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Antoinette stands behind her salon chair, scissors in hand, her legs already aching before she has even finished her first client.

She has been styling hair for more than 23 years, but for the past five, her days have grown heavier because of lupus, the chronic autoimmune disease that causes the body to attack its own tissues. It has affected her kidneys, joints, memory, and mobility, but the emotional and financial toll might be the hardest to bear.

"Things I used to do, I can't do them any more, and places I used to go, it's as if I'm lost and can't find my way around. I have to be using the GPS," she said.

"Sometimes I wake up in the morning and I feel like I can't move. Pain. Feet swell. Face swell." She currently takes eight prescriptions every day.

"It is so expensive that my medication is coming from $103,000. The pill I used to take for my kidney, I took four for the day, and it cost over $70,000, and I have the NHF card that helps a lot. Now I'm paying over $40,000 per month," she explained.

Even with subsidies, the burden is crushing. Some months, she must choose between medication and other essentials. Her pills only last a month, and lab tests every three months bring additional costs.

"Right now, I'm thinking about running away, honestly," she admitted. "When I look at it mi a seh, 'Father God, my work cut down, I can't get to work as hard as I used to, and the medication is there to buy, doctor to visit, how am I gonna manage?' The money just keeps on a go dung."

For years, her salon business sustained her family. But lupus has changed her pace. She used to do seven or eight heads a day. Now, she caps it at three as she cannot stand for long periods.

"What I do now, I go by appointments only, so I can manage how many customers I accept daily. I have a stool for whenever my feet start hurting, I start rest on it. It's not an easy job with the sickness I have."

Adjusting to that new normal has been tough. Her longtime clients have stayed loyal, being patient when she needs to cancel or slow down.

"Sometimes I go to work five or six days a week, now is just two day per week. When the job gets busy, I pay others for help or give my client to different hairdressers."

Antoinette said that the hardest part isn't the pain, it's the loss of control. For someone who has always been independent, relying on others has been humbling and emotionally draining. Then there are the blackouts.

"My recent one was earlier this year, the other before that was November. I don't know what happened. My husband said I passed out and he had to take me to the hospital."

"That's a scary experience because you never know what the outcome might be," she added. The fear lingers long after she regains consciousness. Medical tests haven't brought answers. Her MRI came back normal, leaving her with more questions than peace.

"It's so depressing at times. Sometimes I have to be asking my mom or my husband what happened that time, or how did this happen? To remember stuff, I have to write down stuff."

Still, what gives her the strength to fight is her children - age 10 and 16. Antoinette requested that her full identity be withheld to shield her children from unwanted attention, potential bullying, and emotional distress that could arise from public exposure of her health struggles.

"When I see how my children are doing good in school, that motivates me to keep going. Sometimes when I get up in the morning and I feel exhausted, I think about them and I try to push, push myself to go out and work."

"I think about the uncertainty of my illness every day. Sometimes when I talk, my family say, 'Why you planning on death?'"

Her thoughts, though dark at times, are grounded in reality. She doesn't dwell in fear; she plans for what might come.

"Sometimes I reach a point where I say, 'Father, I don't know what you have in store for me, but I would love to see my children past the worst.' I'm wondering if they will adapt it from me because I don't want them to go through what I go through."

"I wouldn't wish this on my worst enemy. It makes you feel depressed more than how you feel happy. Worse when you have your kids, and you have to put out the best for them," she said. Though physically and emotionally tired, giving up is not an option.