Living with Lupus
Katie Bamberger was diagnosed with Hypothyroidism 11 years ago, Lupus two years ago and Celiac disease two months ago.
It's an ordinary Wednesday evening at the Bamberger residence. Deb, the mother, stirs a wire whisk through a cream-based soup on the stovetop. She uses a spoon to taste her creation.
Katie, the youngest daughter, sits at the breakfast bar, scrawling entries into a notebook.
Oxycontin: 8 a.m., 8 p.m. Percocet: 9:30 a.m., 1:30 p.m., 5 p.m., 11 p.m. Plaquenil: 8 a.m., 8 p.m., Synthroid: 9 a.m. The notebook reads.
"Here, try this," Deb says, handing a small dish of the soup to Katie. "Is this right?"
Deb is the kind of woman who is no stranger in the kitchen. But now, she seems unsure of her abilities because her cooking habits have changed recently.
Deb eagerly watches as Katie tastes the soup. Deb is still getting used to cooking with 11 different types of flour.
Katie gives a passing nod of acceptance as she spoons the gluten-free soup into her mouth.
Snack: Cream of Chicken Soup Katie adds to her notebook.
Katie, 19, keeps a detailed account of everything she puts into her body. She does this because her quality of life depends on it.
Katie was diagnosed with Hypothyroidism 11 years ago, Lupus two years ago and Celiac disease two months ago.
She often finds herself in so much pain that her prescribed narcotics merely "take the edge off."
Hypothyroidism affects her body's natural ability to produce thyroid hormone in the thyroid gland. She takes Synthroid, which acts as a mock hormone. There is no cure.
Celiac disease is an autoimmune disorder that affects her body's natural ability to metabolize wheat products, forcing her to adhere to a strict gluten-free diet. When gluten is present in her body, her small intestine becomes inflamed, leading to discomfort, nausea, fatigue or diarrhea. She controls this by steering clear of any product containing wheat, which proves to be a difficult task. There is no cure.
Lupus is an autoimmune disease in which her body will attack its own healthy tissue and organs. This causes chronic pain, inflammation, rashes and a drastically reduced recovery time from common illnesses. Katie manages her Lupus by not overexerting her body and getting plenty of rest. She staves off the pain with powerful, but drowsy-inducing painkillers. There is no cure.
Katie used to be a really active child, and growing up, Deb would have never guessed her daughter would develop such grave medical problems at such an early age.
Katie's face lights up when she talks about before she got sick.
"Doing physical things – softball, running, just being able to get up and go. That's what I miss the most," Katie said.
It was playing a lot of sports that first tipped Katie off that something was wrong with her body.
At 16-years-old, playing and training for softball regularly, Katie wasn't recovering after practice and games like she normally would.
She found herself becoming more fatigued as time went on and simple activities such as school proved to be difficult to get through.
After going to the doctor, she was first given a diagnosis of "undifferentiated tissue disorder."
Katie said she thought the prognosis would be Lupus all along, but that her doctors ran extensive tests to be sure.
Deb said that when they received the news that Katie had Lupus, it was "a hard diagnosis to take, because you know there's no cure."
Katie copes with her disease well, having lived with it for three years so far.
Despite being no stranger to the chronic pain and fatigue, some days still prove to be difficult for Katie.
She takes between 22-26 pills a day on average, on top of using prescription cream for pain in her larger joints and hands.
She says that she knows her body a lot better since being diagnosed with a chronic illness.
"I know I will be able to do certain things, and there are certain things that I just won't be able to do," she said. "I know that even an hour or a half hour of an activity will make a difference in my next day."
But for everything the disease has taken from Katie, she says she has gained so much more.
"I feel like I've grown a lot as a person," she said. "If I had never gotten sick, I think I would still be so naïve about so many things."
She said she's also learned not to take things for granted.
"Instead of complaining, ask someone how their day is going, because everyone is fighting some kind of battle."