Category Archives: links

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POTS update

I got my eds and pots officially diagnosed in 2011 before we started trying to get pregnant. I self diagnosed between 2007-2010.

New things I’ve figured out about POTS.

I realized 7/2024 that many of relationship conflicts were had standing in the kitchen. With my POTS, moving around doing chores and being upright is enough to get my heartrate up to 100. Then add conflict on top. Instant flooding/dysregulation.

Showering is difficult between POTS risk and ASD sensory/transition challenges.

  • Treatments:
  • Pregnancy info: Pregnancy & EDS, pregnancy update 2
  • Comorbidities
  • Misdiagnosis: Fibromyalgia, Chronic Fatigue – is it POTS?
  • POTS explains my temperature intolerances, fainting, dizziness, vertigo, fatigue, tunnel vision, chemical sensitivities, etc.
  • Upset stomach can be a symptom of:
    • Anxiety
    • Hunger (I try eating, if it helps, it was hunger – I like dried apricots for this test)
    • Thirst
    • Gas
    • MCAS
    • POTS (sit down) – here’s why: Syncope can trigger your sympathetic nervous system (brain sends the signal to !panic! it isn’t getting blood to provide oxygen!!), and then when you recover – that can kick off the parasympathetic system (rest & digest – time to dump some digestive juices into your empty stomach!) which can then result in gas, bloating & nausea.
  • Older post on POTS

Gas is one of the first symptoms of POTS I get. What I call Sparkle Fun Dots (usually upon standing, moving upright) is the next and more advanced. Tunnel or blacked out vision means grab something and lean or sit immediately. If it doesn’t clear quickly and you’re leaning, SIT! It’s better to sit in the grocery isle or shower than to pass out and hit your head.

Challenges you may share with me:

My autonomic nervous system doesn’t function properly (POTS), so my sympathetic nervous system has to compensate – I tense muscles to modify blood flow.

My tendons and ligaments don’t function properly, so my muscles have to compensate.

The constant muscle tension also activates the sympathetic nervous system.

So even without my cPTSD, I’m constantly existing with my sympathetic nervous activated.

My goal is reduced activation.

Laying down can allow me to activate the parasympathetic system, but too much time laying down leads to deconditioning, which aggravates the POTS, so it’s a self reinforcing loop.

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Parenting

See other parenting related posts.

Some more recent realizations and resources I’ve found:

I’m sure everyone hears the advice about sleeping when the baby sleeps, and that absolutely won’t be possible for everyone. The part no one mentions is that if you can’t sleep because you can’t fall asleep – ask your doctor about post partum anxiety.

If you can’t sleep because things need to get done – if at all possible ask for or accept more help – let someone do the dishes while you nap with the baby. Let the laundry pile up more than you like. Eat using compostable plates and utensils. Whatever you have to do to survive.

The terrible sleep deprivation does eventually get better.

Does parenting get easier? Not really. Mostly it just keeps changing. But specific things often get better but then get replaced with something else.

When the baby is eating (nursing/bottle) – look at them and talk to them about it. Explain that they’re hungry and eating is what you do to fuel your body. Tell them how much you love them and how amazing they are.

You’re teaching them to understand and respect their body cues. That mealtime is a great time to converse and connect. That eye contact helps you connect. That they are interesting and worth your attention.

Speaking as an autistic mom with an autistic kid, these are skills neither of us learned and while we have ways of compensating and coping, our lives would be easier if we could consistently notice when we’re hungry.

I think I mostly read and texted while nursing until the kid wouldn’t nurse during the day anymore because everything else was more interesting.

I don’t think we played much patty-cake (more eye contact, connection, cross body coordination and motor skills) or peekaboo (teaching them to tolerate/enjoy surprise, patience, trust that people come back) either.

Narrate everything you do including the why.

Elimination communication is worth the effort to be done with diapers asap. Even if you only do it part time.

Sign language is also worth the effort to avoid the screaming frustration of knowing what they want but not being able to say it. Just learn one a day or a week, just search for a new word to learn. It’s amazing the difference it can make knowing a few signs like: milk, more, done, potty/toilet, home, go. Especially things that you might not run through at first (basics like food/water/potty/sleep) such as play, book, ball, colors, want, hurts.

Everything else, just keep trying things until you find what works for you, your child and your family. Keep reaching out and asking for help and support. You and they are worth it.

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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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Things I’ve Shared

For the hard path we’re walking.

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Relationships

Things I wish I’d known earlier in life:

Here’s one from the School of Life relationship playlist I especially like:

Quite a few of the School of Life videos reference ideas that come from the Gottman research. While I tried to apply the Gottman research to my relationships, I now realize that my unaddressed cPTSD/attachment trauma was getting in the way.

School of Life relationship playlist:

Patrick Teahan on relationships:

Crappy Childhood Fairy on relationships:

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Feelings/Emotions

Atlas of the Heart List of Emotions – Brené Brown (brenebrown.com)

The Gottman Institute_The Feeling Wheel_v2 by Dr. Gloria Willcox

Feeling wheel versus emotion wheel

While many researchers and therapists have adapted the wheel for their own uses, the original version of the feeling wheel (with its six core feelings) was created by Dr. Gloria Willcox in 1982.

According to many sources, Plutchik’s wheel of emotions was first proposed in 1980. The two models are similar, with the main difference being the number of core emotions in the center. Strictly speaking, Willcox’s model is the feeling wheel and Plutchik’s model is the emotion wheel.

Emotion Wheel: What it is and How to Use it to Get to Know Yourself (betterup.com)

“Emotions play out in the theater of the body. Feelings play out in the theater of the mind- Dr.Sarah Mckay Neuroscientist & Author “

Emotions play out in the theater of the body
Different Types of Emotions in Psychology – All Questions Answered (calmsage.com)

I’m don’t believe you can actually separate the mind and the body (if the mind is in the brain and the brain is part of the body) but it’s a useful concept for trying to understand them.