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:

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.

3 choices

If you haven’t reduced down to three choices, you haven’t understood the question/task well enough to identify the first three choices.

Many of them come down to:

Unwilling

Unable (willing or not, this is more obvious though if willingness is there)

Doing – choosing

So the first step with any problem is to understand it well enough to figure out which of those three applies. And often once you do you can either:

Set a boundary (be assertive): I will not.

Set a boundary and ask for help: I am unable without support, and I am willing to explore options.

Confirm and agree: If I’m understanding, this is what you want me to do, and if that is correct, I am willing and believe I am able to do so.

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.

Guide for online social communication

Post same amount as other people in a thread or post elsewhere (my blog is my default). Otherwise I’m probably over or under sharing and either way it confuses people more than it helps.

For social groups – don’t give information, share my experiences. If someone wants information they can ask or look around on my blog, otherwise they aren’t ready for it anyway.

Don’t post links unless someone asks for the same reasons as above, there is somewhere else for that.

Drive-by is not a method to live by. Do it well or not at all.

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. 🙁

Waking up

  • Wake up at a regular time
    • use music and light that both gradually increase.
    • 7am seems to be my sweet spot. I also often wake at 4 or 5 which is ok too. If I get sleepy again I can nap until 7.
      • Task: set up Google routine for smart speaker and lights
        • I want to move my playlists so that google assistant can find them
        • I want to change my nickname on YouTube – try some alternatives
      • Find a song about self care or being intentional to start the playlist: https://music.youtube.com/playlist?list=PLC69TIik3wTHPF8CQ9Q8HNvTIwdirGBDd&feature=share
        • Task: set up or get wireless noise cancelling headphones to listen to playlist and assist with focus until medication kicks in and intention is set

Microbiomes

Small ecosystems.

Our bodies as galaxies or universes.

Our organs as planets in a star system.

The biota as the inhabitants of the planets.

We are as gods to the bacteria and cells in our bodies.

They can tell there is something more, and they do not know what.

They can only respond to the environment around them.

They must do the best they can in each moment.

Each has a task they were born for.

They do their tasks to the best of their ability.

If they are not able to, they let that be known.

If the system is functioning properly, they will either get the support they need or be released from their duty.

If the system is not functioning properly, it will ripple outward until the entire system collapses or the impact is large enough to get the attention it needs.