Since 2005, Crys Worley has had 11 non-elective surgeries for multiple medical challenges. How she manages these challenges is a lesson in patience, courage and ultimately believing in yourself.
By Joe O’Donnell
Her heart, her back, her brain. All of these have been impacted by medical challenges, one time or another, in the life of Crys Worley.
She was born with ventricular septal defect (VSD), atrial septal defect (ASD), and mitral valve prolapse (MVP), which caused irregular heartbeats throughout her life until it was repaired. “My cardiologist sent my medical records to Dr. Pacifico at UAB who took on my case. As the weeks went on my breathing became even more difficult and I would have black outs. In 2005 I eventually ended up needing open heart surgery. I was 23 years old, a mother to a toddler diagnosed with autism, and a baby learning to walk,” she says.
Worley, now 36, a single mother of two teenage boys and founder of the A.skate Foundation which helps kids cope with autism through skateboarding, describes the searing experience of being in pain.
“I have scar tissue build-up throughout my body, inflammation and nerve damage that one could not begin to understand. A sternum that’s inflamed with costochondritis. A back that feels like fire is burning throughout the bones in my spine and many other challenges that contribute to a life that requires one to be in long term pain management,” Worley says.
She has been prescribed pain medication for much of her life. “I have been prescribed pain medications on and off throughout my life but knew that I did not want to have a life of being on pain medications forever. I have always loved yard work that involved using a chain saw, cutting grass, clearing out brush, etc. For many years yard work was a form of ‘exercise’ that I was able to do on a regular basis, in order to keep my core strong along with swimming. I was able to stay off of pain medications and simply get by with epidurals and continuing to condition the mentality that I will never be pain free,” she says.
Then, Worley says, she discovered juicing. “I decided to do a 21 day ‘juice cleanse’ to support a friend, but I had also been told that it may help with the pain levels in my body. That day and that decision changed my life forever. During those 21 days, I began drinking 64 ounces of cold press juice every single day and I felt like a new human. My most invasive back surgery to come was scheduled a week later and I almost canceled the surgery because I felt like I could manage life pain med free. After speaking with my surgeon, reality set in and I did not believe that it was realistic to think that I could drink 64 ounces of cold pressed juice every day for the rest of my life, and so I went through with the next back surgery.” She calls it one of the biggest mistakes of her life.
The bone disease that affects her spine started showing symptoms when she was 13 years old. Her teenage son has also shown signs of the disorder. And her grandmother, whom Worley credits with being a major stabilizing factor in her life, also had difficulties with back pain.
Finally, Worley’s back problems culminated in a surgery to fuse part of her spine.
“I was supposed to be in the hospital for two days, but complications kept me there for several weeks. The left side of my body was not functioning properly and it took days before I could sit up on my own. For the next five months, it was like having to learn how to walk all over again. The pain was unbearable at first and medications were not helpful. Once I was out of the hospital, settled in at home and in my new routine of learning how to take steps again, I started juicing again. I have stayed on the same cold press juice diet since January 2016. I drink half a gallon of cold press juice nearly every day and my body can tell if I skip a couple of days when life gets busy or I am on the road. I eat fish, raw and cooked veggies, fruits, Reese’s and Twix, as well, but I know better than to skip my juicing routine. Had I known that I would have the will power and mental strength to continue having cold pressed juice as a part of my every day life, I would have never allowed a doctor to fuse my spine at that time. To date I have more added problems from the back surgery than I have ever had, but there is a science to ‘being healthy’ and ‘feeling good,’” she says.
In the last couple of years, Worley has been thrown one more health curveball, this time with her brain. “I became more and more forgetful with things people would converse with me about. I was in a band with my sister for 10 years, and I couldn’t remember the words to songs. I felt like I was going crazy and doctors all said that I had a stressful life and needed to remember to take care of myself so that I could take care of my family. I knew deep down that something was wrong.”
A new spinal surgeon that she connected with confirmed her feelings that the spinal fusion surgery was not the best route for her, and helped Worley discover her memory loss had an ominous cause.
“After weeks of tests and researching my medical history, my neurologist brought me in to tell me that I have cerebral microbleeds on my brain as well as a venous abnormality. A cerebral microbleed is when a blood vessel in the brain bursts and leaks a small hemorrhage onto the brain and that blood sits there with no way out and eventually kills off brain cells it may be in contact with. Cerebral microbleeds have been connected to early onset Alzheimer’s and dementia. Over the past 13 years I have been prescribed many NSAID medications, blood thinners, and heart medications. These medications have added to the collection of small hemorrhaging causing much of the cognitive, processing, and memory issues and migraines,” Worley says.
“I now have a treatment plan and see a neuropsychologist several times a year. I am given brain exercises to perform that have helped put a standstill to the issues I was having for many years. My doctors are able to keep up with my progress through apps and life has been so much easier in all aspects.”
And she continues to learn what works best for managing her pain and health challenges. “I would love to say that I am medication free, but I will never be medication free. I take medications when I need them but I would be on many more if I were not living a healthy lifestyle with swimming and giving my body the nutrients it needs through cold press juicing. This year I discovered another incredible alternative to pain medications,” Worley says.
She was in California once and was unable to have a prescription she lost filled. “So I turned to CBD oil. I had taken CBD oil before; however, only CBD derived from hemp is legal in Alabama. It does not even come close to helping with chronic pain the way that medical grade CBD oil in California did.
“Because of the state we live in, I am still able to take CBD oil, but its pain management efficiency is 10 percent compared to the relief I was able to have while in California. But I will take that 10 percent, continue swimming and my healthy food routines, while now advocating for our state to not be the very last to come on board with using CBD as a means of medical treatment,” Worley says.
It has been a long road for Crys Worley with plenty of challenges along the way.
“On difficult days, I want to crawl in a hole and cry, but instead I isolate myself in order to take care of myself, so that I can take care of everyone else. I will eventually have another open heart surgery one day. I will have spinal issues for the rest of my life and the nerve damage in my back, hands, arms, and legs will be there forever. I will need to keep my brain sharp for the rest of my life in order to not regress into memory loss and other brain issues. There will probably be more challenges to overcome as I get older, but I have never allowed any of this to overcome me and my responsibility as a parent. I hope that my boys one day look at me and see a fighter.” •