semicharmedliving

[semicharmedliving]

Stunning.

CW/ TW: Crohn’s Diaease, depression, colostomy

Something about that word always stuck with me. I remember it being used to describe women/their outfits/etc. a lot during my childhood. And for as long as I can remember that's what I've wanted to be: stunning. Throughout my life I've had dreams of being an actress, a teacher, a court stenographer, a nail tech, a rock critic… you get it. Nothing ever stuck, and here I am: a 32 year old college dropout who still doesn't know what she wants to be when she grows up.

Stunning, though, that never went away. To this day, I want to be so gorgeous that I literally turn heads when I walk past a group of people. I want to be noticed. I want to know what it's like to be a pretty girl. The type of girl who knows how to dress and move through a room, who knows what she wants and she gets it. And who would ever deny her anything anyway?

I’m not saying that I’m bad looking. I just. I don’t catch people’s eye. I’m just there. Do you know what an accomplishment it is to be invisible with bright red hair? I know. I know. Fucking shallow. One of my biggest wishes in the world is to be pretty. Well, not just pretty. Stunning. Not like that makes it any different. I'm still a shallow, insecure fuck.

But that ship has sailed so.

This guy that I’d exchanged pictures with before getting really sick/being in the hospital sent me some thirsty messages earlier. At first I had that old feeling, that kind of swooping in my belly and flush in my cheeks, and for a second it felt good. I forgot about how I look now. I forgot that I'm 40 lbs underweight with rapidly thinning hair and a colostomy bag. God I hate this fucking bag. I hated my body before all this, but I was getting a bit better as I got older. I was less bothered when I was a bit bloated or when my hair wouldn’t cooperate, and more hated stuff like Crohn’s Disease and the multitude of issues in my brain. There were still some physical hating days, but there were less than they were in my teens/20’s.

So anyway, after unsuccessfully trying to deflect, I basically said that my body isn’t the same anymore. He thought I meant I’m getting older and tried to be sweet about that, but I just didn't know what to say. For one thing, last I took any kind of pictures was around Halloween, so it's not like I've done a ton of aging in this short period of time, hon. But no, my body has *changed*.

So yeah, now there's this. Now I don't want to be noticed. I want to fade into the background and disappear. People tell me that it'll be fine. That most people won’t be able to tell I have the bag. That there's cute covers to put over them. That someone out there somewhere will still want me despite it.

I know these people aren’t wrong, and many people live happy, healthy lives with ostomies. One of the people telling me these things has one themselves. Beyond that, I know that people live with much worse conditions (condition? Is that what you'd call this?). I would never, ever tell anyone with an ostomy that they are ugly or don't deserve love or anything at all like that. But me? I feel… I don't even know how to explain how I feel.

Going to the beach and swimming used to be two of my favorite things in the world. Now the thought of putting a bathing suit on (even a full coverage one piece) is just bonkers. I can't wear anything too form fitting anymore. I've seen pictures of girls with bags wearing snug clothes and I'm not sure what they're doing but with me you can tell. Even if it's empty it’s still there. And that’s how I feel with clothes on. I can’t stand seeing myself naked; honestly, I barely look in the mirror at all anymore. I used to love showers. Now I actually dread them. So yeah, someone else seeing me? It’s not happening. Not any time soon if ever.

Here I am whining about this. Shallow and selfish. I've said I don't want to live with a bag forever. Multiple doctors have said, "But you’ll be *alive*!” As if I’m gonna be excited about it. I know it’s shitty to say that that's not the greatest consolation prize. My whole head is fucked but also… I mean, have you seen the world lately? I certainly wouldn't be advertising it as first prize in any kind of raffle or whatever. But I'm a pessimistic, depressed lump so maybe I'm not the best judge of that type of thing. And, like I said, I know that the people supporting me are right. People with ostomies move on and live normal lives. Eventually I'll be able to look myself in the mirror, and maybe I'll enjoy showers again someday. Stunning may be out of reach—to be honest, I always knew it was— but acceptance isn't out of the question.

I really didn't mean to make this so depressing. Though it really did feel kinda good to get some of these feelings out. The plan was to write the hard thoughts here and not burden my loved ones with this, but then I turn around and give two of them the URL. So hey guys. Love you and I'm sorry. Xoxoxo

5/10/24

#crohnsdisease #crohn's disease #depression #body image

[semicharmedliving]

Who am I?

(I wrote this yesterday, 5/9/2024, while dealing with some interruptions so it’s unfinished. For some reason I still wanted to post though so here we are.)

I've never really known. I don't mean it to sound like the stereotypical “Millennial Lost Girl.” Even though I guess that's exactly what I am. Part of it is my generation, sure; of course I’m going to be shaped by 9/11 and The Great Recession and so on—just like other generations are shaped by The Great Depression, Cold War, Civil Rights Movement, you get it. So yes, part of my aimlessness and anxiety are related to those things. Blah blah blah millennial nonsense.

Beyond that though, I just truly have no idea who I am... I was never part of a sports team growing up. I did things here and there—a couple years of guitar, gymnastics, dance, yoga, acting—you get the picture. I liked a lot of things, but nothing so much that I was interested in committing fully to. When my parents tried to force me to join the middle school basketball team (which is part of a whole other story), the coach said something during conditioning that stuck with me. It was something basically to the effect of, “ We have either practice or a game or both six days a week. The only reason it isn't seven is we're required by law to give you a break." Now, I already didn't want to join the team for other reasons, but even if I had wanted to that line would've ruined it. I still remember thinking to my 11 year old self, “Uhhh… This is *middle school* basketball. It’s not that serious.” So naturally I tanked tryouts by pretending to think they only lasted one day, not three. Come to think of it, I'm not sure I ever told my parents about that. Well guys, if you’re reading this, now you know.

I digress. I've never had a "look” of my own—I have zero idea how to put together an outfit to begin with, but I also like a lot of different styles (and let’s not even get started on finding clothes that fit well); my makeup skills are limited to mascara and sloppy eyeshadow; I am lucky in that I have a lovely shade of red hair, but it's thinning and always frizzy with baby hairs and doesn't like to cooperate. I end up wearing the same kind of combo of tank top/shorts/flipflops during warmer months and hoodie/sweater/leggings with either boots or sneakers. For a a while I had my extensions in and did things other than a messy bun (and these days it’s not a cute messy bun. Ever.) but the depression and then the big sick kicked in and well. I'm wearing a lot of hats these days.

And my friends. I am so blessed to have so many beautiful, supportive, funny, amazing friends—many of whom are more like family. Really I could go on and on forever about the truly fantastic people I'm surrounded by. And I am lucky enough to make friends wherever I go. None of that is lost on me so I don't mean this to sound ungrateful by any means ever. But like I'm also just a bit of an outsider in any friend group I’m in. Family too. I know that they love me, but I'm not as close to everyone as they they are to each other. It's changing a bit with everything going on; and since I’ve been able to join family Zoom more regularly. But it's still there in my head. I still sometimes feel like a bumblebee buzzing around, trying to bop my way into being fully accepted as part of the group. Again, I know that no one does this on purpose and I really am loved. Sometimes there’s just history and bonds and whatever else that you just can’t compete with.

There's work too. I know I'm a good bartender. And people like me as one. But why am I doing it? I went to college but I was a complete mess with zero clue who fell for a boy and never even thought about the future. So I dropped out. I could have been somebody. Like my cousins.

I've always just kind of felt l’m floating along in life. Just sort of hovering around, never really having a place in life. Just. Always slightly unsure. Slightly on the outside.

#millennials #identity #identity crisis #depression

[semicharmedliving]

I know. I’ve been absent. I have to commit more.

[semicharmedliving]

Today’s a hard one.

[semicharmedliving]

I mean, come on. Smokeshow.

[semicharmedliving]

Mona Lisa Vito Is My Queen

CW/TW: surgery, operations

I mean, let’s be real: is there anyone more iconic? Every time I watch My Cousin Vinny and it gets to the part where Vinny calls her to the stand I get giddy. Every single time. I know it’s coming. It’s always the same. But it’s always so satisfying.

As you may have guessed, that was on last night’s watchlist. Dad and I tried to watch Poor Things, but that was just not working for us. A little too weird and a little too much sex for us to watch together. I do plan on finishing on my own, at some point. It was also weird for me after having been drilled into yesterday. I’ve got two more drains hanging from my body, and a Frankenstein-esque tale was maybe a little too on the nose. So we stopped partway through; Joe Pesci and Marisa Tomei came to the rescue.

So yeah, yesterday was a lot. The drains were unexpected, and are painful. And the news with them isn’t ideal. Despite being on basically constant antibiotics for the last 5 fucking weeks (yes, I’ve been in the hospital for 5 weeks. I’m starting to go stir crazy.) I’m still having pockets of inflammation and infection pop up. So now the doctors think that I’m going to have to have another, larger operation for an ileostomy. Not what I wanted to hear. Not sure how to tell dad. Not sure how to even deal with it myself. Then there’s my aunt in it all, who got into one of her pitbull modes (which I appreciate in her) over the fact that I’ve been here for so long and haven’t had nearly enough talk about the cancer in my body. She wants me to transfer to a different hospital. I did put in a request through a form she sent me. It makes sense to me that my doctors are saying with my active Crohn’s and infection that I can’t begin cancer treatment, but it also seems like this has just taken too long. I don’t know what I’m thinking or doing. Stay, transfer? I just don’t know. I’m out of my depth. It’s taking it out of dad too, I can tell. He’s trying really hard, but I know this is difficult for him. And mom. We’re all tired.

I guess today is hard too. I’m just coloring and letting my brain be mush. Dad should be here soon. What will we do? Idk. Probably watch something. There’s not much to do in the hospital. Had a nice FaceTime with the group earlier. I should be in Ocean City with my friends right now, but here I am in a hospital bed instead. The weather down there is even nice for March. I don’t know. I don’t believe that everything happens for a reason, but I feel it a little? Like I always end up where I’m supposed to be. Even though this certainly doesn’t feel like where I am supposed to be right now. And they’re moving my room to a different floor today. I won’t get to say bye to my favorite nurses and that makes me sad.

I don’t really have a point to all of this rambling. Just getting it out I suppose. Happy Saturday, I guess.

Saturday, March 16, 2024

#cancer #Crohn’s disease #healing

[semicharmedliving]

Not Having a Baja Blast

CW: colostomy bag

Well, as predicted, I’m not so great with this. The keeping up. But I’m still making an effort. Trying to anyway. Still in the hospital—been since Feb 8th; yesterday was the first time I was outside in all that time. Admittedly I was a Grumpy Gus about it. Whatever they did with the drain on my abscess had me in such horrible pain it was even hard to talk. It felt like my insides were being gutted by the toy plastic jack-o-lantern carving kits. Of course we had started weaning my painkillers bc I wasn’t needing them as frequently; then getting reapproved for more is a whole rigmarole. On top of that I had a doctor in here trying to convince me to eat something (that’s my real last hurdle to leave, being fully on a regular diet and not the TPN—the IV supplemental/complete nutrition); sure, guy, my insides are rebelling but let me eat this grilled cheese.

But yeah, I did the Healing Garden thing yesterday (that was the pic I last posted). I didn’t walk—I was in way too much pain for that—but I got wheeled down. It’s a tad underwhelming cause it’s only March yet, so the only place that really has anything is the area you enter with all the daffodils. The rest has some sprouts and signs of them beginning the garden. That didn’t do much to contribute to my mood, admittedly. Sitting in a wheelchair amongst barren plants when I’m not even someone who likes outdoors very much in the first place just felt stupid and silly. However, they had to get it approved for the wheelchair and the excursion, and for someone from hospital staff to escort me because you can’t leave without a chaperone, as though you’re planning on running away (I know it’s more for safety reasons but I like thinking that they’re afraid all 95lbs of me is gonna spring up out of my wheelchair, toss my IV pole with 4 different bags on it over my shoulder, and run screaming into the night.). So this girl had to take time out of her day to be out with dad and me. And then there’s the dad of it all. I know it was important to him that I do the good mental health thing, and that it was hard for him seeing me like that. I must have looked like a little old lady in a nursing home in my wheelchair with the blanket over me, and so thin and all. That can’t be an easy sight for a parent. None of this is; I’m gonna feel badly about the period where I was delirious for a while. So there I was, in pain, annoyed, angry even, but trying to be grateful and graceful about the whole thing. Which is a difficult feat. I hope I passed with at least a C-.

Today’s walk was a lot more promising til it wasn’t. It’s warmer and sunnier, and I was actually walking around. But then my colostomy bag leaked. One of my biggest fears: realized. Lived. And with dad here. I know he fears that for me too. I haven’t quite processed it yet. I tried to play it cool for everyone. It was really shitty though. Pun intended. Having shit just kind of pouring down your side uncontrollably isn’t something I would recommend for self-esteem. I’m honestly surprised I didn’t cry. Probably cause dad was here. I don’t want him to regret this even more than he already does. I’ll probably cry later on tonight. I know that I’ll be okay though. I will. I mean, I did get through it in the end. Of course the fear is that it’ll happen in public, but that’s something I’ll work on. And can prepare for.

It’s a beautiful day. I have visitors coming. Lively ones too, so it’ll be a nice distraction. I’m in a strange mood actually. Which makes sense. Coming off of a day of excruciating pain, then all that. My life is weird. But that’s okay.

I’ll probably write later. Or try, I should say. For now, cheers I guess.

Wednesday, March 16, 2024

#cancer #healing #recovery #positivity

[semicharmedliving]

First time outside of the building in over a month yesterday.

#flowers #pretty

[semicharmedliving]

The cold sore that won’t go away. Plus my mood today.

Monday, March 11th, 2024

#meh #cancer #crohnsdisease

[semicharmedliving]

I am a chronic turn signaller. People will be like “there’s no cars around.” Wrong, I’m

1. letting pedestrians know.

2. I’m doing this in case I missed a car or person somewhere, or

2b. I’m gonna be stuck at this intersection til a car or person shows up

3. It makes it a habit

[semicharmedliving]

Grumble grumble…

[semicharmedliving]

#meme #stolen meme #possum #joke

[semicharmedliving]

Some days start better than others.

#chocolate #chocolatepeanutbutteregg #coconuteggs #Easter candy #donuts #pie #shooflypie #donutdiet #doctorsorders #aestheticbreakfast

[semicharmedliving]

Blurb. Blur. Blank.

I don’t know what’s going on anymore. Spent more than a few days in delirium, and pain, and embarrassment. Shame for scaring my friends. Disgust at this horrible cold sore. Annoyance at my general condition. Part of me is happy for company, part of me wants to be left the hell alone to deteriorate in peace. Sometimes the positivity is genuine. Other times I feel like I’m comforting everyone else. “I’ll be fine! I’m always fine! I always land on my feet.” Sometimes I’m fucking tired of being tired and pretending not to be. I just don’t know. I really just don’t know.

Maybe tomorrow will be clearer. I hope.

Sunday, March 3, 2024

#cancer #crohnsdisease #sickness #recovery

[semicharmedliving]

[semicharmedliving]

[semicharmedliving]

Panic at the Post-Op

So the plan was to write more about today; hopefully I do tonight. If not today, likely tomorrow.

I do have a story I want to jot down before I forget it though. For context, I have told people more than once that I am not a human being--I'm a cartoon character. My life is just fucking weird. I either cause or stumble into ridiculous shit much more often than your average person, and my life just has a general thread of nonsense throughout. Aaaanywho, I decided to be a good little patient and take a few laps around the ward tonight (is that what they even call them anymore? Or is that like a bygone term?), even though I'm still connected to the goddamn IV pole. So I wander my grumpy ass self into some kind of family waiting room for a change of scenery, and to see if there's a vending machine with good drinks. Turns out that once visiting hours are over, these doors lock from the waiting room (entrance) side. So once I confirm that there is no vending machine (boo), I go to return to my laps. Except I can't. Because I locked myself out of the hospital unit I'm on. Only me. Of course I immediately took to Snapchat, which is my preferred platform for my life's nonsense, and many people were amused and not a bit surprised--because, as I said, I am a cartoon character. There was a brief panic attack, which put a damper on things, But after about 5 or so minutes someone answered my frantic buzzing/banging, and all was well.

So yeah, never fear, I am keeping my own personal brand alive. Without even trying, of course. XD

Februrary 20, 2024

#funnystory #anecdote #iamacartoon