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

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

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”

“School’s in!” every day for heart patients

by Carolyn Thomas  @HeartSisters

Annette is a 42-year old Pennsylvania artist, teacher and mother of two kidlets (10 and 6 years of age). In August of 2010, after returning home from a run, she suffered her first cardiac symptoms: “a tired I never felt before along with shortness of breath, chest tightness/pain, low blood pressure and low heart rate.”  Since then, she’s been volleyballed about by cardiologists, an infectious disease specialist and a rheumatologist – until finally arriving at the diagnosis of Coronary Microvascular Dysfunction.

Annette’s now being treated for this small vessel disease by specialists at the University of Pittsburgh Medical Center, and considers this diagnosis to be her “major health issue.” She admits:

“It feels like life as I am used to is a memory. So I am trying to use my time to learn the practice of meditation and use the time (during the day when I have energy) wisely.”

I’m sharing this recent back-to-school essay from Annette today – with her kind permission:   Continue reading ““School’s in!” every day for heart patients”