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Cake day: July 1st, 2023

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  • I went for surgery that was to repair a urethral stricture, with the expressly stated reason for doing it as being able to be catheterized in a future spinal fusion procedure. I told every single member of my care team this information, and all knew about the spine instability. A Spondylolisthesis diagnosed by their same hospital system.

    I woke up in agony screaming before I could see. They put me in a position that allowed my back instability to shift. I was screaming to drop the bed. The nurse told me to calm down.

    When I was finally laid flat, I noted I could not feel my genitals and I could not feel about half of my legs or any of my feet. Totally numb.

    I was discharged from the hospital 3 days later with a walker because I couldn’t feel my feet and needed assistance to walk for a proc sure that never should have required it.

    They billed me $250 for the walker, and never followed my requests to ascertain why I was paying for a walker that was the resulting need of malpractice. This was sent to collections.

    I get phone calls weekly about a walker I should never have needed, and should not have been billed for as “outside of network” because it was not pre-approved for an urology procedure.

    Who in the fuck assumed a loss of leg function from an urology surgery? Who gets that pre-approved?

    Fucking cunts.


  • It may seem like that is the case for a bit, and often does to many patients. Myself included.

    Keep in mind the target population is patients who are centralized sensitization patients. There are alpha channels of nerves that through real physical injury have created a feedback loop in the nervous system with the brain.

    In these patients, who do have very real injuries, the pain levels are outside expectations for the things we can test, scan, see on imaging etc.

    The mechanism is complex but essentially you can think of it as the nerve bundles of specific types are far more sensitive to stimuli and the brain becomes far more sensitive to signals received.

    Breaking this feedback loop, which is often fed by avoidance of things, is important.

    As for data, they have published papers in many journals with more than 20,000 patients who have been through the clinic showing progress improvement. Reductions in standard assessments for depression, improved mobility and exercise function, as well as removed reliance on medications / the polypharmacy causing underlying greater symptoms is proven in their large data set.

    A lot of the mental model that has real impacts to physical symptoms revolves around breaking previously unrealized classic and operant conditioning that patients with this chronic pain sensitization often have present.

    To correct and see the clear picture without clouding it, medications must be removed from the picture as polypharmacy issues can create a mess of problems that seem like they are bodily in origin but are in fact from the medication interactions.

    It is a program vetted by the chronic pain treatment community for over 20 years, and the data is well reviewed, with every hour of the time a patient spends there carefully considered and measured for efficacy.

    The program gets referral from many physicians in various other disciplines within and outside their hospital system for patients that meet their criteria.

    To be clear, this is not a fly by night theory. It’s one of the best hospitals in the world with a program of pharmacists, doctors, PTs, nurses and supporting specialists who all meet daily per patient and make individual care plans. You seem them daily for hours a day. They monitor blood work and vitals as well as metabolic data as they taper medications. It’s deeply unpleasant but designed very intentionally to help. It does help.

    Anecdotally, a patient story:

    They came into the program malnourished, on a feeding tube, intense abdominal pain, GI bleeding, and on significant opiates to tackle pain levels from the GI issues.

    On discharge, the patient had no expressed pain, was back to eating normally without the feeding tube, and was regaining weight . GI bleeding stopped.

    6 months later they went back on pain medication from a pain physician and were right back in the ER with the same symptoms. Following the program’s instructions the same reversal took place again!

    The power of the operant conditioning from taking medications when feeling symptoms is a powerful one that impacts the baseline arousal states of the parasympathetic and sympathetic nervous system. These impact all sorts of bodily processes which seem counter intuitive to apply to physical real problems, but the results speak volumes.

    Everyone arrives a skeptic. I left seeing benefit in my life as a patient who these things apply to. I am not uneducated, I have created software to run clinical cancer trials for years. Yet even with that formal intellectual background I was missing things that had impact to my health condition. The average patient has less exposure to these things, and I spent 10 years seeking help for the pain before this from many physicians. Many things were tried. So all of that experience and exposure to alternative therapies and modalities to this one was brought in with skeptical critical analysis of their methods.

    There is an element of trust required, and it is HARD, but the easy path of medicate or cut it out is often not the solution with patients like us. Since pain is very much a central nervous system process, treating as such makes sense.


  • Many chronic pain patients suffer from something called central sensitization.

    I do, though didn’t really know about it in detail before finding a clinic that treats those patients.

    I did 3 weeks at Mayo hospital’s pain rehabilitation clinic to run their program for patients that are all specifically central sensitization. You go in a bit blind not knowing what the program is, intentionally on their part.

    It is run by several world class cognitive behavioral therapy doctors, and a team of nurses and physical therapists that work with you daily. It is… aggressive. You have no option to not do physical therapy or cardio, of which there is 2 hours and over 20 exercises to do every day. No matter how you hurt or feel. People who were there were all objectively seriously injured at one point and had like me real issues and real disabilities. The most empathetic thing that could do for you is to not acknowledge your symptoms and just make you do it.

    They also took all and I mean ALL medications. Couldn’t have miralax. No advil. No gas medicine from the gas station. Nothing taken for symptoms. You could take things prescribed for conditions like aside reflux disease or insulin for diabetes, but nothing for how you felt.

    So imagine having to do 2 hours of intense exercise, giving up all medications in about 3 days time, and doing things cold turkey for 3 weeks without any room to tap out. On top of that it is 35 hours a week of lectures on various topics related to the condition of centralized sensitization, chronic pain stress management, biofeedback, depression, anxiety, and skills to better enable you to live life.

    They even held 1 hour sessions a week with family to summarize key lectures and give Q&A for them to help the patients be better supported in this weird chronic pain thing most families don’t understand.

    It’s intense and not for everyone, but I went from being unable to do any physical activity, even walking the dog while I was taking pain medications and muscle relaxants etc. I went from that to biking 10 miles a day, at a 3:45 minute mile pace. I started their reconditioning program at 1 lb dumbbells doing curls for ten reps. I am now, 8 months after the program, curling 30 lb dumbbells and doing my own 2 hour workouts every week day.

    I am still in incredible amounts of pain. They could not and will not fix the underlying causes physically or biologically.

    However, they change patient lives with the CBT focus on how to live a more function filled life with chronic pain. They make us more active and better able to live a life worth living, within the constraints of moderate, sustainable, and adaptable.

    Anyway, it changed me life and I would recommend it to anyone if they are in the long term battle with chronic pain. I saw specialists and got dozens of medications and scans for things. Surgical procedures, injections, blocks… you name it.

    Only this worked to give me part of my life back.

    Good luck to you








  • If you were alive in 1960s America, you would have seen no seat belts, significantly lower life expectancy, children still dying to smallpox and polio, and if you are ethnically from the Middle East; everyone in America would have hated you. Race riots were a massive thing in the 60s, police brutality was rampant against people of color. Even the FBI was trying to suppress race progress.

    You have presidents for decades trying to create racist drug politics to entrap only non-white non-affluent people into cyclical prison systems.

    You have so much hidden then, that happens today, but it was both hidden and far far greater.

    The ideal doesn’t exist at all and more so for someone like yourself.


  • Notice how I didn’t just use the service name?

    Whatever nickname you use for your services. There is no requirement you also use the service name in the tagging template.

    The idea that a breach of a service would have someone looking at your individual password is also pretty silly. There would be variations and pattern matching Lagos run against lists of hundreds of thousands to millions of passwords… but the decryption of a complete password to plain text is so reductions at this point, we are talking about the 0.01% case of a then even more silly “let’s look at this guys password in particular” 0.0001% case on top of it…

    It’s not a real problem because if your service is at the point it is leaking not just salted and hashed passwords, but plain text passwords: you are in a big problem up no matter what for most users. Almost everyone reuses passwords. The real risk is the simple reuse. Get just a slightly different variation and you are miles more secure in the case of a breach that results in full decryption.

    The majority still reuse Password1234! Everywhere. This gives you a easier way to be miles better.

    Better still of course is some sort of managed password vault, assuming you trust their implementation. However, this costs zero in the training, or tech literacy upskilling that even the moderate change to a password vault requires. It’s simply an extension of what people already intuitively know. Thus, barrier to entry is easier while giving you several orders more protection.





  • You can take this a step further to segregate passwords as well.

    Reusing passwords across devices is bad. If one gets compromised you don’t want a password being out into a brute force table to be used with all your other accounts elsewhere.

    This method of tagging using HTML markup styles in your passwords lets you keep the same core passphrase but alter the tagging, specific to the service.

    You can do this easily while also giving you artificial password complexity.

    Example:

    Core passpgrase is “yogurt”

    Password for gmail becomes markup with a yogurt

    I only need to remember yogurt.

    Every device just gets a truncated service tag appended to the beginning and end using HTML style tags.

    Suddenly you have a 26+ character password that you don’t forget and doesn’t compromise you across other services because each is different.