Today I went in for an appointment to repeat my nerve block. The doctor and medical staff were all lovely. But I arrived at about 2:35 and didn’t leave until 5 pm for a short appointment. I was a bit early but got into a room right away. Did the intake paperwork and questions. Then sat to wait, and wait, and wait. I tried to read my book but felt too tired. I put my head on my hand, leaned on the desk, and fell asleep.
The very kind medical assistant came back in an apologized, and offered me hot chocolate or coffee, which I accepted. Then I saw the doctor. She thanked me for waiting and we proceeded.
I had a vasovagal reaction to the injection. This means your blood pressure drops, you feel queasy and hot, and you better not stand up because you could faint or throw up. Faiting is mainly a concern because you could hit your head or otherwise injure yourself. This has happened to me a few times before, including once when I gave blood. They lowered the table flat, gave me some cold washcloths, and made me lie still for an hour, monitoring my blood pressure and heart rate. Even after I was feeling better, my heart rate refused to rise until I got up and walked around with the nurse. By this time it was nearly 5 pm and my doctor had gone home.
The doctor asked if I’d had enough to eat today. I said, probably not. In part I had not planned to sit in the waiting room for an hour; I’d expected to be in and out. Luckily I had a granola bar, some hard candy, and a water bottle in my bag.
If this goes like last time, I expect to get a bad headache tonight, so I bought popsicles and made sure my ice packs are in the freezer.
Health care can take a lot of time and be a lot of work.
Yesterday as I was driving to the Humane Society for my volunteer shift, I saw a cop car pulled over on the bridge over the highway. I glanced over to see two officers with their arms spread wide, making that classic herding gesture. In between them was a goose. Not a common Canada goose, but a light brown and white, beautiful goose. I laughed aloud and figured they’d be going to the same place as me. When animal control or the police pick up strays, they bring them to the humane society.
A few minutes after I’d started my shift, I saw one of the officers walk in. I was the only person sitting up front at that moment so I asked if I could help him.
“Yeah, I have a… duck? Goose?” he said. “It’s in the back of my vehicle.” I imagine this was one of the stranger things this officer had done.
I went and got someone and it turns out the goose was a domestic, barnyard goose that had gone astray. She seemed quite calm. How she ended up on the bridge over the highway is a complete mystery. Now she is safely ensconced in the barn at the humane society. After a stray hold period she will be up for adoption.
What can we do, as chronically ill people? We are often not people who can plan and lead marches. We generally cannot work long hours. Many of us have trouble with phone calls due to anxiety. Many of us are poor and cannot donate or purchase supplies.
Here’s what we can do.
Link sharing of important information, research and fact-checking.
Emotional labor, such as telling people we care for them, leaving supportive comments, linking to cute animal pictures and music.
Listening to people’s troubles. Using Skype and calling our friends. Sometimes you understand something so much better when you describe it to someone else; you can think through a problem when you talk to someone.
Sending packages or notes in the mail.
Producing fanfic, fanworks, art, etc. Journaling. Creating. Letting our voices be heard. Reminding the world that we exist.
Wearing buttons– making ourselves and our positions visible to the world.
Starting conversations. Being allies as best we can.
Sharing what resources and skills we have. For instance cooking, proof reading, pet sitting.
Taking care of ourselves and each other, because survival is essential. Reminding others to do self-care. Affix your own oxygen mask before assisting others.
from “Illness as Metaphor”, 1977, p. 85
“But how to be morally severe in the late twentieth century? How, when there is so much to be severe about; when we have a sense of evil but no longer the religious or philosophical language to talk about evil. Trying to comprehend ‘radical’ or ‘absolute’ evil, we search for adequate metaphors.”
See again, the use of “crazy” metaphors to describe evil people and evil acts.
“Nothing is more punitive than to give a disease a meaning — that meaning being invariably a moralistic one. Any important disease whose causality is murky, and for which treatment is ineffectual, tends to be awash in significance. First, the subjects of deepest dread (corruption, decay, pollution, anomie, weakness) are identified with the disease. The disease itself becomes a metaphor. Then, in the name of the disease (that is, using it as a metaphor), that horror is imposed on other things. The disease becomes adjectival. Something is said to be disease-like, meaning that it is disgusting or ugly. In French, a moldering stone façade is still lépreuse [leprous].”
This book was published in 1977. The disease I see most often given metaphorical status these days is mental illness.
My nerve pain is not gone. It is however reduced.
It seems like things are moving and changing. My pain was essentially unchanged for a long time, so any change is a big deal.
I am being cautious and waiting to see what happens.
My doctor today was a new one, a middle-aged Indian woman whom I liked immediately. She asked me quite a few questions about my facial pain. She said she doesn’t do trigeminal nerve injections– she does infraorbital ones, which was the ordered procedure from my PA (physician’s assistant at the headache clinic). She wasn’t sure if that is the kind of pain I have, wasn’t sure this nerve block would help, and asked if I wanted to go ahead anyway. I said yes.
[picture of the infraorbital nerve, which runs below the eye and to the side of the nose.]
My face relaxed and went numb as the lidocaine took effect. I had an immediate response where tears ran down my face in an immense feeling of relief.
Nerve pain has been my constant, wailing demon baby companion for someething like 13 years. The baby stopped wailing and went to sleep.
This means it’s likely not my trigeminal nerve after all: it’s the infraorbital nerve.
She said because the nerve is being injected, the pain may flare up for a day or two before the block starts to work.
I cannot overstate how amazing this appointment was.