Tag Archives: changetheworld

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Ehlers Danlos & Neurodiversity Research

I’m so excited, a friend of a friend just shared all this:

Dr. Eccles specific research areas are Neuroscience, Psychiatric and neurodevelopmental features of connective tissue disorders, Mechanisms of chronic pain and fatigue.

The quickest way to see a summary of all her 67 published medical research with active links to each is here: https://www.researchgate.net/profile/Jessica-Eccles-3

Some titles of pubs just within the last 2 years:

  • Towards a Neurodiversity-Affirmative Approach for an Over-Represented and Under-Recognised Population: Autistic Adults in Outpatient Psychiatry
  • Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain
  • Variant connective tissue (joint hypermobility) and dysautonomia are associated with multimorbidity at the intersection between physical and psychological health
  • Connecting brain and body: Transdiagnostic relevance of connective tissue variants to neuropsychiatric symptom expression

You Tube Videos:

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CalFresh

Info Dump mess – I want to come back and split this out to three different things:

  • CalFresh help since clearly there is a bunch of stuff available I found this time that I didn’t last time
  • Yelling at people who need it (I love Penelope Trunk, she yells at the world with her blog and you can pay her for coaching if you want her to yell at you privately, or take her classes if you want her to yell at others while you quietly think about how you needed to hear that – if you have a trauma background, you either are still avoiding being yelled at (read her blog so you can pretend she’s yelling at other people until you can’t resist commenting or taking a class or coaching session), you need to be yelled at but still hate it, or you recognize how helpful it is an love it.

    Oh, Penelope, that’s why we love you even if you think we hate being yelled at.
  • whatever other journal junk I need to clean out of this for those two

Stub

It took three tries requesting a call back on CalWin.

The most important thing I’ve learned recently is to say this:

I’m autistic and I KNOW my questions seem really stupid. I just need your help please.

I couldn’t say that without crying because it sucks to know how smart I CAN be and how stupid I WAS being because I couldn’t function at the moment they called and I knew I HAD to take the call.

I had to pull out a calculator and a blank document on my computer and do the math before they could answer my questions and then I cried again in relief that the solution was so easy.

The math:

If you are disabled and only get SSDI (see note below about cash help)

Then:

SSDI Amount
– Rent (LEASE amount)
– Utility exception of $500+
= Your income

If your income is 0 or negative, then you qualify for the maximum CalFresh benefit.

I had to ask the person three times and say that I was sending cash monthly and had a document in writing to the rental company promising to send the cash amount monthly before I believed them:

IF YOUR FAMILY IS GIVING YOU MONEY and you don’t live with them – THAT IS NOT UNEARNED INCOME.

Your rent is what your LEASE says the person ON THE LEASE owes, not how much of it you pay AFTER any help you receive. Yes, tell them about the help if you are doing the phone interview – so they can reassure you it doesn’t matter.

NO – DO NOT DO ANY MATH for them.

YOU DON’T KNOW THE EQUATIONS.

Or you got someone that sucked at asking questions. More likely, if you’re autistic, have an autistic relative, or think you’re smarter than the person you’re talking to – either you’re not or you’re a jerk.

Being stupid, admitting it and then thanking the person afterwards is better than being a jerk.

I thanked the person very specifically and heard a laugh of pleased surprise.

I know what that laugh sounds like, because I’ve heard it and I’ve made it enough times.

I said something along the lines that I recognized that the job sucked and didn’t pay enough and that they were doing it anyway to help people and to please keep doing it until they found a better way to help people.

Anxiety will lie to you that you can’t trust anyone. If you grew up with trauma, then you will have anxiety because that’s how you survived the trauma of your childhood.

The way you recover is that you figure out that humans are all trying the best they can to survive, and if they have anything left, then they start to thrive.

The way you thrive is to connect. And to connect you find people you want to listen to, or who want to listen to you.

You only need one mutual friend. You can be a friend to someone who needs you as a friend, and you can have friends that you need that don’t need you back. There are so many kinds of friends.

If you journal privately, you’re managing your anxiety.

If you write publicly, then you are sharing your truth just in case it helps ONE other person. So the things you’ve learned and experienced can help someone else the way you wish you had been helped.

Authors are telling the stories they need to tell. Popular authors are telling stories that many people wanted or needed to hear.

The internet has made it so we can tell our stories so many different ways so that any human can find the story they need.

I found the story of the worst of humanity and that I can see and understand the worst thing a human can do and forgive it – because that is how much they suffered and are suffering.

I understand why Nonviolent Communication is the name that author chose. And I understand why people call it NVC because they want to help people who need to learn to communicate, but are too far from pain and trauma to understand it, or too close to tolerate it.

I’m so glad that people exist that can’t even imagine existence being so painful that you don’t want to exist anymore. I was shocked to learn that my father-in-law is one of those people.

Either you understand suicidal ideation, or you don’t.

I don’t know if my husband does. I know I do and I feel sorrow because I think my child does too. I do know my father in law doesn’t. He was so confused when I asked him if he had ever WANTED to die. Like, couldn’t even imagine understanding why any human would want that level of confused.

These people are working for crap pay dealing with us at our worst because they either want to or are willing to help. If you think you’re smart, then recognize that they are the experts here and you need to trust them

You’re not being honest or helpful by “doing the math” for them, you’re giving them the wrong numbers.

Don’t bother trying to call and wait – they have a 500+ backlog as of today and every time I tried to call and wait I was 40+ in the queue and never got to a human before the call dropped after 2+ hours on hold.

Go on CalWin, request a call back on Monday, if you don’t get one or miss the call, request it again the following Monday.

Right now the state has been sending emergency aid and you might have more on your EBT card than you realize, just go try to use it or:

CalFresh EBT Balance and Login – California Food Stamps Help (icaliforniafoodstamps.com)

If you can’t find your card – report it as lost: EBT Card

People are trying to help. And the more ways we try to help, the more people we will help.

When I was functioning, I didn’t find this site, but I did look all this up on my own, so I knew my family member qualified for the maximum and was getting only 1/10th of that amount.

We got a person at some point, and they pointed us at the form to fill out and upload on CalWin so that I can talk on behalf of my family member without them having to be present to give permission each time. You can give any adult you trust permission to apply for you.

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Focus of Attention

Focus is a skill.

Focus is how we direct our attention*

Attention is the process by which we make observations.

Observations are the process by which one question is answered and another is identified.

I choose to focus internally to be ready to focus externally. This is self regulation.

Dec. 17 2022 log:

*Attention is the most valuable thing anyone can possess.

More valuable than time, money, power and perhaps even love – depending on your definition of love.

The ability to control our attention is the most powerful ability any human has. And perhaps that’s the defining trait of humans. Free will – the ability to choose what to pay attention to and when.

My knowledge of Christianity suggests that at least one religion agrees with that assumption.

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Systems

For a system to work, it must be used.

I choose to use it.

To use it I need to be able to focus.

Dec. 18 2022 logs:

10am Ask what’s next? If I don’t remember, it is logged. Where? I remember that it is logged in Habitica or the Calendar. Habitica is more flexible, the calendar is time restricted. The calendar is for sharing information and coordinating with others. I’m not ready to connect with others until I have connected with myself.

11am I didn’t stick to the system. Why?

It’s not robust enough. Why? I didn’t document errors. Why? I got distracted. Why? I failed to focus.

Dec 17 2022 Log:

Stub – add definition

A process.

A supportive framework.

A series of actions.

Support.

Systems help reduce the energy cost to achieve a specific outcome or output.

I am building a system to help me human (verb – the act of being an aware, focused, intentional being). I did not learn during my first 5 years, so I need much more support. I am trying to build a robust system with error logging. This way someone else can see the problems and work to correct them, without having to spend time re-discovering them.

I trust that someone exists or will exist who can and will take this further than I am able.

  • Communication systems
  • Cat care system
    • Cat feeding system
      • metal or ceramic reusable bowls or sustainable one time use compostable plates
        • plastic can lead to chin acne
  • Device charging system
    • Frequently used locations get extra chargers
      • label chargers so they don’t get removed
      • include system reference on the label? Or wait to see if labels fail? Prevention vs Cure – Prevention, answer is yes to include
    • Mobile charging options
      • carried
      • stored in transport
    • Charging schedules
      • factors – solar generation, time of use cost
  • Pain prevention (self-care) system
    • Pain is behavior of parts of the body
    • behavior is communication
    • unmet needs are being communicated
    • next step is to understand and meet the need
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Culture, Society & Constructs

Stub below from Dec 17

Culture definition

Society definition

They are constructed systems put in place by humans and human animals trying to work together.

Stub below from Dec 16, 2022

Social model of disability – social structure – social constructs – social system – to be disabled means that the system is failing and could be improved. The system is blocking or removing your ability to get your needs met.

The first step is knowing what your needs are.

The second is knowing how to ask for what you need.

The third is being able to keep asking until you get what you need. Preferably in either a different way or of a different person each time.

The way to do this while reducing the need for fortitude (grit, perseverance, persistence) is to use the scientific method.

If you document your needs, what you did to try to get them met and the results – then formulate a conclusion (or more accurately usually a new hypothesis to test), you’ll be able to try different ways and keep track of them.

This might help avoid ending up feeling like you are banging your head against a wall or are trapped between a rock and a hard place.

Societal norms or rules can be supportive. They can also be restrictive. Knowing why the rules exist makes it easier to decide if they are still serving the intended purpose.

The overall purpose of a society is to allow humans to work together more efficiently – to better connect. If you know the rules of the game, it’s easier to play, more fun for everyone and you get more play time since you don’t have to explain all the rules.

If someone is not playing by the rules, either they don’t know the rules or they can’t or won’t follow them. Which means that the rules, the system, isn’t working. So the system needs to be updated. Even if it’s just to properly incentivize playing by the rules.

First you learn the rules. Then you follow them. Then you understand them. Then you can change/bend/break them. And if we want to create a better future, documenting them and why you follow them or not will make it more efficient for people in the future to understand them and make their own decisions.

Just keep asking why.

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Thinking Thoughts

Thoughts are stories we tell ourselves.

We use thoughts to understand the signals our brain sends us.

Not every thought we have is true.

“I’m having the thought that….”

Thoughts have power. Consider the placebo effect.

The way we have thoughts is that there is electrical activity in our brains. Electricity is energy, energy can also be called power.

Thoughts have power.

Will you control your thoughts, or will you let them control you?

We have free will.

We can choose to control our thoughts.

Our life is only predestined to follow the path set for us by our predecessors if we do not pause, evaluate, and choose.

If I am choosing, I can choose to make it harder for my descendants to choose, or I can make it easier.

I choose to make it easier. This is my intention.

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Scientific Method

  • Hypothesis = Create a question
  • Experiment = Ask the question (test the hypothesis)
  • Data collection (observation) = document the answer
  • Conclusion = document the parts of the question left unanswered and any new questions.
  • Questioner chooses which question to focus on next

Question: What do I do next? Make a choice.

Dec 16 2022 Log: What is the scientific method?

Scientific method – Wikipedia

I choose to use the Wikipedia link because I just realized that Wikipedia is basically what I’m building here on my site for how my brain works. Me-pedia!

And now I’m laughing – I searched to see if there was a MePedia already. And there is:

Myalgic encephalomyelitis – MEpedia (me-pedia.org)

And reading the about ME…… it just sounds like everything I’m talking about here but from a different perspective. It’s just an Ehlers-Danlos highly sensitive brain with trauma damage.