September is Chiari Awareness Month, and once again, the Village of Wellington is lighting its clock tower purple in honor of the observance — and also to honor local resident Jordan Ray, who has taken her battle with what is called Chiari malformation and turned it into a business designed to help others.
Ray knows what it’s like to track a chronic ailment. At age 17, all her hopes and dreams were on being a college softball athlete. But one stretch of her neck changed the course of her life.
Ray was diagnosed with Chiari malformation after turning her head during a softball game. On April 13, 2015, she was playing third base when the batter bunted. She began running toward the ball and blacked out. The pain that followed was an intense pressure in the back of her head caused by structural defects in the base of her skull and cerebellum, the part of the brain that controls balance.
After a life of physical activity and good health, her world was turned upside down in an instant because she had to begin fighting this chronic disease.
Saddled with doctors’ appointments and questions asked by her doctors, Ray began using a logbook she designed when her mother was diagnosed with cancer. Every day, she would write down specific data that would track her pain and symptoms. This would help the doctors she was seeing understand her progress and challenges. The logbook was becoming a lifesaver.
The most common symptom of Chiari malformation is a headache, which begins at the back of the head and neck and radiates upward. The pain is often made worse or can be brought on by coughing, sneezing or straining, and, like with Ray, can cause loss of memory.
Normally, the cerebellum and parts of the brain stem sit above an opening in the skull that allow the spinal cord a place to pass through it, but in the case of Chiari malformation, the patient has a malformed area at the base of the skull.
In Ray’s case, she had surgery to correct part of the malformation but now must monitor the scar tissue that has formed. Now 22, she has to offset physical activity in exchange for comfort. She no longer dreams of playing softball but thinks about living pain free while achieving other goals.
“I was born with [Chiari malformation], and we just didn’t know it,” Ray said. “It is a serious neurological disorder where your cerebellum extends into your spinal canal. Your cerebral spinal fluid gets blocked from your brain. So, as I was running for that play, I hyper-extended my neck and my cerebral spinal fluid got blocked from my brain. That’s why I blacked out.”
Ray is determined to do what it takes to maintain her health. She is moving on with a positive attitude and has started a company to promote her unique medical logs. She wants to help others who may be stressing out about a disorder that needs to be logged and tracked, especially when dealing with a chronic disease.
“When I first got diagnosed, I saw multiple doctors,” Ray explained. “It got to a point where I was just so frustrated, so confused, because I couldn’t remember what was going on day to day to accurately tell the doctors. I felt like my appointments were going nowhere. They didn’t seem to care because I wasn’t able to tell them what was going on. So, after a few appointments, I saw the need for the medical log. I saw that it was going to eliminate the scrambling of a few days trying to remember what I should say at the appointment.”
Using her logbook, Ray is more prepared.
“When I go to an appointment now, I have all of my questions ready,” she said. “It’s something I don’t have to worry about any longer. Before I had the medical log, I was stressed out. Now, I have an all-in-one option.”
After needing her logbook for both her own medical concerns, and her mother’s previous health battle, she realized that the time was right for Limitless Medical Logs, the company she created to market the concept.
“I thought of the idea when my mom was diagnosed with breast cancer,” Ray said. “I saw her struggling at her treatments and appointments. When my health failed, right away, I decided that I need to move forward with this. I launched the company when I was 20. It has taken me two years to get it up and running.”
Ray believes that her logbook will be as useful to others as it is to her.
“I needed my logbook every day,” she explained. “When you have the type of illness like I have, when you are in constant pain all of the time, dizzy, nauseous, I needed to know if I did something the day before that triggered all of this. I may have physical therapy today, and tomorrow I want to see how I react from the physical therapy. Being able to go back and look at this information, you are able to honestly take full control of your health.”
For more information about Jordan Ray’s Limitless Medical Logs, visit www.limitlessmedicallogs.com. My Community Pharmacy in Wellington also sells the product.