A Bad Year For The Roses

  Dear Friends, I started this post days ago, erased it, and then started it again.  By the time I got to today, it was a semi-living shell surviving solely on a mix of wretched emotions.  I am not just talking about the type that are a bother, but more the kind tied to things … Continue reading A Bad Year For The Roses


The Sadness of My Notes on Social Isolation & Loneliness

Dear Friends, On Tuesday, May 29, I had the honor of presenting at a webinar hosted by the Society for Participatory Medicine.  As my very first online webinar, I admit that I was nervous.  I have presented before, but in a far different capacity and with less technology involved.  I wanted to provide my notes … Continue reading The Sadness of My Notes on Social Isolation & Loneliness

A Lesson In History: Clinical Trials Mean Patients Have Power

Disclaimer: This piece has been entered in the Patients Have Power Writing Contest, run by Clara Health.  It is designed to raise awareness about clinical trials and the importance of breakthrough research.  I am passionate about this cause, as it brings hope to millions of individuals, like me, who have chronic illnesses for which there … Continue reading A Lesson In History: Clinical Trials Mean Patients Have Power

Friendship When Chronically Ill: The Importance of Finding Your Core

Dear Friends, I sit here on a relatively gloomy Tuesday, contemplating the deliciousness of ice cream (which is coconut 'milk' based due to food allergies).  I am also having serious thoughts about how we, as a society, define a friend.  I recently had my online friendships criticized as "not real" and that stung terribly.  If … Continue reading Friendship When Chronically Ill: The Importance of Finding Your Core

Soul Sisters

Dear Friends,
Chronic illness can bring enormous loneliness, but imagine if you had a support system that became something more than family? I am eternally grateful to know the closeness of sisters who aren’t blood. Yet, we are bound by something more. I suppose it is difficult to understand, especially for those who do not know, yet my core group, my soul sisters are irreplaceable. I hope that you enjoyed this blog entry as much as I did.

A "Dummies" Guide To Learning To Live As A Patient Instead Of A Nurse

Chronic illness changes a person. It changes us in ways that only fellow patients know. We grieve for the life we once had and also grieve for our new life. There are so many unknown factors as we move forward.

Naturally we begin to gravitate toward others in similar situations. In my case, an amazing group of women have become a second family. We can say it like it is, find humor in the darkest moments, and give each other the strength and courage to get through the hour or day or week.

Call it intuition, heart strings, gut feelings or twinges; we know when somebody needs us. We keep track of each other, day and night. There are many times that I get a call just as I am picking up the phone to call the same person. We just know.

While this is going to be a shorter…

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