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

Still too tired to put away the Halloween costume…

~ Carolyn Thomas ~ 20 Comments

by Carolyn Thomas  ♥  @HeartSisters 

I’m a wee bit embarrassed to admit that my Halloween costume is still on a hanger on prominent display, hanging from a bookshelf in the bedroom, waiting to be boxed up and put away. I’m thinking of calling it a room decor feature by now. It’s a spectacular clown costume, I must say, complete with big baggy pants in ravishingly bright colours and, of course, with its own rainbow clown wig. I’ve worn it dozens of times over decades, and often loaned it out to Halloween party-goers among my family and friends, too.

It’s pretty nice, but it’s not nice enough to explain why, after over a month, I haven’t been able to put this costume away yet. I suspect my utter inability to do so reflects the state of my life these days, and the fact that my days are typically divided into these two distinctly unique phases: Continue reading “Still too tired to put away the Halloween costume…” →

Dr. Google in the E.R.

~ Carolyn Thomas ~ 29 Comments

 by Carolyn Thomas   ♥  @HeartSisters

Once upon a time, whenever the good citizens of Belgium experienced puzzling symptoms (let’s say, twitching eyelids), they would turn to Dr. Google to find out what might be causing the symptoms. But the Belgian government, concerned about false and scary health information online, came up with a public awareness campaign that warned: “Don’t Google It. Check a reliable source!” This also included a referral link to a government health site that could help to correctly answer questions about twitching eyelids and other health issues.

This campaign was what patient activist Dave de Bronkart (aka ePatient Dave) bluntly described at the time as “spectacularly wrong, insulting, misinformed and wrong-headed.” Continue reading “Dr. Google in the E.R.” →

“To just be a person, and not a patient anymore”

~ Carolyn Thomas ~ 27 Comments

 

THIS Embroidery Tessa Perlow by Carolyn Thomas  ♥  @HeartSisters

New Jersey oncologist Dr. James Salwitz, in his blog post called Why Is The Doctor Angry?, tells the story of the day that one of his patients became very ill. Instead of calling Dr. Salwitz, however, his patient emailed a doctor 3,000 miles away in California as he became sicker and sicker. The California doctor forwarded the emails back to Dr. Salwitz, who immediately sent his patient to hospital with multiple system failures. Dr. S said that he felt angry about his patient’s behaviour, explaining:

“   Did I look him in the eye and tell him that I was upset, that he had neglected his own care by not reaching out and in doing so he violated the basic tenants of a relationship which said that he was the patient and I was the doctor?”

“Did I remind him what I expect from him and what he can expect from me?  You better believe it – I was really pissed!”

My own question to Dr. Salwitz was: “So did you ever find out from the patient WHY he did not reach out to you?”   Continue reading ““To just be a person, and not a patient anymore”” →

Dear Carolyn: “People can change for the better”

~ Carolyn Thomas ~ 5 Comments

by Carolyn Thomas  ♥  @HeartSisters  ♥  October 28, 2018

We know now that childhood trauma is strongly associated with chronic illness later on, including heart disease. As I wrote in a recent blog post about ACE (Adverse Childhood Experiences), researchers warn us that scoring 4 or higher on the ACE test can predict a significantly higher risk of physical or mental illness as an adult. I was stunned when I took the test and saw that my own score was 4; I was well aware of my childhood experiences, of course, but I thought that only marginalized kids from desperately poor families were at high risk – and that wasn’t me! A history of psychological childhood abuse or neglect is not what we expect our doctors to ask us about – but this research suggests that maybe they should start.

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One response to that post really hit home for me. Marie (who prefers not to use her real name here) lives with a type of ischemic heart disease called coronary microvascular disease (as I do, too). With her kind permission, I’m sharing her childhood story with you as the latest guest post in my regular but very occasional series called “Dear Carolyn“: