Here’s how stupid I can be

I was on the phone and this is what I wrote:

$1500*

On**

$281****

$proof of medical expenses*****

Lease agreement 958

1410******

-958

-500 something *******

———

The above was what I wrote while on the phone in Google Docs Monday afternoon, adding my notes Tuesday morning.

*I already forgot what this was

** And this

***This is where I said “That’s a negative number. Does he get the full amount with that?” The answer was “Yes” and I started laughing and crying at the same time in relief that I didn’t have to get any proof of medical expenses (raise your hand if you HATE PAPERWORK) and then thanking the person profusely.

****Current maximum monthly benefit for a single adult as of writing this

*****The number I thought I needed to figure out to maximize benefits and minimize paperwork

****** Current SSDI as of writing this

******* Utilities default exemption

Nope, don’t care enough to make this a nice clean click through, this is just a log. If you need CalFresh help – look here or do a web search.

The Pendulum Prunes the Prune Tree

Pick a topic

Identify your position OR direction

Existence is a Rube Goldberg self sustaining machine.

Too flexible and the system squishes. Too rigid and it is brittle and breaks.

Just right means there is wiggle room between those two extremes. Which means that there is room for things to go wrong, so then you need a maintenance system.

Which needs it’s own maintenance system.

And then it’s maintenance systems (turtles) all the way down.

At some point humans decided that they were able to force humanity to keep existing.

Then the pendulum swung and we came close to making humans not exist.

Now we’re in the smaller pendulum swings – how do we keep existing as humans in a way that we will want to do so?

Pro-life is about forcing humanity to keep existing. We don’t need it anymore, but it was a very important system for a very long time, which means it has to go in a VERY bad direction to remove or correct the system. The flaws in the pro-life system also forced us to develop better ways around it like Plan B medication, other forms of birth control, etc.

Often to learn how something works, we have to break it. Which means that we need a way to break it that we don’t recognize as breaking it. Trump was a Breaker. And because he existed, we learned so many things about what we needed to fix or improve or protect that we thought were safe.

Skinner broke his child. Trump broke so many children that ways of fixing children and families will become so common and ubiquitous that it will change humanity for the better. Because right now there are many identified ways to break a human, and one well researched way (Gottman emotion coaching – Authoritative parenting) to prevent a human from breaking.

And humanity is working as fast as it can to develop ways to self select for a better humanity. You distract those who are weak enough to choose distraction. And you find ways to support and heal those who choose to help.

We’re already breeding and training animals and developing and training computers to help with both the healing, distracting and helping of humans.

Humans can maintain humans. We now understand humans and the planet well enough that we are trying two extremes for maintaining humans.

We’re also already selecting for the next dominant/co-dominant species.

And we’re already teaching humans to love their replacements.

Are they our pets, or are we theirs?

Is it more impressive that we understand them, or that they understand us?

Dogs are to maintain humans. Cats are to teach humans to maintain animals they don’t understand.

Birds and Octopi are the next two to evolve beyond humans or co-evolve. Whales/dolphins are the in between for Octopi. They may be translators? Or they already choose to exist in simplicity, beauty and song. Birds can already speak and understand human if someone is willing to teach them that we are intelligent friendly beings rather than dumb monsters.

Someone has already imagined a possible future or present. If you search for the story you can see the next step.

My favorite ones were the sci-fi where the human had intelligent animal companions.

If I wanted to pay for an AAC (like developed for Autistic non-verbal humans) I could teach my cats or a bird to use it. I understand them well enough I don’t need to invest yet.

The cheap version is already out of buying a set of four programmable buttons and using those.

Animals are better at learning our language than we are at learning theirs. We’re good at teaching them to understand us.

Vegans recognize that we are exploiting some animals and that enough people don’t recognize that, so they are pulling the pendulum too far in their direction to change where the point of equilibrium is.

I’m looking forward to lab grown bacon and I appreciate their sacrifices.

Boundary scripts

Talking with someone about setting boundaries with their mom.

I’m writing this stuff out because I need to practice boundaries as well, so thinking things like this out helps me practice.

Scripts:

“Mom, do not ask for a sleepover again. <Child> has already said no. If they changes their mind we’ll let you know. If you can’t respect our boundaries, we’ll have to leave and visit another day.”

Then if mom brings it up again – “Ok mom, we’re leaving now, see you later.”

If she asks why:

“It’s time for us to go.”

“We can discuss it later.”

“You sound <emotion/feeling>, we need to go now, let’s get in touch over the phone when we get home.”

Explaining invites argument. It’s not your fault if your parent can’t recall the boundary you set. It is your fault if you don’t hold your boundary. When they are upset is not the time to remind them. When you’re both calm getting them in writing might be helpful.

More self-care scripts (originally devised in collaboration with and for my own progeny):

https://docs.google.com/spreadsheets/d/14t_WNNYpqguyGjk2Zp9UfcrMYqyqOIJhhy3GUmMqBVE/edit?usp=sharing

 

 

Sutures (Stitches) or Gooey Gooey Glue?

I have EDS.

Glue allergies run in my family.

I’ve read (and can link later if someone cares enough to request it) that because our tissue can be more friable (tears easily) that stitches can result in worse scarring (keloid scars?). I’ve known people who have suffered from excessive scarring after surgeries before they found out they had EDS.

I chose glue for the tongue tie release since I’ve found I generally am fine the first use of a glue (mostly taping for joint support or bandages) and then move on to rash the second or third time and then I can discontinue use. I think the glue was mostly gone by the first day or two, definitely faster than they expected, but it healed up nicely.

I had dissolving stitches post-partum, getting the stitches was the only thing I needed pain meds (nitrous oxide) for. Getting those stitches in 2015 was the most pain I’d ever felt until I got punched in the nose in Dec. 2023. No, the lidocaine didn’t help reduce the pain of the stitches at all. Another EDS thing – metabolizing medications differently.

I had some cysts removed from my scalp during quarantine – one had gotten infected and ruptured so it went from “cosmetic” to “medically necessary” according to insurance. The dermatologist used non-dissolving stitches. I took the front one out on my own when it started itching and it healed up nicely. I tried to leave the one in back in until my appointment to remove them. I tolerated an extra day or two of itching and then couldn’t stand it anymore and removed that one too. I regretted waiting because that one took forever to heal while the one I took out earlier was fine. Partially the delay in healing was because it kept trying to form a keloid scar – turns out skin picking can cause scarring, but can also reduce scarring.

So far the Patch bandages and hydrocolloid acne patches are the only ones I haven’t developed any reaction to.

Scripts to Self Advocate with Doctors

  • You see WNL or your health care provider says results are “Within Normal Limits”
    • What demographic was used to establish the normal limits? Are you in that demographic? If no, then more information is needed.
    • If yes, what is the bell curve and where are you on it?

For example: I was WNL for thyroid hormone, and my IVF doctor put me one thyroid hormone replacement therapy because they had found an effect on fertility at “sub-clinical” (WNL but the low end of the bell curve) levels. It cleared up the fatigue I had developed in the prior year even though my thyroid had been checked when the fatigue flared up, so that “couldn’t” be the cause. Except it was.

  • “The test result is slightly abnormal, and it could be several things.”
    • Reply: Ok, so best case it’s nothing, what’s the worst case and the most common case – if those are two separate things? And what’s the next step to rule out (find the differential diagnosis) the worst case scenario?
  • You need an ESR test.
    • The ESR (erythrocyte sedimentation rate) test measures inflammation. Just refuse it and probably go find a new doctor. As far as I can tell ALL illness is caused by inflammation and there is no such thing as “all in your head” meaning not in your body. Your brain has incredible control over your body, so it might be causing the problems, but the ESR test won’t really help direct you.
  • You need a full body CAT scan.
    • I would refuse it, it’s just radiation and the doctor having no clue where to focus. Find someone with a clue. Unless you’re doing it for a research study, in which case, awesome, thank you and how do I sign up? 😀
  • When picking a surgeon, ask:
    • how many of that specific surgery they have done total and annually for the past 3-5 years.
    • what their worst outcomes have been. If they don’t have any, I wouldn’t trust them. Either they are hiding inexperience, or they haven’t done enough to come across a hard case.
    • what the worst possible outcome might be, say with a less experienced surgeon – (look up the answer either before or write it down to look up after so you can verify if they actually know and are willing to tell you the risks)

For example, I asked Dr. Zaghi of the Breathe Institute and his worst cases were some excessive bleeding and having to go back and redo the surgery. He also acknowledged that permanent nerve damage and pain was a possibility even though he’d never had that outcome before.

  • “medically unexplained but not dangerous”
    • This means that they don’t know the explanation, not that one doesn’t exist
    • how do they know it’s not dangerous if it’s unexplained?

This is a great one:

What They Say vs. What They Mean: How Doctors and Patients Miscommunicate | National Headache Foundation (headaches.org)

Assume every medical worker is Neurodivergent – bring a list of questions in order of highest to lowest urgency. Urgency should be based on how much/often it impacts your ability to perform activities of daily living.

References:

What Your Doctor Really Means When He Says . . . (menshealth.com)

How do doctors determine that symptoms are medically unexplained? (healthtap.com)

Home Organizing

Home zones:

  • Upstairs:
    • Entry
    • Gaming/Entertainment
    • Self care
    • Dining
    • Kitchen
    • Nook – Cat/Laundry/Music
    • Office
    • Back bath
    • Master bedroom
    • Front bath
    • bedroom
  • Downstairs
    • Basement
    • Bath
    • Workshop
    • Garden Storage
    • Storage
    • spa
    • front garden (W & S)
    • back garden (N & E)
  • Things to have in zones:
    • Trash, Compost, Mixed Recycling, Soft plastic recycling
    • Scissors
    • lantern/flashlight
    • first aid
    • pen & paper
    • laundry

If I have to get up to access what I need I will lose focus.

Trauma Journal

I want to explore adding back the Adderall as the first most important change to my medications now that I’m out of the hospital.

I think restarting at the lowest dose once a day is fine and working back up from there.

I can keep taking the Depakote without triggering a histamine dump if I loosen the gel caps, take 5 at a time with food or a protein shake and then wait 30-60 for the next dose and snack. It’s only a mildly annoying hassle that I’d like to get rid of once my psychiatrist and I can agree it’s not doing anything for me.

Now that this is the first time I’ve gone without any stimulant medication for more than a weekend – I realize how much it helps me slow down and focus. I also don’t want to risk driving without my Adderall available, which is drastically increasing my support needs. I’m lucky to have support, but not everyone does, so I’m hoping documenting this and educating more medical professionals will help someone else.

I am really sad that I have to spend most of my days hiding away from my nuclear family because I can’t focus well enough to be kind and communicate clearly. I’m home and yet I still miss them. This is the first thing I remember being sad enough about to cry about since coming home. Definitely the experience was traumatic, but I had a traumatic childhood and didn’t even realize it until this year, so trauma is something I’m used to coping with.

When ADHD Medication Wears Off – TotallyADD Why I have to avoid my loved ones right now. 🙁

Schemas or Distortions

Stub

Homework assignment, identify my maladaptive schemas/cognitive distortions

All or nothing thinking. Perfectionist – if not perfect then why bother

Black & white thinking. – using extremes, always, never, ever, completely

Mind reading

10 common cognitive distortions – mental shortcuts or assumptions about how the world works that helped you survive but are no longer supportive

18 maladaptive schemas – thought structures that helped you in one or some situations but are now harming or restricting you.

18 Early Schemas Defined (schematherapy.com)