There are days when pain wakes me up.*

But most mornings start with a cat or an alarm.

There are a few moments between sleep and waking–when the sleep paralysis is still wearing off, when my whole body doesn’t know it hurts. But then the pain rises. My trigger points** feel like they’ve been burned in a kitchen accident. My back tells me whether I will limp, whether I will be able to bend over; my neck tells me whether I can turn my head. I stretch, hoping that the muscles under my scapula and my calves won’t start to seize, but since I haven’t had my morning muscle relaxers, they do.

I check to see if something will give–my right ankle usually pops, as does an arthritic toe. Sometime my neck cracks; every once in a while, my sacrum does.

My lungs and eyes and nose tell me about the pollen levels before I see the weather report.

It takes a moment before I can turn on the light or check my phone, because my hands are either still asleep or frozen into a claw, which is what someone with Viking Hand (Dupuytren disease) has all the time.***

This whole time, a song has been playing in my head, because one always is.**** It’s usually the same song that has been playing all night, there when a cat jumps on the bed, when my arm falls too asleep for me to stay asleep.

Karma Trivia

*When my asthma wasn’t under control (before I had insurance), I would often wake up in a dream about orchestras tuning up–it was actually the wheezing in my lungs.

**We have given up on trigger point injections. Not just because they don’t really work–also because the last two doctors who tried them couldn’t get the needles in–my muscles were too tight. And the more they pushed, the more my muscles would spasm. One doctor, looking at my back, asked me if I’d seen Alien. I assured him that an alien was not going to jump out at him, even if it looked like it might.

***It’s a heritable disease that runs in Scandinavian families. My grandfather had it.

****Having a song in your head all the time (as opposed to the occasional earworms) is now understood as a form of OCD. This morning’s song, the Carpenters’ version of “Breaking Up is Hard to Do” inspired the title of this post.

Yesterday, with the scheduling staff person at the medical center.

Me: Okay, see you in six weeks for more injections.

Her: Great!

Me: Oh, wait. Actually I’m going to see you tomorrow–I have an appointment with whatshername.

Her: Why do you have two sports medicine doctors?

Me: He does my hips; she’s got my shoulder.

Yesterday in Conversations with My Doctor:

Him: I see you saw my colleague for a UTI a few days ago. She sent me a message afterwards, actually. I’m trying to remember what it said.

Me: Was it about how I wouldn’t go through my medication list with her because I knew you would go through it with me today?

Him: Yes–that’s it. Is that what you told her?

Me: I said, “Paul is very thorough.”

Him: And she let it go? She’s a . . . very strong woman.

Me: So am I.

I can’t count how many times I’ve been dying.

I don’t remember all of them–I started being hospitalized for asthma when I was two.

I don’t remember my brother being told to say goodbye to me when I was 21 and suffering from pneumonia, but he did. (My illness also came up in a faculty meeting–my department apparently discussed who would represent it at my funeral.)

All the times I’ve struggled for air run together, in a haze of wheezing.

Every winter until I got insurance (in 2000) was awful; even when I wasn’t in ERs, I routinely woke to what I thought was an orchestra warming up. My sleeping brain thought that was what my lungs’ struggle was.

I am incredibly lucky to have access to care now–and treatment for a deadly condition.

And that’s what I think about when people tell me that I’m probably getting too much treatment.

This week, I performed my Chronic Pain: A Comedy show again. Since people routinely try to diagnose me after shows (as if my comedy is just a secret ruse for free medication consultation), I tried to forestall it this time. When I read out the list of things I’ve tried, I said I was doing it so the audience wouldn’t feel they needed to ask if I’d ever heard of pot, etc.

I didn’t get that response this time. Instead, two audience members (independently) approached me the day after the show to say that I was taking too much medication.

For example, a student asked if I’d heard of “medicalization”–an idea that gets brought up when people say we shouldn’t try to treat problems with Western medicine. He told me that he has had mild hypertension for 10 years, but he doesn’t need meds for it.

Ummm, ok.

Do I like taking (and choking on) a bazillion pills a day?

Nope.

But do I like not having to go the emergency room for asthma since I started taking those meds?

You better believe it.

Have I gone off pills that weren’t working or that were giving me bad side effects? Yup–sometimes even when my doctors didn’t initially want me to.

The ones I’m on all do something.

When I don’t take my magnesium and potassium supplements, my face literally spasms. On the left side.

When I accidentally didn’t put one of my GERD meds in my daily pill container and went without it for a few days, I thought I had cancer or that the acid and bile had just burned a hole through my esophagus. The pain was so bad that I couldn’t sleep. For days.

I know both of these gentlemen were trying to be helpful.

But I had to fight to get treatment. And even after I got insurance, I had to fight for treatment for some of my problems.

Your non-medical opinion, based on a comedy routine, is just another way of telling me it’s all in my head.

Want to see the routine? It’s here.

My back always hurts–that’s because I have degenerative disc disease and neuromuscular problems.

I am currently in PT (ongoing) for my low back and my TMJ.

Over a month ago, though, my back got worse–I thought it was just prepping to go out, like it did over Christmas break. One day, I wore a brace to teach so I didn’t bend over and exacerbate it.

But on February 13th, I woke up in crazy pain. My physical therapist worked on it that day, but it didn’t get better. Over the next few days, my massage therapist and my chiropractor also worked on it, to no avail.

And then I found myself in the ER–they gave me the usual shot for a back that’s going out and sent me home.

And the next day, I got the same shot again at my doctor’s office, because the first one hadn’t done anything. My doctor gave me oral versions of Toradol (the shot) to take through the week. At this point, I realized that the pain was really familiar–it was like when I herniated a disc 20 years ago.

I was able to drag myself to work, but my back was still awful.

So on Monday afternoon, my doctor gave me another shot and sent in an urgent request for an MRI.

Here’s what it said–three of the discs are worse than they were the last time I was checked there. However, one of them has a big bulge–it’s pressing on the nerve root in my spine.

Now I have an urgent referral to the pain clinic. My doctor would like to try injections to reduce the bulge, but I won’t know more until I get in to see the specialists.

When this happened 20 years ago, I didn’t have insurance (even though I was a full-time graduate student and employee of a university). Thus, there wasn’t much I could do but suffer.

When I started work at Davis, though, I had access to care, because my union had fought for that.

Still, it took a year to get me into an MRI. Because no one believed me. I was young and thin. They told me to do yoga and to exercise. They said I could lose five pounds.

When I finally got the MRI, I was scheduled for an emergency surgery the next day. A massive herniation was pressing way into the spinal column, causing nerve damage that has never healed.

Me: I TOLD YOU SO!

My surgeon bragged about how big the herniation was–he said he’d showed it to everyone.

It was probably so massive because it had been allowed to get bigger for over a year.

So this sucks. And it’s affecting my mood and cognition and abilities.

But I’m also thankful for healthcare, for a doctor who knows and trusts me and who sent a message about the MRI results late on a Friday night, so I would know what they revealed on the same day he did, for options for what to do now–and I’m not worried if they say surgery–cause last time it took the average pain from a 9 to a 6, right away, and for my friends who are offering me so much love and support right now.

After working all week in incredible pain, I slept for 11 hours last night. And I’m ready to face more work.