the act of being percieved

i’m not sure what i’ll be posting or how frequently. i’ve never done this before, the whole having a presence on the internet thing. i wanted to try something a little scary this year — so, hi tumblr!

some things about me

1. i enjoy reading. fantasy is probably my favorite genre, but i read almost everything.

2. i used to write poetry and short stories, but i haven’t in a long while. i’m hoping to get back into it.

3. i sometimes draw. i haven’t taken art seriously as a skill for over a decade, but i still like dabbling.

4. i’m indigenous and grew up dancing fancy shawl.

I had a few scares this past year that really put things into perspective for me, and what i realized most was that i want to truly start living. doing things that might be a little scary, like being perceived, because why not? we only get one life, might as well make it interesting. it might not be perfect, but there are moments and hobbies and trinkets and movies and music and poetry and people and the list goes on and on that make it all worthwhile. so, i hope that doing this — being here and meeting you — will become one of those things.

so, hello world. let’s start living.

thinking about how in April of 2023 i made this brace out of playing cards to represent my invisible disability and learning to accept it for what it was so that i could thrive and flourish and then not even four months later my disability progressed and stopped being so invisible and then as my condition worsened the protruding flowers started breaking off and leaving only the brace, wires, and hard edges.

will i ever learn how to properly use the tools on csp? tbd.

Spidersona!

I'm coming to the end of another hospital admission. I've been here for 33 days and counting, but I have hopes next week I'll get to go home. I got fungemia again, the 4th time in less than 2 years. We caught it just as it hit the bloodstream, so there wasn't major organ involvement like there has been in the past and I didn't go septic. Since it was my 4th time with the same infection (an infection that I went septic with 2x) the decision was made to remove my line and replace it with a j-tube. This was something that had been off/on discussed, but I also use my line for fluids to stabilize my hypotension since pills aren't always reliable. This complicated things a little.

To make matters worse my gallbladder finally called it quits and needed to be removed as it was close to rupture and completely filled with gallstones. Everything was done in one go: hickman catheter out, gallbladder out, j-tube in.

Pain. I wasn't prepared for how much a j-tube would hurt. Due to the pain the surgeons and dieticians held off on starting tube feeds for 2 days. From there on it just got worse and worse. Within 2-3 days of having the tube the juice that I drank orally had begun backing out of the tube. Every day I would go to bed and the next morning what I had drunk the day before was in the tube. It started SMELLING. Gnats would circle around my tube. I felt disgusting. A medical device inside of me was attracting bugs. This didn't feel right. Then the feeds started. I couldn't get past 10ml/hr without excruciating pain. We tried 4 different formulas. The only difference being whether I had constant vomit and diarrhea as well as the pain. It got to the point of the doctors considering sending me home on opioids JUST to be fed. I refused because that took every last bit of the quality of life I had clawed and scratched at for two years right away from me all over again.

I was losing weight and not getting more than 60-80 calories by tube a day. The only oral intake I was getting was about 8-10oz of cranberry juice. My external sutures had to be popped because of the bloating and swelling of my abdomen which looked the size of a 4 month pregnancy by the end of the night from the formula. The decision was made to stop tube feeds to give my intestines a break because I required dilaudid and robaxin to get through the day. Even flushing the tube hurt. The crushed medications put through it and flushed would come back out the next day. The tube was not working properly. Various prokinetic and antiemetics were tried with no symptom improvement.

I found out around 2 weeks after the inital surgery that my tube wasn't even placed "normally." The balloon that is supposed to be inside of the body to keep it in place and prevent it from coming out was left outside along with around 3 extra inches of tubing because my intestines were too narrow for the tube to fit. It was sutured internally instead. Around this time the tube started to come out. Each day when I moved I could see around 2 inches go in and out of my body. The surgeons met with me again and decided the tube was failing and to remove it and place another Hickman catheter (my third). I had the removal within 3 weeks of the initial placement, my tract was not yet healed which necesitated the surgical removal along with the unconventional placement.

I'm back on TPN now, but still on painkillers. Having three abdominal surgeries within three weeks is a lot for anyone, but for someone with hEDS and is entirely dependent on their wheelchair it has presented unexpected and/or prolonged difficulties. I'm getting better each day for pain, just a lot slower than I want. It's just so frusterating. I went through all of this and I will continue to go through things like this. My status has been changed to terminal because of how treatment resistant my gastroparesis is and how I seem to be a "chronic colonizer' for candida parapsilosis. It's not a matter of IF i get another infection but WHEN and just hoping we catch it on time. I was on prophalactic antifungals at home and the fungus still got into my bloodstream. I have organs that don't function at full capacity anymore and they just continue to get worse. I wish so desperately things were different, but they aren't. I don't know how long I have left and the doctors don't either. I'm going home on palliative because mentally I'm not there for hospice yet.

I really wish I could be more positive, but sometimes chronic illness and disability is just this. It's feeling like you've hit a wall and there's nothing else you can do. Like no one knows exactly how you feel or what to do to make it better. It's letting doctors do things to you even when it hurts because you want the chance to have a life. It's writing a post you know not many people are going to see but doing it anyway because you want to feel heard and seen in any capacity. And who knows, maybe my words will help someone else going through the same thing.

i was raised to be conscious of my waste and so it’s so disheartening to see the amount of single-use plastics i now rely on. this bag is filled from flushing and heparin-ing my lines just once (with a minimal amount is supplies at that). but i have to do it twice a day not including connecting and disconnecting from my pumps. thats plastic syringe bottles. the wrappers they come in. the plastic caps on them. the plastic caps i put on the end of my lines to keep them clean when not in use. the plastic tubing. the bags the meds are in. and the list goes on and on and on. i lived sustainably for so long and it just feels like one more thing that was taken away from me. and no one really talks about that bc it’s just “well at least you’re alive” or “be thankful these things exist today” and like sure, but i can still be upset.

i fill a medium sized trash can up each day and thats astonishing. i should be allowed to be astonished.

my first painting on clip studio paint! my brother gave me his old surface go which has now been repurposed as my drawing tablet. i'm very excited to be making art again and to keep improving as time goes on. i certainly need to learn more about to program, but i can't wait to be able to use all the tools. i'm especially looking forward to trying my hand out in animation.

i'm a mess when i make traditional art, so this was certainly more convienant as i only had two physical tools. can't really make a mess with a tablet and stylus/pen.

i got the $50 version of csp and i think its more than worth it. take the leap if you were on the fence.

:)

i got colors live for my switch to see if i would like digital art as a medium and tbh it actually kinda feels a little freeing ?? im very hard on myself when i make art and every little mistake usually causes me to crash out but i haven’t gotten mad or felt the need to get rid of what ive drawn. like im actually being really mature and healthy about it which is kinda confusing but anyways! im excited to keep learning about digital art and to see if this excitement is enough to get me out of hiatus and start actively drawing again (which i kinda really need to do bc just like riding a bike if you don’t do it for a couple years your skills get rusty).

so colors live i recommend if you don’t want to fully commit to a program on a tablet and already have a switch. it gets the job done. it’s a little annoying bc the stylus is wired and the switch is kinda oddly shaped for handling but it’s workable. i’m still learning what it can and can’t do. ive only had the game for two days, so i can’t say if ill stick with it but if i do then i cant wait to see what else i’ll draw and where this medium takes me.