Mast Cell Activation Syndrome

Stub

To do: look into Cromoloyn(?) and beta blockers

For me a MCAS reaction often feels like food poisoning that comes on really hard and fast but only lasts about an hour or two instead of a day.

I found that the supplements I was taking that helped with other conditions were triggering the MCAS reaction when they hit my stomach if there wasn’t enough food with them. Getting the amount and timing was too challenging until I found the Orgain Protein Shakes (ThriveMarket has good prices on them).

I also call the MCAS reaction a histamine dump – the mast cells dump too much histamine into the system at once and can cause any symptoms that allergies can – which are immune system processes overreacting.

The “simple but not easy” (is there a word for that?? I want a word for that, I don’t care what language – to do, search) answer is to reduce the toxic load my body is coping with and increase the nutrients I’m getting.

Cutting all sugar and processed foods would be a major step in that direction.

W.R.A.P. Wellness Recovery Action Plan

I just found out about this. It’s what I’ve already done as my kiddo’s transition checklist.

I just need to make mine now.

WRAP – Wellness Recovery Action Plan: Ep 1 – Beginning Your WRAP – YouTube

Worksheets:

Preparing to Create Your Personal Recovery Plan

Before you begin to write out a plan of action for your recovery process, you need to first assess your current status and decide upon your major needs and goals. Here are some questions to ask yourself:

  •  What are my motivations for making this change? Keeping my job, my family, my friends? Improving my self-esteem and regaining pride in myself and my behaviors? Feeling better and becoming physically healthier? Other reasons?
  • What challenges will potentially be my biggest barriers? Are my coping skills currently limited? Do I have sufficient support systems (family friends, support groups) in place for times when I may need assistance and encouragement? Do I have legal or financial issues to address as part of my plan of action?
  • Can I commit to following the steps I create in order to change my life? Can I honestly say that I am ready to make a major, positive change in my life and that I am willing to do what it takes to make it happen?

If you can identify your motivations, understand your challenges and recognize that the outcome will be worth the effort, you will be ready to create your plan.

Components of Your Personal Recovery Plan

When you are ready to write your plan, make lists of the elements that you will want to address:

  • Personal triggers (places, circumstances, people) to avoid
  • Specific strategies for addressing each identified trigger situation
  • Ways to improve self-care (relaxation strategies, socialization opportunities, health and wellness strategies – sufficient sleep, good diet etc.)
  • Coping skills you need to learn or to improve (anger management, emotional self-regulation etc.)
  • Relapse prevention strategies (go to support group meetings, have a “sober buddy,” attend counseling, etc.)

Writing Your Personal Recovery Plan

You can create your written plan any way that feels most natural to you. In general, you’ll be making “promises” about the positive changes that you plan to implement, in order to uphold your recovery and remain abstinent. In addition, you may also want to commit to certain consequences that you will be willing to incur, should you not live up to your promises. You will also want to detail specific steps that you will take to address each problem or issue that is a threat to your sobriety.

Developing Your Personal Recovery Plan (Template Included)

How to Listen, an example

LIMERENCE: To Heal from Heartache, Face Rejection (and Reality) Honestly – YouTube

This video exemplifies active listening and why we have to tell our stories. What the Crappy Childhood Fairy does is restate what she heard/understood from the letter – that’s called Active Listening.

Side note: It’s way more important than Whole Body Listening which is just a societal expectation.

If we don’t tell out stories, no one can reflect them back for us. And by sharing our stories, other people can see the problem clearly, and then if they are willing to be honest with themselves, see how it applies to them.

Also it’s hard and sucks and I hate it and I’m gonna keep doing it anyway. <insert swears here>

I guess I have cPTSD too. I had heard of it and hadn’t looked into it deeply enough to see that it applied to me too.

Where does the money go?

I prefer to support local companies with really good customer service and happy employees. In general they are not the most cost saving, but the extra cost is more than worth the peace of mind and my time saved by not having to deal with problems.

  • SRY Construction
  • Edible Ecology
  • Organizing –
    • lily
    • other
  • gardener
  • Steve Stone
  • Hassler Heating & Air
  • Pelican Plumbing
  • Berkeley Honda (Eddie)
  • Mr. Mopps
  • TigerTechnologies
  • Sonic Internet
  • Swell Energy
  • EBVHC

Other things I support:

  • How to ADHD
  • WikiPedia
  • Shuumi
  • Yolo County SPCA
  • Epbot

Things I plan to support once I have funding:

  • PBS
  • TED Ed
  • SciShow
  • CrashCourse
  • Mark Rober
  • Kurzegast
  • Team Trees
  • Team Ocean
  • Verge Permaculture
  • Soil Food Web

The Secret Parenting Tricks…

They assume everyone knows, so they don’t bother to teach them!

You know that “game” where baby drops the thing, you pick it up to give it back, repeat until you want to scream and throw the thing? Well, if you don’t play or are “lucky” enough that your baby isn’t into that game…. what you may think you are teaching is that “we don’t drop things on purpose” – what you are actually teaching is that you will only connect with baby the way you want to, and not the way they want to.

So if you lack the patience, fix that. Or just remind yourself that every time baby drops it they are saying “Did you see what I did? Do you love me?” (Gottman: bid for connection) and every time you pick it up to give back you are communicating “I love you no matter what. You are worthy of my love, time and attention.”

Jack in the box/Operation/Perfection – jump scares to practice coping skills

Peek-a-boo – jump scares to practice coping skills, object permanence

Patty cake – cross body movement & coordination

ECHO, Echo, echo…..

Echolalia is functional communication. It is often an indication of gestalt thinking, if you search for hyperlexia or hypernumeracy you might find more information.

Possible functions:

  • practicing verbal skills
  • auditory stimulation (stimming – it just sounds good)
  • communicating – if we’re not understanding, we’re not listening/paying enough attention or we need training

One example is my kiddo would say the exact same line if they thought that I wasn’t listening, or wasn’t understanding, or wasn’t giving the response they wanted/were looking for.

So now I’ll say:

“I’ve heard you say that multiple times now, did you miss my acknowledgement (either verbal or visual) or are you looking for a specific response or does it just sound good?”

<reply>

“Great, thanks for letting me know!”

Boundaries

Boundary song:

boundary vs threat

A threat is something that a person is unlikely to act upon or doesn’t intend to act on and is meant to make the other person act in a certain way because they are scared. 

Boundaries, limits, and consequences are a statement of what the expected behaviors are and what the person will do in response to a boundary being broken.  

Paraphrase from: Parenting: Threats VS. Boundaries, Limits, and Consequences – MMHS (meehanmentalhealth.com)

Good explanation of boundaries:

Boundaries that Don’t Control | Validity Counselling: Between Sessions with Jenny

Autistic employee goes viral with office sign that breaks down ‘bad communicator’ stereotypes – Upworthy

I’m autistic.

I prefer direct, literal and detailed communication

If I am:

Not making eye contact

Not greeting you back

Not understanding your social cues, etc.

There is no malicious intent. It is the autism.

Thank you for understanding.

https://www.upworthy.com/autistic-employee-called-a-bad-communicator-responds-by-hanging-an-important-sign-in-the-office

“This should be the norm tbh!! very proud of you for stating your boundaries and needs clearly,” Alastar wrote. “I wish everyone had signs telling me how to communicate tbh,” Bro added.

“How is it that we prefer direct, literal, and detailed communication, but somehow WE’RE the ones with a communication issue???” Reading cosmere! wrote.

https://www.upworthy.com/autistic-employee-called-a-bad-communicator-responds-by-hanging-an-important-sign-in-the-office

“The funniest thing about the comment section of my autism sign video is the people who are asking me, ‘Are you self-diagnosed? Are you formally diagnosed?’” he said in the video. “Do you think neurotypical people would make a sign like that? Do you think that would happen? Do you think a neurotypical person would do that?”

https://www.upworthy.com/autistic-employee-called-a-bad-communicator-responds-by-hanging-an-important-sign-in-the-office

Metaphors, Idioms & Abbreviations

For when meaning goes MIA.

tbh – to be honest – used to express a person’s own personal opinion, instead of the perceived generally acceptable opinion

In a minute – used to ask for a tiny (minute: my-newt) amount of time, not a measured minute

It’s helpful if instead you can say:
In a moment
Give me a few minutes please
I need a few more minutes
I’ll be done soon
Please wait for a little bit