harley

they/he living with EDS and others :)

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heyo! my name is harley (they/he) and i just started college this fall :) i really enjoy movies, painting, and philosophy/theology/cosmology. i also act in small indie films and do some pa work. separately, i also have ehlers danlos syndrome and gut failure/autonomic dysfunction. this blog is mostly a personal blog/documenting my life as a disabled student, but you’re welcome to follow along if you’d like! asks are open but i prefer to keep most personal info private :) so.. welcome in!

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not to be a bummer but god i’m so tired. i’m so, so tired. i wish i could find comfort in someone who knows what it’s like. today i had to take a break between every t shirt i folded and packed. i’m so tired of fighting so hard against my body just to open my eyes, to exert the energy of existing. i am in pain all. the. time. and now i haven’t had anywhere near adequate nutrition or hydration in more than two weeks. i have to wait because health insurance is a fucking scam. everything for my picc line placement and tpn is set up on the medical side but my insurance is trying to avoid covering it in every way that they can. i’m so tired that i can’t even try to fight insurance. i’ve lost so much weight from waiting for insurance that every second of every day i’m am too shaky to do anything, too cold to leave the dorm, my heart spazzes with every movement, my mouth and throat are sticky from how dry they are, i’m so sore and i am so. so. so. tired.

despite this though, i’m (at the very least) confident that the sun will rise again tomorrow and i will see another day. it may not be better, it might even be worse, but it will nonetheless be a new day and i can try again. not only that, but the sun will also rise on the people i love the most, and we can try again together.

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finally feeling like updating now the semester is over!

i got As in all my classes which is a massive dub. all of my classes were very fun but i’m excited to go home for break and do nothing but nap with my dogs. i’m also registered for all my classes next year (introductory astronomy, media ethics, war communication & propaganda, and intro to logic) so it’s going to be pretty busy! i’m very proud of my grades this semester but i know i’m going to always have to be reminding myself next semester that Cs get degrees.

the health side of things is getting more complicated though… my gj tube coiled into my stomach again about a week or so ago and the replacement was unsuccessful. the surgeon said that they tried to replace the j portion over 20 times and every time it immediately coiled again. they sent me home with just a g button and an appointment with the neurogastroenterologist that i was already scheduled to see. i was certainly concerned because not having jejunal access means very little nutrition and hydration and i was already losing weight on j feedings. i was so scared to see this new gi (medical ptsd be like) but as soon as i got there i was treated better than any doctor or hospital system ever had before. my quality of life was actually a priority at the appointment. and i’m finally at a point where my doctors are actually talking to each other and i don’t have to be the middle man anymore! i wasn’t doubted or condescended to and now i actually have short-term and long-term plans. i’m starting on two new medications to help with pain and nausea, getting a stat referral to the gastric pacing surgeon so i can start that treatment as soon as i turn 18, and i’m getting a picc line placed to start tpn. i’m very much so not excited about the last part but it’s quite literally my only option at this point (aside from a roux-en-y jejunostomy which is not safe for me). i’m getting my picc placed this week and will have a nurse coming to my parents house every day to help with tpn while i’m home for break and will come to do dressing changes every week when i’m back in the dorms. my biggest fear is infection, but worrying about it won’t do me any good. we’re not sure what the future holds for my nutrition needs, but i hope that once the gastric pacing can start i won’t need tpn or a feeding tube at all.

anyways! i hope everyone that passes by is doing well and have a restful holiday season :)

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it’s been a little while!

i’ve been living in my dorm for one week now and it’s honestly so fun . i start classes tomorrow morning , 9am , and i’m super excited to get into the swing of things :) i’ve been to a few very small parties so far and have met some very cool ppl , but i’m also super ready to get into the academics (and i still have no idea what i will major in)

as of this moment , i can continue with enteral feeding (thank god) because my bloodwork has been pretty satisfactory , even tho i haven’t been gaining the weight i need to stop feeling so bad from SMAS . it’s a bummer but i’m still hopeful that i’m on my way to remission , it just takes time

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i move into my new dorm in two weeks !! i’ve really gotta get shopping and packing but i still have time :) i’m really excited for all my classes and i just got off the waitlist and enrolled in a film production class so i’m super excited for classes to start

i’m still having a lot of trouble getting into remission from my SMA syndrome so i’m having a lot of electrolyte and heart issues :( my GI doc is considering TPN for a few weeks to get my weight up and increase the angle of compression but i really want to keep trying enteral feeds as long as possible

if i have to get a central line for TPN , the home health nurse would have to come to my dorm to do dressing changes and stuff and i feel like that would suck :( if anyone has any experience with managing home health care in a college dorm , feel free to pm me

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one more health update !

i have a CT scan soon to determine the angle of compression for my smas and see if i need surgery . i’m pretty stable at the moment , which is good but i’m also seeing another cardiologist because of my recent heart episodes but we’re not too worried :)

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here’s a little health update:

i had to have a GJ replacement on tuesday because the the J portion flipped into my stomach . because of my gut paralysis and anatomy , placing my tube can be complicated so we replace it with an endoscope instead of in fluoroscopy . this time around , the docs found a possible hernia or weakness in the bowel wall . the guide wire also came out and perforated my bowel slightly and contrast entered my peritoneum . they also found a severe narrowing of my intestine and i was diagnosed with superior mesenteric artery syndrome .

because of the contrast entering my peritoneum , i got admitted for IV antibiotics , sepsis watch , and monitoring my feeding intolerance . i meet with my GI team once i’m discharged to determine best course of action for treating SMAS and if i’ll need TPN or surgery .

good things though !! i’m registered for all my classes for fall semester and i set up all of my disability accommodations with housing and academics :) one step back , two steps forward

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my graduation ceremony is tomorrow and i’m so excited :) i’m so proud of myself!

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i’m like... about to graduate high school. that chapter of my life is almost closed and i’m so scared but i’m also so excited to go live on my own and be a responsible adult.

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i also have to do my placement tests so i can register for classes in a couple weeks and i know for a fact i will do very very bad on them :| like i promise i used to know this stuff

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now this might be just me, but cbd works much better for me than cbd+thc for pain relief. i tend to reserve woking smeed for recreation and appetite boosting.

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i’m going to use my coping skills >:) hehe biofeedback babie

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well i’m in a lot of pain right now :( i’ve been trying a higher dose of gabapentin but my primary is recommending low-dose naltrexone but idk if that’s a track i want to go on.