Archive for the ‘opiates’ Category

image

Would love to credit this drawing – but it was a repost in a FB forum – would live to find out the brilliant would that drew this to give proper credit….if anyone knows, please let me know.

Why and I returning to my blog??? Stay tuned for these posts that will explain…

I had a huge disaster over the last few weeks that has totally given a new definition and meaning to the title of my my blog, “MisdiagnosedMe.”
I have had to file complaints about violations of my patient rights (hello New England Baptist Hospital, UMASS Memorial…)….some pretty crappy things have happened to me and I can no longer just roll over, whine a bit about it on Facebook and try to forget it.. Misinformation purposely placed in a medical record is a serious violation of patient rights and can effect the health of the patient – and this info gets transferred fast throughout the health care systems…mine went to 5 different organizations in 4 days! Think of the damage that caould cause. Think of the damage it DID cause…we can no longer keep quiet about these things. Time to stop whining in forums and take real action.
Doctors are writing parody songs about people that are on pain meds for chronic illnesses – they have officially reached the bottom of the barrel of disparaging patients. This has to be shared. How is this OK?
I had a considerable amount of time after a recent serious surgery that let me examine the forum-universe of many chronic illnesses. They are all alike. All claim symptoms belong to them and their zebra illness – how is this possible when all these symptoms are part of X, or is it Z, or is it Q? I have done a brief sociological analysis of this and may have a answer or two.
I want to explore the connections between symptoms of EDS – symptoms that overlap with dysautonomia, autoimmune disorders, skin disorders, etc. etc. I would like to discern if ther is a connection – perhaps we all have just ONE zebra illness, not 4. I am hoping that my analysis (don’t with the help of anonymous survey programs) may Help illuminate this? Maybe even get someone’s attention?
And, most of all I want to hone my writing skills and make use of my experience and education, so perhaps someone out there with some “brand recognition” will notice me and recognize what I have to offer the chronic illness community. Its seems as if the harder and faster I dance, the less I am am noticed and/or heard.
Dammit. This time, I am going to be heard. Even if I have to write my own parody song about doctors that enjoy disparaging their patients, nurses that mock and then abandon their patients as they are stuck on a commode hours after a a major surgery, and hospitalists a that make up new diagnoses to include on your chart, disrespect all prior doctors’ and diagnoses and then make jokes about it right outside the door of the patients room. I promise it will be catchy.

Comments?

I haven’t written much in awhile – I am dealing with a new condition, unrelated to my SI pain, that saps my energy and drops my blood pressure dangerously low. While laying in the hospital with this new issue – in front of me, on the information board in my room, was the all-too-familiar pain scale. You know the one – sad face =10 (“worst pain imaginable”) up to happy face = 0 (“no pain”). I began to really think about how pain clinics set up their patient to fail – fail to reach the impossible, lofty standards that are set by people that have never experienced a day of mind-numbing pain in their lives.

For example, the pain clinic I currently use (the one I blogged about previously where a med management nurse treated me in such a nasty and humiliating manner) has their own version of this pain scale. According to their scale, few people can EVER reach a 10. A 5 is “moderate pain that cannot be ignored for more than a few minutes.” A 3 is “distracting, but you get used to it.” Each scale step has a 2-line description of the experience you will have at that level. I have shared this pain scale with several medical professionals, many of whom also have pain-related practices. Their responses? “Unrealistic.” “Deviates from the industry norms quite a bit.” “What? No one likely to be a 10? Obviously a man wrote these that never gave birth.” These are responses from medical professionals, not patients.

By having a pain scale that is skewed from the industry standards, they are minimizing their patients experience of pain. By all estimates, they are lowering the level of pain being perceived by the patient by at least two steps. Minimizing pain is something women have historically dealt with – remember how menstrual cramps were “all in the head?” (If you are my age, maybe you do…) Undertreatment of pain is a national concern,See, TIME, 6/29/2011) for just one article – there are many. Why do they want to contribute to it?

All pain clinics give their patients “contracts” to sign. Most often, the contracts deal mainly with the exclusivity of the patient-prescriber relationship. The clinic wants the patient to sign the document stating they will not obtain prescriptions for pain medications from any other health care provider or facility. This is the clinic’s attempt to curtail “doctor shopping” by those idiots that ruin pain
management care for the rest of us. However, some clinics go even further with their contracts and ask their patients to do things which effectually set them up for failure. For example, this same clinc I referred to earlier, has a several page contract. Not only is the usual ant-doctor shopping language in it, but the following (paraphrased) items are as well:

1. actively pursue non-pharmacological ways of relieving pain such as ice heat, exercise, meditation, etc.
2. you MUST meet with a behavioral health counselor and follow their recommendations.
3. your condition MUST improve.
4. you must store your medications in a lockbox.
5. If you need to take medication for breakthrough medication, you MUST call your doctor first.

These may not seem bizarre at first, but if you have a condition that involves pain, then maybe you will see the crazy in them before I explain…

1. This isn’t bad advice, however, when you do all the “non-pharmacological” interventions for your pain before you choose your pain medicine (which, in most cases isn’t practical first of all), it takes hours. Then, when you are interrogated by the not-so-friendly med management nurse about how much time you spend thinking about and doing things for your pain – you are automatically SCREWED. For example, I wake up, in pain. These are the things I do to manage this pain: i do stretches for my psi as and hip flexors, attach my IF unit to my SI area and start the 1st cycle, grab an ice pack and strap it around my back, lie down with my meditation recordings for 30-60 minutes. Start my IF unit for a 2d cycle. Remove the IF pads, attach a Tiger Balm patch and/or a Flector patch to the area. Stretch again. Ice again. Get the idea??? So am I “obsessing” or am I following their directive? (Hint: I’ve been told I’m obsessing…you can’t win at this game they play!)

2. I’ve seen well over 20 “behavioral health counselors” in my 48 years. Sure, i’ll listen to see what they have to say, as I know the game – i have a degree in psychology and sociology, so I do keep an open mind that someone may offer up something new I haven’t seen or heard if before. In this case, nope. Saw two counselors. Surprise! I’m not an addict! (Figuring this out was the focus of the interrogations…sad). These places really have to stop assuming that the greater number of people they encounter will be drug-seekers and addicts. Even the TIME magazine article I referenced above included this quote from the Institute of Medicine’s report on pain in the U.S.,

“the majority of people with pain use their prescription drugs properly, are not a source of misuse, and should not be stigmatized or denied access because of the misdeeds or carelessness of others.”

3. REALLY? I’ll just imagine all those people with pain that will not ever go away chiming in here. The contract states if you don’t improve you can be removed from the program. How nice of them! Isn’t this place supposed to be “pain management?” I don’t remember seeing anything about “pain eradication.” What a warm, friendly, comforting feeling I get from this contract, don’t you? and these are only a few of the many clauses in their contract of joy! (Ok, enough sarcasm, Lori…)

4. This is in the contract to keep the medications out of the hands of potential thieves such as friends, family members and kids. I laughed OUT LOUD when I read this one in the office – a lock box?? What BETTER way to attract the attention of anyone – “hey, theres something valuable in here!” They even give you a listing where you can buy them – you’ve all seen these – the flimsy things they find in the abandoned storage lockers on the TV show, “Storage Wars?” Yuuuuup, for around $18 – $30 you can get a “lock box” in which you store all of your drugs, so anyone inclined to steal things of value, wherever you may keep it, will be gosh darn sure to grab that box first!! Have these people ever watched TV? Do they know how insanely easy it is to break open these boxes? Think about it just for a moment – you are a thug and you steal things – you see a lock box in a car, in someone”s house, wherever – do you take it???? OF COURSE!!!!!! (I’m a former police officer, so I know firsthand what criminals – or any opportunist -is likely to grab. But really, this one should be obvious to a 6 yr old!). The funniest part of this contract item was you had to bring it in to be “certified” by the nurse!

5. I showed my wonderful PCP this item in the contract. His response (paraphrased) was essentially, “if a patient of mine I’d that, they wouldn’t be my patient much longer.” I mean, how stupid do they think we are? If they don’t trust a patient to know when and how to take medicine, then they shouldn’t be prescribing it to them in the first place, a problem identified in a recent Medscape article addressing improper prescribing of pain medicines in the US.

I seems pretty clear to me that the problem with pain medications originates with the doctor that chooses to prescribe them to a questionable patient, not with a patient that needs pain control. Reform of prescribing guidelines needs to take place so the bony finger of criminalization is pointed at the prescriber, not the patient. There are plenty of screening tools (see, http://www.painEDU.org, for examples) doctors that lack intuition can use to cull out the drug-seekers from their patients in true distress.

Why do I go to this pain clinic? I was deemed “inappropriate” for their med management program, which is fine with me, as my PCP still prescribes my medications. He knows me and trusts me and that is paramount. The docs at this pain center are top notch – really. They have honed in on my pain generators in my SI and have reduced my pain (not completely, but some is better than none at all). It just angers me that the med management program here, as with other pain clinics I have visited and read about, continue to treat patients poorly and criminalize their pain, often because they don’t have a neat, easily diagnosable pain issue (like me!).

I could quote Medscape articles here as well that talk about the battle between treating patients and avoiding drug-seekers, but I won’t bore you (Plus, I cannot link them as Medscape is a subscription-only service, but its free!). This matter is currently trending amongst physicians in the US and Europe, which is a good thing, and I continue to follow it closely. Even though I hope to off opiate medication within the next several months, I will continue to use my experience to advocate for people with legitimate conditions that get treated as poorly as I have been treated, simply because we experience pain that the usual, non-drug treatment doesn’t seem to help.