Universal Underbite
a young octopus’s translucent skin reveals its digestive system
everyone, go watch the series SECRETS OF THE OCTOPUS
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Universal Underbite
a young octopus’s translucent skin reveals its digestive system
everyone, go watch the series SECRETS OF THE OCTOPUS
I was living with [socially] unacknowledged chronic pain.
A TMJ diagnoses comes in an incredible number of forms and various levels of severity. Technically speaking, a lot of people have it. Because of how common it is, my personal challenges were often minimized by those around me.
Most people with TMJ will live their whole lives in good health without surgery. Most of them do not live with chronic, severe pain. Most of them live with occasional, minor inconveniences that are treatable (surgical alternatives such as removable orthodontic appliances, etc.) Many never seek treatment simply because the symptoms never become cumbersome enough to justify the effort.
My TMJ has been debilitating and involved years of chronic pain. It has impacted my health in a multitude of ways, including impact to basic functions like sleep, eating, and breathing. I will document the details of the progression in another post.
Often, when I’ve told people that I have TMJ, they think that because they (or a friend) have some form of TMJ - a click in their jaw or occasional headaches - that they understand my experience.
While it doesn’t really matter what other people think, living with chronic pain and feeling treated socially as if it is some minor ailment - “isn’t that serious” or “not that bad” - does wear on you over time.
Doctors appointments became therapeutic. I found it relieving to spend time with my medical team because they were the only people around me that understood my challenges. (Other than my incredible SO who I met about a year prior to surgery)
My family and friends thought I was being dramatic and brushed it off. My employers were less than empathetic when I attributed absences to related symptoms. Communicating the significance of my condition to people around me became stressful in and of itself.
Every day was a challenge for me, and I often felt unseen.
Posting this not to say “woe is me” (and hey, I’m recently on the other side), but to hopefully reach someone else who has had a similar experience so that they can know they’re not alone.
Super neat photo I got today of a digital representation of my jaw! The red section on the left is what is being removed (along with a sensory nerve), and the titanium mesh on the right is what is going in along with the bone graft and concentrated BMP! #jawreconstruction #jawsurgery #ameloblastoma #jawtumor #titaniumimplant # (at Dr. Murray L Fain) https://www.instagram.com/p/BqbiInqHWLW/?utm_source=ig_tumblr_share&igshid=y29o9kt66ggb
Week 1 after surgery
Very swollen and numb face, oozing puss in my mouth, constant nose bleeds. The swelling managed to get even bigger after I started waning steroid dosages and transitioning from ice to heat mid week (as instructed). My face is enormous! Can’t emphasize this enough. Significantly bigger than post-wisdom tooth extraction which was a surgical pre-requisite 18 months ago (so the jaw can heal). I look OTHERWORLDLY levels of uggo.
Clear liquid diet from a squeeze bottle with a long nozzle. Eating a lot of broth, juice, jello (which needed to be slurped into my mouth like I was a fat sea creature by my loving boyfriend). I graduated to adding watered down nut milk mid-week. Surprisingly not hungry, but probably because my mouth/face is so uncomfortable it’s too busy to think about eating. Eating normally is just unimaginable, so out of the question, that it isn’t even desirable.
I’m drooly, ugly, kind of gross. I’m not minding it that much, but that’s simply the truth of it. I have become comfortable with my inevitable grossness.
I didn’t shit for five days (combination of prescribed narcotics and anesthesia). Lots of strange, uncomfortable bloating. Laxatives come in handy, but still took two days to work.
Heavy duty hygiene routines- salt water and prescription oral rinses, multiple nasal sprays, etc. My mouth opens more at the end of the week than it did on day one, but still I only have pretty minimal available access. It’s one big gooey mess inside and out- unexplained sores all around my lips despite my rigorous aquaphor and chapstick application. Even with the recommended baby toothbrush, I couldn’t brush at all for the first few days. Now, I can barely brush the midsection of my four front teeth (thankfully, because seeing nasty shit build up there was really bothering me).
Pain is a constant. The drugs help, but the only way out is through. Discomfort even more of a constant. It’s wild to feel so much numbness and so much pain simultaneously.
It’s hard to describe how strange the numbness is- you literally can’t feel most of your face. Touching it feels foreign. When I adventured into jello without the help of my boyfriend (jello was the only thing I ate this week that wasn’t from a long nozzle squeeze bottle), I had to do it in front of a mirror, and even then I struggled and made a mess.
Sensation is starting to return to my upper lip! My surgeon did a kickass job and believes my lower lip/face sensation will come back eventually (this can take up to a year, is sometimes permanent which is just a risk for jaw surgery). I feel occasional tingles or twitches in my lower lip which, from what I’ve read, is a good sign that the nerve damage isn’t permanent.
Painful stares when I take short walks. I do look really, really fucking strange, to be fair.
Hardcore general routines- I feel like I’m in active care mode around the clock. Between...
1) needing to take meds every 3 hours (makes for a great night’s sleep, right?) to stay on top of the 10+ medications (prescribed and over the counter, all instructed by my surgeon) and their various schedules
2) required hygiene rituals like nasal sprays and multiple oral rinses
3) meal prep and clean up with all the special tools- bibs, syringes, squeeze bottles so they don’t taste like the last thing in them (i.e- milk to broth: gross!), etc. I bought more so I can dedicate bottles to flavor profiles (one for milk/sweet stuff, one for broth/soup, one for water), but they won’t arrive until week two. The bottles I got are dishwasher friendly, but the dishwasher doesn’t clean out the taste effectively, so they take tedious elbow grease to maintain every time I want to consume something.
4) heat and cold therapy schedules (at first, ice packs 30min of every waking hour, later in the week heat packs or pads 20 mins every two hours)
5) making sure I take a short walk/move my body in some way to make sure I don’t go crazy and circulate blood
6) generally staying comfortable and clean in this bizarre state of being
7) restocking on all the relevant goods to make this magic happen (reminder to self- add this as a tip to stock in bulk when pre-surgery shopping)
It’s legitimately a full time job. Even when I’m relaxing watching TV or reading with my boyfriend, we’re juggling a task or two the meanwhile, someone gets up because I need something what feels like every few minutes.
It’s important to have an incredible support system and a parent or partner that can give you full support week one. No joke!
I have another day until week one is over so I’ll edit this tomorrow. <3
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