u/sensitive_pirate85

I’ve posted to this community before, a few months ago, with the same problem, but now I want try to elaborate a little further on my specific symptoms and situation; because I don’t know of anyone else who is in the exact same boat, and it’s extremely frustrating. There’s also zero information that exists, online, about my specific experience or symptoms.

I’m a 40f who was born with Tetralogy of Fallot and Pulmonary Atresia, when I was about thirty I was diagnosed with heart-failure, and was told that I would probably need another heart-operation. When I consulted the CHD specialists at OHSH, in Portland Oregon, I was told, essentially, that another heart-surgery would be too risky, because of my anatomy. (Essentially because I’ve had so many past surgeries.) I was told, at around that time, by my local cardiologist that I probably needed a heart-transplant. I was told by OHSU, later, that my options were a valve-in-valve procedure, or a heart-transplant. I opted for the Melody valve procedure, which was performed at Stanford University Hospital in Northern California, (in either 2021 or 2022, I don’t remember) but the surgery was only a partial success. The valve was never completely deployed, and my heart ripped and had to be surgically repaired during the catheterization procedure.

Almost immediately after the surgery, I started having very severe and specific symptoms, which were worse than any of the symptoms I had prior to the valve-in-valve surgery. Prior to the operation, my Cardiologists warned me that the operation would be risky because a major artery or vein had grown over my heart, and so I assume what’s happening is that artery or vein in being compressed between the artificial Melody valve, and my sternum or breast bone. That’s essentially what they said might happen if I decided to go ahead with the surgery. I was suggested, by a cardiologist here, online, that I could maybe ask my cardiologists in Portland about maybe placing a stent or shunt to keep that blood vessel open, but I have had some difficulty describing my symptoms to my doctors. My next OHSU cardiology appointment is in September, and they schedule about six months out, so I figure this is the only time, or opportunity, I have to “get my ducks in a row,“ so to speak, and figure out how to explain my symptoms to my cardiologist.

Essentially, I spend most of my time in bed, on my back, because I think when I’m laying down, that vein or artery isn’t being compressed. When I’m on my feet for more than 20 minutes, I get a severe headache and my eyes go crosseyed, in the sense that at least one of my eyes starts to go lazy. I’m not sure what happens after that, because I’ve been very conscious not to be on my feet for too long after these symptoms start, but I’m afraid I might at risk for a stroke. These symptoms started almost immediately after the surgery, and they’re extremely debilitating, to the point where I can never be out of the house, or on my feet, for more than about 30 minutes at a time. Not unless I can find a place to lie down, like on a bench or in the back of vehicle, for example. (Just to elaborate: My aunt on the drive home from my surgery at Stanford noticed my eyes were cross-eyed in a group photo we all took, together, and later, after I had recovered, and had started cardiac rehab; I noticed my eyes going crooked when I walked to the store for the first time after my operation to buy groceries in one of the security mirrors. That’s when I started to become too disabled to walk back and forth to and from my local store, and my symptoms are so severe that I had to switch to going to another store that’s more expensive, and further away, but that I can take the bus to get to, so that my overall time on my feet is less.) I know my surgeons meant well, and did their best, but this botched surgery has completely destroyed my quality of life. I know having another surgery is risky, but I’ve lived like this for years... Hoping it would get better, but it hasn’t. Where or how should I begin to explain all of this to my Cardiologists at my next appointment at OHSU?

I’m often reluctant to talk about anything that specifically has to do with aging… Because in many ways, I’m not your typical 40 year old. When my mom was in her 40’s she was still spry and full of energy, men still hit on her all the time because of the aura and energy she gave off. I was born with a serious heart-condition, and unfortunately I’ve been in pretty poor health, recently, which has taken its toll on my energy levels and physical appearance.

The comments on another sub (talking about “sex symbols”) reminded me of this… But I never understood why I got so much attention from men when I was in my twenties and thirties, but now I kind of get it… people used to say I looked like Angelina Jolie, and had a body like Kim Kardashian, (not men I was dating or anything, just friends or random people on the street, men and women) so I think I fit the public perception of a certain type of beauty-standard, but I’m not sure if either of those women even meet the current beauty standard, today, and it’s hard to say who/what the new beauty standard even is, because culture and media isn’t nearly as homogenous as it used to be. One thing’s for certain, I’ve never been particularly photogenic and so my looks never really translated, online, and so it seems like every time I post a picture of myself, I seem to lose followers, rather than gaining them. When I walked down the street, I always dressed modestly, but up until very recently, would always get more attention than younger women wearing less. I’m not bragging, but I guess it’s something I got used to to the point of it becoming a part of my identity, and who I was.

My appearance has changed in some ways, I think I might have a hormone imbalance, and I carry a bit of water weight under my ribcage that I didn’t used to carry… Obviously, being less confident about your looks is a normal part of aging, but I realized that a huge part of my identity was wrapped up in being “sexy.” (Or just being considered sexy, since I’m extremely sexually inexperienced for a woman my age.) If I’m not “sexy” then who even am I? Lol! I don’t know if beauty standards have changed, or if I’ve changed, (or both!) but it’s sort of disorienting in way I wasn’t really expecting.

I‘m sure I’ve commented on similar posts, and I’m sure this subject has been covered extensively by others… But in my previous post I talked a little about how I became physically disabled due to medical issues in my mid-twenties, while I was studying nursing and working in healthcare. After having surgery and applying for disability, I transferred schools, and changed my major from nursing to Art. Ever since then, though, I feel like I’ve been off my “path” in life, and haven’t really found any of the other jobs, hobbies, or volunteer work I’ve done quite as fulfilling as working in healthcare, and it’s a bit depressing since I know I’m really not healthy enough to return to that field. 

I was born with a heart-condition, and I talked a little about how traumatic it was seeing elderly people hooked up to machines in the hospitals and nursing homes I was training at, like I was as a child when I was recovering from surgery, and how stressful it was… But it was also really emotionally fulfilling and rewarding, feeling like I could help people and make a difference in their lives. Even though my own life-experiences, and personality traits, (like being a pretty extreme introvert, and having some pretty profound medical PTSD that I wasn’t aware that I had until I was working in healthcare, on the other side of the patient/provider relationship) maybe made me not quite cut out for it… it still felt like a rewarding job, and like I was on the right path.

In my heart and mind, nursing just made so much sense to me… And everything else I’ve done, since then, feels like it either hasn’t made sense, or hasn’t lived up to expectations. My last post reminded me of that, but I’ve thinking about it, funnily enough, since I watched the first season of the (*spoiler alert*) live-action version One Piece on Netflix, where there’s a subplot where a sickly heiress gets better and wants to study medicine. Being sick as a child and wanting to help people just made so much sense to me, but I guess it’s a form of divine intervention, or maybe fate, that I was pulled off that path for whatever reason. 

If you feel like Chronic Illness got you off your chosen path in life, how did you reevaluate, and recalibrate, to find a new path to walk on?

I have become death, the destroyer of worlds.

And what was your experience? To be specific, I’m not talking about any relationship where dating a healthcare worker would be a conflict of interest, but just more generally. I’ve been talking to several men who work in healthcare on dating sites, but I’m concerned that dating me might feel like an extension of their work, since I’m chronically ill and on SSI. On the positive side, though, I think someone who works in healthcare might be more empathetic and understanding of my specific limitations.

I remember this was my favorite video on YouTube when I first discovered it! I love this postage stamp outfit on her! I really hope she someday returns to her pop rock/indie rock roots. 🫶🤘🎸

That’s not why I’m posting it, though… I’m just sharing every recent performance where I love his outfit. (I’m shallow.)

Love his energy on this tour 🖤💀

Would you guys be interested in joining a community for posting AI Albums? I want to create a community, for that purpose, but I wonder if there’s any interest?

I know moderators, here, don’t allow entire albums to be posted so I’m interested in starting a community subreddit for that specific purpose.

What do you think, would you join?

I saw this a couple of days ago, but was a waiting a bit to see if the person who originally uploaded this to YouTube was going to post it, it’s a great show and I’m only about halfway through! The Strokes Full Set @ Allianz Amphitheater, at the Riverfront, in Richmond VA (07/12/26)

Hey folks! 👋😊 This is one of my very first experiments using Suno’s new “mashup” feature! I really like the result, but unfortunately… it doesn’t contain all the lyrics! (The full lyrics are posted, below.) So I’m still working on creating a better version of this song… Sometimes Suno (and other AI programs) don’t know when to end a song… This song has a couple false endings, sort of like a Marvel movie… But I kept them in, because I love the idea of AI losing it’s “mind,” lol! Though, truth be told, I could have edited the outro a little better… because it feels slightly “clipped.” (My mom said, “It sounds like he went down with the ship,” lol!) This song is about wanting to be there for someone who is going through a tough time, even though it might end badly for you. (It’s about that type of internal conflict, and I think the AI picked up on that, though there were a couple of worse versions with better outros.) I hope you enjoy it, anyway! Thanks for watching! 🤭😂🤣

“Down With The Ship” Lyrics

I don’t wanna go down with the ship, I don’t want to see you drown, Do you even know how to swim? Things will be better when I’m not around.

At least for me, I don’t wanna see, What’s left of you when the sharks get through with you, and seagulls pick your bones. Things are so much better when I’m alone, and I’m on my way back home.

I don’t wanna go down with the ship, things are better when I’m alone. I don’t wanna drown in your abyss, Things are so much better when I’m at home.

But I’ll be there for you, swim against the tide; I’ll be waiting for you on the other side, Of truth and lies, And your foolish pride, And your suicide note reads, “At least we tried.”

I don’t wanna down with the ship, I don’t want to see you drown, Do you even know how to swim? Things will be better when I’m not around.

At least for me, I don’t wanna see, The way the way the world picks you apart, it’s not for me, I’ve got places to be — but I’ll keep you dead inside my heart. Swim against the tide; I’ll be waiting for you on the other side, of those who died, And those who lied, And your suicide note reads, “Forget your pride.”

I don’t wanna bail out of the plane, I don’t want to see you when you’re just a stain, upon the ground, and that’s all they found, I like you better when you’re not around. I’m in six-feet deep, but I don’t wanna Keep so many leagues of sea, between you and me.

— Lyrics written by AM McGee,

Performed by Suno AI

Hey, LPS community! 😊💕 My brother was here for his birthday, and together we created this little LPS Jaws parody short! I hope you enjoy it! 🩵🦈🌊🏄‍♂️🤭😅😂

P.S. Please forgive our messy kitchen in the background, thanks! 🙏✌️🫶

Do you think the MV will debut a new song by the band, or will be for one of the first two singles off of the new album? I’m kind of imagining a spaghetti Western filmed in Spain (tortilla western?) starring Walter Goggins.

P.S. My sister who has been to Spain told me that a Spanish tortilla is some sort of egg and potato dish, and not just a piece of flatbread like it is in Mexico and the United States. Feels relevant.