Alida Quinonez, 23, took the measure of the day.
“Today, I rate my pain a six out of 10,” she said.
Things we typically do and feel on a normal day can be taken for granted when they’ve always come natural to us, but for people with life-time illnesses, simple things like waking up without a headache can be a blessing.
Quinonez first started feeling ill in December of 2017, and within six months she had lost 30 pounds. In June of 2018, she was diagnosed with chronic kidney disease.
Oftentimes, a chronic illness can easily affect a person’s identity, their sense of who they are – and even threatens to define them.
“Initially before getting diagnosed I couldn’t even make it to class, which caused my grades to fall short, leading me to academic probation,” says Quinonez. “When I was finally diagnosed, I knew I had work to get done at San Francisco State. I worked relentlessly to boost my GPA and achieve my undergraduate the two years that followed. I was on the dean’s list consecutively, semester after semester.”
According to Gregory Brent, 64, physician Internal Medicine and Endocrinology, the kidneys clear toxins from the body. With chronic kidney disease, the toxins accumulate in the body, acids collect and the patients can become anemic and have bone disease.
“Maybe I am not your typical person?” Quinonez asks without looking for an answer. “But chronic kidney disease has not held me back from anything. If anything, it has made me stronger and taught me the importance of balance and moderation.”
Ismael Castillon, 26, a registered nurse at Providence-Cedar Sinai Tarzana Medical Center in Los Angeles, states that chronic kidney disease is an umbrella term that is used to define kidney damage or a decrease in glomerular filtration rate, which is a test used to check how well the kidneys are working.
“I remember my nephrologist telling me I had chronic kidney disease Stage 3,” Quinonez says. “I remember him telling me that this disease had no cure. Since I had taken very few blood tests growing up, it was difficult to predict how fast my kidney function was decreasing, but he said I would need a kidney transplant in five to 15 years.”
The body uses kidneys as a filter for waste, as well as storage for excessive fluids from blood. If a kidney fails, waste will begin to build up.
“If the kidneys are not functioning correctly, symptoms such as nausea, diarrhea, lethargy and abdominal cramps may be present in the early stages of kidney dysfunction,” says Castillon.
While living with this illness and all that comes with it, Quinonez can proudly say it does not define her.
“Physically, 99.9% of the time I cannot say ‘I feel good,’” Quinonez admits, “and I may have to cancel some plans here and there if I am feeling awful – however, most of the time it’s manageable.”
Recently, Quinonez was accepted into the University of Southern California for the masters program in Communication Management.
“USC is extremely competitive and rigorous. It requires me to be on my A-game at all times,” Quinonez says.
Quinonez highlights the fact she’d rather live a “normal” life, but because she has no choice, she does not let it bring her down.
“It’s a part of me, and though at times it would be nice not feeling any pain, it’s made me a stronger individual, physically and mentally,” Quinonez says happily.
Michelle Doss, 30, was first diagnosed with Lupus at the age of 16.
“I remember when I first got sick, the doctors weren’t able to figure out what was wrong,” says Doss. “I had been in the hospital for two weeks for symptoms such as a cold. I began to gain fluid around my heart, which caused me to stay longer.”
According to the Lupus Science & Medicine foundation, lupus is an inflammatory disease caused when the immune system attacks its own tissues.
“My body works against itself,” says Doss.
“Systemic lupus is an autoimmune disease, the person makes antibodies against their own body tissues,” says Brent. “[It] can lead to kidney failure, joint inflammation, brain inflammation and heart inflammation.”
A person with lupus can go through a number of things, such as pain in their muscles, anemia and/or fatigue, sharp pains in the chest area, rashes and even hair loss.
While always feeling like your own body is against you, lupus has caused Doss to feel unease with life itself.
Brent states that chronic illnesses usually require taking regular medications, doctor’s visits, frequent laboratory testing and often treatments that interfere with day to day life.
“When I was younger, I kind of felt limited on what I could and could not do. But I think that was because I was confused as to where my life was going,” says Doss
Overtime, Doss has learned how to deal with her battles, and live as best as she can.
“I’m not limited anymore,” Doss says with a smile on her face, “don’t get me wrong, having lupus is scary, and I often find myself asking ‘Why me?’ But I know I’ll get through it. I know I will.”
Rowan O’Bryan goes to UCLA, with a major in Fine Arts and a minor in Disability Studies.
“I was born with Cystic Fibrosis,” says O’Bryan. “It’s a genetically inherited disease, but I wasn’t diagnosed until I was four months old. My mother started to notice I was losing too much weight and took me to the doctor.”
O’Bryan explains that cystic fibrosis is a progressive genetic disease, which affects almost every organ in the body by changing the cells in one’s mucus.
“Cystic fibrosis secretions in the lung and pancreas become thick and do not clear from these surfaces normally. Due to a mutation in a chloride channel,” says Brent, “the lungs have frequent infections, lots of thick mucous secretions. One will have difficulty breathing, and eventually the lungs are destroyed. The pancreas also becomes destroyed, leading to diabetes and poor digestion. Patients often need to take insulin and digestive enzymes.”
Although O’Bryan is only 21-years-old, her views on life are a bit different than your average young adult.
“Since I was young, I noticed that my views on life were very different from those around me,” says O’Bryan. “The possibility of dying was always on the back of my mind. I adopted an attitude on life to keep me focused on the present, rather than the future.”
O’Bryan states that she is currently looking for a job, but due to her illness and restrictions it causes her, most are not willing to accommodate her needs.
“I can’t work long shifts,” says O’Bryan, “I can’t stand or walk around for too long. I can’t hear very well and a lot of places are not willing to work with that.”
The way someone prefers to manage their chronic illness is a personal choice. However, Brent admits that chronic illnesses will inevitably affect one’s identity.
“Although many people with chronic illnesses cope very well, I believe most chronic diseases are part of a person’s identity since it requires modifications of your lifestyle,” says Brent.