A GIFT TO BE REVERED

https://www.painnewsnetwork.org/stories/2021/12/24/a-gift-to-be-revered (first published on Pain News Network I was thinking, “It's Christmas time. I'm supposed to be happy.” Instead, I am by myself in the parking lot, observing others walking with friends, enjoying each other, and the frivolity of the season. And I am jealous. I hear the laughter as they walk past me, reveling in the joy of the holiday. And I am jealous. I feel the biting cold, as I watch them pull scarves tight around their necks, pulling them up over chins and around their ears. Others tugging on their hats to keep out the cold. And I am jealous. This is my holiday, alone, unable to enjoy the cold and the fun of the season. My pain has left me mostly housebound. I rarely go out, not a conscious choice, but one the pain made for me. I don't want to go out when I am in pain. I don't want to go out when the pain is quiet because I don’t want to trigger it. Alone in my house, there is no one to befriend me. I have no family, they abandoned me years ago. Despite all the brain surgeries for my trigeminal neuralgia, they still think I am lazy and a malingerer. Friends I had long ago moved, died or the relationships just ended, as often happens in the normal scheme of things. My pain is in my face. It doesn't allow me to wear a hat or pull a scarf around my ears and face. Winter and Christmas add to the litany of so many other things the pain has stolen from me. For many people, parties await and shopping expeditions abound, anticipating the great morning of everyone around a tree, opening gifts and squealing at the wonderfulness of what they received. But they are anathemas to us. It is not that we hate the excitement, the time spent with others celebrating, the fun of seeing all the decorations and storefronts with their mystical, musical displays. It is that we hate the pain. It is knowing that if we say yes to the offer of going to a party, walking around the stores or exploring the neighborhood, we are saying yes to the pain. We are agreeing to put ourselves in what, for us, is danger. And that makes Christmas not so much fun. “Attention must be paid,” wrote Arthur Miller in “Death of a Salesman.” Willy Loman, the main character, was just a regular person. “Not the finest character that ever lived,” his wife says to his sons. “But he’s a human being, and a terrible thing is happening to him. So attention must be paid.” We are human beings and pain is the terrible thing that has happened to us. And attention must be paid. If there is no one else, I and the pain community hear each other. We pay attention. And that is a gift to be revered.

A Matter of Interpretation

By Carol Levy, PNN Columnist I recently read a post in one of the online chronic pain support groups. “Sue” had just left an appointment with her pain management doctor. She was enraged, so angry about the way the meeting had gone, that she went right to her computer and complained about it. “My doctor asked, ‘What do you think about my lowering the pain meds you're on?’” Sue wrote. “How dare he reduce them!” was her response. Sue said the medications were helping her and the doctor had some nerve to ask. All these doctors want to do is hurt us, she wrote, and if it wasn't for the CDC and FDA, this wouldn’t be happening. I read her post and was somewhat confounded by her anger. She did not include any information on how the meeting ended. Did he lower her dosage or the number of pills? I could see how upset that would make someone, especially if the drugs were helping. But he didn't say, “I am going to lower the level of opiates I am giving you.” He said it in a way that seemed, to me, like he meant to open a discussion. It reminded me of a difficult crossword puzzle I had just completed. It was so frustrating. I had it all done, but for one four-letter word. The clue was “wind.” All I could think of was “blow,” as in the wind blowing, but the letters didn’t fit. There was a “C” for the first letter but I could not think of one word that started with “C” that fit the clue. No matter what letters I tried, I could not think of any other answer but “blow.” Finally, I was able to figure out the word. The answer was “coil.” “Coi!,” I thought. “Oh, for goodness’ sake.” I was so obsessed with my one interpretation, it never occurred to me to consider another. It wasn't wind, as in the wind blows. It was wind, as in winding a clock or a windy road. I think we do this often, and not just with medical people. They make a statement or ask a question that seems clear. But to the listener it carries a whole different meaning. It’s harder when you're right there. Reading about it online made it easier for me to see it as the doctor asking, not demanding or insisting. In the heat of the moment, it may well sound like, “I'm not going to help you anymore. I'm stopping the drugs that have been helping you.” There are crosswords and cross words. Sometimes we have to stop, take a deep breath, and instead of responding with angry or impulsive words, ask for an explanation. “Are you asking me about lowering my meds or are you telling me you will?” If it’s the latter, it may well be the time to be upset. If it’s the former, it’s time to open the discussion. Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” Carol is the moderator of the Facebook support group “Women in Pain Awareness.”

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The Pain Community Needs More Unity and Awareness — Pain News Network: By Carol Levy, PNN Columnist My column last month, “It’s Time for People in Pain to Be Heard,” received a lot of comments on PNN and in social media. Most often the writer wrote about why or how they had been hurt by the implementation of the CDC opioid guideline. Several people commented that

It’s Time for People in Pain To Be Heard

(copied from https://www.painnewsnetwork.org/stories/2021/3/4/its-time-for-people-in-pain-to-be-heard I just had my second “there's an issue with filling your codeine prescription” incident. I have been on codeine, on and off, for over 30 years. Initially, I was allowed refills. When that was no longer permitted, my doctor gave me a new prescription, each and every month, for 120 pills. When my trigeminal neuralgia pain became somewhat better as a result of various surgeries, I often took only 1 or 2 pills per day. I am now about 90% housebound. Part of it is due to Covid, but mostly it’s because I do not want to go out and make the baseline pain worse. As a result, some days I take no codeine at all. My last prescription was for 120 pills. It was a month’s supply that lasted for 9 months. The first incident was last year, when my pain management doctor decided, without discussing it with me, that he was no longer writing scripts for 120 codeine pills a month. Instead, he changed it to 10 pills a month. I was told he didn’t like me having extra pills, a nonsensical excuse as I had no history of giving them away or taking too many. Prescriptions for 120 pills just made it easier for everyone, including the insurance company, since they would be paying less for fewer doctor appointments. Fortunately, I was able to go to my family doctor, who had no problem writing for 120 pills. They trusted me there, knowing I would not abuse them. But when I took the script to the pharmacy, I was told, “We can only fill a 7-day supply per your insurance company.” The worst part about that was not that I would have to repeatedly go back to the pharmacy, but that the cost for each 7-day supply was much more for me out-of-pocket than if they just filled the whole prescription at once. My Physician Assistant called the insurance company to ask for a pre-authorization. This would allow the pharmacy to fill the entire amount at one time. They immediately allowed it for the next 12 months, which seemed odd. If they think I should only be getting a 7-day supply, then why allow the whole script to be filled for an entire year? Either I am untrustworthy or I'm not. I am lucky. I don’t rely on daily opioids to get me out of bed, go to the store or be able to work. So many of us have no other option but to take them. My annoyance is tame compared to what other patients go through, who have been unable to get what they need due to restrictions on prescribing. Physicians for Responsible Opioid Prescribing (PROP) recently sent a letter to the AMA saying the organization shouldn’t be calling for changes in the CDC opioid guideline, even though far more people are dying from street drugs than prescription opioids. “Medically prescribed opioids remain a common gateway to illicit opioid use and are themselves frequent causes of opioid addiction and overdose, even if illicit opioids currently cause the greater number of deaths,” PROP said. PROP founder Dr. Andrew Kolodny even said that prescriptions “still have a very long way to go” and should be reduced even further. PROP’s reach is loud and strong. We complain so much to each other, patient support groups, Twitter and other social media about how awful this is, how unfair and inhumane. A number of people have started online petitions to send to the FDA or CDC, asking that the guidelines be changed so they stop hurting chronic pain patients. Many say, “This is a great idea.” Yet few actually sign. Nothing will change if we don’t band together and make our voices heard. The call keeps going out, “Something must be done!” But too often the answer is, “Oh yes, somebody must do something. But I'm too busy.” Whispering in the wind won’t help. It is long past time for us to become a true force, with a voice that is louder and stronger than PROP’s.

Our Dirty Words

https://www.painnewsnetwork.org/stories/2021/1/30/a-pained-life-our-dirty-words A Pained Life: Our Dirty Words January 30, 2021 By Carol Levy, PNN Columnist You may remember the late comedian George Carlin’s monologue: “Seven Words You Can Never Say on Television." I won’t list them here, but they are “dirty” words better off not being said, even off television. I thought about Carlin’s list the other day when I realized there were some words that I use all the time. They’re not dirty words, but for many of us who have chronic pain, they’re words that often prove to be hurtful. Words that we need to let go of. For example, a major portion of my trigeminal neuralgia pain comes from eye usage and eye movement. I love to read and whenever I pick up a book I know it’ll cause pain, but I refuse to let the pain take this from me. As I read, the pain starts to grow and becomes demanding: “Stop! STOP NOW!” But the plot is thickening and the killer will be soon be unmasked (I hope) in the next few paragraphs, so I keep reading. And the pain keeps growing. The voice in my head yells: “You have to stop. You have to stop NOW!” The other voice, the one that refuses to accept my limitations, answers: “Just one more page. Just one more paragraph. Just one more sentence.” I can listen to the sensible voice and stop now. Or I can read just a little more. And be in tremendous pain. Most of the time the “just” voice wins. It is a word that is anathema to controlling the level of pain. But I let it win anyway. Shoulda Woulda Coulda “Should” is another word that causes us to do so many things we know we shouldn't: “I should make the bed” or “I should make the kids dinner even though the pain is so bad.” That’s often followed by the self-flagellating counterpoint “I shouldn't have made the bed or read that book. I knew it would make the pain worse.” “Could” is another one. I find this word to be a favorite of rueful thoughts in the “coulda woulda shoulda” variety. It is also a favorite of others who ironically think it is a compliment: “You could have been a doctor, lawyer or teacher.” Yes, that’s a nice thing to say. It is usually an effort to compliment us, our intelligence or intrinsic worth. And it is so hurtful. Yes, I know I could have been those things. I may have even tried, but the chronic pain took those options away. Pretending or refusing to accept our limitations, and knowing when to say when, is often very hard to do. Because we want so much to do more than what the pain allows us to do. I am sure there are many other words that describe our plight, but in thinking about it they all seem to come under one umbrella word: Denial. It is hard to do, but we need to learn to accept what we work so hard to deny. When it comes to deciding what we can and cannot do, the pain is king.