The day that I was diagnosed with Lupus, I had been readmitted in to the hospital with an infection threedays prior. About 3 weeks before that, I was informed that I was to have lung surgery and I had no say inthe matter. I was 21 years old, in the last month of my senior year in college, and I was afraid - afraid todie, afraid to fail, afraid to face myself in the mirror.
Lupus is an autoimmune disease that affects individuals differently which makes it difficult to diagnose. I've exerted symptoms since the age of 14 and was officially diagnosed a total of eight years later. Lupus has made its presence known within various areas of my body: lungs, kidneys, stomach, and now my heart. I take steroids amongst six other medications in order to keep the disease at bay. Taking pain medications is not encouraged, unless a prescribed narcotic, as means to not induce a kidney flare, and I can no longer enjoy certain foods out of fear of its inability to properly digest - causing me to look as if I am months pregnant.
My Lupus journey has caused me to lose hair, weakened limbs; gain an excessive amount of weight, and skin changes; but, with the negative comes the positive. Ridding stress from my life, eating healthier, staying positively vibrant, and being true to myself has truly catalyzed a great change in my relationship
with my condition. My hair grows like weeds in the field and I keep cutting it to prove that I'm still in control, I've lost over 80 pounds while continuing to lead a healthy lifestyle, and I always remember where I've come from – I am a true Lupus Warrior.
A few summers ago, I solidified many of my ideas to begin a group in partnership with the Lupus Foundation of America. Receiving donations is amazing but it helps to know what you're donating for. Boston Lupies is titled as such because Boston is where I call home and Lupies are the elite group of individuals who have Lupus.
I began The Boston Lupies because individuals like myself do not deserve to be marginalized because of the mysterious implications of a still unknown disease. The Boston Lupies strive to spread community, national and internal awareness of Lupus through my story and the many Lupies met along the way.
With Love,
Emilia