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"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Friday, December 1, 2023

Is the DEA a Domestic Terrorist Organization? — Pain News Network

Is the DEA a Domestic Terrorist Organization? — Pain News Network: By Carol Levy, PNN Columnist Terrorism is very much in the news these days, given the Israeli-Hamas war and all the fallout from it around the world. But terrorism can also hit close to home and in unexpected ways. The FBI defines domestic terrorism this way: “Violent, criminal acts committed

Monday, August 21, 2023

A Pained Life: Let the Words Flow — Pain News Network

A Pained Life: Let the Words Flow — Pain News Network: By Carol Levy, PNN Columnist I ended my last column with my favorite saying: “You don't know what you don't know. And if you don't know what you don't know, you don't know what to ask. Our doctors need to ask.” A couple of days later, I thought about the column and my second appointment with a n

Wednesday, July 19, 2023

What Doctors Should Ask Patients in Pain — Pain News Network

What Doctors Should Ask Patients in Pain — Pain News Network: By Carol Levy, PNN Columnist I learned in childhood to keep my mouth shut if I had pain or was feeling sick. My siblings would say, "Stop your whining. Just go to your room if you're feeling so bad, so we don't have to hear about it!" I learned to say nothing, no matter how bad I felt.

Sunday, December 26, 2021

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.

Thursday, July 15, 2021

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.”