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

When the elephant in the room has no smartphone

~ Carolyn Thomas ~ 36 Comments

by Carolyn Thomas  ♥ @HeartSisters

Shortly after arriving at Stanford University School of Medicine to attend the conference called Medicine X (“at the intersection of medicine and emerging technologies”), it hit me that I didn’t quite belong there. Maybe, I wondered, the conference organizers (like the profoundly amazing Dr. Larry Chu) might  have goofed by awarding me an “ePatient Scholarship“ – rather than a more tech-savvy, wired and younger patient in my stead.

Please don’t get me wrong – I was and still am duly thrilled and humbled to be chosen as one of 30 participants invited to attend MedX as ePatient scholars, generously funded by Alliance Health based on meeting selection criteria like “a history of patient engagement, community outreach and advocacy”.

But almost immediately, I started feeling like a bit of a fraud.  Continue reading “When the elephant in the room has no smartphone” →

Doctors who aren’t afraid of “Medical Googlers”

~ Carolyn Thomas ~ 7 Comments

by Carolyn Thomas  ♥ @HeartSisters

Many physicians worry about patients like me who go online to look up their medical conditions. They worry that we patients are not capable of understanding what we’re reading.  They worry that all that medical terminology is too confusing for us. They worry that patients don’t know how to research complicated medical issues. Patients, after all, haven’t been to med school and may be easily confused or mislead by what we find online.

Then there’s Dr. Joe Ketcherside MD.

He recently responded to my post called What Doctors Really Think of Women Who Are Medical Googlers (republished on LinkedIn’s Digital Health forum) – and with his kind permission, I’d like to share what one physician has to say to his worried colleagues:     Continue reading “Doctors who aren’t afraid of “Medical Googlers”” →

“I care about you” and other things to say to sick friends

~ Carolyn Thomas ~ 9 Comments

by Carolyn Thomas  ♥  @HeartSisters

In honour of National Invisible Chronic Illness Awareness Week, I think I’ll snort some nitro spray. Oh, wait. Sorry. I mean, I think I’ll talk about what to say when somebody you care about is ill – rather than the well-meaning (but often annoying) greeting: “You look great!“ 

When I’m having a really bad day, I’ve often thought that a lovely  neck brace or leg cast might come in handy. It would be like sporting a well-recognized outside sign that something is not quite right inside, because my cardiac symptoms are mostly invisible to others.

Continue reading ““I care about you” and other things to say to sick friends” →

30 little things about my invisible illness you may not know

~ Carolyn Thomas ~ 38 Comments

by Carolyn Thomas

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 which 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 next week and beyond, here goes:

1. The illness I live with is called: Inoperable Coronary Microvascular Disease

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: I survived a “widow maker” heart attack in May 2008 (which was two weeks after I was originally sent home from the E.R. misdiagnosed with acid reflux – despite presenting with textbook heart attack symptoms like crushing chest pain, nausea, sweating and pain radiating down my left arm). Later emergency treatment finally confirmed a myocardial infarction (heart attack), but debilitating cardiac symptoms continued after I was sent home – and that meant more tests, more hospital procedures, more meds, more treatment – until my microvascular disease diagnosis.

4. The biggest adjustment I’ve had to make is: not being able to continue working in my public relations career due to ongoing cardiac symptoms; for me, this has also meant the demoralizing experience of needing to apply for (and then learn to live on) a disability pension.

5. Most people assume I’m: my same old self. I am not.  Continue reading “30 little things about my invisible illness you may not know” →