Category Archives: health

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Only the good die young

I wonder how old that saying is?

How long have we known what science only recently figured out?

Here’s how it works: stress hormones suppress the immune system.

The immune system doesn’t just fight off disease. It also cleans up dead, dying, misbehaving and malfunctioning cells.

That means a properly functioning immune system prevents cancer and autoimmune diseases.

There are three ways of dealing with stress.

  • The healthy way.
  • Explode outward.
  • Turn it inward.

The third one results in people pleasers who are too nice for their own good – literally.

The first two both release stress. The third lives with chronic low levels of stress suppressing their immune system.

In Gabor Mate’s book The Myth of Normal it talks about nurses accurately predicting ALS diagnosis based on how nice the person was.

Folks with autoimmune issues talk about “flares” when symptoms flare up after over exertion. The interesting thing is that it happens after – the increased stress during over exertion temporarily suppresses symptoms. When the stress and accompanying hormones decrease and the immune system ramps back up, either ignored issues get addressed or symptoms that were there before but you had acclimated to have to be readjusted to.

So either problems piled up and your immune system has to pull out the big guns or the temporary relief from symptoms reminds you how bad things actually always are and a “flare” is just how long it takes you to readjust/dissociate again.

I like to use the metaphor of shoes sometimes. You put them on in the morning and they fit fine. You walk and stand all day. Maybe they’re a little tired. You finally take off your shoes and it’s such a relief! If you have to put them back on for some reason, now they’re too tight and it really hurts. The thing is, they were too tight and painful before you took them off, you just didn’t notice because you slowly adjusted to it. Even if your feet suddenly swelled – that’s your immune system kicking in and trying to repair things.

I’ve been told that you can actually lose about 70% function in some cases before you start feeling pain.

Human bodies are amazingly resilient and redundant.

Books

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Body Autonomy vs. Vaccinations

If your kid has a hard time with getting a shot, how do you square that with teaching them body autonomy?

What we’ve done is focused on your autonomy ends where another body begins.

If you need to spin around with your arms out – that’s fine. But you have to do it where you have space to not whack into someone else, because then you’re not respecting their body.

Vaccines might be trickier to understand for kids. But your right to go out in public and spread germs and avoid a shot ends where infants, old people, immuno-compromised and allergic folks are risking death because you couldn’t tolerate getting a shot.

It’s totally fine to cry and say you hate getting shots. It’s fine to ask for help with your anxiety. It’s not fine to just avoid it.

Here’s some of the things we’ve tried:

As an infant, nursing during or immediately after to soothe.

Spreading out the shots so there were no more than 2 per appointment even if that meant going back in two weeks for an extra appointment.

Having the kid sit on a lap and get squeezy hugs.

Using a blindfold or hat pulled down over the eyes so they couldn’t see.

Breathing practice.

Reading books about it or social stories.

Playing pretend of it (practicing what will happen & what we’ll do). You can try to get really accurate using a cold wet wipe on the arm and something to gently poke with like a pen or knitting needle.

Getting our own shot beforehand so they could see what happens.

Listening to music.

Using Buzzy Bee

Wearing a tank top so they don’t have to feel their sleeve being pulled up.

Having the nurse/doctor show them the needle (what you imagine is often scarier than reality). “Oh, that’s really small.”

Bringing our own preferred bandages.

Treats afterwards to celebrate their bravery and good dead.

Agreeing to pamper them for a couple days after while their arm is sore.

Talk about how they’re literally being a hero and saving lives.

Listening and validation their feelings about getting shots. (It’s scary, it hurts, I’m mad that I have to do it, I’m frustrated & disappointed they haven’t made nasal sprays for everything already. It’s annoying that it keeps hurting.)

Getting anxiety treatment/therapy.

Brushing protocol with an occupatinal therapist to help reduce sensory sensitivity.

This was what we tried and I’m sure there are other strategies out there as well. Just continuing to try to improve the experience and listening to your kid is a good way to reinforce that you’re trying to respect their body as much as possible – without risking other people’s lives.

We also talked about how in extremes, not respecting other people’s autonomy will result in losing ours. For example, adults who commit assault go to jail and lose their autonomy & freedom.

Even if getting a shot is super painful and we get miserably sick for a week every time – those are still temporary. Death is not. And while most often you don’t know who you’ve killed with your germs and you can live in ignorant bliss, sometimes you do – a baby cousin, a beloved grandparent. And you can’t undo what you did, you would just have to live with the regret.

A really informative video about vaccines and the (lack of) risk.

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The Hidden Epidemic

It’s estimated that childhood sexual abuse (CSA) affects 1 in 5 children ages 0-17.

Which means 1 in 5 adults is a survivor of CSA.

CSA is traumatic even if you don’t remember it.

And anyone thinking 0 year old babies aren’t at risk – we know I was assualted by a grandparent when I was 1 something. We don’t know if that’s when it started or just when I was able to verbalize it.

Why am I telling you this?

Because prevention is the cure. And to prevent the problem you have to be aware of it. And if no one talks about it, how can anyone be aware?

Also – it was NOT MY FAULT. And I have NOTHING to be ashamed of.

And neither do you. It’s ok to cry. Better to process the grief than to turn it inward or lash outward.

Ok, so now what? If you’re a survivor – get trauma treatment. Regular therapy most likely won’t help.

If you’re a parent – educate yourself and your kids about consent, body autonomy, tricky people and bad secrets.

Stranger danger isn’t a thing. Strangers are EMTs and store clerks and firefighters who you’ll rarely interact with and will usually be perfectly safe doing so, possibly even life saving.

Tricky people who don’t respect body autonomy and ask kids to keep bad secrets are the dangers. And they’re usually (around 90% of the time) family or friends or other people who aren’t strangers – like some priests and coaches. Just like most kidnappings and Amber Alerts are due to non-custodial parents taking the kid(s), not strangers.

Resources:

Books for adults about trauma:

Books for kids I own:

Books I plan to look into:

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A Diagnosis is Just a Label is Just a Tool

I’ve talked about labels before. Today I was thinking about how a diagnosis is just a medically recognized label.

Like any tool it can be used or not, and used well or poorly.

Another thing a diagnosis or label is, is language. It’s shorthand that allows those who understand it to skip past a lot of repetitive description. And like language it’s usage and meaning can and does change over time.

So, is your diagnosis limiting you? Or are you using it as a tool to liberate you and access support? The U.S. medical insurance system sucks, and working to improve it is definitely worthwhile. At the same time, understanding and figuring out how to work within the existing system might be necessary for many of us until change does happen.

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Link Tracking – Pain Treatment

I’m working on reconnecting with my body so that I can manage my pain appropriately and do my physical therapy exercises.

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Dental care list

Preferred order but not required:

Mouthwash – swish for 30 to 60 seconds, then spit into sink

Floss (gets mouthwash between teeth)

Rinse and put away flosser

Brush:

  1. Wet brush
  2. Apply toothpaste if using (optional – the friction of the bristles is enough)
  3. Divide mouth into quadrants, spend at least 30 seconds brushing each one
    1. Either upper right, upper left, lower right, lower left
    2. Or right outsides (teeth together), left outsides (teeth together), top insides, bottom insides

Test for clean teeth using your tongue, especially both sides (inside/outside) of all four back molars. Get any spots that aren’t clean/don’t feel smooth.

If you can’t reach the back molars, look into tongue tie.

Rinse and put away toothbrush.

Clean tongue (use toothbrush or scrape with spoon, no special tongue scraper needed).

Clean tonsils if required (I use the spoon handle).

Spit as needed.

Spitting is why we brush and floss in or near the bathroom. If you live alone the kitchen sink works too. If you don’t live alone then you need to coordinate with those you live with to see if they’re ok with you brushing and flossing outside the bathroom.

Why brush & floss:

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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: