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Good news: your story is not yet locked in

18 Feb

by Carolyn Thomas    @HeartSisters    February 18, 2018

I’ve been thinking about storytelling lately. I encounter a lot of patient stories from my Heart Sisters blog readers here, as well as from the women who raise a hand during my Heart-Smart Women public presentations. (I’ve learned that even the briefest of questions often hides a story behind it). I also tell stories – both my own, and other women’s. A heart patient’s story often kicks off with a profound this-can’t-be-happening-to-me sense of disbelief as we try to make sense out of something that makes no sense at all. Telling the story to others helps us do this at first. “How did this happen?” demand our worried family and friends while we lie there, overwhelmed, and thus our storytelling begins.

I’ve also learned that the way we tell that same story to ourselves and to others changes over time. And as NPR broadcaster Glynn Washington (of Snap Judgment) said in a recent interview, when you start changing your story, you change the storyteller:  Continue reading

Hello pacers! A little Q&A about your pacemaker

28 Jan

by Carolyn Thomas    @HeartSisters

Here at Heart Sisters World Headquarters, I’m often contacted by readers with impertinent questions like: “Why don’t you ever write about ______?” (insert your own specific diagnosis here). One in particular was a 2015 reader question that read: “Why don’t you ever write about congenital heart defects?” On that particular morning, I was feeling tired, sick and “grumpy” (as our little Everly Rose calls every feeling she has that’s not happy). I wanted to snap back at this reader that I’m not running the Encyclopedia Britannica here…

But in a remarkable coincidence – and luckily before I had a chance to snap – on that very day, another reader named Aletha happened to share with me her own amazing story as an adult living with a heart condition she’d had since birth. That weekend, I ran my first ever blog post about this cardiac condition, called “When babies with congenital heart defects grow up“. 

And recently, a similar reader contact reminded me that I’ve never covered the topic of cardiac pacemakers – until now. Continue reading

Hair loss and heart meds

7 Jan

by Carolyn Thomas      @HeartSisters

Did you know that most of us normally shed 50 to 100 hairs a day from our heads? According to Mayo Clinic experts, this usually doesn’t cause noticeable thinning of our scalp hair, however, because new hair is growing in at the same time. Hair loss actually occurs when this cycle of hair growth and shedding is disrupted for some reason. It’s thought to be related to one or more factors like family history, hormonal changes, medical conditions, or medications.

It was this last factor that caught my attention.  I read recently about a list of medications commonly prescribed to heart patients that may also be linked to the distressing side effect of hair loss – especially since I’ve been noticing with some alarm that my own hair seems to be thinning at a scary rate! Continue reading

Oscillating narrative: the learned art of re-creating ourselves

17 Dec

by Carolyn Thomas    @HeartSisters

“We all re-create ourselves; it’s just that some of us use more imagination than others.”  ~ Madonna

Whether we want to or not, we often end up re-creating ourselves after a significant medical diagnosis. Researcher Dr. Kathy Charmaz calls this phenomenon the loss of self after such a diagnosis, a loss experienced while we’re learning to adapt and adjust to this strange new life as a patient. When we try to talk about this painful loss to others who haven’t ever experienced it, most have trouble taking us seriously, or they may want to jolly us out of our current reality.

Yet how we talk about this matters to how we get through it. Continue reading

How heart patients can untwist that twisted thinking

10 Dec

by Carolyn Thomas    @HeartSisters

The freshly-diagnosed heart patient has plenty of opportunity to start thinking thoughts that are new, bizarre and sometimes even frightening. Any life-altering diagnosis can throw us off-balance emotionally, but with heart disease, even the tiniest twinge of new chest pain can paralyze us. Is this something? Is it nothing? Should I call 911 again? As Australian cardiac psychologist (and more importantly, a heart patient) Len Gould likes to say: “Before a heart attack, every twinge is just indigestion. After a heart attack, every twinge is another heart attack!”

And our worried thoughts can stick around far longer than they should, as we play them over and over and over like our first Beatles album. Mental health professionals call this kind of twisted thinking cognitive distortion. Continue reading