It took several years of serious health complications, before my doctor realized that all of my random symptoms might be related. He said to me, “something is driving this, it took a multitude of blood, medical tests and biopsies before he walked in the room with a handful of paper printouts and said “you have lupus.” At 22 My future became cloudy and uncertain. I left in a complete daze.
My symptoms at the time were: fatigue, severe pain, pulmonary and renal issues. I could not raise my arms above my head and had trouble doing basic things. I also had severe dry eyes, stomach ulcers, rashes, hair loss, fevers and shortness of breath. Today 30+ years later, my lupus is still very active and most of these symptoms still come and go.
People should know that lupus is never the same for everyone. Lupus is insidious; its thievery is endless. The effects to my life are profound from lupus. I no longer have the physical ability to do the things that I used to. I have multiple lists to remember things and multiple calendars as reminders. If I overdue it one day, I pay for it for three. I have learned the key is pacing and doing large tasks a little at a time.
I cannot do taxing physical activities anymore but I can write. Through my words, I can connect to others and can remind them, we are never alone. Hope is in our ability to not only learn to accept but to learn to thrive within the very real limitations.
Strength does not come from physical capacity, it comes from an indomitable will..Gandhi