A Blessing In Disguise- The True Story
Many have suggested I’m cursed, but I choose to look at my disease as a Blessing in Disguise. So I wrote a book about my journey and titled it "A Blessing in Disguise". My deepest desire is to turn the bad of this disease into good for others. Help me to share my story and bring hope to others who are fighting and want to give up!
My Story: Written by Emily Cochrane, a reporter for The University of Florida's newspaper- The Alligator
Kristen Fox’s last meal was beef stroganoff.
It was homemade: noodles drenched in a sauce of sour cream, milk, broth and chunks of beef. She savored the sensation of noodles, the taste of the dish she loved, before she threw it up one last time.
The next morning, on Jan. 13, doctors inserted a catheter in her body. Instead of eating meals, she would now receive nutrients through her veins.
She hasn’t had a meal since.
The catheter is the latest defense in Fox’s battle against gastroparesis with general dysmotility of the intestinal tract — a chronic stomach disorder that prevents her stomach and her intestine muscles from dissolving food.
Despite the disorder, the 22-year-old, who now lives in Colorado Springs, Colorado, graduated cum laude from UF in May 2014 with a degree in health science. The day of her final meal, she published “A Blessing in Disguise,” a book about her struggle with the disorder.
“Instead of living every day like I’m sick, I try to live every day like I’m not sick,” Fox said. “It makes me feel kind of normal.”
When she was a child, Fox could still eat her favorite foods: pizza and pasta.
As a baby, doctors said the pain in her stomach was colic and sent her to see a digestive tract disease specialist.
But as she grew older, the pain worsened, and the list of foods she could eat without throwing up shrank.
“We knew all along she was very sensitive. ... It just got progressively worse,” said her father, Tim Fox, 52. “As a parent, it’s obviously very difficult to see one of your children that you love deeply go through any suffering.”
When she was a teenager, doctors thought it was an eating disorder and told her to change her mindset.
“It was twisted,” Fox said. “I tried to convince myself that I had an eating disorder because I thought I would get better if I did.”
It wasn’t until she was about 15 that the words “gastroparesis” and “dysmotility of the digestive tract” became part of the conversation.
For Cynthia Clare, who oversees Fox’s case as a nurse with Maxim Healthcare Services, Fox is the only patient with the disorder she’s ever seen.
“She’s very, very compliant. A very good patient,” Clare said.
In 2012, doctors inserted a gastrostomy tube in her stomach, and she began pumping nutritional formula. But when the formula accumulated in her stomach over time, she switched to the catheter and a more personalized formula.
Things have started to improve since.
Fox has had nausea but very little vomiting. Even her weight, the most noticeable side effect, has improved: She’s gained seven pounds since the catheter insertion, pushing her 5-foot-3-inch frame to carry 76 pounds.
“She’s amazing,” Clare said. “She’s a trooper.”
UF was a chance for normalcy.
“I really wanted to experience what college was like,” Fox said.
She played club lacrosse her freshman year and cheered her team on for the three years she couldn’t play. She became a member of Gator Emergency Medical Services and Delta Epsilon Iota Academic Honor Society.
She studied to distract herself from the pain.
And when she graduated, Fox was triumphant.
“She has the grit and determination to push through,” her father said. “To see her finally reach the finish line, I was really joyful, proud and excited for her.”
The hardest part, Fox said, is to keep fighting.
“Part of me is like, I just want to go to heaven,” she said. “There’s no pain there. There’s no suffering. I’m tired of artificial things keeping me alive.”
Sometimes Fox will chew a piece of bread or pasta. It reminds her of the taste of food before she spits it out. Other times, she’ll drink chai tea, but drain it out through the tube in her stomach.
It keeps her sane, she said.
One of her biggest fears isn’t for herself — it’s for her children.
“I don’t know if I’ll even be able to have children,” Fox said. “But my biggest fear is that it’s hereditary. I don’t ever want someone to go through this.”
Despite her struggle, Fox said she tries to remain positive with the support of her friends and family. She wrote her book to encourage others going through similar hardships.
“A lot of people told me I couldn’t go to college,” Fox said. “A lot of people suggested I was cursed. What I try to tell people is that I could look at my life as a curse, or I could look at my life as a blessing. I would not be able to relate to people suffering if I didn’t have this.”
Her book contains a series of essays written about living with her disorder from late 2013 to late 2014. It also contains essays dedicated to her family members because, she said, she would have given up without them and her friends.
In January, Fox hopes to pursue physician assistant studies at the University of Saint Francis in Albuquerque, New Mexico — an acceptance she deferred because of the disorder.
“Doctors have questioned why I’m still alive,” she said. “I say that the reason that I’m alive is because God keeps putting air in my lungs, and that means he wants me to fight.”
My AMAZING family! I wouldn't be alive without their love and support!
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