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I ask myself these questions daily. Living with my chronic illnesses, like brain tumors, metabolic disorder, hypothyroidism, or diabetes insipidus, or with rare genetic conditions, like Ehlers Danlos Syndrome, dwarfism, or Madelung deformity requires constant energy negotiations as well as careful activity planning. I feel like each illness or syndrome is a ball and I …

“Do Housework? Fulfill Social Obligations? Or Go to Appointments?” Read More »

During January 2022, I was in the deepest depression that I had ever experienced.  I was not able to walk across the room without losing my breath; I couldn’t lift a small pan filled with food due to shoulder and wrist pain; I couldn’t chop produce without my hands dropping the knife or the food.  …

My New Definitions for Mental and Physical “Fitness” Read More »

It is challenging to live with chronic illness and genetic disorders.  I frequently fall into dark depressions because I want a “normal” life filled with fun, energetic activities, not just sitting on a couch watching TV or closing the drapes and lying in bed.  Six months after my brain surgery, I thought I would never …

Resistance Bands and Continuous Glucose Monitoring Saved My Life Read More »