Can you hear me now?

When I was a kid, I had this nightmare. I was at some kind of fair being kidnapped by a stranger. My dad was right there in front of me. I screamed and screamed, but I couldn’t get my dad’s attention.

Was my voice too quiet?

Was there too much background noise?

Was my dad not listening?

I live the anxiety I felt during that dream every day now. I try to be my own advocate about this health shit, but the more I scream the less I’m heard. The depression’s made itself nice and cozy, and I’m terrified that someone will try to treat it again. (Fucking evil-ass Cymbalta.)

But I don’t think I need medicine for depression.

They all say that, don’t they?

I tend to think that I have a legitimate reason to feel this way. I’m not crying for no reason. I’m crying because I’m in pain, sinking financially, and terrified that if my mobility issues persist (some days typing is such a struggle), I might lose my job. I’m crying because I get dizzy and spatially disoriented trying to make Kraft dinner. I’m crying because none of my clothes fit me anymore and I can’t afford to buy new ones. 

Lots of people in similar predicaments talk about how they wouldn’t wish [insert chronic health-related suffering thing here] on their worst enemy.

Fuck that.

I wish suffering like this was compulsory for everyone on the planet for, like, six months to a year.

Sorry, not sorry.

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Pain Level: FML

This morning as I was using the towel bar to lower myself onto the toilet, I had a thought. What if this towel bar gives out?

Every inch of me is screaming with pain. I can hardly move, and I’m reduced to asking Dan for help with the most absurd things. “Hey, if I put the chicken patties in the toaster oven, will you assemble the sandwiches?”

When things get this bad, I can’t help but try to identify a reason for my suffering. I let myself get cold yesterday, sitting outside while Dan did some yard cleanup. Maybe my muscles don’t like the cold. I had an alcoholic beverage three days ago, maybe it’s taking this long to give me a hangover? My food diary shows I haven’t taken a diclofenac in a week, maybe I’ve got some inflammation that’s raging out of control (even though none of my numerous medical test results point to a problem with inflammation). I started having two cups of coffee a day. Maybe the coffee creamer I use is poisoning me.

It’s hard to accept what’s more likely true—that nothing I’m doing is causing the pain and nothing I can do will make it go away.

That’s why I wish people would stop fucking asking me if I’ve tried going vegan, or cutting out carbs, or eating only organic, or exercising more. In the past 18 months, I’ve tried everything, okay? I don’t want to feel like this, and I certainly don’t enjoy every little aspect of my life being scrutinized like I somehow brought this upon myself.

Besides, if a random alcoholic treat or piece of candy with Yellow #5 in it or a processed chicken breast was so dangerous, the entire fucking world would be ending. Your garbage men would have to quit their jobs because the noise from the truck’s compactor would make them puke. The people stocking the shelves at your local grocer would be fired because they couldn’t lift a 12 oz. can of beans above their belly buttons.

What really gets in my craw are healthy people admonishing people with illnesses over their dietary choices. “Oh, I went 100% gluten free and I feel so much better. You’re not doing yourself any favors by eating that PB&J.” 

In my mind I’m like, Let me get this straight, your perfectly healthy self went gluten free and now you feel even better?

Go die in a tire fire, asshole.

This kind of exchange with people has been bothering me for a while. I’ve just been absorbing the rage and convincing myself that people who do this “mean well.” But today I’m like, why is that I’m always the one who has to assume the best of Person B in these situations?

See, I have always been terribly hard on myself, so the first thing that ever came to my mind when my health started deteriorating was that I was doing some horrible thing to myself. When someone comes along and asks these “helpful” diet and exercise questions, it’s insulting.

Whatever’s wrong with me just is. 



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I’m a Wall Walker

Model FallLast weekend my mom was here to help us with some painting. I was able to help her in the master bedroom as long as I took plenty of time to rest in between short spurts of rolling. (Trim work was out of the question for me.) I’d get half a wall done and then have to rest on the bed for 20 minutes before picking up the paint roller again.

When we’d wrapped up the room, I got up off the bed. I felt something cold and wet on my palm and exclaimed, “Crap! I’m an idiot!” I had absentmindedly put my right hand on the freshly painted wall to steady myself, because the day’s exertion left my muscles cramped, my back stiff, and my balance questionable.

I looked disdainfully at my right hand print for a second.

Dan yelled from the kitchen, “Put your hand in the wet paint, didn’t ya?”

Mom quickly rolled over the mistake.

And that’s when it hit me. My default is to put my hands on the walls and furniture so I don’t fall down. This is not normal.


Today, through the miracle of technology, I attended a meeting from my home office. It only lasted about 20 minutes, but I had to leave my desk immediately after it ended. I was just too sore to stay in the office chair, so I grabbed my laptop and cell phone and headed for the love seat in the living room. As I walked down the hallway, my left quad was all like “Nope!” and my leg buckled under me. 

Under normal circumstances, I’d have steadied myself using my hands and the walls. But I happened to have my hands full, and dropping a few hundred dollars worth of laptop to save myself wasn’t an option. So what’s a klutz to do? Scream “Shit!” and lean her upper body in the general direction of the closest wall.

It worked, sort of. I didn’t crash to the floor, and I didn’t drop my laptop—but I can now add wicked shoulder pain to my laundry list of aches.


Back when I still lived in Indianapolis and before I got sick, I would do a Jillian Michaels workout two or three times a week. During one of the warm-ups, she would get all judgy about jumping-jacks. “I’ve got three- to four-hundred pound people who do jumping jacks. Everyone can do jumping jacks.” So I tried to do a single jumping-jack in my living room yesterday. 

Not only did I fail to complete the jumping-jack, but—you guessed it—I lost my balance and fell into the wall on purpose. Because nothing makes me feel as helpless as not being able to get myself up off the floor.

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In Defense of WebMD

colonoscopy humorWhenever I tell Dan I’ve been reading health-related stuff on the internet, he rolls his eyes at me. I get it; I hate internet quackery and pseudoscience as much as the next person. And I think self-diagnosis via WebMD is absurd.

But I will say this: when you’ve been abso-fucking-lutely miserable for well over a year, it’s only natural to go searching for answers online. I haven’t been relying on WebMD and Isabel Symptom Checker alone though. As you know, I’ve been to lots of doctors and had lots of tests done—some of them twice!

I’m not saying I’ve figured anything out yet; I’m just saying…

There is value to this online research beyond the ability to commiserate with peers. I’ve been reminded that some of the things I considered personal flaws could actually be symptoms. Like hair loss, for example. My hair has always been pretty fine and wispy, but it’s falling out at increasingly alarming rates these days. That can be a sign of malabsorption.

“I think I have celiac disease,” I announced to Dan sort of seriously.

“Okay,” he laughed.

“I’m for real,” I said. “I was reading some stuff, and these people were describing my poop in perfect detail. You’ve seen all the hair I’m losing. I live on anti-diarrhea meds these days.” (Actually, “live” might be overselling. I tend to hover in the slightly less cheery state of being I refer to as “microwaved death.”)

“Maybe,” he shrugged.

I asked my primary doctor to draw blood and test for celiac disease several weeks ago. She did, and the test came back negative. But negative blood tests are possible with celiac disease.

My gastroenterologist consulation is next month. At this point I’d love to find out I have celiac disease. That sounds so horrible to say out loud. But it’s fixable. Every other autoimmune thing on the table has no solution. I want a solution.

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My Experience with Diclofenac for Fibromyalgia

FIBROMYALGIAAfter the EMG, I broke down and contacted my primary doctor’s office for something for my pain. In my communication I noted that I wanted an as-needed prescription. (My biggest fear was that they were going to try and put me on something insane like Lyrica. It’s pretty highly prescribed for fibromyalgia, like Cymbalta, and we all know how adamant I am about never, ever touching Cymbalta again.) 

She sent a prescription for diclofenac to my pharmacist. It’s an NSAID, but only available by prescription. I’ve taken it twice, and IT IS HELPING.

After the first pill, I went from about an 8 to a 7.5 on the pain scale. After the second pill, which helped me get a good night’s sleep, I’m at about a 4.5. For people who spend a typical day at 0 on the pain scale, that might not sound great. But for me? I haven’t felt this good in about a year. 

Also, I’ve gained fuller range of motion in my neck, shoulders, and upper arms. 

I’d write more about all of this, but I have no idea how long it will last. I’m going to celebrate by vacuuming my house.

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