Where’s Our Representation?

The big hotness in Hollywood right now is “diversity.” All races, ethnicities, orientations, and whatnot are being represented in film, television, stage, video games, novels, and more.

So where’s the representation of chronic invisible illness sufferers? People like me and you, with Lupus, Fibromyalgia, Dysautonomia, etc.? It’s true that some better-known illnesses like Depression and Multiple Sclerosis are featured sometimes on TV dramas — particularly the ones that take place in a hospital setting — but when was the last time you saw someone in a movie or on television suffering from Crohn’s Disease or Chronic Fatigue?

(Just don’t get me started on House. I will always despise that show for the stupid “It’s never Lupus” meme it spawned. To this day, you can look up “Lupus meme” on Google and the vast majority of results will have Hugh Laurie’s smug face on them. Thanks to House, more people know Lupus as a punchline than a real, life-altering, life-threatening disease.)

It’s said that nearly half of all Americans suffer from one or more chronic invisible illnesses. Nearly half! That’s incredible. But the public at large still knows so little about these diseases that one of two things is happening here: either Hollywood has no idea how to depict a chronic invisible illness, or they choose not to because they believe that things like a heart attack or a cancer diagnosis provide better dramatic fodder.

How can everyone be getting representation in pop culture these days if the day-to-day reality of nearly half of the American population is being ignored? I wonder how long it will be before we get equal representation. What we need is a prominent Hollywood writer or other creative who’s willing to learn about Lupus, Fibro, or any other chronic invisible illness and then show what it’s really like, with care and attention to detail.

And that’s a problematic notion for TV and film, because it couldn’t be a one-off story arc. If it’s talked about once and then never mentioned again, then it’s completely missed the point. Chronic illnesses never go away. You don’t have to talk about them all the time, but you can’t pretend they’re not there, either.

Right now, the measurement of chronic invisible illnesses in entertainment is at zero. We’ve got a very long way to go.

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I Feel Bad for My Kids

You know how when you have a terrible cold or the flu, and all you want to do is stay in bed? If you’re young or single, you might be able to get away with that, but parents are a no-go. There are kids and responsibilities and stuff. Now imagine feeling sick every single day of your life — while trying to be the parent your child needs.

This is what life is like for chronic, invisible illness patients who also happen to be parents. You love your kids, you would do anything for your kids — even die for them — but you’re saddled with severe limits to what you can and can’t do for or with them.

I have two children, both under the age of ten. I have a brilliant, sweet son, and a beautiful, tenderhearted daughter. They’re funny and crazy and smart and wonderful and I love them unconditionally. But I feel bad for them, because they never know which “Daddy” they’re going to get.

Will today be a day for fun, playful Daddy who rushes into the room to tickle them and hug them and play with them? Or is this a day when of sick Daddy, who can’t concentrate on what they’re saying, can’t move a single muscle without hurting, and seems like he’s in a bad mood because he can barely keep his eyes open? That second guy is seen a lot more often than the first one.

It’s not fair to them. They deserve a dad who can do all of the usual “dad stuff.” They don’t deserve a dad who can’t go outside and play because he has to avoid direct sunlight. They should have a dad who can give them quality time, not one who’s either too tired to move or desperately trying to find work to help pay his endless medical bills (and all of the other bills that are affected by an inability to work consistently).

Right now, “quality time with Daddy” usually equates to sitting next to me on the couch, particularly on the bad days. I talk to them and listen to them and cuddle them (my daughter especially loves cuddling!), and they’ll bring me drawings and Legos and other stuff they’ve made, looking for approval. Of course I always love everything they do and rave over their creations. Sometimes they’ll watch me play video games, or I’ll watch them. On really good days I might play a board game with them.

But that’s about all I can offer. There are many who tell me that the love I give them is enough. That it’s all they need.

That’s not reality, that’s a song lyric. A fairy tale lens clouding up real life.

They need love, yes, absolutely. But they have tangible needs, too. They need a normal dad who can do things with them and for them. Instead they’re stuck with this sick, grumpy guy. And the worst part might be that most of the time, they don’t realize that this isn’t what other kids have. They have no idea what they’re missing out on.

I’m not on my deathbed or anything; I do okay most of the time. But on those bad days when I can’t function, my heart is flooded with regrets because my horrible, invisible, chronic diseases are affecting my kids just as much as they affect me.

And that’s not okay. So I fight. And I’ll keep fighting. I’ll rail against my limitations. I’ll push myself ever-harder. Because I have to hope that one day things are going to get better and easier. And because those two kids deserve it.

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Fibromyalgia Loves to Mess With You

When you’re feeling a symptom that’s new and different… How do you know when there’s something really wrong? How do you know when it’s time to see your doctor?

The problem of Fibromyalgia is that you exist in a state of constant sensory overload — in an internal sense. In other words, your own body is forever giving off loud signals. Often it can be so deafening that it drowns out external stimuli.

(Incidentally, if you live with or know someone that has Fibromyalgia, please go easy on us. We don’t mean to outright ignore you, be distant, behave in a socially awkward way, or become completely self-absorbed at times; sometimes the “noise” our bodies gives off just makes it impossible for any other signals to get through.)

It’s very common, in my experience, to feel new pains, symptoms, or sensations on a frequent basis. The issue that arises from this is that it can be hard to tell when to take one of those new sensations seriously. (Not to mention that you might find yourself wondering if you’re losing your mind.)

Example: Right now, I have a strange pain on the top of my foot. It appeared yesterday out of the blue, and it’s making walking a little harder. It feels like a couple of bones are grinding against each other. Did I injure it in martial arts class? Did I hit it on something? Did I sit weird and affect a nerve somewhere? Or is it simply a random cramp that will go away? I have no clue. Should I call the podiatrist? Or wait and see what happens?

I usually opt for the second route, usually to the displeasure of those around me. The thing is, if I went to the doctor every time there’s a weird new pain or symptom, I’d be there almost every day. Because with Fibromyalgia (and Lupus, and POTS), there’s always something.

The really aggravating “somethings” are the ones that get worse… and then get better, entirely on their own. Which usually happens after you’ve had something wrong for a while, gone to the doctor, had them run tests only to find nothing, and then a few days later the whole thing suddenly, inexplicably self-corrects. You can practically feel the people around you thinking about how much of a hypochondriac you are — because you’re thinking it about yourself!

I can only speak for myself, but it’s late afternoon or evening before I can adequately assess how I’m feeling on a given day. Maybe my shoulder is more sore than usual today because of something I did yesterday. Maybe it’s indicative of a flare or another bigger problem coming on. Or maybe I just slept on it in an awkward way. I can’t say one way or another until I’ve had time to live with it a while, see how it reacts to my day-to-day routine, determine if it’s improving or getting worse… And by then, it’s too late in the day to see a doctor, anyway. Plus, many days I wake up with brainfog that doesn’t clear until at least mid-afternoon — if it clears at all. How am I supposed to know how I’m feeling if I can’t even think straight?

So. How do you know when to see a doctor? I really don’t know. If you’ve read my book, you know that I’m “Mr. Listen-To-Your-Body,” so you’d think I’d have this process all figured out. Something like, “If it feels this bad, that’s worthy of a doctor’s visit. If it’s less so, then wait it out.”

But I don’t. I’ve got nothing. I’ve erred on both sides of this equation more than once. The best advice I can offer is to (say it with me) listen to your body and do the best you can with what you’ve got.

Fibromyalgia or not… Do you have any history with trying to know when it’s “bad enough” vs. when it’s a bizarre fluke that will go away on its own? Please share your experiences with this, I’d love to hear them.

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Topical Painkillers

Have you ever wished that you could rub a painkiller into your skin instead of taking so many blasted pills? If only topical painkillers — ointments or creams that contain pain medication — were a real thing.

Well, they’re starting to be. I’ve recently come into possession of two different kinds, both of them prescriptions. It occurs to me that this presents a unique opportunity. Why not try them both at once and see which works better?

I have constant pain under my shoulder blades, and they’re bothering me quite a bit right now, so I’ve applied one topical painkiller to one side, and the other to the other side.

Let’s meet our contestants!

Pennsaid

First up is an ointment called Pennsaid. As I understand it, it’s very new to the market, only recently having been approved by the FDA.

Normally this stuff is obscenely expensive, but my rheumatologist has a deal worked out with a North Carolina pharmacy where either they’ll get your insurance to cover most of it, or they’ll simply charge you $10 for a bottle if your insurance won’t play ball. My case fell into the latter category.

So for ten bucks, I got a 3.8oz (112 gram) bottle with a pump dispenser on top. The active ingredient in Pennsaid is “Diclofenac sodium.” I don’t know about the sodium part, but I know that Diclofenac (in pill form) is commonly prescribed to reduce inflammation.

Pennsaid has an appearance and consistency very similar to baby oil. It’s a clear, runny fluid — thicker than water but much thinner than cream. The instructions that came with the bottle — which were extensive — state that you should pump it twice and then rub it in well to whatever effected area you’re applying it to. Then wash your hands thoroughly after.

Disclaimer: The Pennsaid bottle and instructions say that it is intended for knee pain, and not recommended for other uses. My rheumatologist assured me that, like many other drugs on the market, that is a legal requirement to protect the company that makes it (Horizon Pharma USA, Inc.) and that the ointment can be used for other purposes. He did suggest not applying it anywhere on my head! Not that I was going to.

It does not say how long it will be before you feel the effects, nor how long the effects can be expected to last.

Lidocaine Ointment

This one is a generic, and I don’t know what the brand name version is. To be honest, I’m still a little fuzzy on how I got my hands on it or who helped me get it. I clicked on ad on Facebook that talked about pain management for chronic pain sufferers, filled out a little information — I thought it was for a research study — and then one day I got a phone call about it. I thought they were trying to sell me something, but I dutifully answered their questions. Next thing I know, I’m getting notifications that an order has been placed at a pharmacy I’ve never heard of, my insurance is covering this one (presumably because it’s a generic), and I can expect a package in the next day or two.

And so I received a surprisingly heavy little box that contained not one but two bottles (seen at the top of this page). Or well, a bottle and a jar. This topical painkiller is applied in two parts, apparently. I know this not because there were detailed instructions that came in the package (there weren’t), but because there are “Step 1” and “Step 2” stickers applied to the lids.

The first step is another pump bottle, this one labeled “5% Baclofen” and “5% Diclofenac.” (Hey, that sounds familiar.) This stuff is a white cream, very much like the kind of lotion you’d put on dry skin. Dispense a specific amount of it, rub it in, and wash your hands.

Step 2 is the jar, which is large enough that it could almost be called a tub. Inside is something similar in appearance and consistency to petroleum jelly. This container is labeled “Lidocaine 5% ointment.” You’ve probably heard of Lidocaine; it’s what dentists typically use to numb your gums before working on your teeth. Grab a little of it, slather it over the same spot where you rubbed in the first stuff, and (you guessed it) wash your hands. 

Similar to Pennsaid, no details are provided about when it will take effect or how long those effects will last.

And the Winner Is…

Rather unexpectedly, I seem to be getting better results from Pennsaid. I didn’t see that coming, because both medications have Diclofenac (the inflammation reducer), but the Lidocaine ointment comes with two other painkillers as well. Strange that the one that’s only got Diclofenac produced the superior results.

I should point out that this exercise was hardly scientific. It’s very possible that the pain under one shoulder blade was less than the other before any ointments were applied. It’s also possible that I may have used more or less than the proper amounts of the various ointments.

On the whole, I’m encouraged and excited that powerful, prescription topical painkillers are finally becoming a thing. Products like BenGay and Aspercreme are great and all, but they don’t usually produce sufficient results to make using them regularly worthwhile.

That said, in all honesty, I think I’ve gotten more beneficial results from BioFreeze. But admittedly, I probably haven’t used either of these prescription ointments enough yet to know their full potential.

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What a Lupus Flare Feels Like

A flare is one of the hardest things to describe about having Lupus. As a writer, that’s a maddening thing. A large part of what I do is finding just the right words to describe something. Feeling these crazy sensations and not being able to convey what that’s like… It does not compute.

One reason it’s hard to describe is because, in my experience, no two flares are ever the same. The first one I ever had caused my hands and feet to swell until it felt like they were going to explode. I’ve never had that sensation again. My usual flares present as red rashes on my arms and legs, along with extra fatigue, muscle pain, and brainfog. I’m having one right now, which is mostly those last three things, but in excessive amounts.

So, I turn to my old frenemy, Prednisone. Or as Lupus patients like to think of it…

…”Satan’s Tic-Tacs.”

I’m fortunate in that my doctor allows me to regulate my Prednisone use myself. I have a standing prescription to always keep some on-hand, so that when a flare strikes, I’m ready. But I still hate taking it.

Yes, Prednisone is horrible. Yes, it’s also helpful. It typically gets rid of my symptoms, but it also makes me feel like this:

And also this:

And usually this:

The weird thing about this particular flare is that none of those things are happening. And my symptoms aren’t really subsiding. This is a first. Does it mean the flare is stronger than a high dose of Prednisone? Yikes, what a thought.

But there’s more. In my book there’s a chapter called “Prepare for Weirdness,” where I talk about odd, inexplicable symptoms. This flare has given me a new one: Nothing tastes good. I get hungry, I want to eat, but everything tastes like cardboard.

Explain that.

This one is also doing its best to bring Depression back into the game. Depression is usually kept in check by my meds, but it’s just a power struggle in the end. If the flare is stronger than the anti-depressants, guess who wins?

And without over-sharing… Let’s just say that stomach issues are becoming a big problem as well.

But like I said at the beginning, there’s other stuff going on inside, strange feelings I don’t know how to describe. I’m not talking about emotions. This is physical stuff. Stuff that just feels… off. A kind of pain, maybe, or a weird imbalance of how things are supposed to be. It’s like the default factory settings have been tampered with, and now nothing is working the way it should.

I wish I could explain a Lupus flare to someone who’s never had one. I’ll keep trying.

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