All posts filed under: medical

Thoughts on the Quell Pain Relief Device

I have now been using the Quell pain relief device for 15 days. Here are my initial thoughts: I definitely notice when I am not wearing it. Last week I was on the beach in Cape Cod with the in-laws for an afternoon, so I didn’t put it on for fear of ugly tan lines. I crashed as soon as I got back to the hotel. My pain quieted within 20 minutes when I started wearing the Quell again. While it can be tolerated on a 24-hour basis, I have been wearing the Quell only during the daytime. My pain is better when I’m flat on my back (once I take some tizanidine, anyway). I attempted to wear it one night and found the vibration, even in nighttime mode, too distracting. On the plus side, Husband could not feel the vibration on his side of the bed, so it won’t disturb any partners. For not wearing it 24-hours a day, the electrodes wear down at a rapid rate. After five days bits of the gel came off and stuck to my …

Names Have Power: a Discussion About Labels and Chronic Pain Patients

I have long believed in labels. If there is a name for what I am experiencing, I am better equipped to fight it. If I know what I am, I can deal with the world appropriately. Names have power. That’s what Neil Gaiman’s version of John Constantine said. He said it for different reasons and toward a different end, but the fact remains: Names have power. I have collected labels and names over the course of my life: allergic to food/has eosinophilic esophagitis/is a good student/played tennis/played the violin/writes novels/is a lawyer/is disabled/is a chronic pain patient. I define myself by what I do and what I experience. The names are like a shield. A medical ID bracelet naming my allergies makes me feel special and fragile like a unique little glass-winged butterfly, and more than that, it’s a story. I love to tell stories. A scar on my throat is a symbol that others recognize. I have been broken apart and welded back together. I have been remade. So now I face a dilemma because the …

I Make Pain Look Good.

Take a look at this person. Take a real good look. Then ask yourself: Is this person in pain? She looks fine, you think. She doesn’t have a handicap placard on her car. She doesn’t walk with a cane. She isn’t wearing a brace.  You furrow your eyebrows, and then you think: She looks totally normal.  The thing is that when this picture was taken, she was in a world of pain. She had three sort-of healed spinal fractures and a calcified nerve cluster. Even though she was smiling under the artful disguise of Microsoft Paint, she was hurting. She was wearing a back brace under that dress. She changed into flats as soon as that picture was taken. She found a place to sit down and close her eyes, trying to match her inhales and exhales to the thud-thud-thudding of her spasming muscles. She had her special dichroic glass pill case in her handbag filled with Tramadol, Nabumetone, and Vicodin. She had already calculated how long she could stand being upright and the time it would take to get back to …

Word War Won: “Victim” vs. “Survivor” vs. “Thriver”

I was going to talk about different words during this edition, but Alexis got me thinking. We had a very uncomfortable session the other day during which she asked me how things are going now that I’ve cut out sugar and alcohol. It started last week when we had a Skype session and she saw my face. She said I needed to do a detox. Immediately. I felt slow and inflamed, my brain was foggy, and even my face looked puffy. I’d gone to a small law school reunion/memorial for my friend Andy and saw surprise on my classmates’ faces; the last time they saw me was thirty pounds ago. (Granted, some of that weight gain was necessary at the time since I was an anthropomorphic coat hanger, but do you know how hard it was just now to type “thirty pounds ago”?) My pain was worsening. I’d been gaining weight despite exercising every day, thanks to my medication increasing my appetite to that of a starving boat wreck survivor. I’d binge in the evenings after work, thinking I deserve this as I snatched …

Embracing Pain with Mindfulness

Is it better to ignore pain or embrace it? I thought for the longest time that by meeting my pain head-on, I was doing myself a good service. And it’s true; ignoring pain can be emotionally and mentally taxing. If I embraced the pain, I would be able to discover the edges of it. Then I could encase it in a box within my mind, if that makes any sense. I’d be able to get outside of my own head. Surely this was better than ignoring how I felt? Better than pressing onward despite feeling like a train was chug-a-chug-a-chugging along my spinal column? After the first accident, I thought that I’d felt the worst pain I could ever feel. After the second accident, naturally, I realized that the pain can get worse. The pain can always get worse. And where before I could feel the edges of it, after the second accident I was burning inside, burning outside, just burning. I tried to face it; instead, I was directed by it. If I turned too quickly and felt …

Word War Won: “Injured vs. Crippled”

This is the first of a weekly edition called “Word War Won,” which somehow hasn’t been used before in the entirety of the Internet, so I’m feeling fairly clever. Anyway, this weekly post will focus on the words used by chronic pain and illness patients, the words that reflect our warped self-perception. We define ourselves in such terrible ways. We treat ourselves like we would never treat another person; we say cruel things and we belittle our progress. The things I’ve said in my head to my hard-working body are things I would never say to Husband or my friends. I want to do what I can to drag this very private issue out into the sunlight. Our bodies are doing the best they can at any given moment. Each and every day upon waking up, we forget that our bodies have been working hard all night to keep us alive and breathing. Even if we feel like they constantly fail, they are trying so very hard… and yet we tear ourselves down and say that we are broken, that we are useless, and that we are burdens on those …

Small Hurt Versus Big Hurt

I am typing this with nine fingers because I lost a fight with a stick blender today. Why is it that small injuries seem to hurt worse than large ones? I sliced my left index finger in a way that (probably) does not necessitate stitches. I had to take pain killers and vodka — not at the same time — and ice it. It’s still throbbing. … Thrrrrrrooooooobbbbbbbing. Immediate pain seems to envelop the mind in a way that chronic pain can’t, since chronic pain is something that one comes to live with and therefore ignores. You adjust as necessary. Your back and neck hurt on a daily basis? Change the way you sit so that you don’t aggravate it. Don’t do too much, keep an eye on it, don’t move your head too quickly, and don’t go pole-vaulting. You cut your finger? DISTRACTION NEEDED. OH MY GOD. OH MY GOD, THIS HURTS. On the plus side, this is distracting me from my normal pain! So I’ve got that going for me, which is nice.

Let’s Talk About Wabi Sabi, Kintsugi, and Invisible Illness

I finally caught up with a couple fragments of thought for this edition of Wear, Tear, & Care. For weeks now I’ve been pondering two Japanese concepts: Wabi-Sabi and Kintsugi. Wabi-Sabi: “the Japanese art of finding beauty in imperfection“. Kintsugi: the art of repairing broken pottery with gold. These two Japanese practices can easily parallel the difficulties that arise when discussing self-acceptance of invisible illness. More often than not, I find myself saying that because I am not perfect — because I am not a fully-functioning human being, much less a movie-star-like specimen — that I am not worthy or deserving of… what, love? Life? Half the time I don’t even know. The most constant sense I have is that if I am a less-than-able person, then I am undeserving of happiness. That I won’t be happy unless I am whole. Then I started really thinking about these Japanese practices. With Wabi-Sabi, in terms of how something imperfect can still be beautiful — this is something that I feel like every child is taught in grade school. Even though we’re all …

5 Items to Get Through Painful Days

This weekend was very difficult for me. A small party Husband and I hosted on Saturday night celebrating two birthdays and an engagement ended up sputtering to a halt at 10:30 when I kicked my friends out of the house; I was in too much pain to hold a conversation. Super Bowl Sunday was a party Husband went to without me. I stayed home, high on Vicodin and watching the Puppy Bowl (the latter of which is a noble endeavor). My neck and shoulders have been seizing badly. I’ve always thought of it like Silly Putty. If you pull it apart too quickly, it snaps; if you yank it with a tad less force, it pulls apart… just managing to stay connected as it stretches. That’s what my spasms feel like: My muscles are giant wads of pink Silly Putty that spasm and then s-l-o-w-l-y stretch. So I have to arm myself with whatever I can find that has the ability to help me get through tough times. What are my go-to items? Cryoderm: I’ve tried a number of topical creams, everything from …

Bedtime Reflection

So Husband and I were getting ready for bed last night (sorry to disappoint you, but this story is thoroughly unsexy). He watched me shrug out of my clothes like an old woman in a locker room. Craning my head to the right and to the left, I tried to ease the fingers of pressure gripping the back of my skull. I rolled my shoulders, contorted, tried to get away from myself. Husband was silent as I took my evening pills: Lyrica (nerve pain medication), notryptiline (antidepressant used for pain control), Cymbalta (antidepressant used for pain control), tizanidine (muscle relaxer). As I finally got into under the covers, he said, “Sometimes I just don’t get how someone can still be hurting from an accident so many years later.” That’s the kicker, isn’t it? Those of us with invisible problems, we look fine. Those who know me can see when I’m hurting, but to the vast majority of the human race, I look like a normal person. Even Husband doesn’t realize it sometimes when my spine has exploded and fireworks are …