Several months before Kheesa realized that she needed to go to the doctor, she recalls one summer day that signaled what was to come.
“I went to a family reunion in Buffalo, NY. They were having an unseasonably warm summer, so everyone was air-conditioned, and I just kept saying, ‘My hands are so achy.’ They wouldn’t stop hurting all week, and they were swollen. I didn’t know if I was having an allergic reaction. I just remember complaining about that,” she says.
The next sign that something was wrong was during Kheesa’s birthday in August, when the self-proclaimed shoe lover was picking out the perfect pair of shoes to match her birthday outfit.
“I had a pair of birthday shoes that I wanted to wear. They matched this outfit just for reference: it was dark blue, sky blue, lime green, and white. I found a pair of shoes that had all those colors and was super excited. I got ready, dressed up, and went to put on my shoes, but they didn’t fit,” Kheesa recalls. “I was confused because they had fit at one point. I tried the dark blue pair—they didn’t fit; the light blue pair—they didn’t fit; the green pair—they didn’t fit. It was like, Okay, I guess I’ll wear the white pair…but they didn’t fit either. Now I’m like, ‘What is going on here?’”
Confused, Kheesa was forced to pair her fancy outfit with a pair of black slides before heading to work. After work, she decided to go to the doctor to figure out why her shoes weren’t fitting.
“They kind of brushed me off, told me it was too much salt, and sent me home,” Kheesa says of the doctors’ response to her concern.
While moving into an apartment, Kheesa began experiencing more symptoms – this time in the form of achy and swollen knees and elbows.
“I was thinking, ‘Maybe I did too much. I shouldn’t have been pushing this furniture around,’ but it wouldn’t go away,” she shares.
Kheesa, who rarely got sick, knew something was wrong so she returned to the doctor to tell them what they’d missed.
“I went back another time, telling them that I can’t sleep at night. My body hurts so much that one morning, I woke up with tear stains on my face. I guess I was crying at night,” she adds. “But now, they’re like, “You must be depressed.” It just kept going like this.”
Determined to find the answers she was seeking, Kheesa, who was on her fifth doctor, remained determined to advocate for herself.
“I kept seeing somebody else because I knew something was wrong—somebody’s got to tell me something before I go. I said, ‘I need you to test me for everything. Something is wrong,’” she adds.
Although the doctors knew something was wrong, Kheesa’s test results came back normal making it challenging to find out exactly what was wrong.
Frustrated, Kheesa threw her hands up in the air discovering that they were purple.
“She said, ‘I know what that is. That’s called Raynaud’s phenomenon. When your body gets cold, your blood vessels constrict and turn your hands white, blue, purple, and they make them achy and swollen,’ which had been happening to me in July, anytime I got cold,” Kheesa shares.
Kheesa was referred to a rheumatologist who told her to refrain from getting pregnant for at least a year while they worked on stabilizing the condition. Six weeks later, she discovered she was pregnant.
“They wanted to take me off some medicines because they weren’t sure what it was going to do to the baby,” she shares. “ But then I gradually started getting worse, and they decided that it was more important to save me or to get me to a point where I was comfortable so that I could have the baby.”
Kheesa was barely eight months pregnant when a routine checkup turned into a whirlwind of events.
“The doctor informed me that the baby had moved into the birth canal, and I needed to head to the hospital for an immediate C-section,” Kheesa recalls. “Little did I know, this moment would mark the beginning of my journey with scleroderma-associated interstitial lung disease (SSc-ILD), a rare autoimmune disease.”
As Kheesa prepared for the C-section, a nurse attempted to insert an IV, but she struggled, sticking Kheesa six times in both arms and hands.
“Frustrated and in pain, I finally asked her to find someone else. An older nurse came in, showing compassion and understanding,” Kheesa adds.
Instead of immediately inserting the IV, she comforted Kheesa, noting that she had “thick skin.” Those words stayed with Kheesa.
The next month, she returned to the rheumatologist for a follow-up and shared the nurse’s comment about her skin with the doctor.
“He left the room briefly and returned with excitement, diagnosing me with scleroderma,” Kheesa recalls. “The news was both a relief and devastating. While I finally had a diagnosis, I learned that scleroderma had no cure and could be life-threatening.”
Kheesa was referred to a specialist at Duke University Hospital in Durham where she finally felt like she was in the right hands.
“The specialist confirmed the diagnosis and explained the severity of the disease. He emphasized the need for aggressive treatment, as scleroderma progresses quickly,” Kheesa shares adding that she was told she might only have five years to live without treatment.
Kheesa’s experience taught her the importance of self-advocacy and finding the right medical support.
“If I had accepted the initial diagnosis of ‘too much salt,’ my condition might have gone untreated. I knew my body, and I knew something was wrong. It’s essential for anyone facing a rare disease to listen to their bodies, seek second opinions, and find the right healthcare team,” the mother of two notes. “If you’re facing a similar situation, trust your instincts, seek knowledgeable professionals, and don’t be afraid to speak up for your health.”
According to Lungs & You, “Interstitial Lung Disease (ILD) can be a serious lung disease that is caused by many different factors, including autoimmune diseases, exposure to harmful substances, like asbestos or silica dust, and medications, as well as many unknown factors.”
ILD leads to symptoms such as dry cough, fatigue and shortness of breath and can cause serious damage to the lungs.
Because symptoms are often dismissed for more common conditions, diagnosis can take years leaving patients with an average life expectancy of three to five years.
Despite these challenges, Kheesa remains determined to live life to the fullest. In fact, she lives by the mantra of “living life off of the couch.”
“Traveling and embarking on adventures have been a significant part of my life, especially since my diagnosis. I wanted to create lasting memories for my daughter and show her the importance of embracing life’s adventures,” Kheesa, who has been to 39 states and counting, shares. “Balancing these experiences with my health requires careful planning and listening to my body, but it’s a balance I’m committed to maintaining.”
Some of her most memorable moments have been her trips to Australia and Paris and attending Beyonce’s Renaissance World Tour in New Jersey last July. She’s also excited about attending Taylor Swift’s upcoming concert in New Orleans with her daughter in November.
Key Lessons Khessa Has Learned Along the Journey
- Advocate for Yourself: Don’t be afraid to speak up, ask questions, and ensure you receive the treatment you need.
- Seek Reliable Information: Look for trusted sources like LungsAndYou.com and the National Scleroderma Foundation for information about your condition.
- Write Down Symptoms and Questions: Keep a notebook or use your phone to jot down symptoms and questions for doctor visits to ensure you address all your concerns.
- Don’t Let Your Diagnosis Define You: While receiving a diagnosis can be devastating, it doesn’t have to define your life. You can still find joy, happiness, and peace.
- Happiness is a Choice: Happiness, to Khessa, is about family, enjoying simple pleasures like watching TV or traveling, and practicing self-care. She emphasizes that happiness is internal, and it’s up to you to choose to be happy.
- Make Yourself Happy: Instead of relying on others to make you happy, find out what brings you joy and do those things.
- Gratitude: Khessa highlights the importance of gratitude for waking up each day, recognizing it as a blessing that not everyone receives.
- Advice for Others: Khessa shares advice she received as a teenager, which is to make yourself happy. She encourages others to find what brings them joy and to choose happiness.