Category: Living with heart disease

posts here focus on the “new normal” you’ll discover once you get home from hospital and the reality starts to sink in

A NOT-To-Do List for the chronically ill

~ Carolyn Thomas ~ 25 Comments

Today’s guest post comes from the wisdom of Toni Bernhard, a former law professor who, one fine day many years ago, went to Paris for a holiday with her husband, got sick, and didn’t ever get better. As such, Toni’s had to learn a lot about being a patient, as she described in her wonderful award-winning book, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. 

In this guest post, Toni lists items that belong on a NOT-To-Do list for all those living with chronic pain or illness.

♥

I love To-Do lists. I depended on them when I was working outside the home. I’ve depended on them since my bed became my office. The one difference is that, pre-illness, I had fancy notepads and appointment books in which to keep my lists. Now I scribble them on any random piece of paper I can find.

A few weeks ago, I realized I could benefit from a NOT-To-Do list that would remind me of my limitations – limitations I often ignore either because I’m in denial or because I want to please others.  Continue reading “A NOT-To-Do List for the chronically ill” →

What really goes on in your friendly online patient group

~ Carolyn Thomas ~ 33 Comments

by Carolyn Thomas  ♥ @HeartSisters ♥  3rd in a 3-part series:

It turns out that online patient discussion forums may not all be the noble grassroots support groups that I once believed them to be. For example, unless they are small independent online sites, or have secure academic, government or clinical funding  (like Virtual Hospice, which operates its active end-of-life care community thanks to ongoing financial support from the Winnipeg Regional Health Authority and Cancer Care Manitoba), the site owners of most major online patient support groups are figuring out how to “monetize” their work. That’s how biz developers talk . . .

Make no mistake, my heart sisters: few online site owners (except for individual patients hosting those smaller private forums) are running a feel-good charity for us patients purely out of the goodness of their hearts.  Continue reading “What really goes on in your friendly online patient group” →

Online patient groups: why so under-used?

~ Carolyn Thomas ~ 17 Comments

by Carolyn Thomas  ♥ @HeartSisters ♥   2nd in a 3-part series:

This may come as a shock to health care professionals, particularly to the ones who cringe when their patients bring in health information they found via Dr. Google. But it turns out that the accuracy of information found on online patient support groups is actually surprisingly reliable. For example, the British Medical Journal reported that most false or misleading statements in online patient groups are in fact rapidly corrected by other participants in subsequent postings. And there aren’t many of these false or misleading statements. The journal published an interesting study that found only 10 of 4,600 online patient group postings studied (that’s just 0.22%) were actually found to be false or misleading. But of these, seven were identified as such by other site participants and corrected within an average of four hours and 33 minutes.(1)

  Continue reading “Online patient groups: why so under-used?” →

30 little things about my invisible illness you may not know

~ Carolyn Thomas ~ 42 Comments

by Carolyn Thomas  ♥ @HeartSisters

It’s Invisible Chronic Illness Awareness Week and this year, the campaign organizers have provided a 30 Things template for bloggers like me.

Most of us look and sound pretty much the way we did before being diagnosed with a chronic and progressive illness that may not be at all visibly obvious to the outside world. This can then make it challenging for those around us to ‘get it’ when we are struggling with debilitating symptoms. So with the hope of helping to expand public awareness into this week and beyond, here goes:    Continue reading “30 little things about my invisible illness you may not know” →