Screw the Wong-Baker Pain Scale

chronic painThings are really bad. Twice in the last 24 hours I wondered if I should go back on Cymbalta. So, yeah.

I didn’t do much yesterday. At one point I managed to get out the lightweight vacuum and suck up the pet hair on the hardwoods, but Boomer didn’t make it to week five of obedience training, and any dreams I had of doing laundry were completely dashed by 9:30. By 11:30 a.m. I was asking Dan if the day was over yet.

It figures that I’d have one of my worst days on record just days after telling the physician’s assistant I didn’t need no stinking pain meds. My nerves were totally blown. Dan touched my back lightly, and it felt like he was dragging rusty razors over my skin and then squeezing a lemon over the lesions. The pain that’s always hanging around in my neck and shoulders wandered up into my ears too. It felt like a bad ear infection and an abscessed tooth had a pain lovechild and then that lovechild turned out to be twins—because asymmetrical pain is for people with clearly identifiable medical problems.  

I fought against the pain-induced gag reflex and won. Where’s my medal?

I couldn’t get comfortable on any piece of furniture. So I’d sit on the couch for five minutes, lay on the bed for ten, pedal at my FitDesk for three, and then pace the floors for five more. Lather. Rinse. Repeat.

At 8:30 pm I was exhausted, but the pain kept needling my brain, preventing me from getting rest. Dan suggested I take Benadryl, and the two neurons that weren’t totally fucking obsessed with processing pain signals recognized it was a good idea. “Tomorrow’s Sunday. You don’t have to be anywhere or do anything.” I downed some potassium-laced coconut water with the pills to stave off some the dehydrating effects and waited for the diphenhydramine cloud to dull my senses. 

I took three-fourths of the adult dosage and slept from about 10:30 last night to noon today. I got some much needed rest, but the needling pain is already coming back. And I can’t take the meds again tonight, because for some reason diphenhydramine only works once a month or so. If I were to take it again tonight, I would be totally wired. Plus, tomorrow’s Monday. So even if it did work two nights in a row, it wouldn’t be prudent to sleep through my job.

Tylenol doesn’t do shit anymore. Aspirin and Aleve upset my already upset stomach. Rx meds make me batshit insane. So I’m just over here waiting for my next medical test. That’s August 25, for those of you keeping track at home.

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Too Tired to Title This

Tuesday I had an appointment with a physician’s assistant at my primary doctor’s office. My blood pressure was 130/98.

I really just want to stop writing this post right there, because things don’t get better. And I’m tired. And I had a crappy day at work. And I’m stressed about money. But if I don’t get this shit out, I will pop.

One of the biggest questions I had for the PA was about the positive ANA test that popped up in my records. She searched for more details on it, verified that it came from one of my visits at Christie Clinic, but couldn’t tell me much more than that. So Dan (I dragged him with me to this appointment) suggested doing the test again and going from there. We agreed that seemed like the way to go.

“If that pops up positive again, I can refer you back to a rheumatologist,” she said. (She referred me to a new one a while back, but he didn’t treat fibromyalgia—which is what I thought I had at the time, you know?)

I also walked away from Tuesday’s appointment with a new diagnosis of IBS, and a referral to a gastroenterologist. Why? Because you can have negative blood tests for celiac disease and still have celiac. So odds are pretty steep that I’m going to be scoped before the year ends.

Here’s what the last 16 months of my life boil down to: Based on symptoms alone, I qualify for about 50 different autoimmune diseases. None of my blood work confirms I have any of them. None of my blood work confirms I don’t have any of them. Yay, let’s draw more blood. Oh, let’s put you through an EMG, GI scoping, a heart stress test, and…

 

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Fibromyalgia, Chronic Pain, and the Movie Cake

If you haven’t yet seen Cake but want to, you might want to bookmark this post for later.fibromyalgia chronic pain and the movie cake

Sunday afternoon, Dan and I were looking for something to do that didn’t require a whole lot of effort. 

“Hey,” I said, “Cake is still in our Netflix queue.”

A part of me wanted to see it when it was still at the theater—the part of me filled with delusions about being able to sit in a comfortable chair for 102 minutes, let alone an uncomfortable one. The sane part of me, however, knew I’d be better off watching it at home. And, luckily, the sane part of me still wins most of the time.

Five minutes into the movie, I was fighting tears. Jennifer Aniston was so believable playing the role of Claire Bennett.

“It’s making me hurt just to watch her,” Dan—who knows chronic pain in the form of psoriatic arthritis—said. I agreed. (In fact, since I saw the movie two days ago, I’ve been in a flare. Perhaps I identified with her pain a little too much for my own good?)

There were many things in the movie to which I could relate, but two really struck me: Claire’s hair and her clothing. It’s not that I want to go out in public looking like a giant sack of potatoes; it’s just that it’s the best I can do most of the time. On the rare occasion that I feel up to doing more to make myself presentable, I don’t want to waste my energy on something so superficial. I’d rather use my energy to make a meal or wash and fold some laundry. So combing the tangles out of my hair after a shower? Not on your life, man.

If you can tell that my hair has been blown dry, you know I’m having one of the best days I have had in 14 to 18 months. Or at least I want you to believe that I am.

Light a Candle

Here’s a little exercise that may help you comprehend how chronic pain affects everyday life for people. Go grab a butane lighter (one of those multi-purpose deals) and a candle. Now light the candle with the lighter. Can you even imagine not being able to make one of those things work? I couldn’t either. Until yesterday.

My hands are so weak right now that I have to use both of them to produce a flame. I need one hand to press the safety mechanism and the other to engage the trigger. Once the flame is rolling, I may or may not be able to connect the fire with the wick of the candle. This simple task used to require a thumb, a forefinger, and barely a thought.

Now imagine making a few of these can’t-do discoveries every week for a year or more. The pain drains you of everything—will, muscle tone, positive attitude.

My luxurious bath towels are too heavy to hold, so I have to go back to old skimpy ones.

I get winded trying to roll over in bed. Sometimes I can’t muster the energy to change position until long after my legs have started aching.

Do I get depressed sometimes? Fuck yeah, I do. You would too.

People with Chronic Pain Judging Other People with Chronic Pain

Back to the movie though. At some point during the film when Claire was trying to get her hands on more opiates, Dan told the TV that Claire needed to at least try. I immediately came to this fictional character’s defense. A few minutes later, though, and I was the one being dismissive of her struggle. 

Oh, well at least she’s got physical scars and a clearly identifiable cause for her pain. 

“Why are we like that?” I asked Dan. “If anyone’s going to be able to empathize with someone who has chronic pain, it’s going to be someone else with chronic pain, right?” 

It wasn’t really about empathizing with a fictional character, though. I was expressing my frustration that her story wasn’t exactly like my story. Because I want people to get me. I want my own validation. Screw Claire Bennett. Whoever she is.

No wonder people with addictions, chronic pain, and invisible illnesses become jaded with support groups. You have to go in with the understanding that even after sharing the most intimate details of your personal story once a week for months or years, not one other person will know what it’s like to be you. And people who’ve never been to a support group in their life will ask helpfully, “Have you tried going to a support group?”

Wait a minute. Do I mean that in addition to losing a child, getting a divorce, paying bills, overcoming the constant pain and disabling results of the wreck, fighting drug addiction, taking a shower, and suppressing thoughts of suicide, Claire Bennett has to dig even deeper and figure out by herself how to manage her own expectations at group therapy?

Yep.

And the kicker? Group therapy, like the pool therapy that torments Claire, was probably required by her doctor. She has to prove to her prescribing physician (someone who probably only intellectually understands what chronic pain is) that she’s deserving of a few meager moments of opioid-induced respite. How does she prove her worth? By SUFFERING.

Then she has to hide her addiction to said painkillers so people don’t label her a pillhead and make it even harder for her to find relief.

Anyone still wondering why Claire squirreled away meds behind that painting in the hallway? Anyone still looking down on her for making Silvana drive her to Tijuana?

I don’t take prescriptions for my chronic pain. But what if I need them someday? Is this what I have to look forward to?

The End

So eventually Claire decides to kick the painkillers, offers conciliatory vodka to her group therapy leader, and gives water therapy another go. She brings Nina’s surviving child (Nina is the woman from group therapy whose suicide haunts Claire throughout the movie) a shark kite and a cake for his birthday. Then the movie ends with Claire finally sitting upright in the passenger seat of a moving vehicle, presumably for the first time since the car accident that killed her own son. If all of this gives you warm fuzzies and fills you with optimism for Claire’s future, congratulations! You still have no idea what it’s like to live with chronic pain.

Just because Claire’s got her shit together now doesn’t mean she’ll have that luxury tomorrow. Perhaps the hardest part of living with chronic pain is having a few good days, and then having that progress ripped right out from underneath you without cause or explanation.

 

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Sunday Dinner: Homemade Lasagna

IMG_0378Dan and I make a pretty awesome team in general, but we also work well together in the kitchen. Team cooking is perfect for me because I can participate without using up all my energy on one single task. Plus I get to hang out with my husband, who is awesome.

Today we made lasagna. He did all the prep—including making ricotta from scratch! And I did the assembly work. Then we ate spinach salad and lasagna at our dining room table. 

After eating every meal for a year and half on the couch in front of the TV, having a real meal at the dining room table never gets old. In fact, I just about cry every time we do. Everything makes me cry though, which I believe is related to my health condition.

But I don’t really want to talk about that today. I’m weak, but in a decent headspace. I’d like to keep the positive attitude for as long as possible.

One of the reasons I love posting pictures of food on this blog is that it serves as proof that there are still some things that I can do. It’s a record of accomplishments. There’s no recipe to go alongside this photo though. Making lasagna is art. It’s never the same; I do what feels right, building on the basics I learned from my mom when I was a kid. So, no instructions to share today. This is just me saying, “Look what I can do!” 

 

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Boomer’s First Day of School

Boomer - black lab and irish wolfhound mixI have one outing in me a day, if that. (Some days I’ve got nothin’.) Today’s outing was going with Dan and Boomer to obedience classes—something Boomer desperately needs. He’s young and incredibly strong, and I love him fiercely, but I struggle getting him to listen to me. It can be overwhelming and frustrating for someone without any health concerns.

With my intense fatigue, muscle weakness, and occasional dizziness, his jumping up on people is easily the most bothersome of his bad habits. I can see him coming at me, but I’m unable to get him to stop. I’m always worried he’ll knock me over and I won’t be able to scrape myself back up.

He’s got four or five more classes to go yet, but there was one moment today that melted my heart. We practiced recall, where one of the training staff took Boomer to the middle of the room, and our job was to call him and get him to come back to us. So I bent over, used by best dumb voice, and called him. He came back to me with his tail swishing so hard his whole butt was wagging.

That’ll make any bad day better.

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