Hypervigilance: waiting for that second heart attack

kittyWaitingby Carolyn Thomas  ♥  @HeartSisters  

Until I had a heart attack, I didn’t know that one of the biggest risk factors for having a cardiac event like mine is having already had one. Heart disease, a chronic and progressive diagnosis, is the gift that keeps on giving. And as I wrote here, one of the Big Lessons for me has been that, although my doctors can “squish blockages, burn rogue electrical circuits, and implant lifesaving devices”, their heroic efforts do not address what originally caused this damage to my coronary arteries in the first place – likely decades before my heart attack struck.  See also: The Cure Myth

In fact, women are twice as likely to have a second heart attack in the six years following the first compared to our male counterparts.(1)  No wonder sobering stats like this can drive the freshly-diagnosed heart patient to an exhausting and fearful state of acute hypervigilance. Continue reading “Hypervigilance: waiting for that second heart attack”

Invisible Illness Week – seeing what others can’t see

by Carolyn Thomas    @HeartSisters

I showed up bright and early for my 7 a.m. weekly Toastmasters meeting, just as I had been doing every week for 28 years. (I did miss several meetings after being freshly diagnosed with a heart attack in 2008 – the year that, sadly, I lost the coveted Rise and Shine Attendance Award to my archrival, Jim). But because early morning is almost always my best time of day (e.g. minimal cardiac symptoms), if you’d met me for the first time only during that very early weekly meeting, you would not have guessed that I live with something called inoperable coronary microvascular disease (MVD). 

I don’t wear a neck brace or leg cast or any other visible sign that something is wrong. Because this debilitating heart condition is invisible, I often look and sound relatively “normal”.  And if you’re lucky enough to live with healthy privilege, it can be almost impossible to understand what having any invisible chronic illness is like. Continue reading “Invisible Illness Week – seeing what others can’t see”

The freakish nature of cardiac pain

by Carolyn Thomas  ♥  @HeartSisters

Part 1 of a 3-part series about pain

I was thinking about the freakish nature of pain the other day. I think about pain quite a bit, actually, given the frequency with which I now experience the ongoing symptoms of coronary microvascular disease. But when the first alarming warning signs of a heart attack struck out of the blue while I was out for a brisk pre-breakfast walk, the reality was not at all what I would have ever imagined a heart attack to feel like. And because I was clueless, I believed the Emergency Department physician who’d misdiagnosed me with acid reflux and sent me home that same morning.  Continue reading “The freakish nature of cardiac pain”

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”