Tag Archives: autoimmune

Toxin Induced Loss of Tolerance (TILT)

TILT3

I first learned about Toxin Induced Loss of Tolerance (TILT) from Dr John Cline, Matthew’s Functional Medicine Doctor.

TILT made sense because it describes a tipping point: how toxins accumulate in our bodies until our tolerance is compromised and we tip from an equilibrium of health into an equilibrium of illness.

As Dr Cline explains, “when our bodies accumulate enough toxins, often in combination with stressful life events, a tilt occurs, and our health then deteriorates rapidly in many ways”.

The idea behind TILT is that many chronic illnesses, as well as environmental sensitivities, originate in an accumulation of toxins in our bodies over time. At some point in this accumulation, susceptible individuals tip over into poor health. Continue reading

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Being an Advocate

Being an advocate this oneAs a caregiver, you may need to advocate on behalf of a loved-one in the medical system.

In a crisis situation, when someone you care about can’t speak for themselves, advocacy is straightforward: they need medical attention and you make sure they get it.

But the role of advocate is more complex when the person you care about has some ability to speak for themselves. Especially if their capacity changes from day to day.

In this case, an advocate needs to adapt their approach as the ability of the patient evolves.

Conflict

My husband Matthew has often needed medical advocacy in the last eight years. And my role as his advocate has caused friction in our relationship.

In fact, my role as advocate has been one of our primary sources of conflict during this time.

You’d think it would be simple:

  1. He needs help;
  2. I provide it;
  3. He’s grateful for my assistance.

Right?

But real-life people in real-life health crises are much more complex than that. Continue reading

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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

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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

Continue reading

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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

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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

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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

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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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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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3 steps for Hacking Sexuality

Getting your sexual self sortedBefore Matthew became disabled by autoimmune disease, we had a lot of really good sex.

In fact, when we first got together, a bunch of our friends broke up because they could tell (we weren’t saying anything, they could just tell) that we were having better sex than they were ever going to have together.

But then Matthew got sick.

Really, really sick.

And what had been a source of strength in our relationship became a real problem.

A real problem in a big monster pile of really-real problems.

It took years. And a devastating amount of vulnerability, maturity and compassion, but we figured out how to put our sexual selves back in the centre of our marriage.

Your Own Personal Sexual Revolution

Continue reading

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