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.

 

 

How Should You Treat a Co-Worker with a Chronic Health Issue?

You might see someone limping with a cane down the halls, and then a few days later they’re fine. Or you know a co-worker has lupus and you are not sure what that means for their role in your project. Or you are just empathetic but unsure. I am not an authority on invisible disabilities, but I do have a few–two autoimmune conditions including Rheumatoid Disease, which affects my movement and produces pain–so I thought I’d take a stab at some imaginary questions. I’m not an HR professional. This might be incorrect! It’s just my thoughts. Feel free to leave other questions in the comments.

Is a person with these conditions (which I’m going to describe as invisible disabilities) less able to work?

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My cane and my heating pad at my desk. Showing up like a rock star.

Unless they are a lumberjack—and maybe even if they are a lumberjack—each situation is unique. Jobs are a fit or not a fit for a wide range of reasons, and determining that fit is the right of the employee, the supervisor, and HR—not you. Instead, check your own thinking: are you assuming that when you see signs of physical impairment, there is cognitive or motivational difficulty? There might be those, there might be others–but it’s probably not something you are qualified to evaluate. I can ask that difficult question because I have a sometimes-visible disability and yet I too berate myself for being less capable. I’m not less capable. In fact, in some ways I’m more capable, for reasons I’ll get into below.

 

The truth is that a person with a chronic condition who is employed is actually a wonder of neuroplasticity and adaptation. People can adapt over time to conditions that would be unbearable if they emerged suddenly. They are forced to grow their lives around amazing challenges and yet make life work, to be functional.

If I have someone with a chronic condition or an invisible illness on my team, is that going to affect my due dates? What if they have to go into the hospital?

Not everyone who has one of these conditions needs time off of work, but every single person alive faces the unknown of illness and hospitalization. Cross that bridge when you come to it, but you do not need to expect any additional degree of unreliability from someone with a chronic condition. That’s a misconception about the nature of chronic illnesses. If there’s a serious issue, the person will make you aware of it.

In what ways is a person with an invisible disability or chronic illness a wonderful employee?

Hahaha—that’s a great question. (I might have planted that one). A person with these conditions can be a great liaison to other employees and to potential customers with these challenges. He or she can help you adapt your business, your website, your services, to the needs of this huge population. A person with these conditions is often a complete wonder of efficiency, because he or she has had to make difficult choices with regard to precious energy and time that can’t be squandered. People with these conditions get as much or more done because they know their own energy levels and work abilities intimately. They are mental and emotional athletes. They often have a high degree of empathy, and in some cases their ability to design work-arounds in their own lives has resulted in enhanced creativity for out-of-the-box solutions.

Should I give the person extra leeway with deadlines, etc.?

That’s not necessary unless they ask for it—like any other employee that needs a flexed deadline. And we all do, for all the shit life throws at us.

Some days a person has visible aids, like a cane, a cushion, limb or hand supports. Does that mean the person is feeling his or her disability most acutely and that it is gone on other days?

Actually, no—not at all. One of the difficulties of an invisible condition is that the discomfort is usually chronic. A particular aid might be called for on a particular day, but the hardware just means that a specific part is having difficulty, and does not even act as a barometer for when the worst days are.

When I see a person with one of these aids, does it help to express sympathy or to ask how the person is doing?

This is a very individual thing, but in my case, the answer is no. I want to try to normalize my condition, to have it be a part of me but not the most obvious part. I want my coworkers to understand that some days I have my hardware and some days I don’t—but that every day is hard. Because every day is hard in different ways, expressing sympathy only when the hardware appears makes me feel a little like the person doesn’t get my condition (it’s fine if they don’t—I barely get it). The worst part, however, is to associate my cane with a sad expression and the need for sympathy. I love my cane. I love it. It helps me walk, it announces my disease as visible, and it does a lot of other things for me. The worst days are the days you can’t see. So when you see me with a cane, just say hi.

Should I suggest various things that have worked for my niece’s boyfriend or that I have seen on Facebook, such as supplements, yoga, etc.?

No. These people are barraged with well-intentioned advice. Think about what it must be like to have a life-long condition that other people assume is easy to fix when in fact doctors have pronounced it incurable. What you are saying to the person is that they have overlooked something obvious and so therefore that they might be a little dumb. You don’t mean it to sound that way, and you’re just trying to be helpful, but it’s a little insulting, and it doesn’t help to build connection.

Should I use this person’s condition against them in power struggles and office conflicts?

Hahah! You’re FIRED! No, seriously: This is probably too obvious to say, but it needs to be said: if you in any way imply that the person is less able to do their job, is weak, is less qualified, or is a burden, you are not only wrong but you are also doing something that is immoral, unethical, and illegal. You are bullying based on physical ability, which is reprehensible.

xoxox

Sonya

Alternative Pain Scale

When chronic pain people go to see doctors and specialists, we are often asked to rate our pain on a 1-10 scale. Somehow I always get confused by this instrument, partly because I don’t know what each level means. For that reason, I’d like to propose this alternate 1-20 scale (it was 1-18 but I added a few)
(This is meant to be funny for people in pain, so no need to feel bad, be upset, etc.)
IMG_55971. I have bold plans to revamp diet or try new stretches out of desperation borne by last night’s pain, and I am overjoyed and energized that I am not right now in pain.
2. I’m busy-busy-busy because if I move fast, the pain won’t catch me! And I’m in motion now, but once I stop, maybe I’ll be stuck to the couch with glue.
3. God, why am I so bitchy? Oh, wait–I’m in a sort of grinding, background-noise, world-clenching box of pain just beneath the edge of my conscious.
4. Couch. All I want is my couch and Netflix.
5. Wait, I’m kind of unsafe to drive just because I’m in pain. Like I can’t think clearly. Wait: does that mean I’m high on pain itself? Did I invent a free and unpleasant way to get high? Everything is totally funny. Pain Vegas!
6. Get the heat things and the cold things and the tiger balm and the various ointments and salves and put them all on me immediately.
7. Don’t fucking touch me.
8. Oh my god, do you still love me? Someone tell me they love me because I worry you hate me when I’m in pain. Am I irritating? Is it hard to love a near-invalid?
9. We need to check on our long-term disability policy. Do we have long-term disability? What if I can’t work anymore? Oh my god, I can’t go to work tomorrow but I have to. We need to make a Plan B right now. What about eel farming? Can we put eels in the pond behind your parents’ house? Could we live on that? We should start buying cans of soup on sale and putting them in the basement.
10. Everything is so beautiful and precious because I might die soon. I love that lampshade so very much.
11. I hate everyone and everything is bothering me and making my skin feel gross and I hate this couch where I’ve been lying for hours and I just want a shower but the thought of the effort of a shower makes me want to cry.
12. I was born to play video games on my phone. I am good at this.
13. I can’t read. The sentences are too hard. Remember when books?
14. I can’t watch TV. I’ll just scroll through Facebook in a fester of something unpleasant but even the blue hurts my eyes. Look at all the well suckers doing things, completely oblivious to their looming deaths and physical disintegrations.
15. I can’t even play games on my phone. My last stupid pleasure has been taken from me and I wish to lodge a protest with the universe.
16. Where are the drugs? Oh—I stopped taking them because they wrecked my stomach. Where is that old bottle with the prescription from two years ago?
17. I don’t even care about the drugs because I’m learning something from the pain. It’s making me deep and spiritual and I see shapes and colors. If I just roll with it I can surf the pain. I can.
18. No I’m not learning anything. I need the drugs and the pain needs to be killed.
19. Mommy? Oh dammit I’m the mommy. Oh just breathe like you’re in labor. It will pass. (Except there’s nothing good at the end, except maybe you will give birth to a horrible gooey thing like in the movie Alien that will come and bite your face off.) Will someone please feel sorry for me immediately?
20. Words are hard. My name is… something? Whatever. Name.
21. Do I have food poisoning? Wait, am I hung over–did I do tequila shots last night and have a great time that I don’t remember? Oh no, it’s just pain-barfs. (This is a new edit and I don’t like to have to add it, but the research is an ongoing process)

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.