Honoree
Meet our Outrun Lupus Honoree: Giuliana Mendez
Hi my name is Giuliana Mendez and I want to share my lupus story. My whole life I have been surrounded by lupus, my sister and father both have lupus. I’ve grown up in the hospital watching them struggle with their health and the toll lupus had on them.
I was lupus free- until I was 15- when my life completely changed. During soccer tryouts in my sophomore year, I tore my ACL, which meant my season was over. I was sad and stressed about the surgery, and after a month, I started to experience frequent migraines, so strong I’d throw up and be unable to function. The migraines stuck and I started to have high fevers, reaching 103.1℉. I went to the hospital, there was no news for weeks, until I was finally diagnosed with systemic lupus erythematosus (SLE). Due to the delayed diagnosis my lupus progressed from SLE into Macrophage activation syndrome (MAS). My heart and lungs almost failed and a mountain of steroids was needed to keep me alive. I stayed in the hospital for almost 2 months, and was discharged on my 16th birthday. I’d missed half the school semester and when I returned everything was different. The day I left, a nurse pulled my mom aside and told her how rare it was I survived MAS.
I left the hospital feeling guilty, and nothing seemed to matter anymore. When I returned to my life, I felt unworthy of this second chance I’d been given. I picked up where I’d left off in my old life but it was hard to shake the feeling and I even had recurring nightmares of being in the hospital.
The following year was difficult- it included losing almost all my hair. It came out in piles and I left hair everywhere I went, even having to stay after every class to collect my hair off the floor. I was ashamed of my hair and tried a million different ways to cover it up. I oiled my hair routinely with a mix of castor and rosemary oil and got my hair back thicker than before which is a silver lining of the mental slump I felt.
The longer I lived with Lupus, the more I accepted it.
I bought a notebook, tracked my blood sugar and blood pressure 3x a day after developing steroid induced diabetes. I took 30 pills a day, 20 in the morning, 10 at night, and marked it in my book. I did everything I could to get back to being myself and to stop feelings so defeated.
I gained my weight back, the diabetes cleared, and after a while hairs sprouted. Although my life will never be the same, I learned how to survive. I had to work for each day of my life. When the next semester started, I took the old finals; I was already behind. I studied, and aced each one. I had to relearn every aspect of my life. The simplest tasks became a pain, like the inability to finish a meal with chopsticks or writing with a pencil. The shaking and fatigue are always there, but so am I. Learning to live with my lupus and accept it was one of the hardest journeys in my life. While it was one of the hardest things I’d ever gone through, I was able to work through it. I graduated high school last week and will be attending UC Berkeley in the fall and am so grateful I made it this far in life.
I learned how to stay awake, and focus even though my body went against me. Overcoming my health prepared me for any challenges as I continue to fight everyday for my life. Now in the present, two years later it's been something that I’ve learned to love because it's something that contributes to who I am. I hope all of you reading this, whether you have lupus or not, maybe get some insight into the constant battle it is to live with lupus and how it will get better.
“For me embracing lupus was realizing it doesn’t define me, it helped make me stronger”
During my short journey, the LFNC helped me feel supported.My family was given a place to talk to people about lupus within the support groups, and overall helped me realize there are a lot of people with lupus out there. The care and effort people show in the Outrun Lupus 5K and the other events took away my feelings of isolation. Their message of spreading awareness about lupus is so great for patients and families, making us feel seen and supported. Thank you again to the LFNC!
