i have a high tolerance for pain
and i sometimes like to wear it on my sleeve as a badge, or something like it, it feels good to be silly with it sometimes, like being able to say yeah, you can do that to me, i can take it, and sometimes i think of my body as resilient and able and quick to adjust to sensation in ways that would make me want to describe my body as sensitive sometimes but also very tough like an actual big rock or something (haha) and sometimes i’m thankful and sometimes i’m not; she’s been difficult to care for over the years but some days i’ve learned to love her and some days i’ve come to not, sometimes i wish she would just work the way i want it to but sometimes you’re not allowed that for some reason and you just have to be grateful for what you got cause that’s important and sometimes you’ll forget that but you should try not to i think cause, most people i guess would say that’s a better thing to do: to embrace what’s good or something like it, so most of the time, do that if you can, something is bound to work sooner or later, yep!
i was diagnosed with legg-calve perthes disease when i was 7 years old, a lot of people just call it “perthes” for short. here’s a simple run-down as to what perthes actually is from mayo clinic:
while i do think “bone death” sounds kind of neat, in practice and experience it’s actually quite painful and i’m not really into it. while i’ve loved being able to look at my actual bones via the many x-rays i’ve had done in my life, the intimacy of looking at your insides always fails once you realize that oh, this is your fucked up shit that you’re looking at, and this is your problem that you’re dealing with and the appeal of this weird radiation-tinted image you’re given dissipates quickly and it’s time to listen to what the doctor who ordered it for you has to say.
9 23 1
i finish fate/apocrypha on netflix around 1 pm. i start it sometime yesterday afternoon. there’s a lot of talk about god in this show and i can’t help but remember that it’s sunday today and i’ve been thinking about attending a service recently. i think about what that might look like and i instantly remember why i haven’t attended one yet. i realize i’d rather not be around people singing any hymns today, or anytime soon i think. i think about what my idea of god would be and nothing really comes to mind. my mind kind of wanders to what my life might have looked like in a different time for some reason, maybe when god made more sense. i think of walking in on my mom watching king and the clown in high school and seeing an effeminate man in a korean history drama for the first time. i haven’t watched the film myself but i do remember the king falling in love with him, a traveling entertainer. i remember thinking in that moment of wanting to be something like that if i were in that time period. i think about not being able to medically transition in this past life. i wonder if in this hypothetical past life i would have been able to find more comfort in my femininity instead of the shame i associated it with in my current life, maybe because i would’ve just made different choices or maybe i would’ve just had different parents or maybe because of some other thing happening or not happening, who knows(!) i ruminate on it and then put some mindfulness tools i’ve learned over the years to use. i remember that what’s done is done, choices were made and not made, and it just is what it is i guess so i try and think about something else. i wonder if god had intended all of this for me in my current life and i can’t help but wonder if this was all a part of some larger plan (duh) or if this is just me being unable to forgive myself and wanting someone else, like god, to deal with it.
when i was 7 years old i had my first major corrective surgery to treat perthes. i’ve attemped to write out the details before but it’s not fairly easy, mostly because i’m not sure what happened honestly and it’s also kind of annoying to be constantly bothered by autocorrect while writing about it. i’ve sort of been able to kind of figure out what happened through my memories and the subsequent research i’ve done about treating perthes throughout my adult life.
in this first surgery, they cut open the outer side of my right leg, starting somewhere perpendicular to the ball of my hip and sliding down a few inches to somewhere above the middle of my right thigh. they did something to that bone to make it a bit shorter so that there would be less pressure onto the ball of my hip, hoping that less pressure meant more success in the ball of my hip growing over time, and a metal “l” brace was inserted to help the bone grow in a correct position, the short side kind of going into my hip and the long side running down my leg. i would have to be off my feet for months to allow everything to kind of get “set in place” as i grew.
i have some memories of the first few days of recovery after that first surgery. what i’m guessing was an attempt to allow myself some flexibility, my legs were put in some sort of brace that was attached to the ceiling above my hospital bed. my legs in the beginning were laid down vertically and each leg was put in its own brace. over the course of five days, a nurse would come in every few hours and “switch” the brace on so that it would spread my legs out inch by inch from each other. i do have vague memories of nurses visiting me and handling this weird mechanical thing i was hooked up to because it hurt quite a bit and i never really looked forward to it. it started to get really uncomfortable as my ankles became farther and farther away from each other but those memories are a little blurry too, i’m not sure how far my legs were spread. it’s all kind of vague and memories can be fragile but i’ve tried to hold onto what i can and some things like pain just tend to get blocked out i think.
over the next two years i would have four more corrective surgeries. i only know this because i asked my parents when i became older for the amount of total surgeries i had. i remember hearing “five” and not really remembering five. at the time i only recalled three because i only had one large scar to account for two surgeries (one to put in the “l” brace and one to take it out) and the third one i vaguely remember but thought was there, simply because i remember the taste of the anesthesia going into it. i think i tried grape for the first time after getting bored with bubblegum. kids get a special kind of anesthesia going into surgery i think, they’re flavored and taste really funny. i think i liked bubblegum the most. later in my life i would find proof of the other surgeries as scars on the back of my left hand, made by the location of iv drips inserted during surgery/recovery and by the length of time they sat in my hand, leaving a small white hole. i don’t really think about them often, they’re barely visible but i do like them when i notice them.
throughout recovery for all of these procedures, i became very familiar with crutches and wheelchairs. i became very familiar with shower stools and asking for help. help wasn’t always there so i became very familiar with trying to do things by myself. i became very familiar with being alone. i moved around a lot as a kid so i didn’t have much of a support system in friends. it was hard to make friends, especially not being able to play with everyone else in my class. my parents weren’t really around but they did what they could. i became very familiar with food and video games. i think food is a great coping mechanism for pain and i became quite dependent on it. i gained a lot of weight during this time, mostly from being immobile and mostly from bad eating habits and mostly to distract myself from pain, and i held onto that weight throughout my childhood and teenage years. looking back, i wonder how i got away with recovery by adding more weight to my body, inevitably putting more pressure on my hip when walking. i wonder if my parents tried to intervene in any way or if they just felt too exhausted to intervene at all. my parents weren’t necessarily overweight themselves but they weren’t very healthy parents and didn’t really know how else to help me other than to just leave me alone and deal with it i guess. i remember playing final fantasy vii a lot during this time and replaying the part of cloud having to wear a woman’s dress to disguise himself as a girl to win over a crime lord in an early part of the game quite often. during this time i’m thinking a lot about my body and how sad it makes me feel to be in it. i’m young though and don’t really know anything else so it doesn’t really bother me, i just move on to something else to distract me.
all of this happened while i was living in a house on a military base near bellevue, nebraska, it was the 90s.
i really do believe if you compared what i’ve written just now to anything i’ve written about perthes in the past, there would be some conflicting details. i don’t really feel good about this but i‘ve never really been good at getting everything right.
9 23 2
i finish fate/apocrypha on netflix around 1 pm. i start it sometime yesterday afternoon. i realize i’ve become really invested in these characters and their stories and the later half leaves me breaking into small sobs, especially as the show navigates different stories of death, loss, and atonement. i’m very overwhelmed after finishing it and i’m not sure what to do with myself. i go outside and see that it’s a nice day. i feel like i want to go on a walk to think about all of this. i realize i’m not really in a position to be walking so i start to cry. i sit on my front porch and let the sun hit my face and i wonder why i’m living in seattle of all places, i love the sun too much and i’m not ready for this winter.
i found old essays i wrote in 2016 and 2017 on a different medium page the other day. i notice that i mention my hip quite a bit, how it hurts.
i’m a big believer in building routines for yourself to help you navigate each and every day. i often feel as if i’m “losing the plot” throughout the day and having a routine helps me central myself and bring me some ease relative to whatever thing that is bothering me in that moment. i know things are pretty bad when i ignore my routines. when i’m doing ok, i look forward to my routines and they’re often interchangeable for me. i’ll pick up and put down routines over time depending on what my current needs are. here’s what i’ve been doing lately:
i wake up between 6–8 am, maybe earlier if i went to bed at an earlier time the previous night, like around 7 pm or so, i usually sleep around 8 or 9, and i immediately want to get in the shower. i have a problem with night sweats and i live in a makeshift room in a basement that gets very cold around this time so jumping into hot water sounds like the next best thing to remedy the cold i feel in the morning. i don’t like waking up cold.
before i hop into the shower, i sort through my morning prescriptions and supplements. it’s a large amount to take so i divide the large load into separate hands: a hand for my health, my hormones, and my hip pain. the hand for hip pain is fairly new, its been hard to stand for more than a few minutes without feeling pain and taking it before the shower is necessary so that i can get through the shower without experiencing too much pain.
i sort it all out accordingly; i combine 150mg effexor, 450mg of wellbutrin, 200mg of spironolactone, 1 truvada pill, 400mg of modafinil, 300mg of caffeine, and 1600mg of l-theanine to help get rid of any jitters. i keep water with me at my bed and i take a sip to help me swallow it down. the next hand is a mix of 3 tylenol arthritis 8 hour pain relief pills, 2 advil liquid-release gels, 6 turmeric curcumin pills (cause why not), and 15mg of meloxicam for inflammation. meloxicam tends to work better for me than diclofenac and nabumetone but it’s still not enough so i top it off with a lot of otc stuff. played around with hydro and oxy for awhile but realized it’s not a great long-term solution for someone like me, i’m fairly susceptible to bad habits. i take another sip and swallow. i’ll sometimes take garcinia cambogia (for appetite) and DIM (for estrogen metabolism) if i have it around but it’s not a core part of my routine and i’ll take it if i can afford it (or snatch it from somewhere).
i eat a small snack, like a kind bar or something, to help the nausea that comes with taking a lot of anti-inflammatory pills and i hop in the shower and hang out in there for awhile. it’s fun, everything just kinda kicks in after a little bit and it’s nice. i’m less cold than i was a few minutes ago. it’s become one of my favorite parts of the day.
i get out of the shower and dry myself off. i put some cheap lubriderm body lotion all over my body and then head for my bedroom. once i’m there, i start my skincare routine. i’m proud of it cause it’s actually pretty affordable and i haven’t really been shy to steal moisturizers or anything, so i’ve been able to work on it a bit by trying out different products. i start off with a stridex pad over my face and then i move to my serums. i’ve settled on three serums from the ordinary; their hyaluronic acid, salicylic acid, and their niacinimide + zinc serums. they’re like $6 a bottle(!) and they’re so good. when i had money i bought a ton of it and have just been living off that supply for awhile. after that, i’ll apply cerave’s facial moisturizing lotion pm and then put an spf45 sunscreen over it. if i don’t feel like wearing the spf45 sunscreen, i’ll just use the cerave facial moisturizing lotion am that has spf30 sunscreen in it. sunscreen is important!
i then start rubbing topical gels and creams on the skin around my right hip. a lot of my pain comes from the back of my right leg, right underneath my butt, so i work from there and then around my leg and into the inside of my right groin, where pain also likes to sit. i then work my way up to where the ball of my hip would be and then up towards my stomach and around to the right side of my body. i start off with a 1% diclofenac sodium gel for inflammation and then i put a layer of “ultimate healing cream” i stole from bartells awhile ago that’s just some body cream with capsaicin in it. it’s warming and it feels good.
i get dressed and then move upstairs. i head towards my desk where my bottle of estradiol (estrogen) pills are. i stick 3 2mg pills underneath my tongue and then wait for them to dissolve.
i’ve always been really sensitive about my gender and a lot of it comes from feelings of insecurity in myself and my future. i think it has set me back in a lot of ways and it has been difficult to deal with throughout my transition. i often think to myself, “this isn’t really a good way to go about things.” it kind of stains everything in this gross grey; my interactions with people, my self-worth, my inner dialogue. people will tend to accommodate whatever mess you’ve laid in front of them and while that’s nice, knowing that they are working for you instead of alongside you can be a little disheartening.
a friend who knew me well before i transitioned visited me the other day and she asked me if i would ever detransition to help get the support of my family while i’m dealing with perthes again. i don’t really say anything at first, it’s really a wild question and i call her brave for asking, but i say after awhile, if i did, i wouldn’t stop taking hormones, so no, i guess. maybe i could socially detransition for the sake of my family and my recovery and disappear for awhile? important questions: what would you give up to get the help you need? can you even do this on your own? is your identity something you can give up? would they even help you if you did? what would you do once you fully recover? would you “go back”? what does that even mean? what would your family think? are you just going to use them? is any of this real or permanent or are we all just playing along to see how it all plays out? why would you ask me that? did i say something weird?
my friend starts talking again and she replaces “one-man thing” with “one-woman thing” and it makes me very uncomfortable.
i’m really happy she came to see me that day though. i don’t know what else to say.
but i’m certain i’m also very tough like an actual big rock or something (haha)
getting a steroid injection in two days and i’m excited, hopefully that gives me some mobility back. a hip replacement still looms over me but hopefully this one works better than the last one i got. my body is so weird.