“I was diagnosed with a congenital condition called Chiari Malformation at age 16.” says Jennifer Lake, an UP community member since 2014.
“For seven years, I was sick without any idea of why. And, it turned out that this Chiari Malformation had been the answer all along. Sometime throughout the seven years between diagnosis and treatment, I developed a secondary problem. My cranio-cervical junction had become unstable, allowing my second vertebrae to migrate upwards and backwards, compressing my brain stem. Essentially, my skull had begun to slip back and forth on my spine. The doctors sat me down and said, ‘You’re going to need brain surgery.”
In July 2014, Jennifer underwent ten hours of brain and spine surgery to correct her condition. Upon learning the surgery to her spine stretched her tethered spinal cord (causing irreversible damage to the nerves that control her bladder and legs), she underwent another surgery in May 2015 to ensure she could walk in the future. While there is no cure for many of the medical complications Jennifer faces, she has found a variety of ways to help manage her chronic illness.
“While I have had some extreme treatments for my conditions, including brain and spine surgery, I have found that the biggest factors in changing how I feel from day to day are being active, eating well, and getting enough sleep.”
For Jennifer, tracking these factors day to day was made easier by using an UP24 tracker that monitored her daily activities. However, when Jennifer began reporting that she was having difficulty sleeping and always woke up tired, her cardiologist wanted her to move to a more advanced model—an UP3 tracker. Jennifer explains: “My cardiologist said, ‘We need to see a better picture of your heart-rate over a 24 hour period, not just when you take your pulse.’”
“Not being believed that you’re sick is the hardest part of having a chronic illness. My UP3 tracker is really benefiting me in helping articulate what’s going on with my body to my medical team. In the past, when I’d call my doctor saying that “I feel my heart is really fast” — his answer was to have me make an appointment for 2 weeks out. Unfortunately, when I’d go into the office, the issue that was plaguing me wouldn’t be present, and it made it hard for a doctor to pinpoint the issue.”
“With the passive heart rate tracking on the UP3 band, I have actually been able to work with my cardiologist to adjust medications without having to repeat expensive and time consuming Holter monitors every few weeks. Likewise, it was actually the sleep data coming from my UP3 band, coupled with a strange Holter monitor study, that pushed my doctors to order a sleep study which showed that I had two sleep disorders—Central Sleep Apnea and REM Movement Disorder.”
“While I would never trade a wearable device for standard medical care, my UP3 tracker has been hugely insightful for my medical team. It’s the difference of going to my doctor and saying, ‘I am hitting HRs of 120 while I am sleeping,’ rather than ‘I always wake up tired.'”
Since she started with UP3 tracker, Jennifer has been able to tweak various factors and triggers which influence her overall health and improve her quality of life. She explains, “My doctors wanted me to up my fluids, and drink less caffeine, but they couldn’t really see the impact on my heart rate with a journal because the data that I was capturing was subjective. With my UP3 band, I could capture data when I wasn’t thinking about it, which is actually what the doctors needed the most.”
“Ultimately, I did end up upping my fluids. My heart rate was more stable during the day when I was drinking a lot of water. I had already been drinking about 8 glasses of water day. However, I found that if I drink 10 or 12 a day my heart rate was more stable. Since I’m not as good about logging all my food as I am about my triggers, my teammates through UP helped give me more encouragement to track food.”
Since her diagnosis of Central Sleep Apnea, Jennifer has also been using the Automatic Sleep Tracking on her UP3 band to make sure she gets the amount of sleep right for her. “Before I got my UP3 band I found I was sleeping too much, and that I actually feel better when I sleep a little bit less than most people. On days where I slept 6 hours, my proportion of REM was higher. I’m able to hit the right amount of sleep each night using the smart alarm on my UP3 tracker. This helps me wake up a bit earlier, and helps me avoid waking up during REM sleep.”
Of course, like all of us, Jennifer doesn’t always make the healthy choice. However, she cites that her UP3 helps her get back up after falling short. “Sometimes I don’t make the right choice, but it’s my choice based on what I want, and what’s okay for me today,” she says. “Feedback for me is so huge, and I’m so easily rewards motivated. The gamification is huge with this device. Even when I do something wrong; Smart Coach always puts a positive spin on what I’m doing, which is really motivating in helping me make a better choice later. I used to be really active, but when I got sick, and after my surgery, I got pretty lazy and stopped going to the gym. My UP3 tracker helps me see how active I really am everyday. It’s been really helpful; the more activity I get, the better I sleep.”
Today, Jennifer is embracing life and living at its fullest and healthiest. She currently attends graduate school in New Mexico where you’ll find her hampering down on homework, enjoying the beautiful outdoors, and doing photography. A natural documentarian, Jennifer works on an international creative team for a scrapbooking company called Project Life. You can get to know her better on her inspiring Instagram @sunlightandair and personal blog.