“Life is amazing. And then it’s awful…”

by Carolyn Thomas   @HeartSisters     August 17, 2019

“Life is amazing. And then it’s awful. And then it’s amazing again. And in between the amazing and the awful, it’s ordinary and mundane and routine. Breathe in the amazing, hold on through the awful, and relax and exhale during the ordinary. That’s just living heartbreaking, soul-healing, amazing, awful, ordinary life. And it’s breathtakingly beautiful.”

This reminder about the amazingness of life from author L.R. Knost has always rung true for me.(1)  And so do these words of a local Kindergarten teacher who tells her kids: “You get what you get, and you don’t get upset!”

But we do get upset. Really upset. Especially when we observe that we’re getting not nearly enough “amazing” and way too much “awful” . Continue reading ““Life is amazing. And then it’s awful…””

Scope creep: when NO means maybe, and maybe means YES

by Carolyn Thomas    @HeartSisters     August 4, 2019

I’ve been grappling with a wallop of personal guilt lately. I don’t feel guilty because I’ve done something wrong, but because I finally had to say “No!” to a friend I’d been helping for a long time.

During my public relations career, we called this phenomenon “scope creep”. For example, you happily agree one day to a project with clear parameters, but over time one thing after another gets piled on top of your desk, until the project is suddenly so unwieldy that you wonder how this even happened.

It happened because of scope creep. And your inability to say No!”  to keep the whole thing on track as you went along.  And the way things change. Continue reading “Scope creep: when NO means maybe, and maybe means YES”

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

by Carolyn Thomas @HeartSisters  ♥  November 4, 2018

THIS Embroidery Tessa Perlow by Carolyn Thomas    @HeartSisters    November 4, 2018

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””

ChronicBabe: living a kick-ass life despite chronic illness

by Carolyn Thomas    @HeartSisters

I first heard about the work of patient/advocate/blogger Jenni Grover Prokopy (pictured at left*) years ago when, coincidentally, we were each named by Our Bodies Ourselves of Boston as two of their 2009 Women’s Health Heroes. She describes her blog ChronicBabe.com as all about how to live a kick-ass life in spite of living with one or more chronic illnesses. Jenni has an up-close and personal relationship with this topic. First diagnosed with fibromyalgia 20 years ago, Jenni was terrified. She felt completely alone – medical resources were scarce, and none of her peers could relate to what she was going through.

“My life was turned upside down. I went from being a hard-charging, super-athletic chick to feeling so fatigued I couldn’t walk more than a couple blocks. Severe pain kept me from pursuing career opportunities and social activities. And within a couple years, I was diagnosed with other chronic conditions, too. I thought my life was over.”

But it wasn’t over. She explains: “As a young woman with multiple chronic illnesses, I get you.”  Hold onto your hats, Heart Sisters – here’s my interview with the wonderful Jenni Grover Prokopy.      Continue reading “ChronicBabe: living a kick-ass life despite chronic illness”

Invisible Illness Week – seeing what others can’t see

by Carolyn Thomas    @HeartSisters

Once a week, I show up bright and early for my 7 a.m. Toastmasters meeting, just as I have 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 pal and archrival, Jim). But because early morning is almost always my best time of day (e.g. minimal cardiac symptoms), if you met me for the first time only during that very early weekly meeting, you would not guess 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 an invisible chronic illness is like. Continue reading “Invisible Illness Week – seeing what others can’t see”

It’s Invisible Illness Awareness Week!

Dearest heart sisters,

If you live with an invisible illness (as almost all heart patients do), this is your week, no matter what your diagnosis.  I encourage you to visit the Invisible Illness Week site, all about those of us living with serious health conditions that nobody else can see. It’s an annual educational campaign about how often illness is utterly invisible to others, how to be sensitive to those living with these challenges, and how to learn from their unique experiences.
Continue reading “It’s Invisible Illness Awareness Week!”