I was diagnosed with scleroderma and was given 5 years to live. I am celebrating with lavish birthday parties 17 years later.

I was diagnosed with scleroderma and was given 5 years to live. I am celebrating with lavish birthday parties 17 years later.
  • Kheesa J was diagnosed with scleroderma, a rare autoimmune disease.

  • Her daughter was an infant, and doctors told her she had five years to live.

  • Seventeen years later, she's stable and has another daughter.

This as-told-to essay is based on a conversation with Kheesa J. It has been edited for length and clarity. Her full name is known by Insider, but we are referring to her by her first name and last name initial to preserve her daughter's identity.

In 2005, I was going through a divorce and moving out on my own. When my body became swollen and achy, I thought I had moved too much furniture. Then, I noticed more symptoms. I worked on the third floor and normally jogged up the stairs because I was always running late. Suddenly, I couldn't make it to the second floor, and before long, I was taking the elevator.

But the last straw came on my birthday. I bought beautiful green, gold, and blue shoes to match my outfit. They fit perfectly in the store, but at home, they were too small.

I made a doctor's appointment after that, but they sent me home. I was told I had depression or maybe ate too much salt. It took about five appointments and requesting a new physician before anyone took me seriously. At that appointment, I literally threw my hands in the air because I was so frustrated. The doctor noticed my hands were purple, and she sent me to see a rheumatologist.

I was diagnosed with a rare autoimmune disorder

The specialist didn't know exactly what was going on, but he started me on some medications and told me not to get pregnant while on them. Sure enough, six weeks later, I found out I was expecting. The pregnancy was tough, and I had to deliver my daughter a month early.

When I was giving birth, the nurses tried repeatedly to give me an IV. I felt like a pin cushion and finally spoke up, demanding a new nurse. That nurse came in and looked at me like my grandma — she had something important to say, and she was going to make sure I was paying attention. "Tell your doctor that I said you have thick skin," she said.

I never saw her again, but I took her words back to my rheumatologist. Using her tip, he diagnosed me with scleroderma, a rare autoimmune condition that causes the skin and other organs to thicken. Because of scar tissue in my lungs, I also had sclerosis-associated interstitial lung disease (ILD), a condition that makes it hard to breathe. At first, my doctor was happy to have an answer, but then his face got serious: he told me there was basically no treatment, and I was going to die.

I vowed to change my outlook after getting chemo on my birthday

I fired that doctor and found another specialist I still see today. She had a better bedside manner but the same grim news: I had about five years to live. My daughter was only an infant, so hearing that was terrifying.

A year later, I was getting chemotherapy treatments to help with my symptoms. The nurse looked at my birth date and noticed it was my birthday. She said, "I'm so sorry you're here."

But in that moment, she shifted my mindset. I wasn't feeling bad for myself. To be getting treatment meant I was still alive. I decided that I was going to live every second that I could, and I was never going to have another boring birthday in the hospital again.

I started planning lavish parties

That's when I started planning lavish birthday parties. When I turned 30, I flew my friends out to Vegas. Another year, we rented a party bus and went to play laser tag drunk. One party was the kids' party of my childhood dreams — and just as much fun for adults.

At the same time, I realized I needed to make special memories with my daughter. There was a real chance I would die, and she'd only have memories of me. I wanted them to be extraordinary ones.

We spent the night in zoos and in a wax museum. We started a tradition of making intricate costumes for Chick-fil-A's Cow Appreciation Day. We traveled the country and have seen almost all the national monuments.

Today, my oldest is nearly an adult

Today, my oldest daughter is almost 18. Her birth literally saved my life by getting me a diagnosis, thanks to the nurse. Then, her existence saved me. I had no choice but to fight to be here with her, even in the face of a terminal prognosis.

Her sister is 5. I'm still living with scleroderma, but I've realized there's life after diagnosis. Truly, I feel like my autoimmune disease is the best thing that's ever happened to me. It wasn't until I faced the possibility of dying that I really started living.

I've learned a lot about managing a chronic condition. For example, if doctors don't take me seriously, I say, "Please make a note in my chart that I asked you about this, and you brushed me off." Suddenly, they're more apt to listen.

More importantly, I've learned to appreciate every day. Tomorrow is never promised to anyone, so we need to all take advantage of today.

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