"The San Jose Hangout Support Group has helped me grow in confidence knowing that I am in fact never alone; I have Lupus, but Lupus does not have me. Sharing my story and knowing that someone else has also experienced something similar makes me feel less alone."
Imagine being a healthy 9 year little girl walking to get ice cream with her grandmother, then suddenly diagnosed with lupus and staying in a Children’s Hospital for a year. Or 16 year old young man, playing 3 high school sports a year, lifting 400 lbs and then suddenly not being able to walk.
Gianna and Ray don’t have to imagine because these things happened to them. We would like to introduce you to Gianna and her father Ray Mendez, a rare father and daughter who have lupus.
GIANNA'S LUPUS JOURNEY
My name is Gianna Mendez and I am honored to share my lupus story with you. One day I was getting ice cream with my grandmother when I got back home, my life was changed forever. As I arrived home, I complained about a lot of pain coming from my left ankle; it was as swollen as a grapefruit, but we had no idea why and figured I must’ have bumped it. My mother took me to the doctor and I was sent home with an ACE bandage and told to “ice it for a few days”. A few days later I had mentioned my opposite ankle hurt. I again was wrapped with an ACE bandage and told I was “being dramatic” by the doctor. My mother, knowing my father’s history with lupus and its tormenting effect with swollen joints, inquired about testing for Lupus, but was abruptly turned away by the doctor as “she isn’t a medical professional”. The very next day I complained to my mother about the pain and my mother reminded me how the doctor explained that sometimes while growing, random pains can happen. I ignored my feelings and went to school; 7 hours later my after school instructor had to carry me to my after school program because I could not physically walk. My mother immediately drove me to the doctor and demanded tests for Lupus to be included in the assessment. However, it left the doctors confused on the next steps because I did not display the “appropriate” number of symptoms to be considered a lupus diagnosis.
During this initial phase I simultaneously had 3 infections that caused me to spike a high-grade fever and the Russian Roulette with random antibiotics began. As my fever progressed, they desperately attempted to lower it with one last medication via an injection but I had an allergic reaction and was admitted to the Emergency Room for 2 weeks. I will never forget sitting on the hospital bed and crying for my mother but instead was surrounded by 6 staff members from the infectious disease department, wearing full protective gear, poking me with needles. Through the multiple lab tests, doctor visits, and checklists it was finally confirmed that I had Lupus Nephritis.
As overwhelming and chaotic this may sound to the audience, I would like a moment to try and imagine coping with all of this at only the age of 9 years old.
I was afraid and confused, but even at 9 years old I understood something was very wrong. I started my chemotherapy treatment for a year and lived in the children’s hospital for that entire year. With endless trials of regimens, my medical team had finally found a sustainable combination of pills I finally went into “remission”. However, one of the difficulties with Lupus is it’s mysterious and unpredictable nature. So fast forward, I am 21 years old and a junior in college and randomly undergoing 2 weeks of wild symptoms. This started the beginning of the hardest 4-year Lupus flare I have ever experienced. I went through so many obstacles in those weeks; I became very weak and exhausted. I had to use the wall to walk, was not able to work, bedridden for months, and could not even hold a pencil or bend my fingers to button my pants. The only thing we could depend on was making the proper adjustments with my medication to manage all the problems. Lupus can vary its impact to the body in a harmful ways and also affects many patients differently so finding the correct medical treatment is difficult. I spent most of my junior year in and out of the hospital trying to manage the pleurisy of the lungs, fragile joints, aching body and major fatigue. 2 years later I was diagnosed with another auto-immune disease and added another doctor to my file. Lupus alters my immune system so much that something like a head cold for you, is a week’s worth of hospital bedtime for me. My life began to feel surreal and like a never-ending nightmare.
I finally discovered the Lupus Support group and asked my father to support me by also going to a couple of sessions. It was such a relief to share my story and know that someone else has also experienced it. We can complain about the same medications. We can talk about how tormenting it is to have someone ideally “healthy”, not understand how we are affected by lupus. It also has been able to help me in the darker times feeling alone and scared. With all of the trials and tribulations of meds, eating habits, and external factors it was beautiful to have a place that I can feel a part of; the lupus support group has help me grow confidence with knowing that I have Lupus, but Lupus does not have me and that I am in fact never alone.
RAY'S LUPUS JOURNEY
Hi, my name is Ray Mendez and I would like to tell you my never-ending lupus story which started 30 years ago. When I was 16 years old, I was in great physical shape, I was playing 3 high school sports a year and was in a state champion rugby club after school. I was feeling strong, I thought I was a star. I used to feel the same way about my hairdo until I started to get red blotches on my scalp. We only had HMO coverage and it was months before my primary stopped guessing and sent me to a dermatologist, who did more guessing before finally doing a biopsy. I was diagnosed with Discoid lupus (DLE). I was in denial because I did not have many physical symptoms at the time. About a year after my diagnosis, I started to have a few physical symptoms, but kept ignoring my condition and then the infamous SLE popped out of nowhere. My family had a huge family reunion in Los Angeles, where I collapsed and had a seizure in front of my entire family. After that I spent the next 40 days in the hospital and lost 70 pounds. I went from bench pressing 400 pounds to not being able to walk up the stairs when I got home. I was knocked on my butt and handed a wake-up call. This was when Lupus had me.
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