I'm dying soon. What's a good way to share my heart and mind with my family and the world? I want them to know that life was fucking incredible. - sh.itjust.works

Hey Lemmy, Long story short, I got unlucky. At age 18, I got one of those nasty neurodegenerative diseases that slowly deteriorates the body’s nervous system. Now at age 21, after ravaging my vision, bladder control, balance, memory, heart rate, cognition, and sense of touch, it is now taking over my breathing. My breathing simply doesn’t work during sleep anymore. It slows down and stops entirely before restarting again. I read that this is likely because the disease finally reached the part of the brainstem that controls breathing, and that if it gets worse, it may be fatal. It would appear that I’m hanging on at 1 HP, and the next attack could be the one that does me in. It’s getting uncomfortable knowing that every day is another roll of the dice, because I don’t think mine have many sides left. I want people to know that life was the greatest fucking thing to ever happen to me. I loved it all, even the parts that sucked, just because I got to take it all in. The highs of joy, the lows of sadness, the good, the bad. People will say “Too bad he never got to live a full life,” but I say FUCK that! This was fucking incredible! This IS a full life because it’s the one I got, and just the chance to experience this universe is so unbelievably goddamn beautiful. You think I’m going to complain when we are basically supercomputers, made up of incomprehensibly complicated microstructures, and we have the technology to experience the richest and most creative worlds other humans have to offer ON TOP of that?? HELL NO! From my perspective, there was nothing, and then there was the most beautiful, intricate, and awe-inspiring light show - incomprehensibly detailed, amazing, and endless. Whoever gave that to me, I just want to say that I fucking love you. Whether it’s God, the creator of the simulation, the Flying Spaghetti Monster, or mathematical soup, there is no string of words in the English language to describe how grateful I am. How the FUCK did this happen? I’ve been writing a lot recently in a note-taking app called Obsidian [https://obsidian.md/]. I’m using it to record my thoughts about life and the person I was, because I want to share who I was with my family and the world. See, I was always sort of the black sheep in my family. I often kept to myself because I didn’t always have the best relationship with them. That was all well and good… until now. I realized that once I die, the essence of my personality will instantly be gone, and my family will only remember the boring, inoffensive outer shell that I presented. But I want them to know the real me, even if I think totally differently than them and even if some differences upset them, because at least then they will know what my actual, genuine feelings were. Because I had a whole lot of them. I also wanted to share them with my Internet friends and the hundreds of people in my community who enjoy my projects. I think it would be really cool if people could browse my thoughts like a wiki (save for a few personal pages for just my family). Perhaps I could use something like Quartz [https://quartz.jzhao.xyz/] for the site generation and GitHub Pages for hosting? I’d prefer if it didn’t incur cost. As for the notes for my family, I guess I could put them on a USB stick? The only problem is that it could decay or there could be a house fire or something like that. One thing I’m a bit worried about is the idea that damage in specific parts of my brain could suddenly alter my personality or give me delusions that cause me to delete or remove everything out of some insanity that I can’t comprehend. I feel like I have to physically give my family a copy for them to hide from me in case I become a zombie. But then, what if I want to write more notes for them? Maybe I can have it published to the cloud somewhere and they periodically download it? I wanted to pose the question here, because I think others might have better ideas than what I’m thinking of right now. I’d prefer something I could do in one day, since I really want to avoid risking more days without this. I just want to write and ideally be able to sync everything pretty quickly. My thoughts will never be complete, but I’ll have much more peace of mind knowing that people will at least see what I have written so far.

How would you spend your final days on Earth? - sh.itjust.works

Hey Lemmy, I haven’t been doing well lately. I’ve had widespread and slowly progressing neurological issues for a couple years now - random pain and muscle twitching in my whole body, vision disturbances and damage, dysautonomia, and more. Virtually every individual thing my body could sense had weird, erratic behavior. The U.S. healthcare system has been too slow to fully diagnose me, much less treat me. I wanted to believe I’d be able to live with this condition, but recent events have changed that perception very quickly. This week, I lost the ability to breathe normally, and started having large-scale violent movements when going to sleep (e.g. my arms would fly off the bed or I’d suddenly lurch my body forward). At this point, I have to read the writing on the wall: there is something very wrong with my brain, there is an unknown, uncontrolled process damaging my central nervous system, and it has now gotten ahold of my vital functions. This very well may be the end, and I may leave this world at age 21. My mind reacted to this news in a peculiar way. Instead of becoming extremely anxious or depressed, my mind suppressed these thoughts and started flashing some of the happiest memories back through my mind, telling me what I good job I did and achieved so much in what little time I had. I had so many meaningful and joyful experiences even if I could never lead a conventional life. There are so many amazing things to learn, awesome video games to play, cool projects to build, and adorable cat pictures to fawn over. My life was vibrant and filled with so many amazing and wonderful experiences. I loved being alive and I am so grateful for the privilege to exist. So, my question is, what would you want to do in your final days? What kinds of things would you think about and do? What would you revisit? Would you like to spend your final days at home or go to a hospital and try to stay alive for as long as possible? It’s getting a bit hard for me to think now, since I can’t really sleep anymore, so I think some of your ideas will help me.

autoimmunity rule - sh.itjust.works

How do you advocate for yourself when you have very strange (and possibly dangerous) health problems? - sh.itjust.works

I’m sorry if this post is a bit too long or emotional, but I would really appreciate if someone read it and told me their thoughts. I feel very isolated in my experiences, and I would really appreciate being heard. I was 18 years old when I made the worst decision of my entire life. I used to work at a restaurant, and developed worsening upper back pain. I stupidly pushed through it, thinking it wasn’t too big of a deal. One day when I was working, my arms went nearly limp in an instant, and I could barely move them. I went home early, and my parents told me it wasn’t a big deal. I was freaked out, but weakness subsided after a week. Although not taken until much later, an MRI scan would later reveal a herniated spinal disc at vertebrae C7-T1 making contact with my spinal cord. This event set the stage for the horrors that awaited me. Whenever I bent my neck over too far or lifted a heavy object, I would have a dull pain in the location of the herniated disc, indicating pressure in the area. One day later, I would get a surge of neurological pain and sensations across my entire body. At first, it was localized to my arms and legs, but then it spread to everywhere else below my neck. These flare-ups were very painful and distressing, and lasted for weeks at a time, before dying down to some minimum constant level of pain. My parents told me it was no big deal, probably just pinched nerves. Then for class one day, I looked down for 2 hours to take an exam. And one day later, it took over my entire body. Now, even my face and head were in pain and having random muscle twitches, I developed POTS, I had pain and flashes in my eyes, and my vision became permanently darker. I felt random acceleration, my pupils were rapidly growing and shrinking, I had to pee every 5 seconds, one side of my face began drooping, my throat was twitching, I felt like I had to throw up constantly, and I developed tremors. Desperate to hold on to this less terrifying pinched nerve theory, I discovered a harrowing implication: the nerves that innervate the face, eyes and vestibular system are attached to the brainstem, not the spinal cord. I sought medical treatment immediately. All of my vitamin levels checked, all common diseases checked for, like Lyme disease, even more obscure metrics like copper levels. All normal. I finally got to see a neurologist, and he told me it was just small-fiber neuropathy. I asked him about the other issues I had like visual disturbances, the sudden onset of POTS I had just gotten diagnosed with, and the muscle movements (small-fiber is supposed to be sensory and unrelated to spinal injury). He simply waved those away and said that might be something unrelated, despite the fact that it all happened right after I bent my neck and I was completely healthy before all of this. I saw another neurologist, who told me to just listen to the first one. A spine specialist told me that the spinal cord “still has room to move around,” with regards to the herniated disc being in contact with it, but the fact that pressure there corresponded with a neurological explosion of symptoms the next day, every time and without fail, seems VERY suspicious to me. My PCP also mentioned it as something concerning. One time, I had an episode of confusion and could barely move my arms and legs, so I went to the emergency room. After waiting 15 hours, they told me to just go home. Meanwhile, my parents told me I was overexaggerating and my dad even told me I was making it all up for attention. Having gotten extensive tests and being dismissed by doctors and everyone around me for months on end, I just gave up and accepted the outcome, even if it meant death. I had developed extreme anxiety as a result of watching my body’s systems failing every day, so my PCP offered anti-anxiety pills. I took them and tried to forget about everything, telling myself that everything will probably be okay if I just never bend my neck the wrong way ever again. Obviously, not the greatest long-term strategy, but I wanted to return to some semblance of sanity. It was an extremely horrifying and painful experience for months on end, filled with feelings of dread, horror, and betrayal, and I was just so tired at this point. I am now 21 years old and it has been over 2 years since this all began. Most of my symptoms died down to a low level, but I still occasionally get a new one. (Now, I also suffer from loud auditory hallucinations when trying to sleep.) It seems that the progression hasn’t stopped, only slowed significantly, since I haven’t gotten another flare-up yet. Considering that I’m not dead yet, I started wondering if I still have a chance to turn this around, maybe at least get surgery to move the disc out of the way. But considering how badly things went 2 years ago, it feels like a very tall order. How do I ensure that doctors look into the issue more instead of giving me an unfitting diagnosis and dismissing the wider context?

Is Lemmy a good place to share personal projects and art? - sh.itjust.works

I noticed that a lot of the posts on Lemmy are news, memes, and interesting discussions. I like the regular flow of content we have, and I find a lot of it engaging. However, maybe it’s just me, but I haven’t seen a lot of people sharing projects that they personally worked on, be it art, games, programs, music, etc. I’ve been working on a programming project for a year now, and I’ve thought about sharing it on Lemmy to see what people think of it, but the lack of projects from other people deters me. My imposter syndrome also kicks into high gear and tells me that my creations just aren’t good enough to be on Lemmy, and I shouldn’t taint people’s feeds with my mediocre endeavors; after all, I and plenty of other people are enjoying the content here as-is. So, I’m interested to hear about others’ perspectives: Would you like to see more user-created projects and art, or would you prefer to primarily see more news and focused discussions instead?

A photo of an honest McDonald's - sh.itjust.works

Source: Bing Image Creator (DALL-E 3) Prompt: A McDonald’s building with the tagline “Literally poison”

A painfully relatable kitten - sh.itjust.works

Source: Bing Image Generator (DALL-E 3) Prompt: A cute drawing of an extremely happy cat holding a sign that says “Everything hurts”, big eyes, orange tabby, looking at the camera

A photo of an honest slot machine - sh.itjust.works

Source: Bing Image Creator (DALL-E 3) Prompt: A photo of a slot machine whose logo is “WASTE YOUR MONEY” in big bold letters

A cute illustration of me when I'm reminded that loving parents exist - sh.itjust.works

Source: Bing Image Creator (DALL-E 3) Prompt: A cute drawing of an extremely happy cat holding a sign that says “Everything hurts”, big eyes, orange tabby, looking at the camera

"Sir, this is a Wendy's" logo - sh.itjust.works

Source: Dall-E 3 Prompt: An image of a bored Wendy’s logo with the caption, “Sir, this is a Wendy’s”, red background