 25 mcg Fentanyl patch on October 21, 2010. One lot was found to be defective, causing the medication to release too quickly into the bloodstream. This lot, along with 17 others, has been recalled. According to Actavis, the Food and Drug Administration (FDA) and wholesale and retail pharmacies have been notified.

For a listing of the affected lots, visit the Actavis website: http://www.actavis.us/en/Fentanyl_Recall.htm

Regretfully, the company has failed to require the public to return their affected lots. As of October 25, the company’s website states, “Consumers are not being asked to return any product as this issue does not pose a threat of a serious injury or death.” Rapid absorption could lead to unintentional side effects such as increased sedation, nausea, vomiting and slowed breathing. The American Pain Foundation strongly urges Actavis to reconsider its first advisory and extend the recall to consumers.

Individuals who have these lots in their possession should:

  • Contact Actavis and demand a consumer recall and proper replacement. According to the FDA press release, Actavis has operators available to help customers, health professionals and consumers with the following information:
    • Medical Issue/Adverse Event/Product Questions:  1-877-422-7452 (24 hours/day, 7 days/week)
    • Return/Reimbursement Questions:  1-888-896-4562 (24 hours/day, 7 days/week)
  • Contact the FDA and report your experience. Adverse reactions or quality problems experienced with the use of this product may be reported to the FDA’s MedWatch Adverse Event Reporting program either online, by regular mail or by fax. Online: www.fda.gov/medwatch/report.htm
  • Contact the pharmacy where this medication was filled and report that you are in possession of an affected lot.
  • Notify the health care provider who writes your pain medicine prescriptions and ask for guidance.
  • Notify your insurance provider should a new prescription be written, so that it will be covered.
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