In 2016, Victoria Gibbs felt stunned when she returned from a vacation in Mexico with a serious sunburn.
“That was highly unusual for me. With my darker complexion the sun has never really been an issue,” Gibbs, 37, of Manhattan, told TODAY. “I just shrugged it off.”
At the time, she was training for a national yoga competition, practicing twice a day for 90 minutes. While she should have been in peak physical health, she began experiencing other odd symptoms, including night sweats, sleeping 12 hours a day and blood blisters on her fingertips. She visited urgent care clinics but no one had any answers.
“I finally went to one urgent care doctor and she said, ‘Something is very wrong. You need to see your general practitioner,’” Gibbs said. “She’s like, ‘I can’t help you.’”
Doctors eventually diagnosed Gibbs with lupus and she started medications and made some lifestyle changes to manage it. She hopes to help others with chronic health conditions.
“At least by sharing my story, the good and the bad, it will give people some solace and allow them to realize they’re not alone in their struggle and there are other people suffering from the same thing,” she said. “It might give them hope and inspire them that they can also do it one day at a time.”
Usual symptoms — complete exhaustion and brain fog
After returning from her trip with the odd sunburn, Gibbs slowly developed new symptoms. While she had night sweats, she noticed she did not sweat during hot yoga sessions. The more she practiced in a hot studio, the less she was able to do. She slept more and more just to be able to get through a few hours of yoga a day. It was during the competition that her symptoms intensified.
“As soon as I got into the cold, I noticed that I started to get these blood blisters on my fingers and I had a very severe fever, cough. It sounded like whooping cough,” Gibbs recalled. “My dad always joked that maybe I had tuberculosis.”
As she stepped onto the stage into the bright lights, Gibbs’ vision darkened.
“I completely blacked out. I couldn’t see anything,” she said. “My body basically collapsed on stage.”
Gibbs felt “totally devastated” and stopped practicing yoga. She visited several urgent care clinics but no one knew what was wrong and urged her to rest.
“My faced started to explode. It looked like I had mumps. My cheeks just completely blew up and I couldn’t understand it,” she said. “I wasn’t functioning like myself whatsoever. I would be receiving phone calls at work from my father or friend — someone to check in and say hi — and I wouldn’t recognize their voices anymore.”
Then she started having migraines and dangerous bouts of brain fog.
“I couldn’t read anything. The only thing that was registering to me were colors,” she said. “It was very traumatic and my body just shifted very quickly. All of this happened in a span of about four months.”
She also lost weight, developed white sores on the roof of her mouth and throat, lost clumps of hair and began sleeping as many as 18 hours a day. After the urgent care doctor and her boyfriend at the time encouraged Gibbs to see her regularly doctor, she reluctantly called her parents.
“It wasn’t until my parents forced me to come home that they realized how terrible my state of health was,” she said.
A lupus diagnosis
Her general practitioner ran blood tests and couldn’t tell exactly what was wrong so he recommended that Gibbs visit a rheumatologist.
“She was like, ‘I’m not 100% sure, but I think you have lupus,’ and I literally started crying because I had no idea what lupus was,” she said. “I was like, ‘Is this the end of my existence?’ Like, ‘Am I going to be incapacitated for the rest of my life?’”
The doctor started Gibbs on steroids to help calm the symptoms. She developed a fever and her parents took her to the hospital, which confirmed she had lupus nephritis, which targets the kidneys. She began taking more drugs that suppressed her immune system and treated her symptoms.
“It calmed all the symptoms down. I would say within six-weeks-time I started to feel like a human again,” she said. “The steroids really help with the kidney function and calming it down. It helps will all sorts of inflammation and joint pain as well.”
Since her diagnosis, she’s been taking steroids to manage her symptoms. Her doctor tapers them based on how severe her symptoms are. If she has a flare, she might need to take more. If her health stabilizes, she can take less. Gibbs hopes that one day her lupus will be in remission and she won’t need to take them at all.
“I am hopeful that by sometime next year I can actually get off the steroids because it’s not a way I personally want to live,” she said. “I had to make some lifestyle changes.”
Gibbs eats a predominantly vegan diet, though sometimes she eats fish if she feels like she needs more protein. She doesn’t drink, smoke or do drugs and tries reducing her stress as much as she can. She returned to her yoga practice, which helps her tremendously.
“It allows me to really calm my mind, calm my body. I meditate every day,” she said. “I realized I can’t afford to be stressing out about something. It eventually leads to some sort of flare up or joint pain or random inflammation.”
Since her diagnosis, Gibbs prioritized herself for the first time and has become attuned to what her body tells her.
“There are always signs to tell you what’s going on with your body. It’s whether you actually listen to them or not and take heed and slow down,” she said. “I’ve always been someone who will put others’ needs before my own but with lupus I honestly can’t afford to do that.”
She now practices yoga four times a week, instead of twice daily and if she does a hot yoga class she practices only two times a week so she doesn’t push her body too much.
“I highly recommend a yoga practice,” she said. “Getting your body moving in that capacity really helps with any sort of joint pain. It helps with inflammation in a massive way.”
Even moving “five to 10 minutes” a day helps her, she said. She hopes her experience helps others grappling with their health or any other challenges.
“It’s nothing to be ashamed of. It’s something that you should totally embrace,” she said. “If you can share that experience with someone else it might also help them grow in their own life experiences.”
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