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Joined 5 months ago
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Cake day: April 8th, 2025

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  • Imagine every day, your muscles get just a little bit weaker. Maybe you can’t open a container you used to be able to. Or you find you can’t lift your arms high enough to shampoo your hair anymore. No matter how much you try to exercise, it never helps. Pain sets in due to incredible stiffness. Your fingers start to curl up until they are nigh unusable. Entire limbs become gnarled.

    Eventually you lose the ability to walk. Then speak. Then eat. And finally, even your breathing muscles become so weak and paralyzed that you constantly aspirate due to your inability to cough. Recurrent infections set in. Then you die of respiratory failure.







  • Here’s my pixy stix story from my youth. Went on a backpacking trip with the boy scouts. As I’m sure many of you know, when a group of boys comes together in the wilderness, their IQ drops a good 20-30 points.

    Anyway, I was dared to lick some horse manure for a huge pile of pixy stix. Huge. I was about to do it when a scout leader came and blew a gasket on me. He was pissed. Went into a tirade about e. coli and everything. I’m sure he punished us somehow but I can’t remember how.









  • I would’ve been right there with you a few months ago, but I must admit diagnosis did unlock a lot of help for me.

    The medical system needs to place a lot more emphasis on prompt and accurate diagnosis, though. Without it, you have people suffering and dying indefinitely. It’s like they don’t care about that, though. They’re happy to blame you for your symptoms and refer you to a psychiatrist or physical therapist. (Something that happened to me twice…)


  • I’m not sure exactly what you mean but I would attribute it to four main reasons:

    • I’m rural and the quality of physicians here leaves a bit to be desired
    • Physicians are overworked and as a result, generally uncaring and unable to provide substantial help.
    • It takes months to get the ball rolling on every step of the process
    • Insurance is hellbent on denying everything

    My situation didn’t improve until I was finally referred to a couple physicians in the right specialty who truly care and were willing to fight my insurance.