Riding the Waves of Lymphedema

By Peggy Scott

My disability is lymphedema. It is a daily ride of the ebb and flow of lymph fluid, affecting one entire quadrant of my body. I’ve had it for 25 years, following treatments for breast cancer. I am affected only on my right side - arm, torso, the right side of my back, extending into that side of my neck. Quite a few axillary lymph nodes were removed surgically for testing; then radiation (which successfully knocked out any stray cancer cells that might be lingering at the surgical site) damaged the lymph nodes left behind after surgery. The lack of healthy lymph nodes in the region meant that waste products, produced in normal day to day activities, were not being filtered out and creating a backwash of unhealthy fluid.

Every day requires consistent vigilance and attention- because my lymphedema is affected by…

1. The environment (temperature, humidity and altitude)

2. My clothing (a seam that feels OK now might, later in the day, cut off lymph flow - causing swelling in my arm and back)

3. Activities (picking up something heavy, performing a repetitive activity, feeling sustained pressure in any direction, pacing)

Edema (swelling) comes and goes. I am occasionally able…