Rheumatic autoimmune disease in particular has a habit of presenting symptoms that are unpredictable. They can sneak up and take you to the ground unexpectedly, and mercilessly. (For some people that is quite literal, not just metaphorical.) I asked some of my friends for input on this because I’ve been mulling the topic over for a few days now, and I wanted to hear perspectives. I am (anonymously) including some excerpts from that conversation here. I hear them echoing my own experiences and frustrations.
The typical patient – anyone with Lupus, RA, Fibromyalgia, Lyme disease, Cushings, MS, Sickle Cell, Dysautonomia, Myofascial Pain, Chronic Fatigue, any Chronic pain… is always dealing with symptoms. The amount, degree, and intensity varies, but we are nearly always symptomatic. With a disease like Lupus, we don’t even have a true remission. We can achieve clinical quiescence but to be totally symptom-free is not really a…
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The new standard in pain medication dispense seems to be undergoing blueprint repetition from state to state now. Let me preface what I’m about to say with the statement that I do not object to having regulations to help reduce the unlawful abuse of narcotic medications. I also understand that there are addicts that have to be monitored. I don’t need a reminder of that because like everyone else in the country, I’m quite well informed about it. That’s not up for debate.
I am the dream patient any Dr should WISH they had. I’m not afraid to say that. I am educated, self-sufficient, honest, proactive, and disciplined. I DO the things that I say I will and need to, and work very hard to take care of this body that I live in. I have never smoked a day in my life, and have never even tried a recreational drug – not even once. I had a brief youthful bout of party drinking and outgrew it in short order. I am a responsible, intelligent, cautious adult that does however happen to have more than one debilitating and painful diseases that are incurable. I always seek the least radical approach to treatment, the least damaging, the lowest risks. I inform myself about what my medical conditions are, what my medications are and how they work, and the things I should and should not do for managing it. I am diligent about proper dosing, about follow up visits, and about performing prescribed therapy exercises as instructed. I have never displayed any behavior that should bring my intentions or actions into question. Not once.
They like to say this now, like it will make you less offended: “It’s not personal.” You know what? I heard it. I understand the sentence. It is not however appropriate to tell a patient that has just gone from a hard-earned trusting relationship with their primary care physician to one of monitored suspicion that it’s “not personal”. It’s VERY personal. I am allowed to have a feeling about the situation.
To state a comparison.. I recently read an article that all but said not to ever diagnose someone with SLE. It was leaning so heavily on diagnosing Fibromyalgia instead that I was really taken aback. It stated that ANA testing should be reserved only for those that display other very strong indicators that an autoimmune disease is present. (So we wait till it’s critical instead of treating early?!) When it comes to this drug testing however, you don’t have to display any strong indications of being an abuser. It’s arbitrary and disregards you as an individual. No looking at records, no personal evaluation. Just here, pee in a cup, sign this, and we’re making you run back and forth for small portions of this medication now. So it takes great provocation to get testing and treatments for your needs, and no provocation to get testing for something criminal that you didn’t do. That makes about as much sense as screen doors on a submarine.
I’ll put it out there because I have nothing to hide. I have some pretty severe pain at times, and if anything I under treat because I am so concerned with not toxifying my system. The last time I filled this pain med (which was only Tylenol/codeine), was February 2011 before I even had this Dr. It was a one month supply. It took me a year to go through most of it. I just had major surgery February of this year, and was prescribed a stronger medication by my surgeon with 2 refills. If I had refilled it 3 days ago, no one would have said a word. Because of this “pain management contract” that was whipped out at my primary’s office however, I am now being told that I am not allowed to refill what is legally prescribed to me on this bottle. I have to “pick one”. The situation is this.. I either under treat, because there will be times when my pain is worse and I need something stronger (I’m still in physical therapy), or I over treat and only have the medication that is a total knock-down when I don’t need something that powerful. If I am considered intelligent enough to handle a bottle of pills and know that I am supposed to take 1 every X number of hours, then I am intelligent enough to know if I switch to the other med I do the same thing. It’s like calling me a complete idiot. The nurse kept repeating to me that I should not be taking them both together. I said I don’t take them TOGETHER, hello? If this man is set up to be a “pain management Dr” of any sort, then he should understand what breakthrough pain is! No, he says. One or the other. If I’m traveling, if it’s the weekend, if I am not at home or whatever time of the day or night, if I need anything else for pain I am to call my nanny now and ask may I please have something else. Furthermore, if I lost my meds I would not be given a replacement. So if something happens to my prescription, “screw you”. I am not allowed to obtain pain medication from any other physician or fill it at any other pharmacy than that listed. So I am getting from this that if I have surgery again, my surgeon is not allowed to prescribe post-op pain medication for my surgical pain. REALLY???? Does he have to get permission to knock me out, or give me IV Dilaudid afterwards so I don’t scream and hit people when I wake up???!!!! What the HELL? If I’m in a car accident, and have to go to the ER somewhere am I in violation of my contract if they treat me? There is no exemptive provision in this contract for such a situation! What idiot writes these things?
I have what is called intractable pain. It’s not going away. If they come up with a cure for autoimmune diseases, I’ll be the first one to throw out my medication, believe me!
I’ve heard all the arguments in favor. There are just as many valid arguments on the other side of this issue. If someone is going to unlawfully use a medication, they will continue to do so in one way or another. Criminals do not care what laws you write about a crime. Criminals won’t sit around a Dr’s office waiting for assistance. They’ll get it somewhere else. In the mean time, law-abiding citizens like myself are humiliating, stigmatized, and treated like a file rather than a human. So how am I supposed to be okay with this? Unless YOU are the one being told you have a nanny and have to submit to random drug screens, and bring your bottle so they can count your pills, you cannot possibly understand what it’s like. I’ve had enough of people NOT in my situation telling me that they are okay with it. You do it, then get back to me. Let me know how you feel when you have a script for 2 x a day on a med that used to be every 4 hrs, and you have a bad pain day and you’re short… and the pharmacy could call the police because you tried to refill 2 days early. In Arizona a woman was SHOT AND KILLED in a drive-thru pharmacy for trying to refill a legally prescribed medication in that exact scenario. Tell me how this is not overkill. Tell me why a law-abiding citizen that has to be in fear of committing an innocent error is not supposed to feel criminalized.
I read of a case where someone was legally prescribed and using morphine for horrific injuries, and as can happen with morphine sometimes they tested falsely negative. They were promptly accused of selling their medication rather than taking it, and thrown out of the “program”.
In Arizona, in fact, if you are thrown out of such a program there isn’t a Dr in the state that will write you a script for any pain medication. So if you are ill with severe pain, you will be left to suffer even if it is due to a lab error, clerical error, or misreading a bottle. If you refuse to sign the contract, you will be labeled as “noncompliant” and likely lose all medical care – the primary will refuse to treat anything. Even without the Hippocratic Oath (which is not a requirement), there WERE laws governing such things… humane and ethical prevention of suffering. Where in the hell did they go????? Animals that are likely to be gassed to death have better rights for treatment. Old ladies in wheelchairs have to submit urine samples to make sure they’re not tokin’ it up or selling their drugs on the street. Wow. Really?
I’ll be really blunt about this, because if anyone reading this hasn’t realized it yet there is a specific reason this is happening that NO ONE is willing to say out loud. I will. Medical marijuana.
1. If you are caught with it in your system, even legally prescribed, you will violate your contract and be dismissed.
2. No pain management clinic or Dr will prescribe or dispense medical marijuana.
Think that through. This is all about preventing people from getting reasonable medical care while at the same time utilizing a LEGALIZED METHOD for pain treatment, because a bunch of people find it too controversial. SHAME ON ALL OF THEM. In the process, the rest of us that just want a simple med to make life livable are being treated like criminals.
This “system” is a cluster f***. Ten years of refusing one med after another offered to me like candy, and now that I actually NEED it, I’m restricted like a 6 yr old with half a brain. So excuse me if I am angry about it. I can find a few thousand other citizens that feel the same way. Search the web and see. Patients need to stand up for their rights to dignity and reasonable quality of life. My situation is NOT giving me that at present. So if you’re as pissed off as I am, speak up! Call congressmen, post on the web, tell your friends, object to administration at your med facility if there is a patient advocate that will keep you safe from retaliatory reactions. Don’t be a sheep.
If anyone is thinking “Well you have a choice, you don’t have to sign it.” It is under duress if you know that you will not receive care if you do not sign it. It is using your disease/pain as blackmail to get you to comply. If ordinary tylenol would treat my pain, I would be more than happy to give up having a prescription forever. If you need pain relief in order to function, you do not have a choice.
Oh and one more thing… the excuse was that both medications have acetaminophen. Yes, and there is more in taking two of the milder med than one of the stronger one. I’m well aware of the need to protect my liver. Stop feeding me manure.