For 18 years, Nicole Sams and Mary Morgan battled painful and mysterious health issues alone. But then a #hashtag changed everything.
Late December 2017, Nicole Sams was on her way to see her best friend, Mary Morgan, at Children’s Healthcare of Atlanta. Celebrations were in order, so Nicole asked her mom to make a pit stop at the nearest Starbucks to pick up Morgan’s favorite drink. While it might have been a convenient way to break up the hour-plus drive, it was also the kind of gesture besties make for each other without blinking.
Nicole soon showed up to meet Mary with the cup of Joe and her trusty companion, Pippi the pitbull, in tow. It was a double date of sorts; Mary had her own service dog, Abraxos the golden retriever, waiting by her side while she recovered from her nasojejunal (NJ) tube placement. The two friends had been planning their rendezvous for months, texting frequently in anticipation. Now that the day was finally here, however, Nicole was a bundle of nerves. You’d be, too, if you were about to meet your best friend for the first time.
Nicole scanned the lobby for the person who knows some of her most intimate secrets, searching for the face she had only seen on Instagram. Suddenly, she heard an enthusiastic "Hi!" behind her. When she turned around, there was Mary, running into her arms.
"A movie moment," says Nicole.
For Mary, it was a natural first embrace. "It was like we knew each other our entire lives and we were picking up right where we left off," she says. For Nicole, it feels like a wish fulfilled. "We always told each other, 'I just wish I could hug you and be there for you.' And now we were."
Nicole and Mary's first hospital hangout made for the perfect afternoon, and the start of a real-life friendship without limits. But before the pals met online and became each other’s support systems, they both dealt with lingering health issues on their own—and they continue to manage them every day, learning important lessons along the way. Here, Nicole and Mary share their three biggest tips for living your best life with a chronic illness.
It’s no wonder the two women became fast friends. For starters, they’re both 19, born-and-raised Georgians, and ravenous readers. And, of course, they’d bond over the different illnesses that started to invade their lives as teenagers.
While Nicole fought her way through her fair share of gut issues as a kid, she mostly chalked them up to her struggles with anxiety. Giving up meat and dairy helped, but her stomach problems roared back with a vengeance during her freshman year at Columbia College Chicago, where she became "debilitatingly sick"—nagging fevers, an inability to keep most foods down, blotchy red patches all over her body.
"If I was with my friends, I’d make excuses to go home and sit in my shower and cry," Nicole says. "I don’t remember a lot of that year because I was in so much pain." She transferred to the University of Georgia after two semesters. Some salvation came in the form of a Celiac disease diagnosis last summer, but just when a gluten-free diet started to improve her symptoms, another formidable foe—Hurricane Irma—wreaked havoc on her body and life. Because of the storm that hit the southeast in September, Nicole's apartment that she shared with her twin sister flooded, leaving them homeless for weeks. "We lived out of our car for a while," Nicole says. "Everything was awful."
Worse, the stress meant she could hardly eat. When she tried to put anything in her mouth—even a sip of apple juice or water—she’d scream in pain. But Nicole persisted. When she and her sister moved back into their apartment later that fall, after online friends generously paid for renovations, a gastrointestinal specialist recommended a nasogastric (NG) tube to help restore her nutrition. After a short period of being on an "awful formula," Nicole searched for a gluten- and dairy-free alternative. She found it in Kate Farms and immediately felt better.
"It’s amazing to read the ingredients and actually know what they are!" says Sams. "Kate Farms isn’t filled with any weird chemicals. I know I’m getting the right amount of protein, carbs, and calories that I need every day to stay nutritionally balanced."
While Mary eventually unlocked the same nutritional peace of mind, she faced more roadblocks along the way. She also started experiencing nasty issues around age 16, starting with fibromyalgia, which caused "lots of joint pain, fatigue, and constant aches all over." On New Year’s Eve of 2014, her long-dormant asthma flared up so bad that she landed in the emergency room, kicking off a pattern that found her in the hospital for most major holidays in 2015.
Seizures followed in February, including some that lasted for hours. "Doctors still don’t know what caused them, but they’re pretty sure it’s photosensitive epilepsy," she says. By that spring, Morgan could barely get out of bed most days, which forced her to drop out of high school to focus on her health. (She’s well enough now to study for her GED.) Then came the lupus—"basically, it’s autoimmune awfulness," she says—but she was allergic to the medicine typically used to treat it.
Before things got better, they got worse. In August 2016, Mary began experiencing an assortment of nasty stomach issues, including nonstop nausea and vomiting. She was placed on an NG tube in September, but could barely tolerate her original feed, which led to more pain and vomiting. She finally made the switch to Kate Farms a year later, only after dual diagnoses of postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS), the latter of which triggers "allergies to just about anything and everything," she says. Enough was enough. She needed a formula without allergy-causing preservatives.
"I’m finally back at a healthy weight again," Mary says. "In a sense, Kate Farms has given me more freedom because I feel more like a person who can actually go out and do things now that I have the energy again." While she’s "still trying to find the ultimate answer"—her cardiologist suspects gastroparesis—she at least has her nutrition under control. "Everything has calmed down," she says.
Another thing Nicole and Mary have in common: They both love animals. Nicole "read every Jane Goodall book I could get my hands on" when she was younger because she wanted to work with animals, while Mary aspires to be an adolescent therapist who incorporates pets into therapy. So it isn’t surprising that both elected to adopt service dogs.
Nicole recruited Pippi last summer to help her sniff out gluten in foods. It was love at first wag: "She was so small, but her head was so big. I knew immediately she was the one I wanted." Mary trained her first dog, Kasida, to check for seizure symptoms. Two weeks in, the German Shepherd saved her life. "I was having a bad seizure where I fell off the bed and my hand was stuck under my chin," Mary says. "Kasida alerted my mom, and now I have her paw tattooed on my right arm."
When Kasida retired from service dog duties (she’s still part of the family), Mary adopted Abraxos to provide the same support. Both friends say their dogs always come to the emotional rescue. "Pippi gives me a sense of purpose," says Nicole. "Whenever I’m feeling sad, she knows to immediately get up in my lap. It’s unconditional love all the time." Mary agrees: "With my dogs, it’s like I’m not alone anymore. I can get through my life as long as I have them."
It was ultimately Abraxos who brought the two together. Last September, Nicole was searching the #servicedog hashtag on Instagram and discovered Abraxos’ profile—and ultimately, Mary's. Back then, Nicole was struggling to pinpoint the root of her health problems, and when Mary posted a picture of herself with a feeding tube and wrote about her own chronic conditions, the strangers struck up a conversation. "I thought maybe she could tell me what was wrong with me," Nicole says.
Before long they realized they’d already been following each other on Tumblr for over a year, and back-and-forth Instagram comments quickly turned into all-night texts. "I wanted someone to get what I was going through because no one else did," says Nicole. "That was Mary."
Not only did Mary refer Nicole to her GI doctor in Athens, but she also recommended Kate Farms when she went on the NG tube. Now the two refer to each other as "tubesties." In turn, Nicole became a sounding board for Mary.
"Nicole understands me on a completely different level that other people don’t," she says. "They can live relatively healthy lives and do anything they want, but we can’t. She understands the struggles that come along with being chronically ill, and she talks me through them. And she’s there to listen to the random thoughts that run through my head at 3 a.m. I haven’t met anyone else who lets me be 110 percent of myself around them. It’s incredible. She’s incredible."
A mere 70-mile stretch of central Georgia separates Nicole and Mary (and Pippy and Abraxos), so you can bet there’ll be more meetups in the future. Next on their agenda: "We’re going to go to the mall and make Build-a-Bears together," Mary says. "We’ll give our stuffed animals their own feeding tubes."
If Kate Farms is part of your wellness journey, we'd love to hear about it.
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