Quell for Pain Management

I learned about the Quell device earlier this week through social media. It isn’t cheap at $250 but after I dove deeply into the online user comments, I decided I had to buy it. Why? Well, as you may have reason to know or not, when you’re in pain, you want to fix that pain.

First, what is this thing?

It’s a little box that’s lighter than an iPhone but scored in the middle so it flexes. It fits into a pocket and gets snapped to sticky electrodes that go on your leg below the knee. Then the pocket-brace gets Velcro’d around your leg and off you go. It’s a version of a TENS unit but it is wearable and somehow sciencey-special. JUST GIVE IT TO ME!

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The Quell: Picture of a black brace strapped to a leg below the knee.

I can’t explain the science; if  you scroll down here you’ll see a helpful video. Having watched way too many YouTube videos of professors explaining the latest research in pain, this all seemed reasonable. But I figured the comments would tell all so I started reading blogs and so on, as well as user comments on Amazon, where people generally spare no rage. And most of the comments were very positive.  So I thought, ok, it is a quarter of a thousand dollars, but on the other hand, pain.

I ordered it and it arrived two days ago. I have been wearing it ever since then. It comes with an app and connects via Bluetooth, so it tells you how much time you have left in a therapy session and how long to wait until the next one. You can wear it also while you sleep, and I have been.

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Screen of Quell app on iPhone showing a clock face with time left in therapy session and also that I really need to charge my phone.

What does it feel like?

It kind of almost feels like the leg that you’re wearing it on is a little asleep, which sounds annoying–but only if you aren’t in constant pain. You can adjust the strength of the therapy up and down so you don’t feel it as much. I’ve worn it while walking around running errands, walking the dog, walking on the treadmill, and for the most part I have forgotten it was there. The dog even got out this morning and I had to do a short sprint to catch her (ouch) and it didn’t come loose or impede my movements in any way.

Does it work?

This is why I am writing this blog, because I think it does help with pain. It might not help everyone, but here’s what it has felt like:

  1. I notice a distinct difference in my pain levels when the therapy is “on” vs. when it is off. Today there were a few moments that my pain was at a 7 or 8 with it off (on a scale of 1-10) and then when I put the thing on again, the pain was down to a 4.5 or so. If you are in pain every day, you know that is significant and huge.
  2. There’s an additional quality that’s hard to define but that I’ll call the pocket of my mind behind the pain. If you have had periods in your life without pain, you might remember a different version of your brain that was a little quicker, fresher, more alert. Pain is cognitively draining. I swear: I have felt more mentally alert, and I think it has to do with the drain of pain being eased enough that might concentration is slightly better. (Or all this is because I’m on spring break from teaching this week. If that’s the case, I’ll update with that sad news.)
  3. I have autoimmune disease, so the other stuff that comes with that condition (fatigue, ups and downs due to weather, stiffness, and joint trouble) aren’t addressed by the device.

Any downsides?

  1. One thing about this device is that the goopy electrode patches seem like they’re going to attract dirt and get gross (like super gross) quickly. One electrode is supposed to last for 2 weeks, and I can already see that I’m going to be looking forward to that day. I don’t know if I’ll be able to make it that long. A 3-month supply of electrodes is $90, so this could add up. But then as I was sitting there this morning getting my leg zapped, I thought about how many times in the past 2 days already I would have paid $20 to feel slightly better, and I thought: 3. So that’s $60 already. (If you need rationalizations, I make them well).
  2. You have to switch legs or give your skin a breather because users have said the goop irritates the skin under the electrodes. It’s recommended that you put lotion where the patches go. Fine by me.
  3. The therapy is set to go an hour on, an hour off. So the off hour isn’t that good, because the pain comes back. But some people report that the effects of pain relief last up to an hour after a therapy session, and the effect may increase over time. So I’ll see how that goes. I have some weird thing against using it all the time. I don’t know why. Blame Catholicism or Puritanism, I don’t know.
  4. Fashion backward? Maybe, but I do not care the slightest bit.
  5. Another thing: and this might be just me, but today during a rough patch when the thing was off, I was wondering if maybe there was a rebound effect. Could I become dependent on this effect? Was my pain worse during the between-times? I don’t know.

To sum up: It’s not a drug, it won’t wreck your guts, it’s FDA-approved, so there you go. My two cents and two thumbs up.

 

 

Autoimmune Parenting

A fever, lying on the couch under the green blanket, feeling sorry for myself but more than that sorry for my kid, for his life that in this feverish insane moment looks like neglect. He just got home from school and he's playing video games and he just had an argument with the neighborhood kid and I can very easily imagine staying on the couch like this for hours. Here's his mother lying on the couch in a fever–but it's not even the kind of fever where you get chicken soup and time off from life. It's life, this autoimmune disease that comes and goes. It's come and gone every day or week since he was six, and now he's almost ten. He's seen me hobble around with a cane. He knows I have something up with my joints and something wrong with my thyroid. But now I don't care about those things. I just wish I could get up and do some kind of–what, cupcakes? Fall centerpiece arts and crafts with him? Things I never do when I'm well? Something. Instead it's screen time and brain rot and I am overwhelmed with what to make for dinner.

By the way–yes, I have tried and am trying everything. Sometimes when people ask if I've tried a diet thing to cure inflammation or acupuncture they mean to help but it makes me feel guilty, like if I just worked harder I would cure myself. I have a degree in this disease. Actually these diseases–I have two. Don't worry about it–it's okay. What I'm thinking about is not the sickness in the abstract but my life here on the couch and what it means about my parenting.

And here I am on the couch, dipping down into visions where I am a bad teacher and a mediocre mom and everything. By the way, in case someone on my tenure committee is reading this: I am an awesome worker and everyone will tell you so, and I get everything done that everyone asks me to do. Think of it this way: the time that other people spend drinking, watching sports, or getting their nails done or playing Candy Crush or cooking fancy meals, I spend sick. And I have lots of good patches. I'm just in a bad patch. But it all comes out in the wash. It's fine. And I'm not even that much of a drain on the health plan, in case anyone is cruelly evaluating me on a monetary basis: some scrips and blood tests and mostly shoulder shrugs and the obvious statement: this is incurable. Easy. And I'll be a good worker for a long time, and I am like Neo in the Matrix with pain and discomfort, a ninja. Like being a mom, this constraint has made me work smarter. Rah rah.

But back to the level of humanity, it's difficult, as humanity can sometimes be. Everyone gets sick. And the recent blood test results seemed worrisome but in a way that I couldn't interpret, and I put in a call to the doctor today and didn't hear back, and I didn't hear back either from the other doc who ordered the tests. So I am on the couch wondering what those numbers mean and if they can fix it and wondering why I have to wait for three more weeks to see a new specialist because my last brilliant specialist had to close her practice. At least I have insurance. If we were Canadian I wouldn't have to do that little simpering dance of gratitude for what is a human right. But anyway.

There's so much I should be doing. I didn't feed the bearded dragon lizard his chopped vegetables. I need to put a load of clothes in the dryer. And I have deep suspicions that my insights about Ben Franklin's Autobiography won't seem very insightful to the honors students in my seminar tomorrow. I responded to a few student emails and slept for an hour. I worked for six hours this morning but it never seems enough.

My son comes upstairs and I tell him out of guilt that he needs to get off screens in a half an hour and then he can help me figure out what to cook for dinner. He says okay and I go back up and lay on the couch and start to cry because he's so good, and I have a half hour before I have to do something practical. I text a friend with autoimmune stuff and she realizes pretty quickly that I'm losing it, so she calls me instead and she makes me laugh and says, “You want to make your son cupcakes? Do you actually ever make cupcakes?” No, I said. I guess I must be a bad mom.

You're a great mom, she says.

I feel like crap and I feel afraid of everything, I say. When I have a fever I get this thing I call “fever doom” and I can't think straight and my husband is working tonight.

I get that too, she says. Tell your son to make a PB&J and he'll be happy.

He comes upstairs and I start to cry and say, like I always say, It's not you, I'm not mad at you. I'm just not feeling good. You know that, right, buddy? It's my joints and my thyroid.

He nods. Let's go to the library and get Chinese food, he says.

Okay, I say. Good plan.

We go to the library and he checks out a Pokemon game and a video and a book in a series he likes. Both inside and outside he is scaling walls, sliding down banisters, attempting Parkour. He is not ADD, he is HYB (healthy young boy). On the way out a guy looks at my son as he leaps in midair between two concrete blocks and says, “I wish I had his energy.”

We get Chinese food and on the way we talk about why it's good to buy from local businesses. I'm not sure when this conversation started, maybe a month or six months ago, but it's been on his mind lately for whatever reason, so we often list the local businesses we buy from. Tonight we talked about why it might be better for the family running the Chinese restaurant to work for themselves rather than having to send their money to McDonald's Corporation.

Okay, I thought. He's getting vegetables in his Chinese food and we're talking basic economics. I can't do fall centerpieces but I can do social justice economics.

We drove home and unpacked the Chinese food and I stared at the unwashed dishes in the sink. This is it: the sink, and my hands and wrists burning as I grab the first glasses to put them away. So. Tired. But we keep on, and I tell him to get out the soy sauce for him and the fish sauce for me. Eat your carrots, okay? You need them to get strong. And the fever hasn't gone anywhere, and I pour him milk, and he tells me to come downstairs and sit with him. You can type on your iPad, mom, he says. I can't see much; it's like the edges of my vision are gray, but that makes things simpler.

Tonight I will tuck him in and go right to bed because extra sleep helps, and I hope in the morning I will feel better and get calls from doctors, and I'll drink all my special potions and do my special vitamins and relaxations and be the best mom I can be. And he's already the best son. And this won't be cured because not everything is a princess story, but– but what…. I feel the urge to write “That's okay” but it's really not okay. It just is. And it's okay at some larger cosmic level that I can sometimes see and sometimes utterly lose sight of.

 

My Fictional Selves

My fictional selves are like Charlie's Angels or intergalactic ninjas. They get so much done while wearing silver lamé bodysuits. Actually, there's no version of me that looks right in that kind of an outfit, but I make up these women–and then they irritate me. I'm so not a superhero. A few days ago I sat at my desk, decidedly un-silver-lamé, pretty much wrecked by 2 pm. My hands hurt. My neck muscles knotted up. My elbows and shoulders throbbed. The joints in my toes stung. But I didn't even take physical inventory; I didn't have that much sympathy for myself. I wanted vengeance. Me and myself were going to have a little snit with each other. I looked at the little clock in the upper-right-hand corner of my computer's screen and thought, Three hours. You're wasting three hours. Three years ago, that would have been a fresh half a day, an oasis. Programs would have been designed, proposals and essays written, projects cracked open. Remember that fantasy caffeinated self? I saw a glimpse of her silver cape as she sped by outside my window. Up until three years ago, I had been relatively lucky, health-wise. Then after a thyroid problem, the symptoms of rheumatoid disease exploded full-bore, and I gradually pieced together my diagnosis: an auto-immune disease that attacks the joints and in general messes with things. Before that point, I had thirty-nine years of thougtless and lovely mobility. They were wonderful, and I am so lucky I had them. Still, today, I have some good days–most days I do have a lot of mobility, and some days I have almost all. I do still have days of 90 percent mobility, but I don't take them for granted. It's been three years, and three years would seem like long enough to get used to a new situation, but my mind and my body both struggle with the burden of the other people we used to be. I recently finished reading Emily Rapp's Poster Child, about the experience and effects of a birth defect that limited her mobility, requiring a foot amputation and multiple prostheses. She includes a vivid explanation of phantom limb syndrome, the effect of a mind that has already mapped its body and continues to signal the emergency of a missing appendage. Rapp explores deeply the effects of this challenge on her sense of self, how it changed every experience, creating new adaptations and permutations. She writes honestly instead of aiming to create a fantasy of unreachable saintliness. She doesn't push the “learning” and the “peace” of her experience, because it doesn't end. She also writes about the effect of constantly imagining the other versions of her life, the what-if bodies, the alternate universes in which she had two symmetrical legs. So–my disease is not at all crippling. And I've had years–decades–to take my body for granted. That past of taking myself for granted has birthed the silver-lamé superstars. I still want a body I can take for granted, a body I can push, a body–the body of a twenty-year-old, I suppose–that occasionally needs sleep and food but bounces back stronger after a glass of water and a donut. If you have a brain then you're constantly imagining, so I think it's unrealistic for me to tell myself to “stop it” and to forget about what it felt like to be pain free. I will probably have longing toward those other bodies, how it felt to be them, for a while. Maybe for the rest of my life. I suppose that's normal. At the same time, this phantom body syndrome, the fantasy version of myself, can easily take over if I let it. It's a video game of shame in which this body, the one I have, always ends up losing, judged as inadequate. I can't help but imagine a paradise in which I would get everything done that I felt I needed to do. Those silver lamé women are fantasies, a kind of efficiency porn, two-dimensional bodies. They're not real. One of the ways I'm working on living with this disease is to shake my head and try to clear my eyes of the flashes of silver, and I have to first name them, to realize they exist, that they flit through my vision when I'm frustrated, when like a little kid I want to throw down my purse and my keys and swear. I suppose everyone has to contend with these former bodies in some form as they age and their bodies change. My break-up with my phantom selves is happening faster, sooner, so maybe I'm getting a challenge done that other people have to face later. Yeah, I like that: check it off the to-do list. That's another fantasy, but it's one that's slightly more realistic. And I have to remember that I have strange and powerful mental silver-lamé abilities, and I believe in powers that develop to compensate for others that wither. I have to imagine new superheros: that on bad days I can wield my metal cane to trip ninjas. As I squint for my close-up, the thoughts and ideas I have are sometimes foggier, but sometimes the plans I hatch are brilliant. ————- This is for a “blog carnival” about “How Do You Prevent the Disease from Taking Over?” from a prompt by Kelly Young, whose blog RA Warrior is an essential part of the rheumatoid community.