Angelica’s Autoimmune Story

MEET ANGELICA

Hi! My name is Angelica, and I’m 29 years old. I live in Southern California, and I do enjoy spending my time reading, watching favorite shows such as American Horror Story, listening to Tennis (band), and keeping in touch with my friends. I graduated from UC Riverside with a Bachelors in Sociology and minor in Women’s Studies.

I am Mexican-Nicaraguan American and I do enjoy learning more about the country’s traditions and overall cultures. I am raised in a Catholic household, which I still continue to hold the faith in my heart. Currently, I’m in a relationship with my boyfriend Jon who is a photographer, and we have been together since 2011. Lastly, I do work as a sales associate for Kohl’s for about 4 years now.

 DIAGNOSIS

My life changed when I got diagnosed with Systematic Erythematosus Lupus at the age of 13. During middle school, I participated in band where I played the flute. We had our annual winter concert in early December, which was a very cold night. I remember waking up the next morning with no upper body strength to get up. My mother was concerned that I was feeling very fatigued and stiff in my joints for over a week, so I had an appointment with the pediatrician. At the appointment, the doctor examined the swollen joints, and strongly suggested that I should see a rheumatologist. Prior to the first patient appointment, I did the lab work and discussed it with the rheumatologist. He announced to my mother and I that I have lupus, which led my mom in tears. I didn’t quite grasp the severity of being diagnosed with an autoimmune disease, but I felt that this could be something that it’ll be gone eventually like the flu. At the time, the rheumatologist didn’t treat pediatric patients, so he referred me to one of his mentors over in Children’s Hospital, Los Angeles.

When I first started to get treated at CHLA, I was scared and confused of what was going on. My doctor was the chief of the Rheumatology Department, and he was incredible. He first gave my mother and I a folder of numerous resources about lupus, recommended lifestyle changes and kick-started a list of medications. My medications were consisted of prednisone, imuran, plaquenil, and so forth. I was diagnosed with anemia as well, so I had to incorporate more iron in my diet and take iron supplements. In 2010, there was new research about a new drug called Benlysta, which proved positive results for lupus patients. I was the first patient at CHLA to try the Benlysta, which I had biweekly sessions of the IV therapy. I struggled a lot with multiple symptoms, such as joint stiffness, facial rashes, moon face, fevers, fatigue, muscle soreness, on and off hair loss, and loss of appetite. However, I experienced two traumatic hospitalizations in 2004 and 2010 due to complications caused my lupus.

In late September of 2004, my family and I experienced a sudden loss of my grandfather. I had to be taken to urgent care because my legs weakened at his funeral viewing. Lupus was causing strong flare-ups, which led me to be hospitalized for two weeks at UC Irvine Medical Center. I wasn’t able to lay down without suffocating, and I cried of the sharp pains around my heart and my lungs. The doctors and nurses treated me for pleurisy and paricarditis, so it took a while for the fluid to be drained from both lungs and from the outer sac of the heart. I was scared that I would miss Christmas at home, but I was blessed to be discharged on Christmas Eve. It was the happiest moment of my life. Six years later in summer 2010, I was about to move back into the dorms. I suddenly lost all movement the waist down and had heavy nose blood clots, so I was rushed to CHLA emergency department. I was admitted to stay for about two to three weeks for pneumonia, which I was treated with penicillin. I remember suffering with anxiety of receiving penicillin, because it caused pain during the injection and weak veins. Once I discharged and recovered at home, I was able to move back to UC Riverisde to start my second year.

Fast-forward to 2015, I achieved remission. My lupus is active and I have been getting less flare-ups til this day. My current doctor is the one who first diagnosed me, since I trusted his input and referred me to the best hospital in the first place.

 LIFE CHANGE

I do feel that lupus is a big part of my life. It’s who I am and I have learned to love my health. In the beginning, I was only 13 years old with a typical rebellious teenager mentality. I was more concerned about finding my style and personality, and being “in love” behind my parents’ backs than listening to my doctor’s advice and being respectful to my family. I dreaded going to appointments at CHLA, because the lab work results ended up to be disappointing time to time. I suffered with severe depression and I lost a lot of friends due to my lupus. I had no energy to go out and socialize, or keep up with certain physical activities due to fatigue and weak joints. In high school, I dropped out of the IB program since I had difficulty managing stress of homework with my flare-ups. The stress didn’t go away in college, which was the hardest period I’ve went through. Looking back, I had separation anxiety from my family while living on campus and I had to learn how to live and take care of myself independently. However, I found assistance with UCR Disability Resource Center, where they accommodated me with rides to classes and communication with professors with make-up exams. I felt encouraged to raise awareness about lupus in an internship with the Women’s Resource Center, which many students, even some who had similar conditions, joined the presentation. It was the first moment where I felt pride in who I am. With my contribution to raise awareness and support of colleagues, I was awarded with the Preserverance Award for Women of the Year from the Women’s Resource Center in March 2012.

Most importantly, I love my family with my whole life. I am forever grateful to my parents, particularly my mom. My mom made sure that I was taken care of where she took me to majority of my appointments, picked up all my medications, drove me to emergency at least twice a month, and never left by my side during hospital stays. The compassion that my mom showed is what I try to give back to my loved ones and those who need help. I am also grateful to my boyfriend Jon who was the first and only man who was kind and accepting of my condition. He helped me a lot in college when I was very sick, and encouraged me to be the best person I can be. Without the support and love of my family and loved ones, I am not sure if I would have reached remission.

 HEALING

I found that rest, eating well, and taking medications on time helped my lupus to be under control. During college, I developed osteoporosis in my left shoulder due to the effects of prednisone. I had to use a roller backpack to carry my assignments to classes so I didn’t have to put a lot of weight on my shoulder. Also, I try my best to stay hydrated since I still take numerous medications and supplements and to help my kidney health. Since I suffer with depression and anxiety time to time, I take comfort in talking to my mom or my close friends, and reading too.

 STRUGGLE

I feel that I struggle with insomnia and fatigue. Fatigue is a popular symptom of lupus and that will not go away. Since lupus can lead to other conditions, I do suffer from GERD, Sjogrën’s syndrome, hypothyroidism, and proteinuria.

Lately, I have been concerned of my kidney health so I’ve been trying to alter my diet to decrease the risk of kidney stones. Thankfully, I have been feeling well, even shown in lab reports, so I’m trying to keep it up.

INSPIRATION

I know I should take care of my health for myself and practice self-love. However, I do care of my health for my family. They have been there for me through all my accomplishments. They witnessed my darkest times to my happiest times. I’m completely grateful for their love and guidance over the years and I hope that I’ll continue to make them proud.

Find Laura | @angelica513