When Patients Know Best

Chronic Pain

This is just a short blog to recommend an episode of This American Life, “Something Only I Can See.”

It’s about a woman who first is convinced her family has a rare genetic condition.

And who then is convinced she has a second one.

The doctors don’t believe her either time.

I’m lucky, at this point in my life, to has a GP who believes me. I have lots of rare things, and I’m that person who has the rare side effect–the one that isn’t listed in the commercial.

When I go to the ER for abdominal migraines, I have to educate everyone about it. Since I’m never asking for pain killers, they don’t fight me. God help me if I did need some to fight this, though.

This story reminded me to keep explaining and to keep pushing. Lightening does strike twice for some of us.

Share
0 comments

I’m literally drained

Chronic Pain

This post isn’t about how I taught straight through the summer. About how next week, my 4 UCD classes start or about how my Los Rios classes are in their 5th week.

This post is about literal blood draining out of me.

Last month, I had a really heavy, long period, which I didn’t enjoy, since I’m not even supposed to have periods on my current birth control.

But then, two weeks after it ended, on 9/3, I started bleeding again. The first week was really light. The last two weeks have been excessively heavy.

Like bleeding through my clothes heavy.

Like I’m going to need to do a GoFundMe for new underwear if and when it ever stops heavy.

Like the bathroom turning into a crime scene heavy.

Like the doctor’s assistant telling me that if the clots get to “small lemon” sized, I need to head to the ER heavy.

Meanwhile, my gyno can’t see me until the very end of October.

We’ve determined that my blood work is normal, and she’s ordered a vaginal ultrasound to check for fibroids.

I’m exhausted, crampy, and cranky.

Unlike Dave Foley, I do not have a good attitude towards menstruation.

https://youtube.com/watch?v=Cm4FdyWaOCo
Share
0 comments

An objection

Chronic Pain, Misc–karmic mistakes?

The other night, I had a strange dream.

One of my healthcare specialists recommended that I join a secret upscale Davis orgy group. He said it would make me feel better.

My first response was “no. I’m so ashamed of my body. I don’t want a whole room full of people to see it.”

He talked me into joining anyway. Unfortunately, my dreamscape didn’t feature a meeting.

I’m sad about what I said about myself.

Share
0 comments

Rude Awakening

Chronic Pain, Misc–karmic mistakes?

I woke up convinced I was ill, not sure if I’d somehow managed to get a bad cold or the beginning of Covid.

What a relief to discover that I’m ill because the fires are closer and the smoke is hurting my throat, eyes, and lungs!

It’s also 110F today.

(Seriously, 2020, go fuck yourself.)

Share
0 comments

The Convergence

Chronic Pain, Misc–karmic mistakes?

Graymalkin, being blind, doesn’t always know how the bathroom works. He often digs a hole in our tiny back patio space, only to stand in it while pooping outside of it.

About once a month, he misses the litter box.

And when he does, it’s spectacular.

He always manages to let loose what seems like a pint of pee, which goes all over the bathroom. He then tries to “cover” it, which means swiping at the tile floor, spreading it around even further. The pee footprints then go all over the house.

When I woke up this morning, I could smell pee, but it wasn’t my primary concern. My back was really bad yesterday. I could get out of bed, however, to discover where the smell was coming from.

Since I didn’t think I should tackle that with a bad back, I closed the bathroom door and went to put paper towels over the paw prints.

And that’s when my back locked all the way up.

Dante will get home from work soon. I wonder if he’ll want to clean up piss or take me to the doctor first.

Share
0 comments

I may have peed myself yesterday

Chronic Pain

It’s weird to not know for sure.

Let’s back up.

On Monday, in preparation for an endoscopy, I have a Covid test. It didn’t hurt, exactly. Instead, my body was hyper-aware that something was in a place it should not be. Thus, my body tensed up and freaked out. My eyes watered cause my sinuses were irritated–and I felt weird for a few hours.

But the test came back negative.

So I was cleared for yesterday’s procedure.

I have severe GERD, exacerbated by a hernia. I have bile reflux too. These problems, combined with a family history of esophageal cancer, mean we need to check me every few years.

The severe GERD meant they had to fully sedate me–they wanted to intubate. That meant, unfortunately, that everyone else in line for the procedure got to go first. It was a fasting test, so I just lay there, getting hungrier and thirstier for a few hours.

When they finally took me back, my IV line got jerked around a lot. My arm is still in bad shape. Also, who IVs on the TOP of the hand? The dominant hand?

I woke up with a sore throat, naturally, and got dressed. When I looked down at the hospital bed, I saw a wet spot. There was no smell or color, but my panties were a bit wet too.

Thus, like all classy ladies, I threw them in my bag and tried not to Sharon Stone anyone when I was getting wheeled out to the car.

Today, I’m wiped out, and my throat is still killing me. And it hurts to type, so I’m going to stop and take the rest of the day fully off.

But so far my panties are dry.

And I’m in my new tank top.

Share
0 comments

C’mon!

Chronic Pain

It’s extremely difficult for me to stay in any semblance of “shape.”

I’m already overweight, and I’m my 40s.

I’m disabled.

Right now, I can’t go to PT, to the chiropractor, to the massage therapist.

I’m not getting my bursitis treatment or the injections into my herniated disc that I need.

But I’m trying.

I keep going on walks–to be healthy, to maintain (if not lose) weight, to lower blood pressure.

I can only do it in the mornings because of the heat, which means giving up some of my most productive writing time. But I’m still going out.

It’s Spring, and I’m allergic to trees, grass, weeds, etc. But I’m still going out.

Today, my sacrum is locked. My hernia is pressing on my sciatic nerve, my bursitis is flaring, my knee freaks out when I pivot left (the other one is going numb for some reason), my ankles keep turning.

But I still went out.

And just as I was getting to the inevitable point when my walk becomes a pathetic hobble, a neighbor pulled up in a car to tell me to go inside.

“There’s a bear somewhere around here!”

C’mon, universe!

Share
0 comments

I Hope It’s Not the End of the World as We Know It

Chronic Pain, Misc–karmic mistakes?

I don’t know if anyone else got pulled out of class to talk about their essays. It was the beginning of the term, ninth grade. Our history teacher gave us a warm-up free write–what were we afraid of?

I should have said sharks.

But I had written about the end of the world.

HBO’s 1981 documentary/movie, The Man Who Saw Tomorrow, about Nostradamous, is partially to blame. The image of the man who will bring about WWIII, turbaned and entering a room through a Star-Trek door, is imprinted deeply in my mind.

I’d also been reading the Bible. I was trying to understand the religion I was being raised in.

My essay included a detail from the Bible–about how God would not spare anyone, not even women heavy with child. I’m not sure why I picture her running away from earthquake fissures, but I do. My small Conservative town had many people in it who thought abortion was the worst thing you could do (our town had one of the first abortion doctor murders). God, though, was willing to take the life of that unborn child.

We were all fucked.

My history teacher told me I didn’t have to worry about fleeing God’s wrath while pregnant.

My apocalypse fears didn’t go away, of course. I just talked about them less. My long-term boyfriends knew about them; my long-term therapist did too. Mostly because of the nightmares.

One of my boyfriends, when I was ending our relationship, tried to use this fear to persuade me to stay. “You’ll need me if there’s an apocalypse. And I would protect you. I would kill you before I let someone rape you.”

Note: People can survive rape; it’s not the worst thing I can imagine. It’s up there, but not the worst thing. Something happening to my child is the worst thing.

Also: The smart thing to do would be to use their distraction to figure out how to get us out of there.

Of all of my nightmares, one is the most vivid. Something had happened. I needed to pack a backpack and go, never to return. “How many underwear?” I remember thinking. I started to pack my pills, all the drugs that keep my alive. In my dream, I stopped packing and sat down beside the backpack on my bed. It was useless to flee; I was going to be dead in a month.

I woke up.

Therapy did help. The nightmares lessened.

Not surprisingly, I’m being triggered right now. In between the panic of having to get Winter quarter graded and keep my semester classes going, now online, and rearrange the whole way I teach for Spring quarter, and fears about the economy tanking so badly that I lose my job, I’m having lots of intrusive thoughts.

“What if this is the last time I have ice cream?”

These thoughts do not lead to a mindful enjoyment of any given experience.

I don’t know how to end this post.

I don’t know how things like this end.

Share
0 comments

Disabled in NOLA

Chronic Pain

I may have walked a few too many miles than I should have on Thursday, but I love walking in the Quarter, my old haunt.

Yesterday, as I set out for the Pharmacy museum on a sunny day, I didn’t see a big hole in the sidewalk, and I sprained my ankle. I hobbled on–and got to rest at the museum (which was amazing–more later).

About two blocks after leaving, I rolled the other ankle, badly. Luckily, I was within a couple of blocks from the theatre where I was going to spend the evening. Later, I took a Lyft home.

Today, I’m going to try to do the WWII Museum. I don’t want to stay in bed all day, though that seems to be exactly what my ankles want.

They are both swollen and bruised (from where they hit the sidewalk when they rolled). They are painful to touch, which means they are shoe-averse.

I have my cane with me. And I’m gonna lure myself out with the promise of more seafood.

Share
0 comments

On the Wait List

Chronic Pain

Americans who want a single-payer option are often told horrible things about how such medical programs work around the world.

“You have to wait for procedures,” they say.

I get injections in my skull and neck to help prevent migraines. I’m supposed to get them every three months, but when I try to schedule the appointment, I can’t, because the doctor’s calendar isn’t open.

They always promise they’ll call me, but they never do. Instead, they assign me an appointment time and mail me a “reminder,” which is always the first I’m hearing about it.

Yesterday, I learned that I would have to skip the first day of UCD Spring classes if I were to keep the appointment time they chose. I called, but my doctor is booked until six weeks later. He is going to try to scold me about going almost five months between treatments.

If he wanted me to see the migraine specialist again, the wait time would be nine months.

Americans with insurance often have to wait for our care. Americans without insurance usually can’t get on a calendar at all.

Share
0 comments