Intractable Pain: The Patient’s Guide to Medication Safety

30 Dec

by Heather Grace, IPJ Staff Writer

The life of a a person with chronic or Interactable pain can be incredibly challenging. Whether you have Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome, Trigeminal Neuralgia, Central Pain Syndrome, Adhesive Arachnoiditis or any similar illness, there are a lot of important issues on your plate. Policy-makers, physicians, insurers, and even the media, raise a whole host of concerns for persistent pain sufferers. It’s easy to let important things like medication safety slip to the bottom of your “To Do” list. The fact is, there are many precautions you can take, in order to make yourself–and your medications–safer. We’ve all heard the horror stories. None of us wants to feel as though we need to be looking over our shoulder. Why not be better prepared for common situations? This article should help you do just that! Let’s begin…

Strengthening Safety in the Doctor-Patient Relationship

Your physician’s most important role is ensuring your have effective pain management. However, medication safety also begins at the doctor’s office. My doctor asks me to sign a Prescription Agreement form each year. By doing so, he has a document that states very simply which pharmacy I go to for my medication, their address and phone number. At the bottom of this form, I am asked to agree to go to this pharmacy, and no others, for my pain medication. If for any reason my pharmacy changes, I am also asked to inform my physician.

Every pain management doctor should have such an agreement in place. If any issues arise, the office has easy access to where a patient’s medications are handled. Additionally, as of 2010, physicians can also submit prescriptions to pharmacies electronically–even prescriptions for pain medications. The prescription agreement protects the physician, and may also help legitimize the patient’s need for prescription pain medication. However, to protect pain sufferers, it’s probably best to take this idea one step further.

For a patient’s protection, an additional form should be generated–and updated–yearly, at the doctor’s office. A Pain Patient Diagnosis form is vital. This should include the date, patient’s name, how long they’ve been treated for Intractable Pain, and should also include an updated list of diagnoses. Additionally, it should contain a statement such as ” I, Heather Grace, have reviewed and agree to abide by all rules set forth by my pain management physician, Dr. X. I believe my condition(s), listed above, are permanent and incurable. I wish to be treated by Dr. X, for Intractable Pain, and understand that my treatment involves the responsible use of all medication(s) prescribed to me, as part of my pain management treatment plan.” The Pain Patient Diagnosis form, signed by both doctor and patient, is a huge step toward protecting both parties, legally.

For logistical reasons, it would be best to combine these two forms, into a single document, entitled something like “Pain Patient Diagnostic & Treatment Agreement 2011.” Why not bring this up with your physician, if they aren’t already doing something like this? Updated yearly, such a document should be kept on the patient at all times. For those with implanted medical devices, be sure this is noted on the form. The more protection you have, when dealing with the authorities or TSA agents, the better!

This sort of information is priceless, when it comes to your safety as a pain patient. As soon as you receive these sorts of documents, make copies! If at all possible, keep a copy in your wallet and purse; also keep a copy in your car. For those who do not drive, ask your caregiver or loved one to keep a copy in their car, on your behalf. Make extra copies for when you travel. Ensure you have extras stored somewhere safe, in case the originals are misplaced.

Strengthening Safety at The Pharmacy

In addition to keeping a copy of your diagnostic-treatment documents in your car, provide a copy to your pharmacy each year. This will make them feel safer, providing you with your opioid medications. Then, each month when you pick up your new supply of medication, take an additional step: save pharmacy’s information sheets, on each medication. Place all of these, as well as the receipt, in your glove compartment. Include the information from your doctor regarding your diagnosis, and you’re prepared for whatever comes your way! Be sure to switch out your medication information, monthly, so that the most recent prescription information is always on hand. If you are ever pulled over by the authorities, it’s easy to prove the medications you have with you are indeed yours, and were legitimately prescribed, to you, as a pain patient.

As a pain patient, I believe this makes it safer to carry my medication, in whatever container I choose. Let’s face it, anyone with a serious illness has several prescriptions. Carrying all of the original containers, provided by the pharmacy, can prove exceedingly difficult. When you’re just going out for a couple of hours, why bring more than a day’s worth of medication with you? Because the medication is clearly identified on these prescription sheets, anyone can easily identify each medication by color, the words printed on them, etc. Whether they are in a pill sorter or small pill container, there will be no doubt what medications you have with you, what they are prescribed for, and that they legally belong to you, a pain patient being treated for a legitimate illness. Of course, the laws vary from state to state, and it is always best to carry your medications in the original containers, provided by the pharmacy, whenever possible.

Coming and Going. Pharmacies are everywhere these days. Most are brightly lit and they appear to be a safe place to be. However, more and more, pharmacies are being robbed by people desperate for prescription drugs. Many are addicts; some are dealers. The street value of many medications, unfortunately, would astound most people. When you go to get your medication, just be cautious. If anything appears out of place, don’t go in. Wait, and even call the authorities if you suspect a robbery in progress.

When you leave the pharmacy, be even more cautious. Be aware of your surroundings. Don’t be fiddling with your purse to find your keys or reviewing the prescription info, with your head down, as you walk to your car. If you want to double-check your meds, do it in the pharmacy. It’s also best to get your keys out, before you head for the car. It’s these little touches can mean a big difference to your safety! Be extra careful if, when inside, either you or the pharmacist mentioned the names of the medications outloud. It’s best to have a good rapport with your pharmacist, and feel comfortable telling them the things that matter most to you. Before the issue arises, instruct your pharmacist that you prefer for them to show you the names of the medications you are picking up silently–by allowing you to review the pharmacy’s drug information sheets. This keeps you safer in a place that is increasingly becoming a target of would-be thieves.

Strengthening Safety at Home

We all know how vital opioid medication is to pain management in serious conditions like RSD/CRPS. We also know how dangerous pain medication can be, in the wrong hands. It’s a sad state of affairs that we have to worry about our medication, in our own homes, but it’s a fact of life these days.

There’s a senior community not far from where I live that’s had multiple break-ins. Why? Maybe it’s because there’s a natural assumption that older people experience more pain that the average person and thus, they’re more likely to be prescribed pain medication. Vicodin, Soma, Tylenol with Codeine and the like have been stolen from the seniors’ homes, with little to nothing else being disturbed. For an Intractable Pain patient, such a theft could be life-threatening. A chronic pain sufferer may take 30 or so Vicodin per month. Intractable Pain patients generally have stronger medication, often in large quantities. So, how do we keep our meds out of the wrong hands?

  • Know When/Who To Share Your Information With.
    Though you may feel it is best to share your health information with most service people, in an effort to speed things up, be cautious. Especially when the people you are speaking with have access to your address and may even handle your keys, it may be best to be vague, if you tell them anything. For instance, whenever your car is going to be serviced, give only your car keys to the technician. This sort of thing never seemed like a real potential for problems, but on several occasions, I’ve told my people at my local car dealership that I wasn’t able to wait for the car, because I was in so much pain. All it takes is one crafty person overhearing your conversation to act–and you could be targeted. Even when you are speaking with someone you know and trust, it’s a good idea to be aware of your surroundings, and anyone who might overhear what you’re saying. For instance, it might be best not to discuss the particulars of your doctor’s appointment on the phone to a friend, while a locksmith is installing new locks on the front door of your home. Especially in today’s world, exercising caution is a good practice.
  • Playing It Safe.
    Many patients I know, including yours truly, have safes. The safe I purchased was inexpensive and it’s large enough to hold a month’s medications, plus important paperwork. Whenever possible, a wall or floor safe is a patient’s best bet. Many excellent safes are available for under $350. You can get an idea of the cost of a good safe online; start by searching for inexpensive floor safes. If you know how to install your safe, you can save on installation as well. Ask a handy friend–anyone you know with their own set of tools. These safes come with directions; anyone that’s handy should be able to install one relatively easily.

    For those wanting extra protection, an alarm system is an excellent idea. Some are available without a monthly monitoring plan. For instance, a web site called x10.com has a 19-piece system for under $100. No monitoring plan is necessary–the system calls you if any of the 8 door & window sensors or 2 motion detectors are activated. It sounds like an excellent plan, though I cannot vouch for it’s effectiveness. Similar systems are sold at stores like Fry’s Electronics, and other electronics stores. However, any of the big companies with alarm systems that you see advertising all over do not have these sort of self-monitoring systems. Most require the monitoring for $30 per month, and up. Find the alarm that works best, for your situation.

    There are some pain sufferers I know who have built-in security systems, in the form of a large dog. If you have a service animal, chances are, the presence of a large dog is enough to frighten off would-be thieves. What I’ve always heard is, it’s not about total protection–it’s about making your home a less likely target. Many thieves merely want an easy place to break into. Statistics show that they commonly look for: (1) Easy access to the property combined with low visibility, (2) A Home that is/appears to be unoccupied, and (3) something worth stealing. Of course, there are a lot of ways to combat these issues. Read more about securing your home now.

  • Out of Sight.
    Because our main concern for possible theft are our medications, at home, never leave your prescription bottles in plain view through doors or windows. The break-ins at the senior community I mentioned earlier started with a woman taking pain medication. How was she targeted? Her prescription bottles were visible from outside; they were sitting on her kitchen window sill. Locked or not, it’s not safe. Her window was smashed and the bottles were taken. The thief never actually entered her home, and yet, he took her pain medication. Obviously, losing pain medication could prove very problematic, but sadly, a thief isn’t the only way they can be taken.

    We’ve already discussed the idea of a safe, and keeping meds out of the view of doors and windows. Realistically, though, where do you keep your day-to-day medication? My personal choice is to keep only a day’s worth of medication on me. I have nearly all of my prescription medication in my safe. Then, I keep my non-prescription items as well as about a week’s worth of pain medication, in a top-secret place somewhere in my home. Let’s just say, it’s not in a medicine cabinet or any other place where one might typically store medication.

    Why? I am extremely cautious about my medication falling into the wrong hands. Whether it be a friend, family member, plumber, locksmith, tv repairman, whoever… no one knows where my meds are kept, nor would they ever accidentally come across them. As for my single day’s supply of meds, they’re always right with me. If you’re planning to be away for short time, a small pill container can provide access to meds in your nearest pocket. Another convenient way to take a small amount of medication with you? Tiny re-sealable bags, called “Pill Pockets.” They’re for sale with various names at any drug store and all over the web. If you want/need a slightly larger bag, I have seen bags meant for jewelry at one of those discount chain stores. Additionally, you can use what is referred to as a “snack size” bag, sold in all grocery stores. Half the size of the standard “sandwich” bag, these bags will hold what most patients would need, for an entire day–or longer. Once you have your pill bag, it can be stored anywhere, pocket, wallet, purse. Wherever you choose to put them, make sure your meds are always with you, but not easily spotted.

    Treat your medication as valuables. Take it from me, this is the safest way to handle your medication, even at home. I’d guess that most pain patients know the value of their medication, but it’s still worth mentioning here. Wherever you think people are likely to look for your medication, don’t keep it there! Thieves would obviously check the medicine cabinet as well as shelves in your closet, jewelry boxes, etc. If you can think like the bad guys, you can elude the bad guys.

  • You Always Hurt The One You Love
    I’ll go ahead and admit something now, for the benefit of everyone else. In their youth, several of my family members abused street drugs, such as marijuana. And honestly, I have no idea what they’re up to these days. I guess my point here is, nobody can know that, really, can they?

    When I became a pain patient, I was far too open and honest with nearly all of my family members. Mostly because I was scared, and wanted support. So, all of them, including the sketchier ones, knew I was taking Vicodin. I was shocked when one of these people remarked what a ‘fun high’ he got from Vicodin. It made me sick inside, but I said nothing. Then, this same person asked if he could have one a few weeks later. I was so shocked, I didn’t know what to say. I muttered something about running low and that I couldn’t spare any. What do you say to a question like that? I went home and sobbed for a while, then tried to figure out what to do. I was very fragile back then, admittedly.

    Then it hit me… I told the most talkative (ahem, gossipy) family member about what happened, knowing my feelings would soon be known to everyone. I stressed how much that question hurt me. Then, I made it clear that I didn’t think that taking pain meds like Vicodin was in any way fun. Even more, I didn’t want someone to ask me for them, like they were some kind of party favor. It totally discounted what I was going through. Even worse, it made me wonder whether he, or anyone else in my family, thought this whole pain thing I was going through was some kind of joke!

    Nowadays, of course, my reaction would be drastically different. I would’ve probably calmly but rationally explained the plight of the pain patient, ’til he was bored to tears, and went elsewhere looking for something to get high on. I share this story for a simple reason: Friends and family may seem supportive, but the reality is, you can never 100% know anyone’s penchant for drug abuse. Some may privately judge you for taking pain medications, while others secretly wish they knew where you keep your ‘stash.’ It’s a sickening thought, and believe me, I never would’ve felt this way, til I was directly confronted with the issue. Call me jaded or call me enlightened; either is fine with me, so long as my medication is safe.

    I believe there are two reasons I was approached directly about my meds and this person didn’t just try to sneak some, on the sly: (1) He wouldn’t have had access. Even at a friend’s or family member’s home, I always keep my meds right with me. If they happen to be in a purse, that purse never goes out of my sight, for any reason. Don’t feel pressured to give up your purse, even at a fancy shin-dig. It’s your safety that’s important, here. (2) I have never been the type of person to judge what other people do. I’ve seen people smoke pot and drink to excess. I’ve never really cared what people around me do, so long as they are safe about it. I’ve driven people home a time or two, just to be sure they arrived safely. This family member obviously thought I’d be ‘cool’ with his request for my pain medication, merely because I’d never expressed disapproval over his past drug abuse. Realize that most people will not be this upfront about their desire to separate you from your medication. Protect those meds like the life-saving miracle that they are!

    Use my experience as a warning. Now, you have time to prepare yourself for the possibility of this happening to you: (1) Think of what you would say if someone you care about approached you for a pain pill, even if they came up with an excuse, like a toothache or menstrual cramps. Know that if you share meds with them, you are risking your care and they will likely come back for more. (2) Realize it is far more likely for people to take your meds, behind your back. Take every precaution–it’s better to play it safe, than have to try to explain to your doctor what happened. Or, worse yet, be pushed into a situation where you’re forced to file a police report about an incident with a family member, in order to ensure your doctor will continue to trust you and prescribe your medication.

  • Need-To-Know Basis.
    Since my eyes were opened in this most unfortunate way, I’ve decided that it is nobody’s business what medication I take, or even that I take medication for my pain. Not only do I leave the topic of meds completely out of the conversation with just about everyone outside the pain community; certain people haven’t been to my home ever since ‘the incident.’

    Even those who are invited to my home are not given an all-access pass. My bedroom door is generally closed and there is also a lock preventing anyone from even gaining access to the area where my safe is kept. I take this issue very seriously, because loss of medication is such a serious issue. Your doctor and your pharmacist count on you to keep your medication safe. Any careless behavior could mean you have a harder time getting pain medication in the future. Believe me, it happens; there are many sad stories out there. In fact, a recent articles that say the most common way young people get access to pain medication is through a friend or relative. It makes sense–just be careful!

  • Strengthening Safety at with Other Medical Professionals

    What should you do when asked about your medication use by a medical professional, other than your pain management physician? These days, I think it’s more important to protect myself than to provide specifics, whenever possible. Here’s why: I had a bad experience with a dentist when I told them exactly what medication I was taking. In order to treat me, they wanted my doctor to fill out a very detailed waiver form. Additionally, my chart had all these bright warning labels on them, causing several uncomfortable conversations. And, let’s face it, some biased treatment by people who think everyone taking pain medicine must automatically be an addict. As a result, I am now as tight-lipped as I can be, while still telling the truth.

    I provide a list of all non-pain medications, identifying them by name. Then, instead of listing my two different pain medications by name, I simply put “opioid pain medication.” I figure that this covers the topic thoroughly enough, for most circumstances. If I was ever asked for the specific names, I would provide them. However, thus far, it hasn’t come to that. I believe this does two things for me. First, it prevents me being judged by people who don’t understand. More importantly, it keeps a whole bunch of people who have access to my chart from knowing both where I live and what type of pain medication I have in my house. No matter the situation, I have to think about my safety, first and foremost.

    Why do dentists and other medical professionals ask for a list of the medications you are taking? The main reasons are to prevent drug interactions as well as to ensure you don’t have some underlying health issue that may cause you problems, if they perform a procedure. The vague term “opioid” covers that class of medications very well. A drug interaction that may exist for one opioid, likely exists for all of them. But, as I said, if I was ever asked for the complete list of my medications, I would give them–to ensure my safety in treatment, as well as the safety of my access to life-saving medication.

  • Pitter-Patter of Little Feet… or Paws.
    Adults, or even teens in the home, are one thing. But, what about small children or pets? Obviously, the strong opioid pain relievers which are intended for Intractable Pain sufferers can be dangerous, even to a grown man. It makes sense that they can be deadly to young children and pets. Did you know that even over-the-counter pain relievers can kill a cat or small dog? According to the American Veterinary Medical Association, the most common poison small animals are exposed to is medication. Over-the-counter medication is just as dangerous to young children. When it comes to prescription medication, especially pain meds, keeping them out of reach of children and pets is particularly important.

    In 2010, pain medications were the second most common poison exposure addressed by the National Capital Poison Center. (The most common exposure was cosmetics or personal care items.) Last year, 55% of all the calls received were regarding medications. Pain medications, and prescription medications in general, are far more dangerous.

    According to a 2008 study, the average age of kids ingesting meds meant for adults was 2. They were often toddlers, discovering the medication during exploration of their environment. The study brought to light many ways that children gain access to the meds, unintentionally, providing important ways to prevent infants, toddlers or pets from accidentally ingesting dangerous pain medication. It’s important to:

    • Understand child-resistant isn’t the same as ‘child-proof’–a child may still be able to open the caps.
    • Realize that a high shelf or cabinet is not a deterrent to young children–they can climb up on just about anything, making locked storage vital.
    • Discard unused medicine–if you don’t need it, why have it around? (See more information on proper disposal.)
    • Take meds with you if you’re called away–never leave them within a child’s reach, even for a few seconds.
    • Keep purses and bags out of reach, including those belonging to other people
    • Inform friends, relatives and babysitters about these dangers; it’s just as important as taking precautions yourself.

    All of these tactics are really about common sense, but as every pain patient knows, the occasional pill does spill. As the owner of 2 dogs, when this happens, it really scares me. I feel compelled to do what I can to pick up whatever I’ve dropped, as quickly as possible. However, we all know that most pills are round. They don’t just drop flatly to the ground–they roll. Because of my spinal issues, there are times when I am simply unable to get down on my hands and knees to go searching under furniture for a dropped pill–which always seems to be deliberately hiding from me! So, what can be done to keep pets and young children safe from dropped pills?

    First and foremost, try to pick them up yourself, as soon as possible. If you can’t, then you should:

    • Ask a loved one or caregiver for help, immediately, if they are available.
    • Remove pets or children from the area, until someone else can retrieve the pill.
    • Have someone vacuum your home and any vehicles you ride in, thoroughly, at least once per week (moving/vacuuming under all anything that pills could roll under).

    Because just one dropped pill can kill a child, some Intractable Pain sufferers prefer not to have young children in their home. It’s a difficult choice, but such a sacrifice does ensure children are safer. According to the study mentioned above, nearly all of the accidentally ingested medications were prescribed for an adult in the household. Furthermore, 92% of the meds were ingested by children in the home. Based on these statistics, it may be the safest choice to keep young children out of such an environment. If the child in question happens to be your own child, obviously this is not an option. Vigilance is necessary, to prevent a serious accident.

    When it comes to accidental ingestion by pets, the medications that are most appealing to pets are those with a sugar-based coating (such as ibuprofen) or a gelatin capsule or ‘gel-cap’ (commonly used for antibiotics and non-prescription supplements). Obviously, these smell like food to an animal, and are thus the most dangerous to them. This does not mean other medication is safe, left on the floor, however. Keeping this information in mind will help pet owners keep their home safer for their animals.

Strengthening Safety in the Car

  • Lock It, Hide It, Keep It.
    Just like safety in the home, common sense guidelines keep you and your medication safe, in the car. The Los Angeles Police Department released simple guidelines: Lock It, Hide It, Keep It! Always lock your car and ensure the windows are fully closed. Don’t leave your medicine or anything of value where people can see it–this includes things you typically keep in your car, such as a GPS which you affix to the window, as well as CDs. Hide these items out of view of would-be thieves–or better yet, when possible, keep them with you. People have broken into cars just to grab a pair of sunglasses!
  • Your Littlest Passengers.
    Whether medication is dropped in the home or in the car, it is equally dangerous to children and pets. If you ever have toddlers, dogs or cats in your car, it’s important to be sure they’re safe. In just seconds, your little passengers the can find whatever is on the floor of the vehicle. Ensure the car is frequently cleaned and vacuumed by someone you trust. And, of course, whenever possible, pick up dropped medication before it becomes a hazard to anyone’s safety. Because of frequent temperature changes, it is not a good idea to store extra medication in your glove compartment. I find it helpful to keep a small amount of fast-acting medication in a tiny container, in my purse, as a backup. Now sold at nearly every pharmacy chain and Amazon.com, I keep a couple of pills in a tiny resealable bag. They can be extremely useful–stick a couple of extra meds in your wallet, pocket, you name it.
  • Know Your Rights.
    Being pulled over by the authorities is a common fear among even the best drivers; for pain sufferers, this is more of a genuine concern. How do you explain the pain medication you have in your car? Several relevant issues have been addressed above, but obviously, there are greater concerns than just what container to put your medication in. There are much larger legal issues that truly would be best handled by an attorney. So, understanding that I am not an attorney and that the advice in this article is in no way a guarantee, let’s address some of these issues.

    According to the Flex Your Rights web site, and the accompanying DVD 10 Rules for Dealing With Police, there’s quite a lot you can do, to protect yourself:

    • Rule #1: Always Be Calm & Cool – A bad attitude guarantees a bad outcome.
    • Rule #2: Remain Silent – What you don’t say can’t hurt you.
    • Rule #3: You Have the Right to Refuse Searches – Saying ‘No’ to searches can’t be held against you.
    • Rule #4: Don’t Get Tricked – Remember, police are allowed to lie to you.
    • Rule #5: Determine If You’re Free To Go – Police need evidence to detain you.
    • Rule #6: Don’t Expose Yourself – Doing dumb stuff in public makes you an easy target.
    • Rule #7: Don’t Run – They’ll catch you and make you regret it.
    • Rule #8: Never Touch An Officer – Aggressive actions will only earn you a more aggressive response.
    • Rule #9: Report Misconduct – Be a good witness.
    • Rule #10: You Don’t Have To Let Them In – Police need a warrant to enter your car or home.

    All of these rules are words to live by. They were developed by a former police officer who really knows his stuff. When the authorities pull you over, get out your license, insurance and registration–be prepared to show them to the officer when asked. Put your pain medication out of sight, such as in the glove compartment or in your purse. Zip your purse closed. Even if you have a shiny cell phone sticking out, they could say it looked like a gun and thus had ‘probable cause’ to search. Don’t give them any reason to want to see what’s in there.

    As the officer approaches your car, roll down your window and keep your hands on the steering wheel, where they can see them. Smile. Politely ask why you were stopped, even if you think it’s obvious. Don’t say anything else. If they engage you in a guessing game, by asking “Why do you think I pulled you over?” Remain calm, say you don’t know. If they ask further, stand strong and nicely repeat, “I don’t know.”

    They can be really forceful. If an officer leans into your car and asks, “You don’t have any weapons in there do you? Mind if I take a look?” Questions like this are meant to throw people off-balance. You may be tempted to emphatically say, ‘No! Of course I don’t have any guns!’ The natural inclination, then, is to prove it. Police know this; don’t fall into their trap! Instead, when posed with such a question, very calmly say, “I do not consent to a search.” No explanations, keep it simple. Remember they are trained to shake your confidence.

    Trying once more to get under your skin, they may say things like “You know, innocent people consent to searches…” Hold your ground. Police also often ask compound questions to obfuscate meaning–one with a ‘yes’ and one with a ‘no’ answer. Don’t get tricked! Just state your position calmly, and do not get entrapped. Smile and repeat yourself: “I do not consent to a search.” If you give in, your rights immediately go out the window. Anything they find can, and will, be used against you.

    As an Intractable Pain sufferer, who among us can spend even one night in jail, while a mess like this gets sorted out? Don’t put yourself in a situation where you need to prove your innocence. Remember, if they don’t step into your door, they cannot find anything. Knowing your rights can save you lots of undue stress and even pain. Think you’ll forget this information, in the moment? Write these tips on an index card and put it in your glove box. Refresh yourself, if necessary. The officers always seem to take forever to approach the vehicle–it’ll give you something to do.

    Additionally, memorize your Miranda rights–they read them to you for a reason! “You have the right to remain silent. Anything you say can and will be used against you in a court of law. You have the right to speak to an attorney. If you cannot afford an attorney, one will be appointed for you. Do you understand these rights as they have been read to you?” Even though these are usually only read to you if you are arrested, these rights sum up all the areas of a traffic stop that are important, as discussed above. Keeping these in your car’s glove box could also prove beneficial.

    Other Useful Phrases: “Am I under arrest, or am I free to go?” “Am I being charged, and if so, with what?” “I retain my fourth amendment rights against unreasonable search and seizure.” These can all be useful phrases, but remember, Rule #2, above all else. If you continue to talk, they will continue questioning you. Whether in your car, your home or at the police station, remain silent as much as possible. Even if you’re just expressing your rights, you can unnecessarily lengthen your contact with the authorities. And, the police don’t especially like having ‘rights’ thrown in their face. Don’t rattle them all off, just to show what you know. If they continue to press you for answers, the most important phrase is: “I do not wish to be questioned without a lawyer present. I want an attorney.” Remember: Say only as much as is necessary, to get the heck out of there and go home!

  • Be Prepared for the Worst.
    Even more scary than being pulled over, how should we, as pain patients, handle the possibility of being drug tested? Whether at the scene of an accident or because an officer believes you’re driving under the influence, there are many important tactics you can use to protect yourself. There’s an excellent card with your rights printed on it–downloadable from the American Civil Liberties Union. It’s a very detailed paper with small print, covering every possible scenario. Read it thoroughly, and better yet, keep a copy in your car. (An easier to read copy is available at the ACLU web site.)

    A lot of what is on the ACLU card is similar to the 10 rules listed above–just in greater detail. Some additional things to keep in mind:

    • If you’re pulled over, you can refuse to consent to a search. However, if police believe your car contains evidence of a crime, it can be searched without your consent.
    • Both drivers and passengers have the right to remain silent. Many times, pain patients are passengers. If you are a passenger, you can ask if you are free to leave. If the officer says yes, sit silently or calmly leave. Even if the officer says no, you always have the right to remain silent.
    • If you are arrested, do not resist, even if you believe the arrest is unfair.
    • Say you wish to remain silent and ask for a lawyer immediately. If you can’t pay for a lawyer, you have the right to a free one. Don’t say anything, sign anything or make any decisions without a lawyer’s advice.
    • You have the right to make a local phone call. The police cannot listen if you call a lawyer.
    • Prepare yourself and your family in case you are ever arrested. Memorize the phone numbers of your family and your lawyer (Or keep a list with your license.) Make emergency plans regarding your medication; discuss this with a lawyer to determine the best way to ensure your life-sustaining treatment. Also discuss the fact that you are disabled with an attorney and find out the best way to proceed.
    • If you feel your rights have been violated, know that police misconduct cannot be challenged on the street. Don’t resist officers or threaten to file a complaint.
    • Write down everything you remember, including officers’ badge number and patrol car numbers, and any other details. Get contact information for witnesses. If you are injured, take photographs of your injuries, after seeking medical attention.
    • File a written complaint with the agency’s internal affairs division or civilian complaint board. In moscases, you can file a complaint anonymously if you wish.

      Call your local ACLU. And, of course, any questions you have should be addressed with a lawyer that is well-versed with the laws in your state. Arm yourself with quality information, so you can be as safe as possible, behind the wheel.

Strengthening Safety When You Travel

Pain sufferers realize that travel is difficult on the body, but it doesn’t have to be as stressful. When it comes to travel, ensure you have everything you need. Make sure the person you are traveling with understands your limitations, and be sure to speak up, if you need to change plans for any reason. Being open and honest will go a long way towards making your trip more enjoyable.

  • Planning Ahead.
    When it comes to packing, every pain sufferer has concerns. How exactly do you ensure safe travel–for you and your pain medication–with the ever-changing restrictions? Your first stop should be the Transportation Security Administration (TSA) web site. Be sure to check the current rules for disabled travelers. Also, visit check the TSA home page for any possible changes to these policies; up-to-the-minute changes can be found there. Ensure you are packed and ready to leave with plenty of time to spare. At least four hours before your scheduled departure, check the TSA site. Nobody wants to leave home without knowing there are unanticipated delays at their departure terminal! This web site can provide a whole lot of peace of mind.

    Beyond the TSA, there are many technological advances that make travel easier. If your departure gate has changed or the departure is delayed for any reason, most companies now have automated phone systems to provide this information. You can simply call the number listed on your ticket. When making your reservations, online or by phone, check to see if you can receive automatic updates. If you provide a mobile telephone number, you can receive text messages or even phone calls with information regarding your departure. Then, as your departure nears, you will get the information you need.

  • Luggage and Packing.
    As a pain patient, you may feel as though it is easier to put your medications into your checked luggage. Though this seem easier, it opens you up to serious risks, to both your health and the safety of your pain medication.

    Difficult or not, carry all of your medications with you, at all times. I find it easiest to keep my medications, as well as my money and identification, in a purse. (Guys, a small zippered bag works just as well.) When I travel, especially if it’s for a week or more, I take my original pharmacy vials with me. I also have a weekly pill sorter, to divide my meds into, for easy access. So long as I’ve got the pharmacy paperwork with me, there can be no doubt that it’s mine.

  • Paperwork.
    If you hadn’t already guessed, I also bring copies of my documentation from the doctor’s office, whenever I travel. You should too! If your doctor doesn’t have an annual document with proof of your diagnosis and need for pain medication, have him write a letter, similar to the agreement discussed above. Keep a copy of your diagnostic/prescription paperwork right next to your medication–it helps you answer any questions later on, if need be. Additionally, make an extra copy of this paperwork, and place it in your checked bag, in case you misplace the copies in your carry-on.

    Because I’m cautious by nature, I also make a copy of my license and/or passport, and place them with the medical papers, in my checked bag. You can never be too careful! Proof of who you are is important, no matter where you go. Plus, it provides people with your name and address, just in case your bag is lost!

    Another tip: Because I find it easier, I usually place any non-essentials, including comfort items, snacks or time-passing favorites in a separate bag–usually in a wheeled, airline approved carry-on bag. Whenever possible, I try to stow my ‘essentials’ purse inside the larger ‘non-essentials’ bag, when it is not needed (such as on my way to the airport). However, for the duration of the flight, I keep that purse with me, and stow the carry-on at my feet, or above me. I never have my medication, money or identification out of my sight!

    A final note on departure times: Leave earlier than normal for your destination. I generally give myself approximately two hours for a U.S. destination, to ensure I won’t miss my flight or cruise. Why? You want to ensure you have additional time for check-in at the airport, cruise ship, etc. Wherever you are going, assume the check-in process will be a bit longer than normal, because you will be up-front about your disability, your medication and your need for any special assistance/processes at check-in. My policy has always been: Assume the worst, hope for the best.

  • Checking In. Whether for a flight or a cruise, it’s important to let people know, as soon as possible, upon check-in, that you are disabled. Even if you do not believe you need any special assistance, letting people know you are disabled at the outset will prevent any issues during the screening process. How do you do this? Smile, ask how their day is going. Then, calmly and politely explain you are disabled and what extra precautions need to be taken, if any. Want to feel more official, as you discuss the situation with TSA? Why not invest in an inexpensive medical alert bracelet or necklace, to wear when traveling?

    For patients with a medication pump/stimulator or any other fragile medical equipment, it is always best to tell them, at the outset, where this device is located. Taking the guesswork out of an already tense situation makes things easier for you, and the screener. This is also the time to explain that you require a special manual ‘pat down’ screening. Explain that you need a private screening; no wand, no x-ray machine. Note: A private screening is the right of every traveler, disabled or not. For this reason, be sure to tell them you require this, so that your very delicate equipment is not damaged. Most TSA workers know the drill; they deal with thousands of people every day, some of them are bound to be pain patients.

    Tip: If at all possible, bring a fact sheet regarding your device with you. This helps explain what it is, what it’s for, etc. If you do not still have the paperwork that came with the device, there is sure to be something similar online. The simpler the better. Many such devices have a long, multi-page manual. They also have a slick, one-page marketing sheet, describing the device in simple terms. Always go for the simple, one-page explanation.

    If at any time your special request is not honored (or someone appears new or ill-informed), don’t back down. You need this special request, or you wouldn’t be asking for it. Smile, then confidently explain your needs and why you need them.

    I have heard from several frequent travelers that TSA Agents do not always provide a private screening in a timely manner. Screeners have explained that due to workload and number of screeners available, a private screen would take so long, the person would likely miss their flight. In these cases, pain patients have consented to a pat down screening in the open. This can be quite unpleasant, it not embarrassing.

    Keeping this in mind, if you truly want a private screen, plan ahead, giving TSA the extra time necessary to do so. If you travel out of a specific airport the majority of the time, why not call TSA and enquire about the time required to provide a private screening, to you, a disabled traveler? It never hurts to ask.

    If your airport experience is less-than-ideal, don’t be afraid to ask for a supervisor’s assistance, as calmly and politely as possible. Anyone can have a bad day; we’ve all been there. Remember, being a TSA agent is a difficult job; they’re keeping us all safe as we get where we need to go. You know the saying about the flies and the honey. Be nice and things generally go much better than if you explode. (Believe me, I know from experience–it’s not pretty!)

    One final note: If you ever feel you’ve been treated unfairly by TSA, it is your right to report the issue. Visit TSA’s Traveler Redress page for more information. Additionally, all travelers should check out TSA’s Civil Rights for Travelers. Travel can be a nightmare, but the better prepared you are, the easier it’s bound to be! And, it’ll be safer, as well.

Download a simplified guide, containing all the tips in this article now.

Written: December 30, 2010. Updated: February 10, 2011

© 2010-2011 Intractable Pain Journal & Heather Grace. All rights reserved.

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