Ready, Set, Go — Start Your Self-Care Challenge

What exactly is Self-Care? Years ago I used the term, Self-Management Health Behaviors to identify everything I did to enhance my health given that I was diagnosed with a chronic, progressive neuromuscular disease. Some of the behaviors were already my routine like eating a vegetarian diet and practicing yoga. As I learned more about positive health behaviors from a Stanford University program I took at my local hospital, I became more intentional about how I led my life.

Health Storylines Tool Library

Somewhere along the way these behaviors became known as Self-Care. You can find Self-Care articles everywhere — in all types of popular magazines, TV commercials — it’s entered popular culture. “As of 2012, about half of all adults—117 million people—had one or more chronic health conditions,” according to the U.S. Government’s Center for Disease Control. That’s tremendous!

Even though there are so many different types of chronic health conditions, there is a lot of overlap with symptoms. I have a rare disease but when I look at my individual symptoms — muscle pain, dysphagia, fatigue, respiratory weakness — I can learn a lot from more common conditions. And many of these common conditions have known self-care practices that help mitigate the symptoms.

Based on the Stanford research I became familiar with and my own research, I’ll categorize the self-care practices into these:

  • Diet and Nutrition
  • Physical Activity and Exercise
  • Emotion Regulation
  • Social Support
  • Relaxation
  • Medication

Once we identify our symptoms, we start to look for ways to alleviate these symptoms. What helps my muscle pain may not help your muscle pain. But, perhaps you’re like me, and you are open to exploring. The key, of course, is to explore self-care practices that have minimal if any negative side-effects. During the experimentation phase you may notice some connections; maybe you have less muscle pain on days you’ve slept at least 8 hours the night before? Or, if you have gastrointestinal issues, maybe your gut feels better when you haven’t eaten spicy foods?

It’s a lot to manage but once you hit upon some solid patterns and adopt new self-care routines, it can make your life so much better. It sure has for me.

This trial-and-error process can now be easier with the assistance of a tool. I’m thrilled to introduce an online tool — Health Storylines — to help with your self-care routines. I’ve been chosen to join a team of Self Care Ambassadors who are helping others with chronic health conditions practice self-care. We’ll be doing this together and each month I’ll take a Self Care Challenge with you. Make sure you’re part of our Facebook group so we can track, monitor, and motivate each other.

Are you ready?

Here’s what I’d like you to do over the next month:

  1. Register for the Health Storylines Tool. If you have questions about the registration process, send me a message via the Facebook group. You can use the Tool on a desktop computer, smart phone, or tablet. The data you enter will synch on all devices.
  2. Use the Symptom Tracker feature to list all of the symptoms associated with your chronic health condition.
  3. Using the Self-Care Practices categories above, make a list of self-care practices you already have as part of your routine. Maybe you attend a weekly exercise class? How does exercise impact your symptoms?
  4. You’re encouraged to explore the other features of the Tool on your own. But for the next month I’ll focus on symptoms and different self care practices that can help them. The goal is to take small steps toward changing your routines so you’re not overwhelmed and it makes it easier to maintain a steady practice.

Good luck and see you in the Facebook group!


Social Media & Chronic Health Conditions: Patients and Caregivers

Is using Social Media important to you? Which platform do you use to find support from others with the same chronic health condition? If you’re a caregiver, do you access an online group to connect with other caregivers? Maybe you use social media to help educate or advocate for a particular health condition? This podcast episode explores how a variety of patients, and caregivers, use Facebook, Instagram and other social media platforms to do what they need to do.

You’ll hear from people with chronic health conditions: Toni Bernhard, best-selling author, and in 2001, initially diagnosed with an acute viral infection—but has yet to recover; Chris Schlecty, a Microsoft software engineer in Seattle, living with limb-girdle muscular dystrophy and Dean Sage, an attorney in San Diego, diagnosed with myotonic dystrophy.

Also included are caregivers — Loraine Dressler, retired nurse and caregiver for family members and Marla Murasko, Down Syndrome Mom Advocate & Inclusion Influencer.

In a post on the WEGO Health website, these links provide instructions on how to protect your private information on Facebook:

Newsweek, Facebook Data: How to Protect Your Private Information

Trusted Reviews, Facebook Privacy Settings: 18 changes you should make right away

Mashable, How to See All the Weird Apps That Can See Your Data on Facebook


Glass Half Empty: Complaining, Kvetching, and Ranting

It’s time to mix things up…just for this episode. I explore the fine art of complaining…and I complain a little. No whining though. Conversations with Toni Bernhard, Mike Hamlin, and Laurel Roth Patton included. Enjoy!


Author Toni Bernhard talks about her books, Buddha, pain, mindfulness, breast cancer, and compassion

Author Toni Bernhard was a law professor for 22 years at UC-Davis until she had to retire due to a viral infection which evolved into a chronic debilitating illness. In this episode Toni talks about her Buddhist practice, mindfulness and compassion and how they’ve helped her cope with chronic pain and breast cancer. And, of course, how she came to write three books — How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, and How to Live Well with Chronic Pain and Illness: A Mindful Guide.