Autoimmune Citizen Science

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Vivek Mandan

Many people who improve their autoimmune symptoms want to share what they have learned, so others can benefit too.

Most people just start a blog.

Vivek Mandan is creating Autoimmune Citizen Science, a free site that will enable anyone with an autoimmune condition to track personalized data to support their healing process.

Vivek and his team are looking for testers for the beta launch of their site this Spring. I’ve already signed up. Anyone else who is interested in the potential of measurement as part of their recovery will want to scoot over to Autoimmune Citizen Science to sign up as a beta user, too.

Consider this post to be your personal invitation from Vivek!

This month, I interviewed Vivek, who is 24 and lives in Ohio, USA, to find out more about his experience with autoimmune disease and about his vision for how Autoimmune Citizen Science could change the way we research and treat complex chronic health conditions. Continue reading

Self-care for Caregivers

Self Care

If someone you love has a chronic health condition, you need to get really good at taking care of yourself.

Especially if they have an illness that is going to affect you in the long term.

For a short-term situation, like a broken bone or a cancer that resolves, you may be able get away with running your caregiving efforts on stress hormones. With the idea that when the crisis is over, you can take time to recover.

But by taking that approach, you are gambling with your future. You are assuming that the crisis will resolve, and that life will return to some kind of normal.

And that is not always the case.

First, because there is always the chance that the situation you are facing with your loved one will get worse.

Second, because a new situation might emerge.

Not taking care of yourself when you find yourself in the role of caregiver is like buying stuff on credit. Of course we all have to do it sometimes. But if you rely on it too heavily and you can’t pay down your debt, the compound interest will start to create problems all on its own.

I’m an Example

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12 Tips for Caregivers: supporting your (reluctant) loved-one to start a healing protocol

Your (reluctant) Loved-one

Some people are motivated to begin a healing protocol on their own.

Some are well enough. Can think clearly. Make plans. Set goals.

But others require help to get there.

If someone you love has a chronic health condition, and you think that a healing protocol could help, you probably feel some urgency. You want them to get started. Already.

But what if they’re not ready?

Or worse, what if they’re hostile to the idea?

If you push too hard, they’ll resist.

I know from experience!

How to support your (reluctant) loved one to start a healing protocol

After years in the role of caregiver, here are my 12 strategies: Continue reading

Why Measure your Recovery?

Why MeasureMatthew and I started measuring because we didn’t know what else to do.

We didn’t know we were measuring his recovery, because his health hadn’t started to improve yet.

Research and evaluation are part of my trade, and Matthew has a background in Continuous Quality Improvement, so when we’re in doubt: we measure!

And we were in a lot of doubt.

Why Measure Health?

Measurement can seem superfluous when you are really close to your experience.

Especially if the numbers don’t change from day to day.

Or if they swing around wildly for no obvious reason.

But if you stick with it, measurement can be incredibly useful as a way to discern trends and track progress over time. In fact, measurement can be a way to begin the process of recovery. Continue reading

When Genitals are Involved (& not in a good way!)

SexualityA lot of people have a secret.

I know because they’ve told me.

Their autoimmune disease affects their reproductive organs, but they keep that painful fact to themselves.

Autoimmune diseases that affect the genitals include Psoriasis, Lichen Sclerosis, and Hidradenitis Suppurativa, among others.

Then there are the conditions that affect the reproductive system internally, like Endometriosis.

Still others occur in the pelvic region, like Interstitial Cystitis.

Any of these conditions can have a profound affect on a person’s sexuality.

Why the Silence?

Secrecy about the impacts of these autoimmune conditions is a by-product of our repressive attitude toward sexuality generally (a subject I explore in 3 Steps for Hacking Sexuality).

Today I shed more light on autoimmune conditions that affect the reproductive organs by sharing a case study of a person who lives with genital psoriasis, a form that affects up to 50% of people with psoriasis according to the National Psoriasis Foundation, but is rarely mentioned.

Genital Psoriasis

Websites that address genital psoriasis are brisk and cheerful.

They suggest that with the right ointment and the right attitude, a raw and weeping genital area could be almost invigorating. Or at least no more than an inconvenience. Continue reading

Brain Fog (& what to do about it)

Brain FogHere’s a riddle:

Q: What do you do when your previously gentle and intelligent spouse starts to behave like a hostile toddler most of the time?

A: Do everything you can to reduce their brain fog!

When his brain fog was at its worst, Matthew reminded me a lot of a hostile toddler.

A hostile toddler with a driver’s license and credit cards.

It was not good!

The brain fog that accompanied the overall decline in his health was one of the scariest symptoms he experienced. And it is one of the many symptoms that has responded exceptionally well to the Autoimmune Protocol (AIP).

We first noticed marked improvement in Matthew’s cognitive function after seven months on the AIP.

And every month it has improved further.

After 27 months on the AIP, he’s almost all of the way back to his smart old self. Not completely. There’s still room for recovery, but his brain has mended remarkably well.

I am fascinated about brain fog, after having watched Matthew descend into its depths and come out the other side. Rory Linehan from the Paleo PI shares my interest, having been ‘there and back again’ with brain fog himself. So, he and and I conducted some research into the phenomenon.

In January 2016, we surveyed 18 people with first-hand experience with brain fog, all of whom were on a healing protocol diet, like the AIP.

This post contains the results of that research.

Our Brain Fog Research

We found it interesting that though they had no contact with each other while our research was being conducted, the way that people described their experience with brain fog was quite similar: Continue reading

Mind Tricks for Pain & Illness

Mind Tricks for Chronic Pain & IllnessIn the past 9 years I’ve been observing a person who became almost completely disabled by disease.

And in the past 2 years I’ve been watching as he’s been slowly recovering.

I’ve noticed how he has handled chronic pain, loss of mobility, severe nausea and the catastrophic up-ending of everything he thought he knew about life.

And I’ve been impressed.

I don’t know how many of us could have handled what he has been handed with as much grace.

Not that he’s been gracious every minute of every day. He’s been profoundly depressed. And really angry about his situation. At times.

But on the whole, Matthew has maintained a profound equilibrium.

How has he done it?

Well, I’ve been watching, and I’ve figured out that this exceptional ability to roll with the challenges of multiple chronic health conditions is the result of mindset.

So, I thought I’d ask him to tell us about it.

Mindset for Living with Pain & Illness

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18 Healing Protocol Resources

These are 17 healing protocol resources that I wholeheartedly recommend:

Dr Kharrazian

Dr K. is the leader in a functional medicine approach to improving Brain Health and reducing Brain Fog.

His book Why Isn’t My Brain Working? is one of my top references of all time. But it’s dense. And intense. If you are suffering from brain fog it’s too much!

Which is why his 6-week Brain Rescue Course (starting April 11th) is so welcome. It helps people address their brain fog and improve the health of their brain, which is arguably the highest leverage point for improving health overall.

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Eileen Laird

  • 26 Autoimmune Protocol bloggers (including me!) joined together to create 85 Amazing AIP Breakfasts. It includes grain-free “cereals,” delicious stir-fries, smoothies, coffee alternatives, 14 different flavors of meat patties, pancakes, waffles, nourishing breakfast soups, and more. Over half the recipes can be easily modified for Low-FODMAP, Low-Histamine, GAPS/SCD and Coconut-Free diets.
  • Eileen’s Paleo AIP Reintroduction Guide contains an overview of the AIP; a guide to starting reintroductions; instructions on how to reintroduce foods and monitor reactions; examples of food intolerance reactions; and recipes for the reintroduction phase.
Angie Alt

Angie Alt from Autoimmune Paleo

Angie Alt

  • Angie’s Alternative Autoimmune Cookbook is way more than just a cookbook! It is a how-to for the elimination phase of the AIP as well as a guide to reintroductions, with recipes for every stage. It includes a helpful week-by-week guide to ease you in to the eliminate phase of the protocol, with sections on staying balanced, loving your body, staying on track, and real-life advice about reversing chronic illness through nutrition and lifestyle.

Anne Angelone

Everyone needs to take a break, unplug and get refreshed! Make relaxation and meditation easy with Anne’s new soundscapes.

She has a number of offerings, including:

  • Peaceful sleep & Deep Relief featuring crystal singing bowls, humpback whales and oceanic sounds.
  • Meditation Rx includes nature sounds and delta wave binaural beats to quickly shift gears and begin your meditation

Listen to samples of all of Anne’s soundscapes here.

Christina Feindel

As Christina says, one of the biggest challenges to putting a healing protocol into practice is finding the time and energy to cook compliant meals “every. single. day.”

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Christina Feindel from A Clean Plate

So, she has created four different meal plans that are quick and use easy-to-find ingredients. These are best-sellers for a reason!

Christina also offers the Ultimate Health Journal E-book making it easy to track nutrition, exercise, sleep, stress management, social connections, time outdoors, as well as symptoms.

Sarah Balantyne

  • Go To Bed: 14 Steps to Healthier Sleep is Sarah’s new online program. The 288-page e-book contains every scientifically-validated tip and trick for improving your sleep, as well as strategies for tracking and evaluating sleep. This program also includes a 14-Day Sleep Challenge.
  • The Best of AIP 2015 is a compilation of nearly 200 AIP recipes compiled by Sarah, with contributions from 35 of the “finest AIP bloggers in our community” (including me~).

Mickey Trescott

  • Mickey’s AIP Batch Cook is helps you to create create all the food you need for a healing protocol for a whole week in just 4-hours. Two 2-hour sessions. Meal Plans, video tutorials, grocery lists, recipes and the Batch Cook program. Everything you need to cook like a pro.
  • Mickey’s cookbook Autoimmune Paleo was one of the first, and it’s still one of the best. It contains an introduction to the Autoimmune Protocol, two 4-week menu plans as well as shopping lists.

My 4 Favourite Healing Protocol Print Books

  1. The Healing Kitchen by Alaena Haber & Sarah Ballantyne is the best cookbook I’ve used in a long time. It’s filled with delicious, simple AIP recipes (we have the plantain wraps permanently bookmarked), contains a comprehensive overview of the AIP and 12 meal plans. If you buy one book, this should be it!
  2. A Simple Guide to the Paleo Autoimmune Protocol by Eileen Laird is an excellent beginners guide. It’s concise and friendly, and contains everything you need to know to get started on the AIP (or get back on track).
  3. Why Isn’t My Brain Working? by Dr Kharrazian. As I mentioned earlier, this book is one of my top references of all time!
  4. Your Personal Paleo Code by Chris Kresser. This one has been out for a awhile (it was published in 2013) but it remains an excellent resource for customizing and troubleshooting your Healing Protocol. I refer to it all the time.

18 Healing Protocol Resources

The Health Impacts of Prejudice and Discrimination

The Health Impacts of Prejudice & DiscriminationTwo things to know about stress:

  • It’s a major factor in all kinds of health issues, including autoimmune disease; &
  • It’s notoriously hard to manage.

The good news? Some kinds of stress are preventable. Like the kind that results from living with prejudice and discrimination.

If we can eliminate that prejudice and discrimination.

Prejudice and Discrimination

This week I had the privilege of supporting a group of youth when they presented at a mental health conference. Their presentation was on The Impacts of Hetero-normativity & Cis-normativity on Youth Mental Health.

First question:

Q: What’s Cis?

A: Identifying as the gender you were assigned at birth.

The youth were speaking from experience. About the impacts of prejudice and discrimination on the mental health of LGBTQ+ youth.

But the same argument could be made for the impacts on their physical health. Currently and in the future.

Now that I understand the connection between stress and health issues, I’m always looking for opportunities to prevent stress. In my own life, and for other people. Especially young people.

Because I’m interested in disrupting the patterns that may one day cause people to tip over into autoimmunity or other chronic health issues.

So let’s look at this (entirely preventable) source of stress and illness.

Hetero-normativity & Cis-normativity: What’s the problem?

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