A Call for Advocacy and Empathy

My daughter has daily IV treatments that require the use of an infusion company, home nurse visits, and an endless amount of supplies for the care of her chest port. She struggles with “brain fog”- which is a form of cognitive impairment that many people with many forms of chronic illness experience. Therefore, I am … More A Call for Advocacy and Empathy

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Empathy

I’ve written before that I started writing my book as an outlet for my frustrations after dealing with doctors’ hurtful attitudes for too many years. On the drive home following yet one more upsetting appointment I remember telling my daughter that we needed to find a doctor who had experienced chronic illness firsthand, because then … More Empathy

More About Dysautonomia: POTS

Postural Orthostatic Tachycardia Syndrome (POTS) POTS is a form of dysautonomia. What is Dysautonomia? Read more about dysuatonomia here The disabling symptoms caused by POTS are similar to living with congestive heart failure. Some POTS patients have had symptoms since birth, but most patients were active and healthy until something triggered a sudden onset of POTS. The … More More About Dysautonomia: POTS

Thoughts about Women’s Medical Treatment in the United States

I recently read the 2011 second edition of Barbara Ehrenreich’s and Deirdre English’s book, Complaints and Disorders: The Sexual Politics of Sickness. I highly recommend it for its eye-opening view of women’s medical treatment from about 1865 to 1920. The authors self-published their “pamphlet” in 1973 and I was upset reading their last chapter concerning … More Thoughts about Women’s Medical Treatment in the United States

The Exhausting Job of Being Chronically Ill

In the United States, approximately 130 million people suffer from chronic illness. Many of those people don’t look sick and many of those people may feel uncomfortable sharing their symptoms in order to “prove” that they are chronically ill. Unfortunately, even if they do share their symptoms the end result might not be what they … More The Exhausting Job of Being Chronically Ill

Doctor Appointments

As I wrote in my first blog entry, my book is a work of fiction. The main character is not as sick as my daughter. I didn’t want to overwhelm readers with too many symptoms and conditions, so I gave Drea only two syndromes, which still provided enough symptoms to portray the experiences of a … More Doctor Appointments