Tag Archives: PSA

Public Service Announcement

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Friends

I’m lucky to have supportive friends and family.

I wish I had more local female friends that recognized their neurodivergence. People don’t want to be told that their camouflage is failing.

Right now zoom is tiring as I adjust to my new meds and new diagnosis, so it’s hard to connect with my openly neurodivergent female friends that all live out of state.

I’m posting this so that others might realize that they could be more open about being Autistic and various types of neurodivergent.

Or go take Penelope’s class: Autism research that fixes your life – Penelope Trunk Careers

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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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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.

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Adjusting

Life changing chiropractic for about $20:

Dr. Ruch’s books (WAY cheaper than an adjustment):

Knees: AmazonSmile: GOT KNEE PAIN? Where is Your Tibia?: 9781977224149: Ruch, William: Books

Hips/pelvis (as important as the spine since they mess up everything else if they are off – it’s not just for birthing): The Level Pelvis Method: for Pregnancy and Birthing Ease – Kindle edition by Ruch DC, Dr. William J.. Health, Fitness & Dieting Kindle eBooks @ AmazonSmile.

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Slooooooow it down: eating

Infographics video – processed foods taste good when eaten quickly and not so good when eaten slowly. I would guess that eating slowly makes it easier to taste the various additives.

Chew a bite of food 10 times (aim for 5-10 seconds) – it can reduce the desire for processed food. Unprocessed foods – chewing for at least 10 seconds helps unlock more nutrients and makes it easier to digest the food.

Obesity wasn’t a thing until 1800s, recognized as deadly mid 1900s? Ted Ed

1 hour activity daily kids?

average time daily eating 1.75 hr (ex. Spain meals 1 hour usually, up to 2 with family)

If meals are an hour – and you chew thoroughly and slowly – then you have time for questions and stories. Ask a question, take a bite, chew slowly and focus on listening to the answer. This avoids interrupting, eating with mouth open (small bites make it easier to close mouth), or talking with food in your mouth.

We use “chew, chew, swallow” to encourage finishing a bite before talking. We also wait until the person is done to say or ask anything to reinforce that slowing down didn’t cause them to lose their train of thought or their place in the conversation.

Small bites, lots of chewing. Put down utensils between bites. Wipe hands on napkins. Sip water between bites. Chewing slowly preps your digestive track – if you swallow before food is completely crushed and mixed with saliva, it won’t digest as well and could lead to heartburn, constipation, indigestion. Lack of chewing can lead to gastroparesis because there wasn’t enough chewing to signal stomach acid production. Or it can contribute to SIBO (small intestine bacterial overgrowth) because things don’t get moved through as quickly as they should either because the system wasn’t revved up or the food was harder to move. Things moving through the system slower also leaves it more open to fermentation or contributing to gut permeability and inflammation.

TLDR; Take small bites, chew at least 10 times and aim to completely liquify the bite by thoroughly mixing it with saliva before swallowing.

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Mantras, Affirmations, Quips and Koans

Jan 14, 2023

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

Jan 12, 2023

If you aren’t failing, you aren’t learning – try harder.

The road to success is paved with past failures.

Failure is just a new data point.

Mistakes are only wasted time if you don’t learn from them.

Sometimes you have to make a mistake 2 or 3 times to make sure it wasn’t a fluke.

Self care accountability – the only way to teach it is to model it.

Spend time to save time.

Invest up front for savings down the road.

Kaizen

Slow and steady wins the race.

Rome wasn’t built in a day.

Fall down 7 times, get up 8

8 sideways is infinity

Just keep swimming.

Self-care can increase your willpower, and you can set up systems to reduce the need to use willpower.

Everything has at least 3 steps:
Setup
Execute
Wrap up

Either track total time elapsed or estimate time and multiply by 3. For example a “5 minute” task needs a 15 minute window.

My morning dental care routine can take between 10 to 40 minutes depending on how focused I’m able to be.

Connection is the Cure

We feel lonely when we are disconnected.

Never worry alone.
If you are worrying, find someone to talk to so you can reality/fact check your worries and put them in perspective.

  • H.A.L.T.
    • Hungry
    • Angry
    • Lonely
    • Tired

Dec 5 2022:

To speed up, slow down.

Start as you intend to continue.

We are all made of stars.

To love others – I must love myself.

Practice kindness/compassion (it’s a skill, not a trait).

Success is built on a foundation of failure.

If you haven’t failed, you aren’t trying hard enough.

The only time something is a waste is if you don’t learn from it.

Better the food go to waste than it go to my waist.

Should is a social construct. It’s not real. Either we need or we want. Find the need or the want behind the “should” to transform it into a “could” or a “would”

The only thing that matters is connection.

Self-care requires being connected to ourselves.

We’re all part of the system – if we aren’t connected to ourselves, we aren’t connected to the system.

We all have intrinsic value as part of the system, no matter what other impact we may have had.

You don’t have to do something to be worthy. You do have to do something to connect.

You can’t do it alone.

The biggest and strongest will fall to the many coordinated small.

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Fibromyalgia, Chronic Fatigue, aka

Postural Orthostatic Tachycardia Syndrome POTS aka Vasovagal Syncope

Pain – don’t write off the pain as all in your brain until you’ve explored other options – EDS can lead to pain. Someone who works with fascia or a gentle chiropractor (drop table, wedges, activator, no pop & crack) should be checked with if everything else has been ruled out.

Fatigue – POTS can cause massive fatigue & brain fog. EDS can contribute as well since muscles are compensating for tendons & ligaments.

Nonrefreshing sleep can lead to the fatigue & brain fog as well.

Dizziness – POTS/Vasovagal Syncope

Sensitivity to heat/cold – POTS again, which can lead to Raynaud’s.

Sensitivity to lights & noise seems more like a high sensitivity thing, so related but maybe not as directly. Fragrances are definitely an issue with POTS. Some of my earliest episodes during puberty were triggered by chemical fumes. I was always sensitive to lights and noise, so only the fragrance part was new.

hypersensitive central nervous system that converts some normal sensations to pain (allodynia) and heightens the sensation of pain (hyperalgesia).

Other symptoms of fibromyalgia include:

This is from a description of Fibromyalgia on verywellhealth.com: