Tag: living with chronic illness

When we expect to die, but don’t

~ Carolyn Thomas ~ 13 Comments

by Carolyn Thomas    ♥   @HeartSisters

Shortly after I was freshly diagnosed with coronary microvascular disease (MVD), one of my readers told me that, for the past 12 years, she too had been living with MVD after surviving her own “widow maker heart attack”, just as I had.  Immediately picturing the future prospect of somehow coping with ongoing bouts of exhaustion, shortness of breath and debilitating chest pain, my surprising gut reaction was:

“12 years!?  TWELVE YEARS?!?!?!  I can’t do this!”

Well, Happy Heart-iversary to me: on May 6th this week, exactly 13 years have passed since my initially misdiagnosed heart attack was finally correctly diagnosed and appropriately treated, but even more amazing to me, I’ve now lived with MVD for 12 of those 13 years.     .      .     Continue reading “When we expect to die, but don’t” →

You can’t pace yourself – unless you plan to pace

~ Carolyn Thomas ~ 14 Comments

by Carolyn Thomas   ♥   @HeartSisters  

It was only after my heart attack and subsequent cardiac complications that I had to learn the fine art of p-a-c-i-n-g, a skill I’d never bothered to master until then.

In fact, many freshly-diagnosed heart patients tell me that they feel reluctant to embrace the concept of pacing themselves to minimize symptoms or protect dwindling energy reserves. Some prefer instead to focus on returning quickly to “normal”, whatever that is.     .       .   Continue reading “You can’t pace yourself – unless you plan to pace” →

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

~ Carolyn Thomas ~ 31 Comments

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

~ Carolyn Thomas ~ 24 Comments

by Carolyn Thomas  ♥   @HeartSisters  

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”

~ 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”” →