Our Stories

Vilified and Coerced, Pain Patients Desperate

Guest post by Angelika Byczkowski In no other medical field are patients subject to such vilification, suspicion, and coercion as in pain management.  Chronic pain patients have been abandoned in the blind rush to “protect” us from addiction to opioids, without

National Pain Day

By Angelika Byczkowski I resent that we pain patients are essentially being called liars by the anti-opioid brigade, as they refuse to believe our pain is as extreme and debilitating as we claim.  Some of the non-opiate medications they propose

A request to my doctor: Listen, answer, explain

By Ralph Warren After a recent less-than-satisfactory appointment with my cardiologist, I was troubled by how common poor relationships between doctors and patients are. When did doctor and patient relationships, so necessary to the successful treatment of long-term illnesses, become

I am visible. My disease is not.

By Michael Hyatt I am disabled. I have Ehlers-Danlos Syndrome (EDS), a genetic disorder that keeps me in constant pain every minute of my life. It is an invisible disease. You could look at me, and if you saw past

Beyond pink

By Laura Wells, Stage IV Metastatic Breast Cancer Fighter When I was first diagnosed with breast cancer, I found it hard to embrace the “Pink Ribbon” and all it stood for.  I was not happy to be joining the club,

It just doesn’t add up: Saving premature babies only to risk their health later

By Deb Discenza Each of us knows someone that had a preemie and a tale to tell about the roller-coaster of the early birth.  The stories often liken preemies to warriors and fighters as they struggle to live against all

My son, and his doctors

By Jeff Stimpson My 14-year-old son Alex was born 10 weeks premature, and spent the first year of his life in the hospital. About two months after his birth, he began to show signs of the autism that has since

Gambling for treatment: A rare disease profile of tuberous sclerosis

By Marlo Schepper Grolnic When I was 41 weeks pregnant, after what was supposed to be a routine ultrasound, my OB gave me the shocking news: my baby had a tumor in his heart. This tumor had a fancy name–a